tag:blogger.com,1999:blog-33959808354257666612024-03-05T04:28:57.690-08:00She {chooses} joyI can't always choose my circumstances, but I can choose to find joy in the midst!Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.comBlogger189125tag:blogger.com,1999:blog-3395980835425766661.post-91100271213947567202014-05-06T01:19:00.000-07:002014-05-06T01:19:27.682-07:00Reflections on 13 Years of Extended Life<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7MLiBlpRmCAFlNs6RVdJuW8shKd61MeHHJh82EwzdN26Eaxv068nqhsTzOIg8ulCafes9nEk3g2wzdm7RrEKIdgDyEGZVdlh14zzNJZ0TWavctv58_4BQ87ZYRTzFEef_ma4chQ3m7gqi/s1600/20140315_135717.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7MLiBlpRmCAFlNs6RVdJuW8shKd61MeHHJh82EwzdN26Eaxv068nqhsTzOIg8ulCafes9nEk3g2wzdm7RrEKIdgDyEGZVdlh14zzNJZ0TWavctv58_4BQ87ZYRTzFEef_ma4chQ3m7gqi/s1600/20140315_135717.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thirteen years of ups and downs, and God is faithful through it all. My life is abundantly blessed!</td></tr>
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May 3rd is always significant to me because that's the day my beautiful donor passed away. That's the day I know her family is remembering their special daughter and missing her extra. I had the opportunity to meet my donor's amazing mother several years ago, and it's a blessing to stay in touch with her and share my life, the life that I <i>get to </i>live, because of her family's decision to make Ashley an organ donor even while they were right in the midst of experiencing loss.</div>
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If you would like to read about Ashley, or send some love her family's way, here is the website they put together to honor her life: <a href="http://ashleybergman.com/" target="_blank">In Loving Memory of Ashley Bergman</a><div>
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May 5th is significant, because it is the day of my liver transplant in 2001. Technically I went in to surgery about 10pm on May 4th, but it was a twelve hour surgery, and most everything happened and I woke up from it on the 5th. Yep, Cinco de Mayo! But no margaritas here :)</div>
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It is always a day of remembering those weeks so sick in the hospital, then one morning the whole transplant team filing into my room to tell my mom and me, "We have a liver for you." That day was a whirlwind of preparations but also a fog covers the memories, no doubt because of the "survival mode" my body was in, and the pain meds I was taking at the time. I remember (or at least I'm told about it) we watched "You've Got Mail" in the evening, and then it was time. About 10 pm I gave my goodbyes and hugs, a little wave, and they wheeled me away to the OR. I think I had the lucky end of the deal, going off to a twelve hour nap (as intense as that surgery is, praise God for anesthesia), while my family and friends and pastor and neighbors waited, took shifts sitting with my mom, prayed, talked, dozed, and waited.</div>
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<tr><td class="tr-caption" style="text-align: center;">This is a photo of the scrapbook page showing me working on a craft project in my hospital bed a day before transplant, and a photo of my old [nasty!] liver. A couple of family inside jokes: we always say my old liver resembles a barbecue chicken. Yikes! And I only have pictures of my old liver because I asked if I could keep it in a jar after surgery (Lol!), and of course they said no, but to make up for it my transplant coordinator brought a disposable camera into the OR.</td></tr>
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I heard stories that my incredible surgeon, who is still dear to us this day, had operated on a baby boy for hours before my surgery, got a break to eat a hamburger and take a shower, then went in to start my operation. They had to "call for backup" from the doctors over at the university hospital (I was at Children's) because my sick liver was so enlarged from scarring, they could hardly get it out. A break or two I'm sure they took in those long twelve hours, and my transplant coordinator nurse would go out and update my family. Finally, the new liver was in, I was all sewn up, and off to the ICU/recovery. I don't know if it was shortly after that, about 10 am May 5th - or if I slept a whole day and it was May 6th, but I have a memory of waking up with the breathing tube still in my throat and being so upset because that was my one main fear going into this surgery: how do you not breathe when you're awake and able to breathe? how do you let the machine take over when you're conscious and want to do it on your own? And they'd assured me, "you won't even know it's there, by the time you're awake it will be out."</div>
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Well, of course I don't remember the experience now, so however traumatizing it may have been, it's all no big deal and a funny memory today. But at the time, I was getting so agitated and trying to talk, the nurses gave me a notepad and pen -because talking is what you DON'T do when you have a breathing tube in your throat and lungs- I was determined to get my message across. So what I have now are these funny pieces of notepaper in my scrapbook, with scrawly writing where I had kept beginning the sentence, "Why am I awake?" or sometimes, "you said I wouldn't be awake!" but only half the words were composed before they trailed off the page in a squiggly line, because I kept falling back asleep! It is very amusing to me now :) I'm glad the nurses saved those pages!</div>
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<tr><td class="tr-caption" style="text-align: center;">June 2001 - home at last!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Me and my friend Christine - we've known each other just about our whole lives! I look back at these pictures and think, "God bless all my visitors, EVERY time I've been in the hospital, for not walking in, seeing how awful I look, and fainting or making a terrified face or just plain running away! Courageous friends :)</td></tr>
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My transplant is such a huge piece of my testimony, of putting my trust and my life in the much more capable than me hands of Christ. When I was recovering from my transplant, about three weeks post-surgery, in my hospital bed in the dark by myself, the fears started to creep in. I had made it out of surgery, but what about next week? Next month? Years down the road? There is so much to learn before and after a transplant, about caring for your suppressed immune system, staying away from germy risky places and sick people, memorizing your boatload of medications and their names and doses... Hand washing, what pets you can and cannot have, wound care, lab blood draw schedules, post-surgery check ups... Information overload and for a detailed, bottom line person like myself, I was letting it all get to me.</div>
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I had asked my mom to bring my Bible to me that week, and I had put it in the drawer of my little over-the-bed hospital table. When these fears started creeping around, I had the idea, "get out your Bible."</div>
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I think back on this as a remarkable thing. Because, while I had grown up in church, I had not really understood or was even aware that "following Christ" as an active, constant, rhythmic lifestyle was a 'thing' that people did. I went to church because I wanted to, not to check a morals box or to feel good, but I didn't {for several reasons I see now} realize that it [LIFE] was <b>all about Jesus</b>, and that Jesus can and will and wants to be involved in <b>every moment</b> of our lives, not just in a churchy building or event.</div>
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So back to my dark hospital room ... I got out my Adventure Bible in it's canvas zippered turquoise case ('90's Sunday school trends, anyone? :) ) and opened it up. I think I said a prayer, asking God to help me, that I was afraid and needed some encouragement. And wouldn't you know it, the page my Bible opened right to was Luke 8, and standing out on that page in bold purple writing was <a href="https://bible.com/111/luk.8.50.niv" target="_blank">Luke 8:50</a> - "don't be afraid, just believe." (NIV)</div>
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See, my little Adventure Bible had these purple boxes along the columns where they'd take a verse from that chapter, and enlarge the font and make it a page feature. Some of them had a little bit of kid-life-applicable commentary. This verse happened to be out of the story of Jairus, who found out his daughter had just died, and Jesus responded with assurance, "Just have faith, and she will be healed." (NLT) He went back to his home with him, and raised the daughter back to life. It's a great story, but it was just that first verse that was bolded in my little kids Bible, and that little verse jumping up into my face and down into my heart as an immediate response to my little prayer of, "God, if you're here, help me not be scared. Because this feels scary." </div>
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That event sticks out in my mind as the beginning of my "real" Christian life. I went to summer camp a few months later and had an even closer encounter with God, another one of those, "yep Emily, I'm definitely real, and I see you and hear you... what are you going to do about it?" events.</div>
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All that to say, my liver transplant has great meaning to my family and friends and most of all to me, as my "second birthday" and my "new lease on life," and the start of the healthiest, most exciting decade I've yet lived. But it also has great meaning as a special piece of my testimony, and a spiritual birthday of sorts, and an incredible opportunity God gave me to face my mortality, and respond to that with Him or without Him. I'm so glad I reached out to Him and jumped into this journey of faith. No regrets, ever ever ever!</div>
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Because of my donor and my transplant, I have been able to do so many special things. The first is obvious:</div>
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1) survive. Then there's a lot more...</div>
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2) graduate high school</div>
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3) go to college - and in so doing, 4) meet lifelong friends, 5) fulfill a dream by being on the crew team, and not just as a rower but a coxswain! Incredible lifetime memories there!</div>
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6) advocate and speak about organ donation</div>
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7) travel with youth choir on two mission trips</div>
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8) serve on a youth ministry team, meeting amazing people, learning from great examples so much wisdom about life, still having an impact on me today,</div>
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9) met my husband on said ministry team :)</div>
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<tr><td class="tr-caption" style="font-size: 13px;">I don't think we were married yet here, but just a few weeks away from the wedding. My amazing man always by my side. Here we are playing cards during my first Remicade treatment for colitis</td></tr>
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10) get married!</div>
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<tr><td class="tr-caption" style="font-size: 13px;">1/27/07</td></tr>
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11) enjoy the ups and downs and wild adventures of our married life, me being sick for far too much of the past seven years, but experiencing so much blessing together, and Ry never leaving my side,</div>
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<tr><td class="tr-caption" style="text-align: center;">March 2007, our second "monthaversary." What IS it with us and spending special occasions in the hospital?!</td></tr>
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12) moving and buying a house, and sticking it out and learning so much about contentment, patience, choosing our battles, as we faced crazy mold issues and unplanned complete remodels of every room in our home -and we're still married and friends after it all! ;)</div>
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13) getting planted at the best church in the world where I've gained the wisdom needed to survive these last few chaotic health-challenged, finance-challenged trying years,</div>
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14) experience pregnancy, once very briefly, and another time to full term :)</div>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3JRwWetCrSBcfEiEpg4mLbjQMi7hSqSPLKM8Ep1nXz8rvXP8YBDrljkDTx3ypBEmOiClVdgTOLgN2yCN_5FPsCQ9zyIpMXI0PC_jBSL6EKs7MmsYWkexYatQ2GiXCbXmLN0RzNIICIf4E/s1600/296676_2333623427023_1442932669_2714885_1176107_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3JRwWetCrSBcfEiEpg4mLbjQMi7hSqSPLKM8Ep1nXz8rvXP8YBDrljkDTx3ypBEmOiClVdgTOLgN2yCN_5FPsCQ9zyIpMXI0PC_jBSL6EKs7MmsYWkexYatQ2GiXCbXmLN0RzNIICIf4E/s1600/296676_2333623427023_1442932669_2714885_1176107_n.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">A week before we became the Three Musketeers! August 2011</td></tr>
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15) Give birth to an absolute miracle baby girl, Victory,</div>
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16) and... I realize there are just too many great things to list. </div>
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<b><i>But, Not</i></b> because I've had the endurance to run a marathon yet and add that to my list (running a marathon has been on my bucket list since high school cross country days), or because we currently have the resources to travel to beautiful places that we plan to one day, like Hawaii, Austria, and our own USA's Yellowstone Park (more bucket list).</div>
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<b><i>But</i></b> there are plenty more simple things to list, because <u>I choose to find joy</u> in <b>every day</b>. In <b>every experience</b>...</div>
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One of my greatest heroes, someone whose wisdom I respect and glean all I can from, has taught me this very important clarification to the well-known verse 1 Thessalonians 5:18. It's great advice for life, these three instructions in <a href="https://bible.com/111/1th.5.16-18.niv" target="_blank">verses 16 through 18</a>: <i>Rejoice always.</i> <i>Pray continually.</i> And here's the kicker a lot of us don't like: <i>Give thanks in all circumstances.</i> The important clarficiation is, he <b>doesn't</b> write, "Give thanks <b>FOR</b> all circumstances." He writes, "Give thanks <i style="font-weight: bold; text-decoration: underline;">IN</i> all circumstances." </div>
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One of the simplest ways I remember this is from a story I saw once about a forest fire. The forest was just decimated. The wildfire had burnt everything green and beautiful away. The wildlife was gone. It was a beautiful sanctuary turned ugly. And then the focus turned to a little green bud, shooting up out of the ground. New life after a tragedy. Fresh, hope-filled spring coming up through the ashes of heaviness. No one would stand there and say, "God, thanks for the wildfire that ruined this landscape and killed the life that was here." That would be crazy! But obedience to 1 Thessalonians 5:18, and learning to live in that flow of noticing the praise-worthy things, and expressiing gratitude for them -- that person would stand up and say, "God, this forest fire made my heart sink. But I see this flower springing up from a silent, lifeless forest floor. And it lifts my spirits, and makes my heart leap. <i><b>Thank You, God,</b> for this beauty in spite of the ashes</i>."</div>
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We all face seasons and experiences in life that are so hard, so sad, so gut-socking and painful. But, our greatest power is our power to choose. Whether your life up to this point has been a nice coast, or it's been a tooth and nail gritty fight to survive, I challenge you to choose gratitude. "Give thanks IN all circumstances." </div>
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Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-4351592682282182432014-05-04T18:15:00.000-07:002014-05-04T18:15:07.628-07:00Blood Transfusion #329<span style="font-family: inherit;">Ok, ok, I have not had 329 blood transfusions. Sometimes it feels like it though :)</span><br />
<span style="font-family: inherit;">I've got one more to add to the tally total!</span><br />
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<span style="font-family: inherit;">I <a href="http://shechoosesjoy.blogspot.com/2014/05/where-to-begin-summary-of-recent-events.html" target="_blank">mentioned in my last post</a> that due to some high blood clotting times (PT and INR are twice what they normally should be - because a sick liver doesn't make enough clotting factors) and a colitis flare, together creating the perfect storm for anemia, my H&H (Hematocrit and Hemoglobin) were dropping steadily over the last two weeks. They were 27 & 8 respectively last week, and Wednesday evening's labs came back at 23 and 7. The Infusion center where my hematologist sets up my outpatient transfusions was booked up until Monday, and no one wanted me to end up in the ED with a critically low blood volume if the colitis and/or clotting didn't improve. We had enough of those hemorrhagic shock experiences last year to last several lifetimes!</span><br />
<span style="font-family: inherit;">So the only option was to go in to the short stay/observation floor and get the blood that way. There was some miscommunication between doctors, nurses, and my Ry and me - we waited all afternoon for a call to tell us when to come in on Thursday, and finally I called about </span>7 pm<span style="font-family: inherit;"> and learned that they'd been waiting for me! Oops! So we threw together our bags, dropped off sweet Vicky for her </span><i style="font-family: inherit;">very first friend sleepover!</i><span style="font-family: inherit;">, and headed to the hospital. </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: small;"><i>It had been a BEAUTIFUL, HOT day in Seattle for only being May 1st. We enjoyed the last of the sunset on the drive up, and I grabbed this shot of the Space Needle from the Whole Foods parking lot. Because, we had to stop for gluten free snacks, of course!</i></span></td></tr>
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<span style="font-family: inherit;">Thankfully the attending doctor had put in the order for blood once they knew I was coming, so it didn't take the six to eight hours it normally does for the blood bank to find a match for me - we were concerned initially that I wouldn't start my transfusion til dawn, </span>ha-ha<span style="font-family: inherit;">! God is always working behind the scenes, and I'm so grateful for those seemingly little things that make a big difference. While I was admitted, chatting with the doctor, I had so many good laughs. When you've been around this block a few times, certain things about the hospital or procedure or even my own health history become almost like inside jokes, and it was so fun that the room had an atmosphere of hilarity!</span><br />
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<span style="font-family: inherit;">There were actually three different IV nurses waiting around at different times to put in my IV - this is ALWAYS a blessing when you can have one of them put in your IV. It's been hard for me to see my arm veins go from a lifetime of being "the easiest blood drawn and IV poke ever" to more frequently a "hit or miss" patient. Man does it hurt when things with the IV go wrong! I just got so much scar tissue from last year's ordeal with hundreds of pokes, while being on Prednisone through that season. Well when I was finally admitted and in my cozies, one of the IV therapy nurses came in - the most cheerful of all three; I don't think he stopped smiling! - and it was the easiest IV poke I've ever had. I hardly felt a thing. Thank You for those little things that are big things at the time, God. :)</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGrE1AoGxFYEGQDb1JAP7gZ3pJASoV6LEaNC39ze8G2vFiN3SZM_779raGwzrD22bk9qSPDbvV6hScqNlJGm3z-J-bIXZ1De1SqAc2PiwGDB3uEPLS65NWXiU_-bvCy_hvNrY5_TpeMeAF/s1600/20140502_014848.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGrE1AoGxFYEGQDb1JAP7gZ3pJASoV6LEaNC39ze8G2vFiN3SZM_779raGwzrD22bk9qSPDbvV6hScqNlJGm3z-J-bIXZ1De1SqAc2PiwGDB3uEPLS65NWXiU_-bvCy_hvNrY5_TpeMeAF/s1600/20140502_014848.jpg" height="225" width="400" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: small;"><i>Catchimg up on my reading... I'm in this habit now of reading at least five books at once, so I chip away at each one slowly in rotation. I read some more of Christine Caine's "Undaunted" during this transfusion. She gives an amazing personal testimony, and challenge to step OUT of comfort to really meet the deep needs of the world; I am loving this book. Oh yes, and with permission (actually, full on encouragement!) from my nurse, you can see I painted my nails hot pink :)</i></span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtMGxJXXmLcubVvHoTtcWIA7GjFbfhnYAWAq59vrqCovDJcsk-kfCFGt7MtdIZWsAgJUvZ2AvkEqJLQ1cq6sf_bUHdL64r2x8Ji9X0PgJpsMdMsclpw8mdt8GXZFSqLvCTJJL6-V0eR3nu/s1600/IMG_20140502_002743.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtMGxJXXmLcubVvHoTtcWIA7GjFbfhnYAWAq59vrqCovDJcsk-kfCFGt7MtdIZWsAgJUvZ2AvkEqJLQ1cq6sf_bUHdL64r2x8Ji9X0PgJpsMdMsclpw8mdt8GXZFSqLvCTJJL6-V0eR3nu/s1600/IMG_20140502_002743.jpg" height="640" width="425" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: small;"><i>Thumbs up, all is well! Especially since I had my bacon blanket, cozy sweats, and new coloring book and markers from home ;)</i><br /></span></td></tr>
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<span style="font-family: inherit;">The blood arrived before midnight, I think, and I settled in to work on my new "grown up coloring book" as I call it. I've recently gotten back into coloring as it's always been a relaxing thing for me. My mom used to give me coloring books in high school and college during finals week, for a brain break of sorts. Smart mom ;) These little "getaways" as we jokingly call them, are the only getaways Ryan and I go on anymore - an overnight at the hospital, woohoo! But we laugh and say, "hey we have a city view! and room service! and turn down with all the warm blankets we could want!"</span><br />
<span style="font-family: inherit;">Another favor-moment: they ordered a cot for Ry to sleep on, and it didn't come, and it didn't come - and finally when he put sheets and blankets on the fold-out chair next ot my bed, trying his best to make it comfortable - the cot arrived! My Ry has become quite the hospital-sleeping-chair reviewer </span>connoisseur<span style="font-family: inherit;"> these past eighteen months, and the fold out chairs they have just don't cut it for my tall muscle man! I was so glad he could have an actual bed (if you can call a cot a bed?) because he needs his sleep! Caretaker of our treasure Miss V and me, full time dedicated worker at his job, committed wholeheartedly to serving in the House of God as much as he's able to while juggling everything else... and he's just all around a BOSS at loving and serving others and conquering life! </span><b style="font-family: inherit;">Ry, if I haven't said it this week, you are my hero! Xoxo</b><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVsmEKJp5kZbM8IAKRt8IulUCAfvdTogEAPRtbdp04Vo011F7cs_IuKgaemtQRQbR_NpyiGVa1HeyEuKt83TXwfP9Q01W-ElpfvgYAUAjVJyUTMRbc2czxvh8hSpfjT4g0HzZ_12ye4g7s/s1600/20140502_080901.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVsmEKJp5kZbM8IAKRt8IulUCAfvdTogEAPRtbdp04Vo011F7cs_IuKgaemtQRQbR_NpyiGVa1HeyEuKt83TXwfP9Q01W-ElpfvgYAUAjVJyUTMRbc2czxvh8hSpfjT4g0HzZ_12ye4g7s/s1600/20140502_080901.jpg" height="225" width="400" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: small;"><i>We woke up to this funny tapping on our window, that kept tapping and tapping. My room was right against the roof of another section of the hospital and two seagulls were parked outside the room eyeing our snacks through the window!</i></span></td></tr>
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<span style="font-family: inherit;">I received two units of blood altogether overnight, and then as is their custom, barely at dawn someone from the lab came by to do a draw. My Hematocrit came back at 27. This was a little bummer for me, because one blood unit typically raises my count three points. If I started at 23, it should have </span>technically<span style="font-family: inherit;"> been at 29 or 30. But </span><b style="font-family: inherit;">27</b><span style="font-family: inherit;"> means I had dropped down to around </span><b style="font-family: inherit;">21</b><span style="font-family: inherit;"> when I was admitted. </span><br />
<span style="font-family: inherit;">I have got to get my <b><i>STEAK on</i></b> this week, red meat every night! and NO more bleeding! Calm down INR and PT, come back down to normal range. And liver, you are healthy! Make those clotting factors! You've done it so well for so long - you can do it again now!</span><br />
<span style="font-family: inherit;">...Don't you give your organs pep talks? I do, and find it quite helps :)</span><br />
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<span style="font-family: inherit;">I ate breakfast and was thinking it was about time to get ready to go home, when the nurse came in and said the doctor overseeing my stay wanted me to get a Magnesium infusion, because my level was at a "critically low" point. I got a little upset, because this seems to happen every time I go in to the hospital. I'm expecting to be in and out just dealing with the issue we need to address, and then the doctors who oversee me but don't really know me or my health patterns, see things on my labs and want to keep me and do tests, treatments, etc. I sort of "negotiated" with them, because we needed to go pick up Miss V and I really wanted to go home and get some rest (I only got 90 minutes of sleep all night!). I agreed to go in to the outpatient infusion center close to my home that afternoon, if they would let me be discharged. So that's what we did.</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: small;"><i>Same day, different IV, different arm. Darn protocol - I had to have the good IV from my blood tx removed to leave the hospital, for just two hours or so, and then another IV put in my other arm for the Magnesium at the infusion center!</i><br /></span></td></tr>
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<span style="font-family: inherit;">All worked out, except later that night I remembered why I refused Magnesium sulfate IVs the past few times they wanted to give me them... I had suffered an absolutely awful reaction to one of these last year, Benadryl did not even help the itching and burning on my skin. It was terrible! And that same thing happened to me at home Friday night. :( But it's phasing out of my system more every day, thankfully.</span></div>
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<span style="font-family: inherit;">Needless to say, it was a hectic twenty-four hours, but the important part is that I was able to get treated for things that needed treatment, and my sweet family ended up back together at home Friday night, safe and sound.</span></div>
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<span style="font-family: inherit;">I'm grateful for the grace of God that carries us through these semi-chaotic bumps in the road. I always look back on them with good memories, smiles, and if something went wrong, we always have a laugh about it rather than bad feelings. God is good...</span></div>
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<i><b><span style="font-family: inherit; font-size: large;"><span class="text Ps-112-4" id="en-RSV-15807" style="background-color: white; position: relative;">Light rises in the darkness for the upright;</span></span></b></i></div>
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<i><b><span style="font-family: inherit; font-size: large;"><span class="indent-1" style="background-color: white;"><span class="indent-1-breaks" style="line-height: 0;"> </span><span class="text Ps-112-4" style="position: relative;">the <span class="small-caps" style="font-variant: small-caps;">Lord</span> is gracious, merciful, and righteous.</span></span></span></b></i></div>
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<span style="background-color: white;"><span style="font-family: inherit;">Psalm 112:4 RSV</span></span></div>
Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-62262300853748171832014-05-01T09:42:00.001-07:002014-05-01T09:42:15.847-07:00Where to Begin? A Summary of Recent EventsI admittedly wait long periods of time between my posts recently, and the farther apart they are, the more overwhelming it is to try and sit down and write out the most current events. I thought that was just due to trying to remember what happened, the farther in the past it goes. Now I think it's also more about how time keeps moving, more things keep happening, the list of items to blog about and update grows longer and - recently - weightier.<br />
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<a href="http://shechoosesjoy.blogspot.com/2014/03/good-news-not-as-good-news-and-plan.html" target="_blank">My last post</a> was about getting ready for "Plan B," an upgrade to my PTBD biliary drain - to do angioplasty of the bile ducts with a balloon and open up one of the main ones that has serious scar tissue narrowing. I had that procedure done at the beginning of April.<br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXRV9oINYQ8S0T8TTrouCIa00GlVRbEtgs579_o8wxAQJlGlC8-e8BCDgG9d7jTm6vJ-eZ8IKbGk_NocQAdjgAz7Cnu4QASee6B5sdNjbmL1JKYuxHAcFlzPLlkVE_EZqpW4iuMrue3t88/s1600/20140402_105710.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXRV9oINYQ8S0T8TTrouCIa00GlVRbEtgs579_o8wxAQJlGlC8-e8BCDgG9d7jTm6vJ-eZ8IKbGk_NocQAdjgAz7Cnu4QASee6B5sdNjbmL1JKYuxHAcFlzPLlkVE_EZqpW4iuMrue3t88/s1600/20140402_105710.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">Here I am, ready to go... little did we know it would be about six more hours wait ;)</td></tr>
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<br />
I came out of it with a French drain tube doubled in size. The doctor exchanged the 8 gauge drain tube I had to a 16 gauge. Wooey, the first look I got under that bandage made me grateful I'm not a wound care nurse, but much more capable, not as easily grossed-out people are in that profession! :)<br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKPTPHAu9vyAN3WyUSQ2JoKnSY-zM0YJA4OMrT_RdLlQNkr-BElIVOgigP9bthhIvokOUvtzpyjAGbYDueRIpOXU5BBk6vlngLK-uAIIid6RoeoOcvYHtQ66rpRFsPZVQPLGodwnWmEzKv/s1600/20140402_225108.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKPTPHAu9vyAN3WyUSQ2JoKnSY-zM0YJA4OMrT_RdLlQNkr-BElIVOgigP9bthhIvokOUvtzpyjAGbYDueRIpOXU5BBk6vlngLK-uAIIid6RoeoOcvYHtQ66rpRFsPZVQPLGodwnWmEzKv/s1600/20140402_225108.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">I was in a groggy state for a day and a half afterward, but it was so good to be home!</td></tr>
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That means it has been a whole month with this larger PTBD, and unfortunately, no changes. I tried capping the drain on two different occasions, following doctor instructions. It went well overall; right now it's capped. I was losing way too many electrolytes in the fluid output of the drain, so I had to. I'm still battling those low levels of magnesium and potassium, as well as working really hard (it's not easy, for some reason!) to keep drinking water and other wholesome beverages, and eat good meals. It's a bummer that there were no changes to my lab numbers after this larger drain; even when the drain bag was attached, my bilirubin was still up at 19. Yikes. And the jaundice has stayed the same, and itching has returned WORSE. Ah if I could pick pain or itching, I'd choose pain. Itching is slow torture!<br />
<br />
As I mentioned, there haven't been significant or really even noteable changes, improvements, to my lab numbers. This is the reason for my next big piece of news...<br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWvFUqxFu0ZSBwR-wNF_h4iZOceAdO3915mFZ_h7DKV8grKAjqgKwP0XixtG4kSiDxMVX4NafDoeKQZ-XhiOqviccPDyGgcNSBPiBbnHE_xrVlruxSBWzMGKqWg7w36IccATlNsWoKT-eP/s1600/1397853415162.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWvFUqxFu0ZSBwR-wNF_h4iZOceAdO3915mFZ_h7DKV8grKAjqgKwP0XixtG4kSiDxMVX4NafDoeKQZ-XhiOqviccPDyGgcNSBPiBbnHE_xrVlruxSBWzMGKqWg7w36IccATlNsWoKT-eP/s1600/1397853415162.jpg" height="400" width="282" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">I'm glad we got this news the week of Easter. It made everything easier. I cherish the Hope of and in the Resurrection.<br />Always - Only - Jesus.</td></tr>
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<br />
I've been referred to the University for another liver transplant.<br />
<br />
(:sigh:)<br />
<br />
<br />
One of my liver doctors sent over the referral, and I'm just awaiting their call one of these days to set up all those crazy pre-transplant evaluation appointments. It's possibly going to be a busy summer... if only it will be full of things like swimming lessons and dance classes with my Victory bear, rather than doctor appointments and uncomfortable procedures?? I will keep hoping and believing.<br />
It's something that's come up in conversation numerous times since about four years ago when my team started noticing that the PSC (primary sclerosing cholangitis) may have recurred. But it was never so definite or concrete as now.<br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisyO0EhwX8JH_p9g40eMo3OwilRQywcgpRuguvjl54NpwF_f4l9phJhVnkCZSPvXFvao72naSzJNyZh8xyaciW5dNt18S_V9UMoK8hdQ-TjNZkS5uMuJ4H0tW3t7ou4SdaQLFnlz3EIY5Z/s1600/20140402_153502.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisyO0EhwX8JH_p9g40eMo3OwilRQywcgpRuguvjl54NpwF_f4l9phJhVnkCZSPvXFvao72naSzJNyZh8xyaciW5dNt18S_V9UMoK8hdQ-TjNZkS5uMuJ4H0tW3t7ou4SdaQLFnlz3EIY5Z/s1600/20140402_153502.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">This is a picture of the imaging from my second-to-last procedure, when the first drain was "installed." They got it in and were able to inject dye to illuminate the ducts (the darkened, tree root looking things).<br />There should be so many more, especially on the left...</td></tr>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinPwdb4s1I3gPTWbpIucyeefdsNoo_vU01P_6i2Yfr1_98bzTgQL2ZuWIL8ZUN5nYB5Bbpi_d3EaxZi0bWIjNZXHi658BwK5X0nGKKA2SiaJ2W72ZT5WPiTjhNxsHbt3_aJx-AeTdO5daI/s1600/20140411_231344.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinPwdb4s1I3gPTWbpIucyeefdsNoo_vU01P_6i2Yfr1_98bzTgQL2ZuWIL8ZUN5nYB5Bbpi_d3EaxZi0bWIjNZXHi658BwK5X0nGKKA2SiaJ2W72ZT5WPiTjhNxsHbt3_aJx-AeTdO5daI/s1600/20140411_231344.jpg" height="400" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">That is one mass of sharp, irritating to my skin blue stitches. And one big drain! I flush it with saline like this once or twice a day.</td></tr>
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<br />
Just for the record, heading into another twelve hour surgery is not what makes me take so many deep breaths, and need time to process these developments, and soak in the Word and worship to be fueled up for those inevitable Mind Monsters. It's not that that scares me. This time I would be heading into a transplant not as a light-hearted teenager, but as a wife and mom to a toddler. I want to be here for them. Always. And a waiting list of approximately, at all times, 17,000 people needing a new liver, versus only the 6,000 per year that receive one... well, do the math. (<a href="http://www.liverfoundation.org/patients/organdonor/about/" target="_blank">Source</a>)<br />
Of course this is a fear that I don't dive in too deep to, because my heart and that Holy Spirit voice thankfully always tug me back to earth and say, "but Emily, BUT GOD. This may look daunting, BUT GOD. He can do anything, and He wouldn't have brought you this far to leave you or let you be done living now."<br />
<br />
So anyway, that's the biggest news I had. My days are so full of joy and memory making, it's not derailed me too much, just mostly made me live all the more intentionally to soak up the everyday moments. Hobby Lobby had this painted sign I wanted to get for my living room at one time (coincidentally, it's not there anymore). It said, "There is always always ALWAYS something to be thankful for." How true that is!<br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIBbkNJKdVTTlJhmvPcubH5DZp-NWbgI3nGnk0JkQJgrjxxLZcB0SVmklc-ailzXSR7Z8b3B4FReV3R9FDmzpXLy-uauZj91jnwX9UhO4oU-m2HPPq-UQf6lmDGOMuU8_2H0ckWctw4-80/s1600/IMG_20140413_200641.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIBbkNJKdVTTlJhmvPcubH5DZp-NWbgI3nGnk0JkQJgrjxxLZcB0SVmklc-ailzXSR7Z8b3B4FReV3R9FDmzpXLy-uauZj91jnwX9UhO4oU-m2HPPq-UQf6lmDGOMuU8_2H0ckWctw4-80/s1600/IMG_20140413_200641.jpg" height="400" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">I had a glorious nap last week, later than usual, and woke up to a gorgeous sunset...</td></tr>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSZvP1tmGVi6KyuyJ2R69wv6oV7_JzVRyRl7k3XSp4ctcEINW9fxGVeqigKf54j4pJLNa_3WS8NdTrc03ePcssNU7jo7rx_UgqwFzvhXrN5_6qHBshUby0JXilo7IVWgFJz9bgtPlQ9ewR/s1600/20140406_144201.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSZvP1tmGVi6KyuyJ2R69wv6oV7_JzVRyRl7k3XSp4ctcEINW9fxGVeqigKf54j4pJLNa_3WS8NdTrc03ePcssNU7jo7rx_UgqwFzvhXrN5_6qHBshUby0JXilo7IVWgFJz9bgtPlQ9ewR/s1600/20140406_144201.jpg" height="400" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">A couple Sundays ago, we took a short drive to the Peninsula and found a secret children's garden. Dreamy looking mature trees, and little fairy gardens someone's made. Miss V was on the hunt for Peter Rabbit :)<br /><br /><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCba7OW2oQOC7gpz13cwO50RF8RczyZYO2wRXAmwplNH34-Y5ETY-5P_4CkHCkLWnRPflieqItzZBgaZMvlbeknWPtH-gZ6xg7oAQiJE7NyxDyFSDf5GsAqpy0HOKNF70vA1zWoInoRniP/s1600/20140406_145953.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCba7OW2oQOC7gpz13cwO50RF8RczyZYO2wRXAmwplNH34-Y5ETY-5P_4CkHCkLWnRPflieqItzZBgaZMvlbeknWPtH-gZ6xg7oAQiJE7NyxDyFSDf5GsAqpy0HOKNF70vA1zWoInoRniP/s1600/20140406_145953.jpg" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">The Secret Garden</td></tr>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWnHX-9eqU2n7s_E4XpGlFPbkOGedDdlGO81bDV9FuAe8BlUrMqDN9SSYfkkOpu9jpocFU_ikQeAgb3Kkg-6tryJ_sAx7cfjCTUt3-0lqtI4dPV7De3yKqPJGtbTzb1CrdlCdDvBsD9h6p/s1600/20140428_115007.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWnHX-9eqU2n7s_E4XpGlFPbkOGedDdlGO81bDV9FuAe8BlUrMqDN9SSYfkkOpu9jpocFU_ikQeAgb3Kkg-6tryJ_sAx7cfjCTUt3-0lqtI4dPV7De3yKqPJGtbTzb1CrdlCdDvBsD9h6p/s1600/20140428_115007.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">Momma and Miss V made it to Costco all by ourselves the other day! What a fun time and a big accomplishment :)</td></tr>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKG2xUf7VzyQLOUJg3JeJ29GufReyumBTLNCmG38Gv35pnIT0lDcr2B5uNr_XiEz4ir-brCQ7ZSTI5sdPMgeW4MYD3hcTHcGpsd4EjJDMX77VF8Yr2G0UMnPKTDqTsotH1SF1HICWZIPfT/s1600/1398669254391.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKG2xUf7VzyQLOUJg3JeJ29GufReyumBTLNCmG38Gv35pnIT0lDcr2B5uNr_XiEz4ir-brCQ7ZSTI5sdPMgeW4MYD3hcTHcGpsd4EjJDMX77VF8Yr2G0UMnPKTDqTsotH1SF1HICWZIPfT/s1600/1398669254391.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">I experienced a huge glimmer of hopeful progress the other day. My eyes became more and more white throughout the day, and by evening they were whiter than they'd been since Christmas! Unfortunately back to very golden the next day, but that event sure was encouraging. Looking for more of those in days and weeks to come!</td></tr>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4eo8JJkpKmzlTQoyNTC8x7GNupZs9OIeGYWtMdW06AGibOTE8azkaQ-GiEWFP0Lz8fPeJ5JGT3GsQD1r6Y9sXXrNMjELmcIIKVrevBuqyti8ezE__1TX3yZLv4WwG6RWaJS7gly4I-NPL/s1600/20140425_134423.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4eo8JJkpKmzlTQoyNTC8x7GNupZs9OIeGYWtMdW06AGibOTE8azkaQ-GiEWFP0Lz8fPeJ5JGT3GsQD1r6Y9sXXrNMjELmcIIKVrevBuqyti8ezE__1TX3yZLv4WwG6RWaJS7gly4I-NPL/s1600/20140425_134423.jpg" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">We always enjoy the beautiful garden at the clinic. What beautiful flowers and trees we get to appreciate because someone works very hard at planting and tending.</td></tr>
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<br />
I've been marveling at God's grace and sustaining me to be able to keep up with Miss V around the house, and I'm on a baking roll this week as well! V and I made grain-free "puffy oven pancakes" on Monday, and I whipped up a batch of sugar cookie dough from a gluten free Hodgson Mills mix. We never got to make Christmas cookies.... or football/Superbowl cookies... Valentine cookies... or shamrock cookies... or Easter cookies. Despite me getting everything including the appropriate cookie cutters out on the counter, every time I've been too tired. Well we are going to make our Easter/spring cookies, no such thing as too late :)<br />
Late last night I couldn't sleep and made coconut flour blueberry scones. (Yep we're still very much gluten free around here. We added back grains last year when I needed to put on weight desperately. Phasing them out again little by little, because all three of us do better without.)<br />
Then today I made a rhubarb crisp, grain free, vegan, refined sugar free, with local rhubarb from a farm down the road. Delish! I have missed baking very much, and can't believe how much I've been able to do including cleaning up afterward, doing multiple loads of dishes and laundry each day, hanging with Miss V and watching a movie a day and doing crafts with her. Every day I have strength and energy to keep up and make life fun in my home, I am SO thrilled and grateful!<br />
<br />
Speaking of energy levels and miracles...<br />
Another hurdle I'm in process of jumping is some wonky blood and bleeding issues. My exhaustion level didn't fade enough once I capped my drain last week, and I had a hunch about not just electrolytes but also my blood counts. Sure enough, my doctor reported back to me that my Hemoglobin was at 8 and Hematocrit 26. My Prothrombin time and INR (both indicators of the time it takes for your blood to clot) are double what they should be. I actually had to wait a few hours while I was infused with three units of Plasma before my procedure earlier this month, because my numbers were past their cut off for a safe procedure.<br />
It has to do with the challenges my liver is fighting through, and the state of sickness it is in; PT and INR rise. Not much you can do, I am now taking Vitamin K but really I just need healing! I'm really starting to feel it and noticing that it's not really improving.<br />
Oh more blood drama! It's been almost a full year since my intense war against Autoimmune Thrombocytopenia ended and [I believe] God healed me and put that nasty disease into remission forever! But I'll never forget those trips to the ER hanging on as I was on the verge of passing out and my skin was so white and cold.<br />
I got my blood drawn yesterday evening to check Hemoglobin, Hematocrit, and to do a Type and cross for a blood transfusion. It's inevitable that I'll need one within a week (actually, it's been a week since my labs were drawn last and my doctor informed me of the electrolyte and blood situation and my need for a transfusion.) but the Infusion Center where they do blood is so booked up, I can't get in until Monday. I do NOT want to end up in a critical situation ever again due to low red blood cells, so I figured checking today would be a good idea, we'll see where my numbers are at (knowing I'm still having bleeding issues - dumb gut ulcers!) and if needed, the team will go ahead and put me in the hospital for a short stay to receive a blood transfusion that way. I'd much rather give up a weekend day doing that then have to rush to the ER late Sunday night because the numbers got out of control.<br />
Please say a prayer for clear results and a great plan of action. And as always, a blood match for me that's clean and healthy!<br />
<br />
I think that is the summary of the major things going on. It's been a busy month - anyone else feel like April just FLEW by? But I am excited for May; it's my "happy month." :)<br />
I will celebrate thirteen years since my liver transplant on Cinco de Mayo the 5th, my third Mother's Day on the 10th, and my 30th birthday at the end of the month! It's a good life. Never let go of your vision or your fight.<br />
<br />
And don't take life or yourself too seriously! ;)<br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO_Dj7lXoUoP8eMjdaH1mOr22Cjrcb9-bTaFM0z91sQY9QwR5kbLhND_m9ni9sCQ3iEp5gIL3y5tBFND5PSuRkeG3WzomfWCv258GooPm1Fq_FCQyp0ZHCtbTJz_8KLPnAA6Fi3z6r7bpO/s1600/IMG_20140425_211011.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO_Dj7lXoUoP8eMjdaH1mOr22Cjrcb9-bTaFM0z91sQY9QwR5kbLhND_m9ni9sCQ3iEp5gIL3y5tBFND5PSuRkeG3WzomfWCv258GooPm1Fq_FCQyp0ZHCtbTJz_8KLPnAA6Fi3z6r7bpO/s1600/IMG_20140425_211011.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">Right?? :)<br />Interesting to me, my hair is getting back to its curly, wavy state. It was like this before my liver transplant in high school, and changed to being mostly straight when I was pregnant with Miss V. Now, the curls returneth!<br /></td></tr>
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Here is a group of statements I wrote out to myself last week when things were feeling overwhelming, lonely and anxious. A declaration:<br />
<br />
"I choose to live.<br />
I choose to keep moving.<br />
I choose to take one day at a time.<br />
I choose to not quit.<br />
I choose to trust Jesus.<br />
I choose to believe the enduring, unfailing promises of God.<br />
I choose to look high and low, far and wide, to find any joy I can find in the most difficult of days.<br />
I choose to hope.<br />
I choose to stay in the fight.<br />
I choose to be fully present in the moments for myself, my daughter, and my husband.<br />
I choose to thank God in every moment.<br />
I choose life.<br />
I choose joy."<br />
<br />
<br />
And here is a beautiful prayer I discovered; I've heard and read parts of it before, but wanted to see it in its <a href="http://www.catholic.org/clife/jesus" target="_blank">entirety</a>. I want to print it out and carry it in my purse with me to remind me of these truths.<br />
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<h1 style="background-color: white; box-sizing: border-box; line-height: 1.1; margin: 20px 0px 10px;">
<span style="color: #38761d; font-family: inherit; font-size: large;">St Patrick's Breastplate</span></h1>
<div style="background-color: white; box-sizing: border-box; float: left; line-height: 24px; min-height: 1px; padding-left: 15px; padding-right: 15px; position: relative; width: 646.65625px;">
<span style="color: #38761d; font-family: inherit;"><i>Christ be with me, Christ within me<br />Christ behind me, Christ before me<br />Christ beside me, Christ to win me<br />Christ to comfort me and restore me.<br />Christ beneath me, Christ above me<br />Christ in quiet, Christ in danger<br />Christ in hearts of all that love me<br />Christ in mouth of friend or stranger.</i></span></div>
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<span style="color: #38761d; font-family: inherit;">(390-461 A.D.)</span></div>
Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-21253943513273584672014-03-31T01:52:00.001-07:002014-03-31T01:52:27.367-07:00Good News, Not as Good News, and a PlanI had another appointment with hepatology on Wednesday. I have three liver doctors overseeing my "case" just in that clinic, as well as a gastroenterologist (guts doctor) and three nurses/medical assistants working with me to communicate messages and test results, med changes, appointment requests, and so on. I'm in great hands!<br />
This particularly hepatologist is the newest to my team, but the most experienced. The more we learn, the more impressed I am - he has been a part of or in charge of boards locally and around the world for GI, liver, and more that I can't remember. It amazes me to look back and see the path that curved like a zig zag up a mountain for a while, years back, when trying to get through to my team was near impossible and I felt uncomfortable and stressed - to now, when I have world-renound specialists that study this rare disease PSC and other like it, for most of their career. God is always a few steps ahead, working things out, isn't He? Awesome :)<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqkNfE8OHlhA8PNY_GV1ZJiexr-FZatb0k-9TfMBIZWKh61-Chdtnzbm1Cpi6WiD0lCdFdCBjd229NNEOQPzWpQm0csWQiFKS7nTtsBAjtGnDrpG7qEeI7cEp3zXmfbB6MV_oDYrxVt3zz/s1600/20140326_165726.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqkNfE8OHlhA8PNY_GV1ZJiexr-FZatb0k-9TfMBIZWKh61-Chdtnzbm1Cpi6WiD0lCdFdCBjd229NNEOQPzWpQm0csWQiFKS7nTtsBAjtGnDrpG7qEeI7cEp3zXmfbB6MV_oDYrxVt3zz/s1600/20140326_165726.jpg" height="640" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Leaving my appointment- WITH supplies, woo! -wearing my new "SheIsStrong" tee</td></tr>
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It was a great appointment. Dr checked my biliary drain site and said it looks just like it should. I got three spare drain bags and three new "stat locks" - the special sticky-backed plastic locks that tack ever-so-uncomfortably to my belly and hold the drain tube in place just below the stitches, so as it continues down to the Luer lock connecting to drain bag, it won't pull out of my abdomen and gut that it's in, if it gets snagged on something. (Which definitely would have happened by now if i didn't have the stat lock... but the one that had been on there for almost six weeks was so ready to go!)<br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiettRZjthZTgZxHe4WtJC7u2L1pmkBiUmKjLMmxxo2U7f8O-IuavyBsOQ5pmzcctqUfV1pkuWJEqm9lLH0oGVMhxnjxXW_RdrZsfegD94IL7arf3DX6Za3i9iEG2CamJ-AE4G9GFNrBhjB/s1600/IMG_20140320_093923.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiettRZjthZTgZxHe4WtJC7u2L1pmkBiUmKjLMmxxo2U7f8O-IuavyBsOQ5pmzcctqUfV1pkuWJEqm9lLH0oGVMhxnjxXW_RdrZsfegD94IL7arf3DX6Za3i9iEG2CamJ-AE4G9GFNrBhjB/s1600/IMG_20140320_093923.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">Much of my time is used up resting, resting, and resting. I have a list now: things I wish I could successfully do lying down. Sew, paint nails, write thank you's, bake, cook, ... Thank you for the daffodils Ry :)</td></tr>
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The not-as-good news of the week was that my bilirubin, although dropping initially after this drain was put in February 14th, has slowly climbed back up to a number that has brought back even the terrible itching that comes with liver disease and severe jaundice. Ah so uncomfortable!!! I'll wake up in the middle of the night scratching my arms intensely and realize- wow my skin is just on fire, sleeping doesn't matter! I can't wait for the bilirubin to drop back down to a good level so that will go away too!<br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs6qKbU_6DH03i2n_SlLIOF2GdVf1sHjmL8nWpEOJ8NV9-aYgdicrk4mOtH09LlXfLE8LJHR7jcO4bD-6KBXvcc_JW5TeFkBxYVNmyT39pdeM7-jiDOOklfsG9heBIgBDM9pYW2zs4K27S/s1600/20140322_162510.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs6qKbU_6DH03i2n_SlLIOF2GdVf1sHjmL8nWpEOJ8NV9-aYgdicrk4mOtH09LlXfLE8LJHR7jcO4bD-6KBXvcc_JW5TeFkBxYVNmyT39pdeM7-jiDOOklfsG9heBIgBDM9pYW2zs4K27S/s1600/20140322_162510.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">Last weekend I got to sit down for some ME time and made this "CHOOSE JOY" tee :)<br />
I'm loving my growing collection of meaningful shirts!<br />
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My bili from last week was 16.8, and my doctor was saying it needs to be down around 10 before they'll look at removing the drain bag and capping the tube to just keep as an access point into my bile ducts. Thus, we discussed, it is time for the next phase of Operation Open Bile Ducts! (not an official title ;) My doctor shared with my at last appointment that he just had a patient receive a liver transplant last year, after TWENTY years of being on the waiting list, but successfully having a PTBD drain that they would use to access the bile ducts and put in balloon stents and shunts as needed over those two decades. That regular routine keep him going for twenty years; that amazed me! He has more than one patient like that; one was just in before me on Wednesday.<br />
Hearing about that as a very viable option makes me feel really encouraged! My dream and prayer is still to be healed, miraculously, completely, instantly one day! God is in the healing business! But this is another way God can continue to sustain me and restore health to my body, and if it does go on for years, who knows what other technology will be discovered that can help even further! Can't put God or science in a box- or the way we think our prayers will be answered. You never know what God is planning and setting up a few steps ahead :)<br />
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Ok sorry about that slight rabbit trail - back on track now. That will be my next step - <b>PRAY the scheduling staff calls me Monday morning and has an opening for Tuesday or Wednesday morning, because I am so uncomfortable and yellower and itchier, and my liver really needs a lower bilirubin level to function well. I am seeing signs of the same communication challenges </b>we ran into last time, and I hope they clear up tomorrow! Nothing like knowing what you next step should be and not being allowed to set it up. {Frustrating!}<br />
Whenever it does end up being scheduled and done, the procedure will be like an ERCP but going through the PTBD drain in my abdomen instead of down my esophagus, and they will use balloons to inflate the scarred, obstructed ("strictured") ducts to an open state, and get those major bile ducts, especially on the right sided liver, draining through again. I wish I could share the pictures from my MRI and fluoroscopy, they are so cool in 3D and animated and everything! I asked- not an option yet.<br />
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<b>So if you would, pray for an opening to have this Interventional radiology procedure done SOON, for it to be a "slam dunk" as my dcotor said he expects it to be, and for great function and drainage flow to be restored to those strictured ducts as soon as they get in there with the balloons to inflate the roadblocks of scar tissue and stones!</b><br />
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Here are two photos from today after church. You can't always tell the severity of jaundice on film, but it's been pretty severe! Today at the store I think I scared a few people- my eyes were glowing golden, and next to the undereye concealer I was wearing (regular skin tone concealer - because where do you buy 'jaundice' colored makeup? Lol!) the contrast was just unreal!<br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO_hWAHO0Ste3MJKA541uiD8J-jq4A_9yRzsDSId5I3vUNVHZ2eM_uxevf3rbBkPa3vz_7FCwScAcu_zEW-MaIHdjSBjv0hyphenhyphen7xhH1pxwNKPbcY1RcjHJTqQgplbpWTOcbP7uF9DxIJAy3B/s1600/IMG_20140330_145156.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO_hWAHO0Ste3MJKA541uiD8J-jq4A_9yRzsDSId5I3vUNVHZ2eM_uxevf3rbBkPa3vz_7FCwScAcu_zEW-MaIHdjSBjv0hyphenhyphen7xhH1pxwNKPbcY1RcjHJTqQgplbpWTOcbP7uF9DxIJAy3B/s1600/IMG_20140330_145156.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">I find that if anyone is going to stare at my golden glow, it's not kids--- </td></tr>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq43L2aPVL9tBTrtkbMBuUnms8f-nYfTQ2OXJzF_m9aUEfTTdZKFeVKk4JGvtNs5M3MHusL_sHCkd4s08GPyyv0FsYZzXxWs9iizxezglzH1EbngUA-sFoiu4qItkg_G3LtIsgCGFjYHHW/s1600/IMG_20140330_145258.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq43L2aPVL9tBTrtkbMBuUnms8f-nYfTQ2OXJzF_m9aUEfTTdZKFeVKk4JGvtNs5M3MHusL_sHCkd4s08GPyyv0FsYZzXxWs9iizxezglzH1EbngUA-sFoiu4qItkg_G3LtIsgCGFjYHHW/s1600/IMG_20140330_145258.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">---It's adults! Adults stare at me in public places, and I just want to say, "didn't your mother/teacher/brother/grandfather tell you, 'If you can't say or do anything nice...'?"<br />
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I'm thankful for a good week, energy to make memories and laugh with my two sweeties,, and some wonderful doctors with an encouraging, positive plan that we all feel comfortable and hopeful about :)<br />
God is faithful<br />
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Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-72622793376328247222014-03-24T03:09:00.000-07:002014-04-05T21:25:38.293-07:00Easter Season Anthems...<span style="font-family: sans-serif;">A brief update about the issues I mentioned in my last post (about confusing communication with my medical team, and running out of bile drain supplies!) is at the bottom of this. It's not the main point of this post so it doesn't get top billing ;)</span><br />
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<i>I am getting so excited for <b>Easter</b>!</i><br />
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I can just feel the anticipation in my spirit. It really is the Superbowl of church weekends. It's a celebration!<br />
I believe in taking the time to walk through the meaning and emotions of the journey from Jesus' unfounded accusal, unjust trial, and crucifixion. Maybe you have a tradition to do that, like watching The Passion of the Christ film, cooking or hosting a Seder dinner at home, or attending a Good Friday service.<br />
But the wonderful, unforgettable thing about Easter, is that it doesn't end on Good Friday! It doesn't end with the burial of Jesus in a tomb. It doesn't end in tragedy... <b>Resurrection Sunday is coming!</b><br />
As I've gotten older, and realized that the magic I felt as a girl at Christmastime was mostly from the legend of Santa Claus and the wonder of looking at lights and trees and snow (and don't get me wrong - I still love all of that), Easter has meant more and more to me each year. Also, as I've grown closer to Jesus in a steady pattern of progress over the last decade, Easter means the most. You don't have to try to foster the wonder and joy as an adult by creating traditions, decorating and shopping downtown for gifts and gathering under a tree in new flannel PJs (again - I LOVE all that, but it's just different as an adult, and it's a different feeling than Easter). Jesus' birthday that we celebrate at Christmas is very special, and it was an incredible event in history that fulfilled prophecies from centuries before.<br />
But Easter? That's a whole 'nother level :)<br />
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I am so excited to celebrate the joy that Jesus's resurrection brings to my soul, my home, and most of all my church. There's probably no better weekend to jump into the life of a local church than Easter. it is such a collective celebration of the core of our Christian faith. Jesus died and with Him died our sins, our wounds, our sicknesses - and then He rose again! And out of that, we receive freedom, healing, and eternal life with Him! Knowing that in your heart, and honoring and celebrating that with your church family is simply the best.<br />
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So, I've been repetitively listening to a couple worship songs lately, because they popped up in my playlist some weeks ago, and I started thinking about Easter because of the lyrics of the songs! They are anthems you can adopt either if you're pumped about Easter already and want to jam and celebrate it, or if you're having a hard time getting excited about Easter this year and need a little push.<br />
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Elevation Worship came out with a new album a few months back, "Only King Forever."<br />
The entire album is amazing, but two different songs caught my ear and my heart as they really seem like anthems that fit the Easter season. The words are amazing truths to declare as anthems of victory over your life.<br />
Check out the album on iTunes or Amazon mp3, or their website is a great resource, elevationworship.com.<br />
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The first song is,<br />
<b>Raised to Life</b><br />
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<b>Here's a link to the YouTube video of "Raised To Life" (Acoustic Female Version): http://youtu.be/VhIGt0mq2JI</b><br />
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Precious compassion that pours<br />
from the wounds that won our salvation<br />
Sin was strong but the Savior is stronger<br />
Come let us worship Him<br />
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Great was the debt that we owe<br />
And how high was the price of our healing<br />
Paid in full by the One who is worthy<br />
Come let us worship Him<br />
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Raised to life with Christ the Savior<br />
In His name a new creation<br />
Now our song will rise<br />
Adoring Christ the Lord<br />
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Death overcome by the Word<br />
that was spoken before it was finished<br />
Jesus Saves is our song everlasting<br />
Come let us worship Him<br />
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Raised to life with Christ the Savior<br />
In His name a new creation<br />
Now our song will rise<br />
Adoring Christ the Lord<br />
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Sin was strong but,<br />
Jesus is stronger<br />
Shame was great but,<br />
Jesus You're greater!<br />
Sin was strong but,<br />
Jesus is stronger<br />
Shame was great but,<br />
Jesus You're greater!<br />
(repeat 4x as song builds)<br />
[sidenote: I LOVE this part}<br />
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The second song is:<br />
<b>Last Word</b><br />
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This song speaks to me about Easter especially with the line, "You have the last word, 'It is finished!'" as that was what Jesus took care of on the cross. But it also has a lot of meaning and power to declare over a disappointing season in life, over a health crisis or broken relationship, really any life storm or trial. Get these words, and the Scriptures they come from, into your heart and spirit. And watch your own words and demeanor change through the weeks as you walk in a mindset and faith set on victory and a new season to come!</i><br />
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Here is the live recording from Elevation Worship on YouTube:<br />
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The storm rises from the deep<br />
And rages around me<br />
But I will remember<br />
When doubt wars within my heart<br />
The battle almost lost<br />
I will remember<br />
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You have the last word<br />
It is finished<br />
You have the last word<br />
It is finished<br />
My fear is silenced in Your love<br />
My hope is endless!<br />
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Your voice that calmed the violent sea<br />
Speaks courage over me<br />
So I will remember<br />
The words that wake the sun to rise<br />
are breaking through my night<br />
And I will remember<br />
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You have the last word<br />
It is finished!<br />
You have the last word<br />
It is finished!<br />
My fear is silenced in Your love<br />
my hope is endless!<br />
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Your Word stands through the ages<br />
Your voice shatters the darkness<br />
In You, we are more than conquerors!<br />
You speak, strongholds surrender<br />
Your name overcomes the enemy<br />
In You we are more than conquerors!<br />
(repeat)<br />
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You have the last word<br />
It is finished!<br />
You have the last word,<br />
It is finished!<br />
My fear is silenced in Your love<br />
My hope is endless!<br />
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I pray that you are encouraged by these songs, and are seeking out anthems of faith that speak to your heart and lift your soul. It's so worth it!<br />
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<b>What have you been listening to lately? What songs are your anthems of faith and victory?</b><br />
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Well, as mentioned at the top of this post, here is a summary of how the hospital communication and bile drain issues are going...<br />
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We ended up not getting any answers or help all week, and by Friday I just had no energy left to make a fuss, and my awesome hubby had gotten frustrated enough to call and make a (polite but firm) fuss, Lol! So Friday afternoon, after he spoke with someone in administration for patient concerns, we started getting phone calls.</div>
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First I got a call from a nurse in the department that put in my drain. She answered questions about symptoms of infection (so far it looks like I'm in the clear-phew!), and cleaning the drain bag. Unfortunately although I did this diligently over the weekend, it still reeks of something akin to old potatoes and onions and something worse, all combined!<br />
<b><i>I feel like I need to say, I'm so sorry if you've sat or stood by me recently, or given me a hug lately, and wondered if I've lost my sense of smell or hygiene. I promise I'm showering quite regularly and trying my best! I just desperately need new bags.</i></b></div>
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The last the thing the nurse did was talk about medical supplies, and set me up with a company to get supplies in the mail.<br />
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The company called me right before five o'clock and collected the necessary info from me, and they're going to call tomorrow about insurance coverage, getting a small bag (I requested pediatric size if they exist, because I'm lugging around a 600 cc bag while only putting out about 100 cc all day!). That was so helpful and neat that they called when they could have said, "ah it's too close to the weekend, we'll wait until Monday." I'm hoping for good news about those supplies today. Here's hoping!!</div>
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Finally, I got a call from a GI nurse that is now going to be my communication liaison of sorts. My job is to connect with her and explain my concern(s), and she will help me by contacting the right people and setting up the needed steps of care. That will be very helpful, and I appreciate that someone thought to finally assign me specific help. I'm a complicated patient, and it's probably past due that I have more personal communication with the multiple specialty departments at the hospital. Hopefully that will make a difference for me from now on.</div>
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I have my <b>next appointment with hepatology on Wednesday</b>. Not exactly sure what the topic of discussion is going to be, other than maybe getting this biliary drain capped. Perhaps planning another ERCP to put in a bile duct stent, because unfortunately my bilirubin levels have gone back up <i>almost as high as ever</i>. (Bummer!) Or my doc may want to discuss getting an appointment for liver transplant listing evaluation set up at the transplant center across town. Whatever Wednesday entails, I'll no doubt update after that appointment, later this week.</div>
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Have a wonderful week, friends. Happy Spring! Great things await- sunshine, gardening season, Easter, SUMMER! Woohoo! :)</div>
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Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-13904695017870303392014-03-18T04:19:00.000-07:002014-03-18T05:00:15.230-07:00Little Bit Forward, Little Bit Back (or, Stinky Bag of Bile on my Hip)It has been just over a month since I had the procedure to put in my PTBD (biliary drain), and I have not known how to write an update post. There is so much to communicate, or so little.<br />
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Some days I feel like writing out a post the length of a book chapter. Other days, I just want to write a sentence and post a photo, and leave it at that.</div>
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Things haven't gone quite how I expected. In several ways. </div>
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I am always seeking a healthy rapport and clear communication with my doctors, and usually we all achieve that. But in the days before this procedure and also in the recovery time, that did not go as usual. Working with some new doctors who do not know me and my medical history quite so well, and don't realize that I know my way around my chart, my health and the way things work...</div>
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<tr><td class="tr-caption" style="text-align: center;">About to go into the procedure room.<br />
I think this was right before the nurse gave me a dose of IV Benadryl.<br />
Yikes that stuff is trippy! :<br />
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<span style="font-size: small;"> Based off the first explanation of the PTBD back in January, I had different expectations of how the procedure would go. I was sitting there in the pre-procedure room, after it took the nurse twenty minutes and two painful attempts at putting in an IV (I'm normally a perfect IV and lab poke patient, but she picked an odd area of my arm and I was so dehydrated from the NPO/fasting before the procedure, it turned into a not fun time.) Once she got a line in, she brought in consent forms to sign, and in reading them I started to think I was in prep for the wrong procedure. It did not sound like what my hepatologist had explained to us. I had to wait almost a half hour, on top of the half hour we'd already been waiting, for the doctor </span><span style="font-size: small;">to come in and answer my questions. He reassured me enough by his answers to my questions that he and I were on the same page.</span></td></tr>
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Turns out, we learn afterward, not quite. I won't get into the details. At least it was a successful procedure and I now have a drain that can be used in ERCP to access bile ducts for things like putting in a stent, etc. Also, it's been allowing some bile to escape through the exterior line to a drainage bag connected at the drain tube end, which I have attached at all times, flush twice a day and empty about as often.</div>
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<tr><td class="tr-caption" style="text-align: center;">Sunday morning, first morning at home after my procedure Friday. I felt great that morning!</td></tr>
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Upon discharge from the hospital the next day, it quickly became apparent that we weren't given much information that we actually needed to care for this new appendage I had, and hardly had the supplies to do the physical care, or the knowledge to know what to look for as a concern. I gave it some thought for a few days, as I wasn't in the mood to urgently drive up to the hospital to see the same doctor and receive more vague instructions, or be sent to the ER by my much more concerned doctors, plus I was in a LOT of pain. (The pain, I figured out on my own in week two, came mostly from the drain going into my abdomen right above my diaphragm - with every breath in, it would push on the tender area and hurt so much! Also, I discovered, if I ate more than a small amount of food and did not space out my meals into tiny ones that took all day to eat, my guts full of food, which run right under the exit wound, would push on it and cause quite a lot of pain. Ouch!</div>
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The drain was put in the middle of my abdomen because it could not go on my right side like they normally put them. I got to see this on fluoroscopy film later, it was pretty cool to watch the moving images in 3D of the right biliary tree spinning around on the screen. It was not cool to see how bad things look - my right sided bile ducts are nearly defunct. Perhaps a more blunt doctor would say they are defunct. They are shrunken, twisted, knobby, narrow tubes that look like knarly strings of yarn that a cat or child got to and twisted or tied knots in repeaedly. Or, they also made me think of a compacted, spiral strand of DNA gone very wrong. Basically no bile gets through them. </div>
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What amazes me is, that they could get so bad without much indication. It must have happened over several years, and the only sign I've had that something was funny is the dull ache I sometimes had and have in my upper right side.</div>
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The main point is, it's been nearly five weeks since the procedure, and we're just now figuring out that the site may be infected. My recovery took much longer than the doctor expected. I have been the most proactive I could be, I just kind of fell through the cracks on this one. The good thing is that Ry and I spoke with the hospital administrator in charge of patient care, and we were able to give great feedback.</div>
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I'm not a whiner, I'm not a complainer, and I hate raising any negative point without having a solution to offer as well. But in this case it just happened that multiple things were dropped, all for the same patient (me), and it can at least be a learning experience for all of us.</div>
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The good progress that was made is that for several days after the drain was put in, what seemed to be stones (bile stones? I don't know what they're called when you don't have a gallbladder) were coming out into the bile bag several times a day. They were not large, but it was good to see that they were coming out, especially since I didn't know they existed! Also, my bilirubin (albeit slowly) started dropping almost right away. My eyes looked less green/yellow, and my skin as well. Some days would look worse and some much better.</div>
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<tr><td class="tr-caption" style="text-align: center;">Me and Ry doing an eye/skin color comparison.<br />
On the left: Jaundice / Right: No jaundice!</td></tr>
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Unfortunately, though the docs said it can take six to eight weeks for jaundice to clear after a gradual build up over time like I had, and things were slowwwwwly but surely improving... things have now plateaued, and my Bili number actually went UP last draw, and my skin and eyes are not looking too good. A little girl at the park came right up to my face as I sat on a bench the other day, and said, "are your eyes green? Why are they green? Is your skin green??" in disbelief. I told her it is because I'm extra special, and she said, "Oh! ok." And ran off to play.<br />
A few minutes later though she came back to stare at me. Lol! I asked why didn't she go play, and she said, "Because I want to sit by you, you're extra special. And really pretty!" So, what she lacked in personal space awareness, which really comes later in life anyway, she made up for in sweet compliments :)</div>
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It's just funny, I don't notice when the jaundice gets severe, or I tend to think I look better than I do, then we go out somewhere and people give me strange looks, and then I remember and feel bummed that, darn, I must not look too good after all, or be making progress after all.</div>
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I have a couple appointments coming up with liver doctors in the folllowing weeks, as well as more labs to keep tabs on my counts. I had to get a blood transfusion about two weeks out from the procedure, as my hemoglobin isn't staying up where it should. My hematologist thinks I am bleeding somewhere; we don't know where. Probably in my guts, though, because I had to switch back to Tacrolimus for my liver transplant immune suppression, and that tends to make my colitis flare, which would cause bleeding in the guts somewhere. The Cyclosporine which I was most rcently taking needs bile to be digested probably and keep the liver transplant safe... couldn't keep taking that when my liver and bile aren't working right. If I keep requiring transfusions, we will probably have to start discussing colectomy and an ostomy bag again as we were last spring, before the ITP went away. Hmm... carrying around not just one stinky bag of yellow green bile, but two bags, the other filling up with gut waste. Oh boy! I don't even know if I'm strong enough to go through that colon surgery right now, but we'll probably discuss it soon.</div>
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[So, what was the toughest decision YOU had to make today? Lol! I hope it was something fun like which pair of new shoes to buy, not which stinky waste bag you want to carry around with you for the next decade... or for life! ;) ]</div>
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I don't envy my doctors, that's for sure. What a balancing act they are doing, with all the body systems that are acting up, needing to stabilize and help those, while wanting to keep the still-healthy, quiet things that way. Pray for their wisdom and for perfect solutions to be thought of. I have some amazing doctors (the best team I've ever had in all these years of medical care).</div>
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<tr><td class="tr-caption" style="text-align: center;">I had a liver ultrasound on Thursday, to check on veins and do the biannual check for liver lesions or suspicious bile duct changes...<br />
(Yeah I'm 29, and they were looking for pre-cancer or cancer. That's one part of my life.)<br />
This is an every six month thing, probably more often if my liver doesn't shape up soon, and I get placed on the transplant list.<br />
They alternate between ultrasound and MRI checks, because I opt for NO radiotion, NO CT scans.</td></tr>
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If this is all pretty technical medical jargon and you don't understand it but would like a summary version, just leave a comment. Feel free to ask questions too. Like I said near the top, I don't even know where to start with everything that's been happening. I just started typing and here's where I ended up this time.</div>
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The main thing is, things aren't going as well as it seemed they would be, as presented to us before the procedure. But no one can control that. I got through it, and at least doctors now have an access point to my bile ducts, whereas before they did not, and were not going to put me through a third ERCP attempt to try that again.</div>
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I am taking care of this bile drain the very best I can, I am taking my meds and drinking my veggie-fruit smoothies (I crave them now when I miss a day!) to help my liver the most I can. And I am hoping for the best, declaring God's promising, and leaning on His truth! He's never failed, and He won't start now!!!</div>
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Thank you so much to the friends-that-are-family who brought us dinners for the first two weeks of this challenging time. You were our angels!</div>
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Thank you for those who continue to pray with us believing for the miracles we need, those of you who speak affirming words of health and agreeing words of healing over me, those of you who sent cards, letters, or very meaningful gifts like the custom made bracelet that says, "she chooses joy." Talk about motivating to keep up this fight! And some days boy do I need that motivation from those of you so dear to me.</div>
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Onward, forward, moving along... life goes on! I'm still here still breathing still very full of purpose and spunk - God's not done with me yet! ;)<br />
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<tr><td class="tr-caption" style="text-align: center;">Finally made it back to church last week, and this week I was even stronger!<br />
These two lovies in the photo with me are my posse. <br />
They make it all possible - their flexibility and kindness and selflessness and faith. <br />
Yep, that all applies to Ry AND our two year old. She is amazing.<br />
Love you two so much!</td></tr>
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Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-5325440647469783202014-02-13T22:13:00.000-08:002014-02-13T22:13:17.822-08:00Staring Down the Monster. And, Another Big Needle in the GutI have been meaning to sit and write out this post since October, when I titled and saved it as a draft. So much has happened even between then and now, that this post alone could be the chapter(s) of a book.<br />
<br />
Early October I had just had my bout with cholangitis, been in the hospital on antibiotics for several days and had a failed ERCP to try and open the strictured (narrowed by way of inflammation turned to scarring) bile duct that contributed to the issue. We'd just been emergency-moved out of our home as there was black mold discovered under the house, and I was processing all of that, along with the newest topic brought up by my liver team the week before: retransplantation.<br />
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Retransplantation has gone from being my nemesis, my enemy to be avoided, denied, and not even considered at any costs, to a dark scary monster standing between myself and the life I expected to have when I got married and became a mother, to what it is now... a very possible reality in my future.<br />
Once you're in the position of having to face a fear, and your survival hinges upon facing that fear, you just do it. Not all in one fell swoop easy as pie, but in a graciously gradual process that God takes you through, holding your hand and opening your eyes to what you need to see.<br />
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I'm thankful to say, it's not such a monster anymore. The worst part (in my experience) of needing a liver transplant, is how helpless the waiting list can make you feel. You have no control over whether you'll get a liver or not.<br />
Liver transplant is the most intense, physically challenging organ transplant, and livers are not easy to come by. There is no dialysis like kidneys have; there is no life support like a lung or heart machine. It's a perfectly designed filter and toxin-eliminator for the body, crucial in digestion and life itself. There are partial-liver transplants now, where a living donor is able to give part of their liver because it will regenerate, and the piece that is placed in the transplant patient will regenerate as well. However, these kind of liver transplants have a lot more bile duct scarring complications, and when you're already needing a new liver because of your scarred bile ducts due to PSC (primary sclerosing cholangitis) it isn't a great or sometimes even viable option.<br />
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*This is the perfect opportunity to make mention of tomorrow's special distinction: <b>February 14th is not just Valentine's Day, but also National Donor Day. If you are not sure you are signed up to be an organ donor, please visit the national registry and get signed up! </b>Follow this link and click on your home state to do so: http://organdonor.gov/becomingdonor/stateregistries.html<br />
Here is a great little informative article just put out in a college newspaper yesterday, detailing some of the most common questions and concerns about organ donation: http://thesnapper.com/2014/02/12/have-a-heart-this-organ-donor-day/<br />
When in doubt, just ask. As an organ donor you can save or enhance up to fifty lives. That's amazing!<br />
There is still a huge need for registered organ donors in the United States, and especially needed are minorities. It's estimated that eighteen people pass away every day waiting for an organ. Consider it and do what you can. Ok, PSA over :)<br />
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Back to the not-so-fun scenario of being on the organ transplant waiting list, and having no control whether you'll receive the life saving transplant that you need...<br />
This is where it becomes so important to ground yourself daily -moment by moment- in <b>Truth</b>. There is One who knows my future, and I'm no more in control of the ultimate destiny of my life than a healthy person that the Lord watches over. I continually find myself responding to any mind monsters or doubts that come up, "Maybe so... BUT GOD."<br />
"But, God shall supply ALL of my needs."<br />
"BUT GOD will satisfy me with long life and salvation."<br />
"BUT my GOD will fight for me; I need only to be still."<br />
"BUT GOD knows the way that I take, and when He has tried me, purified me through these challenging times, I will come forth as gold, giving Him the glory."<br />
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I didn't update after my ERCP to fix the stricture on January 27th (my guy and I celebrated our seventh wedding anniversary that day in the hospital, by the way! shout out to my amazing hubby!). That was the second attempt since October, and it didn't work. The doctor that did the procedure is world class, has decades of experience, and tried for two or three hours (I can't remember, I was intubated and under general anesthesia for it, and so sick and sleepy for hours and hours after, I missed all the reports, Lol!). But that one stinker of a sharp turn where my transplant was sewn to my bile duct, he just couldn't get the wire through that they needed to put in the stent.<br />
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<tr><td class="tr-caption" style="text-align: center;">Checking out of the hospital the day after my last ERCP, Jan 27th</td></tr>
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Meanwhile, my bilirubin has gone to a level over 20 (normal is 0.2-1.2), my AST/ALT/Alk Phos (liver function tests) are very high, and I've been so jaundiced and itchy, it's been quite the couple weeks!<br />
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<tr><td class="tr-caption" style="text-align: center;">Orange flavored Cholestyramine, a powder that kind of suspends in water, not dissolving, and you have to just get it down because it's supposed to bind to bile and help get it out, lessening the itching and bilirubin #. It is NOTHING like Orange Juice :)</td></tr>
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I was very nauseous for a while, and finally figured out that I wasn't digesting fats very well - that's something you take for granted if your bile ducts are working! I normally eat healthy, nourishing, Primal style meals including butter, Greek yogurt, avocados, full-fat canned coconut milk, etc. I had to curtail that whole way of life and switch to fruit and veggie smoothies twice a day.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaqn5lDmMappyFiAbJ1L8cns-DSzX5nu9nrVoMI49mA1c0rMVL7zplydHNRmyRNaoyWM2LLvPEaLSfCw42gekBFevEZR2FnZWQf6TY_0A0FyKhwyJldOxMW8kz5opa7sSW4Iwn3eVveO32/s1600/20140213_140142.jpg" imageanchor="1" style="font-family: sans-serif; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaqn5lDmMappyFiAbJ1L8cns-DSzX5nu9nrVoMI49mA1c0rMVL7zplydHNRmyRNaoyWM2LLvPEaLSfCw42gekBFevEZR2FnZWQf6TY_0A0FyKhwyJldOxMW8kz5opa7sSW4Iwn3eVveO32/s1600/20140213_140142.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This morning I had my favorite: Beet juice, tons of super greens, small handful of blueberries, half a banana, carrot juice, fresh squeezed OJ... Amazing how daylight minimizes the jaundice in this photo. I'll take it!</td></tr>
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It's been fun and neat to see how that helped me to recover from the nausea and even keep up with my busy little gal most days all on my own while Hubby works, despite the crazy state of my health. God is always allowing me to live outside the box of sickness that I "should" fit into according to my labs and test results. He's so good!<br />
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<b>Tomorrow is the day we are going in for "Plan B" - a PTBD</b> - Percutaneous Transhepatic Biliary Drain. It will be done in Interventional Radiology, where they'll sedate me and use various radiology technologies to find the route, then using a (always too large looking!) hollow needle, go right through my abdomen, through the liver, into my bile duct, insert that handy guide wire that's resisted two other attempts via the ERCP route, and put in a stent to open up this darn strictured bile duct. The plan as it stands is to leave that stent in for up to six months to allow scarring to happen around it, creating a much bigger opening so bile can pass through. Something doctors said after that last ERCP attempt was that, at least visually it appears, most of my bile ducts "have lost function. They are strictured and scarred to the point where little to no bile is passing through."<br />
I put that in quotes because, that's may be a fact, but I choose to keep fact separate from Truth. That report is not what God says. It's what my very smart and caring doctors say, and now that they've gotten this information, I will follow all the steps needed to pursue a transplant eval and be listed, because I am not foolish.<br />
However---<b> THIS is ALSO where my mind calls forth the TRUTH--- "I walk by faith, and NOT by sight." "Faith is being sure of what we HOPE for, and certain of WHAT WE DO NOT SEE." "Though the vision tarries, wait for it; it will surely come." "NO weapon forged against me shall prevail." "By HIS WOUNDS I AM HEALED!" "AS Jesus is, so AM I in this world!"</b><br />
You get the idea. :)<br />
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Bottom line: I'm not letting this "Monster" take me down. The battle for our lives - whether we're recovering from an addiction, healing from a trauma, trying to bounce back from a failed relationship, or facing some dark diagnoses - the battle begins in our minds. Fill and fix your mind on things above - Philippians 4:8 tells us, "I'd say you'll do best by filling your minds and meditating on things <i><b>true, noble, reputable, authentic, compelling, gracious- the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse.</b></i>"<br />
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If your mind has junk in it, gather it all up like you would rotting food in your fridge, and kick it to the curb! Life is too precious to spend it stuck on garbage thoughts that aren't from God. Life, and life abundant is what Jesus came to bring us - not just in Heaven but here on earth. But it's completely our option - something recently pointed out to me, was that Jesus said, "I have come that they MAY have life..." That leaves the ball in our court.<br />
Speaking from experience, it is so worth the effort and repetition that it takes to build new habits in your thought life, to step out on your sea legs of faith and start looking past a bad report to what the Word says. It may feel completely awkward at first, but it gets easier, and more routine, and pretty soon it is your norm. If you want to do it, you can and you will!<br />
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If you've read this far, thank you for bearing with me ;) This probably should have been two or three separate blog posts! A little secret - we haven't had a working computer in a couple years. We have an old netbook that we have to hook up to our TV to see anything on, and it gets overheated after five to ten minutes of just booting up most of the time-- needless to say I wasn't blogging from there! But about a year ago an incredible family in our world gifted us with a Kindle, which has been an absolute God-send not just for when I'm in the hospital, to stay connected and entertained, but also in parenting a two year old! ;) And this week I was able to get a keyboard to go with it, which I'm so excited about! I cranked out three quarters of this post in no time! All that to say, you should be seeing more frequent but less lengthy posts from me in the future. SO many times throughout the week I think, "Ah, I should blog this!" usually as I'm learning something I'd love to get down in ink and share with you all. Now I'll be able to do that much more efficiently. Wahoo!<br />
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I hope I've informed, encouraged, spoken truth or life into your airspace today.<br />
I'll close with this:<br />
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"This day I call the heavens and the earth as witnesses against you that I have set before you life and death, blessings and curses. <i><b>Now choose life, so that you and your children may live</b></i>, and that you may love the Lord your God, listen to His voice, and hold fast to Him.<br />
<i>For the Lord is your life, and <b>He will give you many years in the land</b>."</i><br />
-Deuteronomy 30:19-20<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5ILddhokjCJLbZhjGkyn6E0esAlsPaQ8IT1fABueOLDioZAae81TfozLng665_CLtbqqQBjtsnQNQbZac5mXt1vIkLCQIgkMe_19kx6szSjLAqB6t7KJzlKDZ7MFCjFngXnz6GfOEF166/s1600/IMG_60505469878064.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5ILddhokjCJLbZhjGkyn6E0esAlsPaQ8IT1fABueOLDioZAae81TfozLng665_CLtbqqQBjtsnQNQbZac5mXt1vIkLCQIgkMe_19kx6szSjLAqB6t7KJzlKDZ7MFCjFngXnz6GfOEF166/s1600/IMG_60505469878064.jpeg" height="266" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My two greatest treasures and me at MESH Conference this week. Nothing can keep us away from the House for long! I love my church!</td></tr>
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Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-85653987834036363992014-01-16T21:03:00.000-08:002014-01-16T21:51:06.198-08:00Jaundicey!If you have seen me in the last two weeks you must have noticed the significant jaundice I have developed. My skin is a glowing gold yellow and the "whites" of my eyes haven't been white in a while! It's no fun when you cant figure out what color top to wear that will somehow downplay the yellow skin, everything seems to magnify it, ha!<br />
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The other night my faithful friend Emily took me to Target for a "mom's night out." I've started to not care what people think, and use the store's motorized courtesy carts when I'm tired and need to save my energy. How lame is the alternative anyway, sitting at home not having a blast at Target?!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyQJ3ATB9jqpu761f-PUFzgOMHo07YhxMwhqJWFojriJvCp0Y32WsHL9qG8RaWyhumZ16PmDtmU51LvfQtdh4zxcdQLWCI1WWi3z9GFm2kkexYWSc_Ao15yYXQcjgQrCepzltZCOrI7kKK/s1600/Screenshot_2014-01-15-23-59-14_1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyQJ3ATB9jqpu761f-PUFzgOMHo07YhxMwhqJWFojriJvCp0Y32WsHL9qG8RaWyhumZ16PmDtmU51LvfQtdh4zxcdQLWCI1WWi3z9GFm2kkexYWSc_Ao15yYXQcjgQrCepzltZCOrI7kKK/s1600/Screenshot_2014-01-15-23-59-14_1.jpg" height="177" width="320" /></a></div>
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I have not looked very healthy, however, God's grace abounding, I have really reasonably been able to keep up with my life, my roles as homemaker, wife, and mom to one very energetic little lady! thank You Jesus!</div>
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I haven't had any signs of infection, cholangitis or pancreatitis, PTL, but some discomfort and feeling a little out of it, I think from the excess bilirubin rolling around my body. It definitely needs addressing, so I called my liver team and had a bunch of labs drawn today. Tomorrow afternoon I see my hepatologist.</div>
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I have a hunch about the cause of this and I am praying it is right, because it's fairly simple and quick fix that should/could clear up this issue for 5-10 years. With PSC it usually takes years for the bile ducts to become so scarred that they narrow to the point of causing back ups which lead to infection, and total blockages. When I went in the hospital in late September with the serious symptoms of cholangitis, they tried to open a narrowing during an ERCP, but due to a sharp turn in my bile duct from the way everything was connected to my transplant liver, the doctor just couldn't get it. At that time they told me they could try going from the outside of my abdomen with slightly more risks, but did not need to because the antibiotics cleared up everything so well.</div>
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I am thinking that this is the same narrowing and it is telling us that it needs some help :)</div>
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Anticipating a short hospital stay for a pretty simple procedure like that, and believing it will calm down this PSC for years to come, I am hoping that is what the doctors see and want to do! Even the idea of actually <i>planning </i>a hospital stay<i> </i>where I can make arrangements for my family, pack, bring healthy food... what a difference that would be compared to all my other hospital stints these last 18 months :)</div>
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please be in agreement that it will be a simple fix and clear this up quickly and easily. God is so faithful, I know He's got this!</div>
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Thanks friends :)</div>
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Here's a photo of me and my sweet gal. We got to take a little walk in the crisp winter fog today. Great time, great memories. I'm so thankful to be mom to this world changing gal!<br />
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<iframe allowtransparency="true" frameborder="0" height="710" scrolling="no" src="//instagram.com/p/jPmKmWhhu-/embed/" width="612"></iframe></div>
Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-35188383066627178972013-12-30T20:59:00.000-08:002013-12-30T20:59:16.040-08:00Wrapping up 2013Yes, a post from me is past due! Yet, I still have no real computer or keyboard to write at... so that's my excuse for not updating more often. ;) That and the nomadic moving around we had to do in October and November, and the fun busyness of moving HOME and the Christmas season. I have quite a lot to share but it will probably come in pieces over the next month or two. For now, I have the following New Years' reflection to share. God bless you and your reflecting on 2013!<br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #333333; line-height: 17px;">Wrapping up 2013, there is perhaps no better collection of words I can find to express this last year, and my fresh hope for the year ahead. Cheers to all that You have in store in 2014, God! I'm here, I'm ready! </span><i class="_4-k1 img sp_75mcuz sx_a5d10a" style="background-color: white; background-image: url(https://fbstatic-a.akamaihd.net/rsrc.php/v2/yf/r/vlKxhqEGtLc.png); background-position: 0px -4100px; background-size: 20px 4276px; color: #333333; display: inline-block; height: 16px; line-height: 17px; vertical-align: -3px; width: 16px;"></i><br style="background-color: white; color: #333333; line-height: 17px;" /><i><br style="background-color: white; color: #333333; line-height: 17px;" /><span style="background-color: white; color: #333333; line-height: 17px;">Psalm 116:1-19 MSG:</span><br style="background-color: white; color: #333333; line-height: 17px;" /><br style="background-color: white; color: #333333; line-height: 17px;" /><span style="background-color: white; color: #333333; line-height: 17px;">I love God because he listened to me, listened as I begged for mercy. He listened so intently as I laid out my case before him. Death stared me in the face, hell was hard on my heels. Up against it, I didn’t know which way to turn; then I calle</span><span class="text_exposed_show" style="background-color: white; color: #333333; display: inline; line-height: 17px;">d out to God for help: “Please, God!” I cried out. “Save my life!” God is gracious—it is he who makes things right, our most compassionate God.<br />God takes the side of the helpless; when I was at the end of my rope, he saved me. I said to myself, “Relax and rest. God has showered you with blessings. Soul, you’ve been rescued from death; Eye, you’ve been rescued from tears; And you, Foot, were kept from stumbling.”<br />I’m striding in the presence of God, alive in the land of the living! I stayed faithful, though bedeviled, and despite a ton of bad luck, Despite giving up on the human race, saying, “They’re all liars and cheats.”<br />What can I give back to God for the blessings he’s poured out on me? I’ll lift high the cup of salvation—a toast to God! I’ll pray in the name of God; I’ll complete what I promised God I’d do, and I’ll do it together with his people. When they arrive at the gates of death, God welcomes those who love him.<br />Oh, God, here I am, your servant, your faithful servant: set me free for your service! I’m ready to offer the thanksgiving sacrifice and pray in the name of God. I’ll complete what I promised God I’d do, and I’ll do it in company with his people, In the place of worship, in God’s house, in Jerusalem, God’s city. Hallelujah!</span></i></span>Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-78529482828906527052013-10-07T18:12:00.000-07:002013-10-07T18:12:09.450-07:00Loving Hillsong Young & Free!Have you checked out the new <a href="https://hillsong.com/en/" target="_blank">Hillsong</a> <a href="https://hillsong.com/en/youngandfree/" target="_blank">Young & Free</a> album, <i>We Are Young and Free</i>?<br />
Our fam has been excited about this since the first single released in the summer. While we were waiting for a plan in the ER last Monday night, Hubs downloaded the full album for me. If you haven't listened to or purchased this awesome new worship album yet, I highly recommend!! Hillsong music continues to bless the church worldwide. I know for me, so many of their songs parallel different points and milestones along my life journey and testimony!<br />
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I've had track six, "Love Goes On," on repeat today. Retreating into the lyrics...<br />
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<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">VERSE</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">We found love that never runs dry</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">From the depths</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">To the sky</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">Eyes fixed on the One who knows no end</span><br />
<br style="font-family: Arial, Helvetica, sans-serif; font-size: 13px;" />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">You stand strong for all of time</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">In the joy</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">In the trial</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">You are the Beginning and the End</span><br />
<br style="font-family: Arial, Helvetica, sans-serif; font-size: 13px;" />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">PRE-CHORUS</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">Your love goes on</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">Your love goes on</span><br />
<br style="font-family: Arial, Helvetica, sans-serif; font-size: 13px;" />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">CHORUS</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">Ever our heart will seek</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">Jesus in everything</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">From sky to ocean deep</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">Your love goes on</span><br />
<br style="font-family: Arial, Helvetica, sans-serif; font-size: 13px;" />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">Through every rise and fall</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">We are forever Yours</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">One thing we know is sure</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">Your love goes on and on and on</span><br />
<br style="font-family: Arial, Helvetica, sans-serif; font-size: 13px;" />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">VERSE</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">From dawn break into the night</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">You're here with us</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">You're on our side</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">Your arms are forever open wide</span><br />
<br style="font-family: Arial, Helvetica, sans-serif; font-size: 13px;" />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">You stand strong for all of time</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">In the joy</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">In the trial</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">You are the Beginning and the End</span><br />
<br style="font-family: Arial, Helvetica, sans-serif; font-size: 13px;" />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">BRIDGE</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">Love unfailing</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">Never shaken</span><br />
<span style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">Hope awakens in You</span>Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-89481812714860534952013-10-05T23:22:00.000-07:002013-10-06T13:17:42.008-07:00An Episode of Cholangitis, and, We're House-less!<p dir=ltr>Wow, things have been crazy, but today really took an interesting turn!</p>
<p dir=ltr>I came down with a very high fever last Saturday night, and the worst pain all over my body. I'm not unfamiliar with these symptoms, but it's been nearly a year or longer since they came around. Sunday I was in bed all day with the same fever, a pain around my liver area, and feeling nauseous. When Monday I awoke with the same issues, we called my hepatologist, and they said to get in the ER immediately.<br>
We grabbed a few things, scooped up our angel Victory, and made a beeline for Seattle. God always has us covered in these situations! It was nearly rush hour, and the worst rain storm we've had in quite some time, but we got Vicky safely to her destination and us to Seattle, almost fifty miles in total, completely safe and no problems.<br>
It ended up that I was dealing with an episode of "cholangitis." It was confirmed through the last MRI/MRCP and liver biopsy that the disease I had that ruined my first liver and caused me to need a transplant, Primary Scleorosing Cholangitis, has returned in my new liver. What is that disease all about you ask? Well, the bile ducts get inflamed, as with other autoimmune diseases (stinkin inflammation!), and scarring and infections and things happen, and sometimes you need a liver transplant because of all the damage. Anyway, this was the first time this "recurring PSC" has caused any issues for me. After tests, and specialists and hospitalists putting their heads together, they decided I was dealing with a blockage ("stricture") or at least severe inflammation in one of my bile ducts, causing an infection, hence the very high fever, chills, nausea, vomiting, and - oh I forgot to mention before, I turned a nasty shade of jaundiced yellow almost overnight.<br>
So I began receiving antibiotics through my IV, and actually Tuesday morning already saw improvement in my lab tests. My bilirubin on arrival at the hospital was 6.9, and Tuesday it was down to 5.something, and Wednesday 4.something... Yeah God!!<br>
But the antibiotics alone aren't what they usually rely on. I went in for an ERCP on Wednesday, expecting that they would go in with a scope down my throat, through the small bowel, and enter the biliary tree and open up the blockage with a balloon, or stent if necessary. It all sounded so simple, and the doctor really expected to get it done with no complications. The whole thing was supposed to be about 45 minutes.<br>
Well, when I awoke from anesthesia, he came in and told us that he was unable to even get into my bile ducts. My anatomy is different because of my transplant; my "hook ups" are a bit wonky, and there was a 90 degree angle that he tried for AN HOUR AND A HALF to get the tools around, and just couldn't. The doctor was so kind, and he looked like he was about to cry, and kind of just ran off after he told us the news. I was so disappointed, because I thought for one thing, "well gee if this is just the first of these episodes, and a person with PSC deals with these ongoing for years, what in the heck are we going to do [next time]?!" And I felt so bad for my poor doctor who wanted to help so badly and tried so hard.<br>
It wasn't such a lighthearted moment as I'm making it out to be here. It was overwhelming. Kind of devastating. You may have seen <a href="http://instagram.com/p/e-thg6BhmV/">my Instagram pic</a> my hubby posted....</p>
<p dir=ltr>So fast forward to today. I got to leave the hospital yesterday, and must be on oral antibiotics for ten more days. We're praying that the infection and inflammation dissipate completely, this knawing pain I'm having in my right side goes AWAY, and no more episodes of cholangitis occur. No sweat :)<br>
I follow up with my hepatologist next week, and I suppose we'll address some serious topics. Like, what if this happens again and the infection moves quicker, and they can't get in the bile duct to fix it?  They did tell me not to mess around with these kinds of symptoms, because one of these infections can go septic very quickly. meaning your whole body is fighting an infection of the blood (a.k.a. even more, ICU-type serious). There is an option at that point, they said, of going in through the side of my abdomen kind of like an old fashioned liver biopsy, where they can address a stricture and infection that way. Much more invasive and risky, too. Blah. Praying that that is never needed!!!</p>
<p dir=ltr>In the meantime...</p>
<p dir=ltr>We are surrounded by the most incredible people. Have I mentioned that? I think I have, but I can't say it enough. I can't even get into how overwhelmed and nearly numb from complete awe that Hubs and I are feeling today, at God's faithfulness, and the loyalty and get-it-done type of people He's put in our lives.<br>
We've been needing to get to remodeling our living room for quite a while. On the 15th of this month it will be five years since we moved into our house, and since we moved in, we've been battling issue after issue. When we bought it we thought it was, although old, just in need of cosmetic updates, and a lot of love and TLC. But then the issues began.<br>
We first suffered a miscarriage in January 2009, and found mold growing on our bedroom wall and mattress just the same day. (Yeah that was an overwhelming day.) We slept on an air mattress in our living room for two months while my husband tore out that room down to the wall framing, put in insulation and drywall, and made it safe for us to sleep in there. This was in the afternoons every day, and into the late night, as he worked the 3am to 11:30 am shift back then. We got that done, bought a new mattress, and enjoyed our warm, quiet new bedroom sans-oozing-wall paint so much!</p>
<p dir=ltr>Labor Day 2009 thought we'd do a little project in the kitchen - new countertop and cabinets around the sink. No big deal right? Well, he took out the old sink cabinet, and found that the floor was rotten from a previous leak... down to the joists. We then had to dive head first into an unplanned, unexpected, complete gut job of our kitchen, floor joists to ceiling torn out. Everything in the subfloor was rotten and walls were crumbly old plaster and ... short story, that was a two month adventure of microwave cooking and living in even less than our house's 650 square feet offers, because all of our kitchen contents was in our living room as he worked on it. Again during afternoons after working eight hours a day at his full time job.</p>
<p dir=ltr>When I got pregnant with Victory, we knew we needed to redo the second bedroom like we'd done our own, as it didn't have insulation in the walls, and was musty and the plaster walls clearly needed to go. Another project for my awesome hubby and his not-so-free time. When we tore out the wall between the bedroom and the bathroom, there was the creepiest looking, gross, anenome-armed, tendril-waving, nasty-colored mold I ever could've imagined, on the inner side of the bathroom wall. You could see that there had been a water leak from the roof in the past, and they just replaced two square patches of wall, and left the rest. NOT A GOOD IDEA! It was nasty. It freaked me out. So that one bathroom wall had to be replaced at that time, but we couldn't do the bathroom then too, so we had some open holes where it just didn't go in right next to the old plaster and tile, and creatures from the crawl space would come up through the cracks to visit some times. Ick!</p>
<p dir=ltr>Then we finally got to do the bathroom, as the tile was done wrong, outdoor grout was used to do it (a.k.a. water would go right through it!), it was crooked, and it needed some serious help. Also the window was put in right where the water goes when the shower is on... not good! When that remodel was started, the entire outside wall had to be cut out as even the framing under that silly window was rotten. We have a funny picture of one of us (pretending to be) on the toilet waving out to the backyard through the huge five feet by eight feet hole.  :)</p>
<p dir=ltr>So, all that's left now is the living room. With all of my health problems, and because of mold issues we've had in the coat closet in there, we figured there were some problems with moisture, and really looked forward to getting that room's icky old plaster torn out, getting the walls insulated, and finally finishing this little house.</p>
<p dir=ltr>Because of all the health issues lately, a few incredible friends of ours teamed up and went in today to start the job, including bringing in a mold inspector. Well, he found that the problem wasn't so minor as a little musty closet. <i>The report? </i><b>There is mold growing on all of our floor joists under the house. Black mold. For someone with a compromised liver, this is lethal within a very short time once exposed. We cannot live in our home until the floor joists are replaced under the house. This job will cost $20,000 to $25,000.</b></p>
<p dir=ltr>Wow.</p>
<p dir=ltr>Wow.</p>
<p dir=ltr>Yeah.</p>
<p dir=ltr>This is where our incredible friends come back into the picture. They started a fund for us the other day, with the plan to raise enough money to make our house safe for us, and to cover the medical bills that have piled up this past year of craziness. The timing of all of this is nothing short of God-ordered. I look back at all we've been through, and know that if it weren't for the crazy things we've already walked through with this house, and my health, we'd be steam-rolled by this. It is insane, to be told in a matter of hours that you cannot go home because it will kill you. We are nomads. Houseless! Don't get me wrong, I'm emotionally EXHAUSTED just experiencing the magnitude of it all. This crew of faithful friends and neighbors were at our house for ten hours today, packing up our belongings into boxes, getting them to safe places, setting it up for this work to be done. Believing that the work will get done, that God will provide, and we'll be able to get back in our home, and <b>finally</b>, live there being healthy and safe and comfortable.</p>
<p dir=ltr>I know that it will work out. God <b>will</b> provide. When things can't get much worse, and He comes through for you, and this same process happens over and over, and over again, you develop this roll-with-the-punches kind of ability that (especially if you're like me - everything in it's place, a place to call home, home is where you ground yourself) you just have to laugh! God <i>always always always</i> has our best in mind, and when you trust Him, you get to experience the most <b>amazing</b> God-events and acts of humanity and miracles and coming-through-in-the-clutch moments... God is amazing, you guys!<br>
I am grateful to be experiencing the calmest peace right now, knowing that as long as I have Him, and I get to be near my treasures, my dearest loved ones, that is all I need, and the rest is just extra blessing! And for that I say, we may be house-less, but we are not home-less. After all, this world is just our temporary home. There is always something more to learn, more character to develop, more JOY to CHOOSE! Okay, God, I'm game. Keep growing me. I trust You. You will never fail.</p>
<p dir=ltr>P.S. I may be rolling with the punches now but... check back with me in a few weeks. Haha! (I'm just human.) I hope we can be home in time for Christmas. :)</p>
<p dir=ltr>Oh! and the link to the fund is: <a href="http://www.gofundme.com/OperationAgnew">www.gofundme.com/OperationAgnew</a></p>
<p dir=ltr>Little house, see you in a while!<br>
</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPXDh1ZRyw0WO85-m9LEeLNB8W04MwwJ98hVtVpiLtMXpdthA-4Utub_hukLFG0tblLVbs8MBFu8EWPDZUSZSN5vhR9w31iFNbU9TJ-3dbw6i74q8W141dx0_RSozWC-3f8CyktGRDx7Dd/s1600/120821_0005.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPXDh1ZRyw0WO85-m9LEeLNB8W04MwwJ98hVtVpiLtMXpdthA-4Utub_hukLFG0tblLVbs8MBFu8EWPDZUSZSN5vhR9w31iFNbU9TJ-3dbw6i74q8W141dx0_RSozWC-3f8CyktGRDx7Dd/s640/120821_0005.jpg"> </a> </div>Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-84453441107110207492013-09-06T12:31:00.001-07:002013-09-06T13:02:03.039-07:00Liver Biopsy results<p dir=ltr>I just got off the phone with my doctor.<br>
"Well, good news and bad news."<br>
My biopsy results showed No rejection that they could see, and no new issues such as autoimmune hepatitis. Good news! <br>
She said there is always a chance it is a chronic rejection that is not detected in biopsy, but not highly likely.<br>
As far as a reason for the elevated liver enzymes, there is no clear answer. I will repeat blood tests in a couple weeks and hopefully numbers will look good!<br>
In the meantime, no medication changes or additions, and thankfully I'm almost tapered off Prednisone and don't have to go back on!</p>
<p dir=ltr>There was some more information from the biopsy, though. <br>
The Bad news, "You do have PSC [primary sclerosing cholangitis]." <br>
That is the disease that completely ruined the liver I was born with, and caused me to need a transplant at age 16. My doctors have been talking about the PSC being "back" since a biopsy I had four years ago. But it was never confirmed, and I always take the comments with a grain of salt. Not because I'm in denial, but because I know my God is bigger. There is the lens of science, and the lens of faith - the latter is much more real to me than the former!</p>
<p dir=ltr>Only in the past two years, and really last couple months has PSC come up in discussion more, when I did my MRCP test and this last biopsy. <br>
The MRCP showed no blockages in my bile ducts, great news. PSC is an autoimmune-caused inflammation of the bile ducts, and what happens over time is the liver becomes scarred, from bile not being able to get through and backing up in the liver. (For photos of what a healthy liver looks like vs a liver that's been ruined from PSC, see my post <a href="http://shechoosesjoy.blogspot.com/2011/05/my-liver-transplant-in-photos.html?m=0">http://shechoosesjoy.blogspot.com/2011/05/my-liver-transplant-in-photos.html?m=0</a>)</p>
<p dir=ltr>So the biopsy showed PSC. This isn't anything urgent, but something to learn about, so I can do all I can in the physical to take care of my body, and get all the info I can to pray more specifically!<br>
I was so young and sick when I had PSC before transplant, I don't remember the day to day Ins and outs of living with the disease. <br>
Example, I've been having pain in my upper right side and some yellowing in my eyes from time to time. I forced myself to be brave and ask my doctor about it (it really is worse not asking, and making up 'what if' scenarios in your head!). I learned that with PSC you can have transient obstruction of bile ducts, which clears up on its own, versus bad strictures which need a sedated procedure to put in a stint to open up. The discomfort of what I'm experiencing is really high some days (like today!) From inflammation in my liver. But I'm grateful it's not the alternative kind of stricture or something requiring me to go to the hospital!</p>
<p dir=ltr>All that to say, first, thank God I'm not having acute rejection and I have no hepatitis! Second, I have some learning to do about PSC as an adult. Third, to my Champions Centre family, you'll probably see me up front often when we have prayer during service, because I'm not going to stop believing God can heal me, or asking Him to do so!</p>
<p dir=ltr>Thanks for your continued support and encouragement. Over the years I have gotten pretty good at "encouraging myself in the Lord," as the Word says we need to learn to do. I wouldn't have survived up to this point without  learning that skill! It's funny, when someone exhibits a strong faith and a positive attitude, and stays busy encouraging others, as people we may start to think, "well they're good, they don't need anything from me." Incorrect!<br>
Never underestimate the power of letting someone know you're praying, or sharing just a few encouraging words, "you're doing good!" "Keep it up!" "God's got this!"<br>
A few months back I got a Tweet from a friend, right after I got home from the hospital, in response to a post I made about Psalm 27:13 ("I will remain confident in this; I will see the goodness of the Lord in the land of the living.") I was putting it out there, declaring it in faith about my life. And my friend responded, "You WILL see the goodness of the Lord." Wow, how those words gave my faith a lift and even today after I got this news, I heard those words in my head.</p>
<p dir=ltr>My best advice for thriving through a challenging season (or in my case, lifetime, haha!):<br>
Be vigilant about what you're letting get in your mind and heart (consider your relationships, social media connections, music and TV influences...). Feed your faith, starve your fears (example: concerned about your health? stay the heck off WebMD! Lol!). Surrround yourself with life-giving people who bring out the best in you and believe and speak good over your life. And Trust God!</p>
<p dir=ltr><i><b>"I will not die but LIVE, and will proclaim what the Lord has done."</b></i><br>
Psalm 118:<u>17</u></p>
Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-4564859165796573942013-08-31T11:51:00.001-07:002013-08-31T11:51:25.674-07:00Liver biopsy<p dir=ltr>On Wednesday I had a transjugular liver biopsy. My liver function tests have continued to stay elevated and so we need to get some information. It was done in Interventional Radiology, with sedation, and they put a plastic catheter down my jugular vein through my neck, and took measurements of the pressures inside my liver and portal vein. I have never had this kind of biopsy before, all the rest have been through the abdomen. It wasn't bad, and I was sedated. But I remember saying, "ouch ouch ouch!" when they removed the plastic catheter and were inserting the metal cannula (which has a hook on the end, the doctor told me- glad I didn't see that!) And vaguely remember them saying they were giving me more medicine. They use the metal hook to take a few biopsy tissue samples of the liver. Before the procedure, the doctor explained that there was a chance because I am post liver transplant with different vein "hook ups" than most people, that they couldn't get the samples without going through my abdomen. But it worked, PTL!!</p>
<p dir=ltr>I was super groggy for a long time after in recovery, and they told me they gave IV Benadryl to help me through the biopsy part- that explained it; that stuff knocks me out!</p>
<p dir=ltr>The doctor told us that the pressure measurements look good, yeah! It will be probably middle of next week before we hear on the biopsies. Just continuing to believe that God is healing me, no cirrhosis, no PSC, in Jesus' name!</p>
<p dir=ltr>I am thankful for great doctors, a beautiful new hospital facility I got the best of the best technology for my procedure, and great staff that always welcomes my little one there with us. Here we are just after I got moved to my bed on the recovery floor. She said, "me, mommy's bed!" So that's what she got :)  </p>
<p dir=ltr>I love my sweet girl of courage!</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZflaI6YNXHPHaRtkwpejr-Qfi367R7gS0LIyuvqIvVYC3WHuDaNWS8A1sOwyCNjfE48TdSbbtiiS7QMTdjtLM2O9eCkeSGYz1lRa7nYOgEvUlndVbDYA8WaMx8iC5pEcPZsM8cLGfVFj3/s1600/1377813996755-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZflaI6YNXHPHaRtkwpejr-Qfi367R7gS0LIyuvqIvVYC3WHuDaNWS8A1sOwyCNjfE48TdSbbtiiS7QMTdjtLM2O9eCkeSGYz1lRa7nYOgEvUlndVbDYA8WaMx8iC5pEcPZsM8cLGfVFj3/s640/1377813996755-1.jpg"> </a> </div>Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-63241500998919780782013-08-20T18:30:00.001-07:002013-08-20T18:30:35.351-07:00Seeing and Celebrating<p dir=ltr>I am a firm believer in the promise that God will replace or restore what has been lost. Time. Strength. Love. Relationships. Purpose. Family. Friends. Joy.<br>
I love the Scripture, "I will restore or replace for you the years that the locust has eaten." (Joel 2:25)<br>
A close second, "what the enemy intended for harm, God has meant for my good." (Genesis 50:20)</p>
<p dir=ltr>At the moment I'm sitting here drinking iced coffee, watching a little HGTV and skimming Martha Stewart Living mag on my lap (the June issue, because I'm that behind, haha), and listening to my girl chatter away to her dollies through the baby monitor. <b>Rare</b> Momma recharge moment, and I love all of it- including and especially the full day we've had leading up to this little respite. Because it's still new to me after months and months of being too weak or sick to do this? Probably! But mostly because, for weeks now, I'm overwhelmed with the fact that that <b>it's such a gift to have work to do, and strength to do it.</b><br>
You don't realize how sick you were until you finally catch up from nine months of survival mode and realize: "I'm not a terrible cleaner, or home owner, or pack rat- I was just conserving energy that I needed to fight and survive!" :)<br>
Grace for the self: so important.</p>
<p dir=ltr>Victory turns two on Friday. TWO! Where does the time go? Well, I know where most of this year went. Since last October (ten months ago) I've been in some crazy health circumstances. Thankfully, miraculously, wonderfully, the ITP crisis has been quiet - in remission as the doctors would say- hopefully completely Healed, I say- for weeks!<br>
Now (because if it's too quiet, we'd be bored?) I'm facing a different kind of health issue. Urgent, but not critical. My liver enzymes have been elevated for weeks, and there's talk of rejection, biopsy, ruling things out, confirming other things... a bit frustrating in how cryptic and unavailable the Drs have been, and I haven't been able to speak with my actual hepatologist in weeks. August = vacay month it seems :)<br>
I should be hearing the plan by tomorrow though, and it will be good to know what it is.</p>
<p dir=ltr>Despite this new challenge, I am overwhelmed with satisfaction at how well our little family not only survived the past ten months, but we thrived. And we are determined to keep thriving, no matter what we face in the weeks and years ahead.</p>
<p dir=ltr>Victory is turning two on Friday and I don't feel like I've missed one thing. God is so good. And my little girl is such a blessing. Earlier today she climbed up on a kitchen stool, turned on the faucet, and started rinsing dishes. I asked, "do you want to hand me those, you rinse and I'll load the dishwasher?" An emphatic, "Yeah!" was her response, and together we loaded the dishwasher. Pretty soon the sink was empty. This is her norm. Watching us do things around the house, and wanting to join in or take over and help. The joy she brings to our family is immeasurable.<br>
My <i>23 </i><i>month old</i> is speaking in short sentences already. She jumps and dances and laughs, and has an incredible sense of humor. She sings. She lifts her hands sometimes during worship when we livestream church.<br>
She is brilliant, watching something once and imitating it immediately, or days later, with attention to detail, and determination. <br>
By the way... This is not a mommy brag post. This is not meant to make you think I have it all together. Oh boy am I still a work in progress. This is a brag post I intend to be pointing up to my amazing God. Every good thing, every gift, I just smile and look up...</p>
<p dir=ltr>I just marvel at how so many blessings can be wrapped up in one tiny person.</p>
<p dir=ltr>However: do not be mistaken. My girl is of course about to turn two, and showing all those parent-character-testing qualities as well.<br>
[In fact I had to remind my girl at least three times while working on this post, that this is indeed naptime... she finally fell asleep... and now a quick twenty minutes later she's up. Win some, lose some :) ]</p>
<p dir=ltr>I look for the teachable moments- for her and for me- and smile at the end of each day. What a gift it is to be a mom. Especially after losing a baby four years ago, and when this little one was just two months old, being told the liver disease that ruined my first liver has returned. And this year of absolute craziness where in June my Hubs - the always believing for healing, never expressing worry, rock of our home- said (after I was out of the CCU and home from the hospital) he thought he was going to lose me.</p>
<p dir=ltr>Recently, many of my friends and acquaintances have been either announcing first pregnancies, or a second or third little one on the way. It can be easy to get sucked into a poor me, no fair mindset. We could not even think about trying to get pregnant again this year, as the implications of a pregnancy combined with ITP could have been devastating for me and a baby. We have to do such a balancing act of faith vs practical. Especially because I'm a big faith, "but God!" person.</p>
<p dir=ltr>I may never be able to get pregnant again. Or possibly, I <i>shouldn't</i> ever get pregnant again. If my liver doesn't shape up, the doctors will start telling me things like it is unwise and dangerous to be pregnant.<br>
Where some couples only need to decide how many children they would like to have and how to space apart the pregnancies, we have to talk about things like, "is my body even capable of carrying another pregnancy? What if the ITP returned? Will colitis flare again like last time? What's my liver going to do? How will these meds affect the baby?" And that horrible question I learned to <b>stop asking</b> some time ago, but I'm sure some of you wonder if we do, "What if a baby survived but not me?"</p>
<p dir=ltr>I'm not trying to be a downer. I am normally pretty positive here [<b>she chooses joy</b> isn't just a title, it's my life!], and truly that is how my thoughts are most of the time. I've done quite a bit of <i><b>work</b></i><i> on my thought life</i> the past four years. Today I just wanted to shine a little light on my very real world, not all rainbows and cotton candy clouds, and show you (though I'm not sure I'm doing a good job sticking to the point Lol!) that even with seemingly unfair or frightening circumstances, you really can <b>thrive!</b> I hope I am sharing how it is possible to walk through life with serious circumstances, and at the same time have complete faith in a God that does the impossible every day.</p>
<p dir=ltr>Victory is a <u>double</u> blessing of a baby in one little girl, and not a day goes by that I don't see that and thank God for that.</p>
<p dir=ltr>Zechariah 9:12 in The Message says, "This very day I'm declaring a double bonus- everything you lost returned twice-over!"</p>
<p dir=ltr><i>My heart rests </i>because, while I dream of having a bigger family one day and I believe God <b>can</b> and <b>will</b> heal me, and may make that dream happen, my heart is full being a mother to my one wonderful Victory.</p>
<p dir=ltr><b>What if God has already fulfilled a promise to you, and you just haven't noticed it yet?</b> You looked, but didnt <i><b>see?</b></i></p>
<p dir=ltr>We need to look for and see the good in what we have, before jumping on a train of thought comparing our life to another's, or whining at how unfair we think life is. If I spent all my time only wishing I could be pregnant again, or have more babies, or that we had the resources to adopt instead of paying medical bills, <b>I would be robbing myself and my family of being</b> <b>fully aware and grateful for all I have in the present</b>.<br>
I missed a lot of days and nights with my girl this year, in the hospital, the infusion center, the clinic, my bed. I had to trust that she was going to be just fine, and so was I. I had no choice on my physical location, and the way I saw it, no choice in my thoughts either. <i>I had to fight to trust</i>!</p>
<p dir=ltr>And here we are.<br>
Celebrating TWO, celebrating my platelets recovering, celebrating our faithful God!<br>
Instead of looking at what I miss, I choose to see the restoration, the full replacement and overflowing beyond, of what was lost. <br>
And <b>celebrate, celebrate, celebrate,</b><br>
rejoice, and thank God!  :)</p>
Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-58204355656318709692013-08-08T16:11:00.001-07:002013-08-08T16:11:03.784-07:00TC13<p dir="ltr">It is a wrap! And in the words of my pastor, Wow wow Wow Wow wow!<br>
We just finished an incredible Team Church Conference at Champions Centre. The best ever. Jesus was present in and amongst everything. It was over the top rich in quality and quantity. We are all reeling from the worship, wisdom, watershed moments... simply too much to sum up yet or in a short post.</p>
<p dir="ltr">I just want to say, I am psyched that finally, my fifth year at CC, I got to live my dream of serving at TC Conference. I am exhausted, I gave it every thing I had. And that is enough. My body stuck it out (yep I'm completely worn out today, but I made it!) and my labs even came back this week BETTER still. Thank You Jesus!</p>
<p dir="ltr">I love this House, I love my church family, Iove Jesus' church, and am so excited as we are in amazing days of love and unity amongst the Body of Christ. We are alive in this era - these ARE the "good old days" - for such a time as this! Great things ahead... :))</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcT2btKcly1XSHvO-JhcRiYRMnGCYbUVAyVJ4ruboJfEuuwevuyzwv_H4Jf13hzxEKzClyArcSGaYjN1SQmL_ah0AsAm3a89mzpZ8bGEmOdf5AqJclPMTND7eFuP1ANN8Gm2RziTacbOjU/s1600/20130807_081848.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcT2btKcly1XSHvO-JhcRiYRMnGCYbUVAyVJ4ruboJfEuuwevuyzwv_H4Jf13hzxEKzClyArcSGaYjN1SQmL_ah0AsAm3a89mzpZ8bGEmOdf5AqJclPMTND7eFuP1ANN8Gm2RziTacbOjU/s640/20130807_081848.jpeg"> </a> </div><div class="separator" style="clear: both; text-align: center;">Me and my Hubs ready for Day 3</div><div class="separator" style="clear: both; text-align: center;">(I'm looking a little tired but so happy!)</div><div class="separator" style="clear: both; text-align: center;"><br></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizZp15W0bGrK_pzw6Zz5TqFjvW2FGG_xWqs8M9uEK5hNz6hNiciKc9sOoD8fe-1wC1e-7tMUDzBcFWNLJUaJKnrQTzGxvCbx5C9oKYp2Ur1xbzP_PKpum6KRu-VYB2GhU7jYfdsm_ptjhm/s1600/20130807_205544.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizZp15W0bGrK_pzw6Zz5TqFjvW2FGG_xWqs8M9uEK5hNz6hNiciKc9sOoD8fe-1wC1e-7tMUDzBcFWNLJUaJKnrQTzGxvCbx5C9oKYp2Ur1xbzP_PKpum6KRu-VYB2GhU7jYfdsm_ptjhm/s640/20130807_205544.jpg"></a></div><div class="separator" style="clear: both; text-align: center;">My beautiful friend Nina and me last night in the TC13 Photobooth</div>Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-77142692933981140602013-07-30T07:07:00.001-07:002013-07-30T07:22:38.102-07:00What's Happening<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: inherit;">Ok, so I am about a month overdue for a major update on everything that's been going on with me. Our one "real" computer in the house, a little netbook, hasn't had a working screen in almost two years, so when I need to sit down and </span><i style="font-family: inherit;">really</i><span style="font-family: inherit;"> blog, I have to make the time to turn it on, plug in the special cord that Hubs rigged up to connect the netbook to the TV, and get a chair over to the spot, hunker down and start typing. And then more recently our little netbook does this really charming thing of shutting off, completely randomly, either while paying a bill, writing a blog post, or worst of all - livestreaming </span><a href="http://championscentre.org/live" style="font-family: inherit;" target="_blank">church</a><span style="font-family: inherit;">! Oh well, we make do. I am going to type as much as I can while old Trusty (or Not-so-Trusty) is running, and see how far I get :)</span></div>
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<span style="font-family: inherit;">So. I have been out of the hospital for about six weeks, I think, and it has been AMAZING! The weather in Seattle has been out of this world beautiful, and I've been able to catch up on things at home that have been neglected for the past ten months as I was just struggling to stay alive and functioning in the very basic human mode. The other day I <i>finally</i> (as in, a year later) organized the big cabinet we put on the bathroom wall, cleaned it out of everything that had piled up over the year - wax ring for installing a toilet, anyone? - and got all of our bath towels put in the there.</span><br />
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<span style="font-family: inherit;">Wow, that felt good to finally accomplish! When everything unnecessary and unused is OUT of a space, and it just has what we use and need, I feel so much better. So yay me, for slowly but surely working on things and getting to enjoy being a wife, mom, and domestic diva a bit again :)</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivv6-xyt_T2dwF6aKKhLGPzTfLENAC0IBD579MHfxmGJ0p0Zyk5dpPh9CJYfT3dDjrYCUSTlqW65mSVOR0NIvFhlhYgbBDPgQ1SEx98xWxF3PkD2N0s3R-8LwGhb0FBtedn7B_E11xtSIu/s1600/20130730_060541.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivv6-xyt_T2dwF6aKKhLGPzTfLENAC0IBD579MHfxmGJ0p0Zyk5dpPh9CJYfT3dDjrYCUSTlqW65mSVOR0NIvFhlhYgbBDPgQ1SEx98xWxF3PkD2N0s3R-8LwGhb0FBtedn7B_E11xtSIu/s640/20130730_060541.jpg" width="480" /></a></div>
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<span style="font-family: inherit;">Another accomplishment was finally putting tile backsplashes up in our kitchen, oh, three years after the remodel too place? Again, what a feeling of accomplishment, and security that no water from the sink or grease from the stove will be splashing onto the drywall (which is, yes, still unpainted) and causing issues down the road). I'm so thankful for the great deal on tile that we got, it was just what we wanted and works great in the room. We repurposed shelving from another area in the house, and I've got my open shelving wall and tile. It's looking pretty cute!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrcPtNCVcVSZv_2azWyJAfjYc1RBEQIIpw2-xtU5V3gnipAICj68Byb_m45HYKZRaEPFATQMw8iO4vfA2aovMk33XP_271cLLfSph_66RfsyB3Phy89zttbxceNm-UjWdl9bWEUu1HBGjx/s1600/20130730_060243.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrcPtNCVcVSZv_2azWyJAfjYc1RBEQIIpw2-xtU5V3gnipAICj68Byb_m45HYKZRaEPFATQMw8iO4vfA2aovMk33XP_271cLLfSph_66RfsyB3Phy89zttbxceNm-UjWdl9bWEUu1HBGjx/s640/20130730_060243.jpg" width="480" /></a></div>
<span style="font-family: inherit;">One bummer we found out is that there is mold under the wall surfaces in our coat closet, and so alas, ANOTHER remodel looms. It will be the last one, it is the closet in our living room, which is our one remaining room with old plaster walls and no insulation. </span><span style="font-family: inherit;">But finding the time and resources to do that, in an already busy and balancing act of life, is a challenge. Good thing Hubs is always up for a challenge - by fall, we will get it done I think, and be much healthier and cozier this coming winter! </span><br />
<span style="font-family: inherit;">In the meantime, I have boxes of my crafts supplies, fabric stash, glassware, birthday party supplies - you name it, sitting in my living room, waiting for a finished closet to be put into. Character building, I say ;)</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit; font-size: large;">So, moving on from house to <b>health</b> - here's what's been happening:</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Going with the most recent events, I am on Prednisone right now in case of liver rejection.</span><br />
<span style="font-family: inherit;">My LFTs (liver function tests - ALT, AST, Alkaline Phos, Bilirubin) have been elevated pretty consistently for a couple months, actually since switching from Tacrolimus to Cyclosporine as my anti rejection med. My doctor is very calm about it, which I really appreciate and need, and isn't panicking, but started me on Prednisone a couple weeks ago and we are going to recheck my labs tomorrow (Wednesday). If numbers aren't improved, I have to go in for a liver biopsy. They will want to check for rejection, as well as any issues like infections and what not. It occurs to me that after so many blood transfusions this year, they will look for hepatitis as well. It will all work out!</span><br />
<span style="font-family: inherit;">Interestingly enough, the reason they can do a liver biopsy without the risks of bleeding is that...</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">ITP seems to be in total remission!!! GOD IS GOOD!!! My platelets have been steadily climbing since I left the hospital in mid June, and that has been an absolute encouragement. It is so fantastic to get a call from my hematologist or go online to check my results, and find that the platelet number is higher and higher every time. What a gift after such a crazy year of scary-low critical platelets! Most recenty, last Monday, my platelets were at 149,000. The range they call "normal" is 150,000-400,000, so WOW, I was just one point away :)</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">In light of the elevated LFTs, I went in for an MRI/MRCP earlier this month. They were checking to make sure I did not have any strictures in my bile ducts, as when you have PSC (Primary Sclerosing Cholangitis) liver disease, those can become a problem, and cause back ups and pain, cholangitis infections, and elevated numbers. I refuse to accept that PSC is back in my new liver, despite what the reports may have shown over the past couple years. I believe God healed me with my transplant, and I am sticking with that. And awesome as He is, God gave us a great report on the MRI! No strictures, and actually <i>improved</i> liver tissue in an area that radiology report eighteen months ago said was looking not so good.</span><br />
<span style="font-family: inherit;">Awesome, right?! :)</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Finally, the other health event I had was my annual colonoscopy. Woo, party time! (Haha!) </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUelu5lNZEhdDL0Z48eKCJWMc8gOFn1iIm6xpHayhsttM-OPRurcMF_CSCiAvqdiH3S2nRH0WOac69DVmJXLCbC6vW0nk46Fs8Gp0MXvmv9ibka7cDk9S4dptcP_bXK9IVSrxy98PTbEp1/s1600/20130702_153738.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUelu5lNZEhdDL0Z48eKCJWMc8gOFn1iIm6xpHayhsttM-OPRurcMF_CSCiAvqdiH3S2nRH0WOac69DVmJXLCbC6vW0nk46Fs8Gp0MXvmv9ibka7cDk9S4dptcP_bXK9IVSrxy98PTbEp1/s320/20130702_153738.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">colonoscopy prep solution</td></tr>
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<span style="font-family: inherit;">With all of the colitis problems this year, the major bleeding coming from my colon and just being exacerbated by the ITP low platelets, my gastroenterologist and I came up with a plan to start talking about colon removal. The first step in the plan was to even accept the idea. Talking about a simple tiny biopsy and colonoscopy, let alone complete removel of my colon, is very serious when my platelets were as low as they were (8-10,000, consistently). It is much more than an issue of surgery, as there's talk of hemorrhage risk, and also they said I must do the surgery at a liver transplant center, because there is a risk of liver failure when doing abdominal surgery when liver scarring or cirrhosis is evident (so 'they' say). As you can imagine, becoming comfortable even talking about a decision that major was a big deal. That alone took me a few weeks.</span><br />
<span style="font-family: inherit;">Then I started doing research, asking questions, and had an interview with my doc and asked all sorts of things about colectomy, ostomy bags, and so on. If I am not completely healed of colitis, a surgery and ostomy looks like it is in my future. That was another big mental thing to get a grasp of, and took a bit of time.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFVcRIIMubN7yFk6eDPEYV0GhzAeBtSzK3K1BhRTjtsuyp_JVkshq-M3dkne2T6IC_niDb5DR4csKX6Q4LY-XHhZQjOAnb8dPnru-syZtcb4fSqeZzFZ2KVVa33Lv_KBs7t6tJfJhqdUfL/s1600/20130703_100422.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFVcRIIMubN7yFk6eDPEYV0GhzAeBtSzK3K1BhRTjtsuyp_JVkshq-M3dkne2T6IC_niDb5DR4csKX6Q4LY-XHhZQjOAnb8dPnru-syZtcb4fSqeZzFZ2KVVa33Lv_KBs7t6tJfJhqdUfL/s320/20130703_100422.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snuggles with my girl while waiting for my doctor</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQLj0t6u2gp7nQogLLhZTlUCSqLgoJjn0ZFLAu5FjQ_aqaNozTyQev9kVBx47dc6U-_anqXr4r5ZVQ_FIeAy21O-IjiCoFy6SZnBtWy2TDhozjlLtvB0fOfdRSw2MpnoXqyh37E9CNDI8Z/s1600/20130703_100348.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQLj0t6u2gp7nQogLLhZTlUCSqLgoJjn0ZFLAu5FjQ_aqaNozTyQev9kVBx47dc6U-_anqXr4r5ZVQ_FIeAy21O-IjiCoFy6SZnBtWy2TDhozjlLtvB0fOfdRSw2MpnoXqyh37E9CNDI8Z/s320/20130703_100348.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My smarty girl, checking me out after she saw my doctor do the same thing :)</td></tr>
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<span style="font-family: inherit;">The most recent step was to have my colonoscopy, so they have a current picture of what my guts look like to give to the surgeon if we continue going down that surgery road. This wasn't even an option for most of the year, because of such low platelets. But my platelets started improving and we scheduled the procedure, and the day before I went in to get my numbers checked. They were planning to give me a platelet infusion during the procedure, to prevent any bleeding issues, and only take a couple biopsies. Well, my platelets came back so good, I didn't need any infusion and they got to take more biopsies, which is always good for monitoring sake. Woohoo!</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Kind of grossing me out, I had a number of polyps in my gut. I've never had that before, even having colitis for nearly 20 years. But they were all biopsied, along with a bunch of other spots of gut tissue - and everything came back clear, no malignancies, no dysplasia! Yeah Jesus! :)</span><br />
<span style="font-family: inherit;">Also, the report, similar to my Liver MRI, came back showing that my guts look better than the last scan, in two areas. There is definitely colitis activity and my transverse (across the top of my abdomen) colon looked worse, but the ascending and descending colon areas are improved. So, hurray for that!</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Thankfully, things have been pretty quiet with colitis and ITP these past six weeks. I am so grateful for that! Not having to worry about bleeding and transfusions and going back to Critical Care or riding in an ambulance... phew! Thank You Jesus!</span><br />
<span style="font-family: inherit;">What a gift it has been to be at home, at church, and around our city with my sweet family and incredible friends, just enjoying the summer weather and all that is good in my life. WHAT a gift.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU8k0L5JvLH2ZbAOf_b6gk8JU-TS6gBQw5KWxeWWQW966YULIHWEJnk7_Mo7zBcCEtJviXzC9eoba7in7TT_A-meFGIRC1NM5-YhZ3cR86gZzhARdyr8VMTT0QGFBfEErk0IURqdbHHvLZ/s1600/20130703_215153%25280%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU8k0L5JvLH2ZbAOf_b6gk8JU-TS6gBQw5KWxeWWQW966YULIHWEJnk7_Mo7zBcCEtJviXzC9eoba7in7TT_A-meFGIRC1NM5-YhZ3cR86gZzhARdyr8VMTT0QGFBfEErk0IURqdbHHvLZ/s400/20130703_215153%25280%2529.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We may live in the 'hood, but our summer sunset views are million dollar :)</td></tr>
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<span style="font-family: inherit;">Pray with me in agreement for a great report on my LFTs and platelets tomorrow! Once my numbers are stabilized, I get to taper off the Prednisone, which is always a good thing. Last night my knees and belly were super swollen from the side effects. Pred is a great drug in the short term, but so many icky side effects when you have to be on it for a while. Speaking of which, is why I am up before dawn today. (Insomnia is another lovely side effect.) Thankfully in the summer, being up this early, it gets light out early, and I have always loved watching the sun come up. One reason I really loved being on crew in college :)</span><br />
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<span style="font-family: inherit;">Today is a new day, full of new gifts, opportunities, and potential! Seize the day - look UP and around at all you have been given - life is good! Xo!</span><br />
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<span style="font-family: inherit;"><span style="background-color: white;">"</span><span style="background-color: white;">So if you’re serious about living this new resurrection life with Christ,</span><span style="background-color: white;"> </span><i style="background-color: white;">act</i><span style="background-color: white;"> </span><span style="background-color: white;">like it. Pursue the things over which Christ presides. <b>Don’t shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up</b>, and be alert to what is going on around Christ—that’s where the action is. See things from</span><span style="background-color: white;"> </span><i style="background-color: white;">his</i><span style="background-color: white;"> </span><span style="background-color: white;">perspective."</span></span><br />
<span style="background-color: white;"><span style="font-family: inherit;">-Colossians 3, MSG</span></span>Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-68156195220607148572013-07-23T15:47:00.001-07:002013-08-09T09:49:43.797-07:00Crock Pot [keepin' the kitchen cool!] GLUTEN FREE Banana Bread<div dir="ltr">
Wow, what a ride it has been these past ten months. There is much to update, so much I want to share that I've been unsure of even where to start. This post will break my writer's block/overload, perhaps, since it's just for fun! :)<br />
The one health update I'll share today is that I am thrilled to report, my platelet count has been steadily climbing since I left the hospital in June! Yesterday it came back one point below NORMAL range! God is healing me thru and thru!</div>
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So onto the banana bread fun!<br />
I discovered this idea when we had a major heat wave the weekend of Mother's Day, and I wanted to make quick bread for the brunch, but did NOT want my kitchen to get any hotter than it already was!<br />
Enter my favorite kitchen appliance: the crock pot! <a href="http://momswithcrockpots.com/2012/04/banana-bread-in-the-crock-pot/">This recip</a>e as my inspiration, <br />
I made some modifications and voila, Banana bread in under three hours with no extra mercury rising in the house.</div>
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What you need:<br />
1 3/4 cup Trader Joe's Gluten Free flour blend<br />
1 tsp xanthan gum<br />
2 tsps baking powder<br />
1/4 tsp baking soda<br />
1/2 tsp sea salt</div>
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3/4 cup coconut sugar (check out Madhava brand Organic Coconut Sugar thru Subscribe & Save on Amazon!)<br />
1/3 cup organic butter or coconut oil<br />
2 cage free eggs, beaten<br />
2 ripe, medium to large size bananas (or 3 small), mashed<br />
1 tsp pure vanilla extract (I use Trader Joe's Pure Bourbon Vanilla Extract), <br />
1/2 cup frozen organic blueberries</div>
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What you do:<br />
Grease the crock of a 3 (ish) quart slow cooker with butter or coconut oil. Set aside.<br />
In a medium mixing bowl, sift together all dry ingredients except sugar (flour, gum, soda, powder, salt).</div>
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In another bowl, cream together butter (or coconut oil) with coconut sugar until blended. Gently mix in beaten eggs, mashed bananas, and vanilla.<br />
Add in the dry ingredients slowly, blending well with a whisk.<br />
Stir in the blueberries (no thawing needed).</div>
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Pour batter into pregreased crock, smoothing the top with spatula. Cover and set to High. Walk away - you're basically done! :)</div>
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Check the bread with a toothpick after 2 hours. It will be done between two and three hours. (Slow cooker power levels vary by brand.)</div>
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When bread is done, toothpick should come out clean, but bread will be moist and oil sizzling on the edges. Remove lid and let cool/set up for five minutes. Cut into pieces and scoop out of crock, or turn out the whole loaf onto a plate and cut to serve<br />
Enjoy!</div>
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*Sometimes it is recommended to prop open the lid with a wooden spoon when baking in crock pots. I've never done this, but know it's an option if bread is too moist/not setting up.</div>
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Update: This recipe is even more fool proof than I thought! I ran out of Gf flour blend but had ripe bananas to use, so I thought I woukd experiment.</div>
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I used 1 cup brown rice flour and 3/4 cup teff flour. I was much more lax with the mixing too, I just combined all the wet ingreds together, added the dry, and put in the crock. This time I set the slow cooker on Low and let it go 4 hours. It turned out great - moist and delicious again! it was just slightly darker in color because of the teff flour.</div>
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so there you go, this recipe is even more versatile tban we knew!</div>
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If you make any changes be sure and comment to share your experience :)</div>
Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-72911436994106253522013-06-21T01:51:00.000-07:002013-06-21T01:58:27.323-07:00Crazy Week, part twoI ended up being in the hospital for five days, I think. I got to go home finally on Saturday afternoon. The first 24 hours in the ER and CCU went by so fast, when I was trying to remember what happened there and how long it was, it was a blur. I'm sure that has to do with the whole "hemorrhagic shock" thing. Medscape says, "<span style="background-color: white; font-family: arial, sans-serif; font-size: 13px;">Hemorrhagic shock is a condition of reduced tissue perfusion, resulting in the inadequate delivery of oxygen and nutrients that are necessary for cellular function. Whenever cellular oxygen demand outweighs supply, both the cell and the organism are in a state of shock."</span><br />
<span style="background-color: white; font-family: arial, sans-serif; font-size: 13px;"><br /></span>
I really didn't take the CCU doctor very seriously, I thought she was overreacting calling it that, but once I was up walking around, and felt the complete muscle weakness in my quads and calves, I realized that my body really had to pull strength from somewhere to get through those intense hours. It was tough just walking down the hallway one time; my legs really lost their strength over night.<br />
Once I was discharged and trying to get back to anything resembling normal life at home, that was a rude awakening! I realized, okay, my body really took a hit in those couple hours that my blood count got so low. How I got to that point, by the way, is the same thing that's been happening repeatedly in the past six months or so. An episode of bleeding that gets out of control, my body can't keep up with the blood loss, and things get ugly. (ITP / critically low platelets + Ulcerative Colitis / gut infection causing GI bleeding = no clotting happening = bad scenario)<br />
So after all that, I realized the doctors weren't overreacting, they were really concerned, and took good care of me. This was the worst, most serious event we've had happen, and I am lucky to be here ... again ... always.<br />
<br />
On Wednesday, I believe it was (my first full day out of the CCU), I had a great friend come to the hospital to visit me. A dose of friendly faces from the "outside world," bringing faith, smiles, genuine care and help to you when you're stuck in the hospital -especially when you have no clear timeline of getting out or solution to prevent this from happening again- that is such a gift! Thank you to my sweet friends and family for coming alongside Hubs and I through this, both this one event and throughout the past eight months. It's definitely been the hardest year of our life together since we've been married, and probably the hardest year for each of us individually in our lifetimes. The people who've stuck by us and trudged through this season with us - you are truly priceless!<br />
<br />
Wednesday evening, just when I was starting to get concerned that I hadn't seen my hematologist and wondering if he would be coming by, because we had some things to discuss - he popped into my room like an instant answer to prayer! We had a great chat about putting some notes in my chart for any staff to be able to access, noting that we have a plan in place for when I have to come to the hospital, and basically saying to all the doctors just meeting me and seeing my lab numbers, "Do not freak out! This is normal for her and we have a plan!" It was funny to hear my doctor admit, "When I first met you and saw your numbers, I freaked out! But now I'm used to it." I have a great care team and I appreciate when we can laugh about things together :)<br />
<br />
We also set up a plan to go by when I went home. It is basically, to go to the lab twice a week to monitor my CBC (red blood cells - hematocrit and hemoglobin, and platelets, being the most important numbers to watch), and call with any serious bleeding, and if a transfusion is needed, the nurse will triage me to either an outpatient infusion center, or an overnight direct admit to the hospital for fluids and blood if needed.<br />
It felt really good to set up a plan, just because everything has been so unpredictable and crazy the past few months, at least we now have a set idea of what to do when symptoms come up. I realized I have to do a better job of facing the reality of a bad bleeding episode too, and go in for labs and let all of my doctors know, instead of hoping it will clear up on its own.<br />
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The rest of the week was mostly a LOT of blood draws, a few more units of blood transfused, magnesium IVs, IV steroids, and starting an antibiotic for aNOTHer infection I got from being in the hospital. Yuck! Thursday night (early morning) I got 90 minutes of sleep, the rest of the night I was awake and in serious pain and going back and forth to the bathroom far too many times than anyone should ever have to! Thankfully that improved slowly over the next few days, and though I could have gone home sooner if I had not had that infection come up, it was good to stay in the hospital until everything was calm and my counts were stable.<br />
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<tr><td class="tr-caption" style="text-align: center;">I sure miss my Victory when I'm in the hospital. Highlight of the week was definitely her visit!</td></tr>
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While I was in the hospital, we also started talking more seriously about something that came up the last time I was there: surgery. Surgery to remove my colon. I'll blog about that next time.<br />
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For now I'll wrap this up. I have been to the clinic for three CBC tests since leaving the hospital, and each time my hematocrit and hemoglobin have been good, staying stable above 30! My platelets were 7,000, 8,000, and then most recently, 11,000, which is no where near normal (150,000-400,000) but it's great to see them stable and even increasing a bit.<br />
My guts are staying mostly quiet, and no serious bleeding issues, Praise the Lord!<br />
It has been a true gift to be able to be home with increasing energy and strength for more than one week. I have been able to do things I haven't done in months, maybe even all year! So many things go by the wayside when you're in survival mode, from regular cleaning chores around the house, to taking time to enjoy yourself with a hobby project or outing. And getting to be a hands-on mom again, after so many days and weeks of pain and weakness and needing help to even change diapers, has been the BEST!<br />
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So that's part two of my crazy week. Thankfully, since I've been home things have gone from crazy to calm, and are going well! Quiet and stable is much preferred to crazy and serious :)Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-62733499441869380042013-06-12T03:10:00.000-07:002013-06-12T03:10:14.135-07:00Crazy Week, part oneExactly seven days ago, I was spending the night in the Critical Care Unit. Tuesday morning my husband had to rush me to the Emergency Room, where they declared I was in hemorrhagic shock. My blood pressure was low, heart rate high, skin white, and body struggling. Hubs had to carry me to the car and into the ER wheelchair.<br />
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After arriving to the ER, they got me right in, and all available staff came to assess me, put in two IVs simultaneously, ran an EKG, and a tech stood by ready next to the code cart.<br />
Here I am wrapped in blankets - I was so cold:<br />
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I was put into the CCU because they could not find a match blood donation to give me right away, and wanted to monitor my vital signs closely in the meantime. It ended up taking five or six hours for the blood to arrive. I received a platelet infusion while waiting for the blood, but it didn't boost my platelet level. (Same as the time in December when that was tried.) This darn ITP is a nasty thing.</div>
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You know what they don't have in the CCU rooms? Toilets. Bathrooms. In case you love to use a classy contraption called the bedside commode, it's the place for you!</div>
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God bless my husband for his nurseliness. The things he puts up with for me...</div>
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After my transfusion of two units, I had a little improvement. It was slight, just sitting up successfully and better vitals, but progress. Hubs said my skin also had some color back to it.</div>
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<span style="text-align: left;">The next morning, my doctors explained the plan was to transition me to a medical surgical floor. We waited most of the day for that, and in the meantime I was able to start walking around. The hospital has a rooftop garden for patients right down the CCU hall, so we went out there to enjoy the sun.</span></div>
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What a testimony to the power of prayer! I looked so much better and felt better then. I stayed outside almost an hour sitting and drinking water and sun basking. Then we went in, ate lunch, and it was time to go upstairs.<br />
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My room was on the top floor of the hospital, possibly the best room and view in the whole place! It also happened to be on the floor where a friend of mine is a nurse! I felt like God gave us favor with those circumstances, they were not a coincidence but Him, showing us He was near even in those little things.<br />
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The view from my hospital window:<br />
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I got settled in, the hospital doctors came to see me, I got to eat dinner, and then it was night. They started me on high doses of IV methylprednisone, and checked my blood count again.</div>
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To be continued...Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-30723203533700989922013-05-24T23:15:00.000-07:002013-05-24T23:15:22.213-07:00turn Weak into StrongYeah, I kinda dropped out of the Blog Every Day in May challenge. I'm okay with it. I've been been having a tough week, a colitis flare and my platelets are being stubbornly low. I'm going to win this battle, I keep saying it and it will happen eventually.<br />
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So I just wanted to check in and let you all know I'm still here, just not all about blogging at the moment. I'm still reflecting on an incredible Oxygen womens conference last week, recovering from a full weekend, and marvelling at the daily blessings that come from being a wife and a mom to two incredible people I have the joy of calling my family.<br />
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I do want to share share one thought that's been trudging around my head all day today. It's the second part of Joel 3:10 b, "Let the weak say I am strong."<br />
This verse dropped into my path yesterday when I was doing some reading, and it is so timelyfor me. In tbe times that my blood count is dropping, it's difficult to watch and feel the effects in my body. I have learned recently that I can declare strength from God, literally speak it with my mouth, and it makes a difference. It makes my body respond, because there is life and hope being spoken. In the struggles of life, including physical, we are not powerless!<br />
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Read the Message translation: "Let the weak one throw out his [her] chest and say, "I'm tough, I'm a fighter!"<br />
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That's what I'll be doing this weekend, determined to bounce back from this setback without a hospital visit!Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-92032753861299892962013-05-17T14:26:00.000-07:002013-05-17T14:26:36.520-07:00Favorite photo of me (BEDIM: Day 17)Hey all! I'm back. I dropped off the challenge for about a week there, just had to prioritize my family and domestic duties while running on low energy. My guts and energy level aren't recovered 100% yet, but I believe I'm getting there! Pressing on!<br />
I do have to get a CMR lab panel tomorrow to check on my liver numbers, they've been fussy for a couple weeks now. Dr is thinking I just needed a Cyclosporine dose increase. Believing that's the case!<br />
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Now, onto today's prompt: my fave photo of myself.<br />
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This was several years ago. My hubs and I were away for an overnight to celebrate our anniversary, at the Salish Lodge above Snoqualmie Falls (thanks Mom and Dad). I got ready for the day and sat down at the window seat, and Hubs took this photo. The natural light was so pretty.<br />
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<br class="Apple-interchange-newline" /><span style="text-align: -webkit-auto;">I look so happy, healthy, and glowing. It's a favorite photo because of those things, and the memories it brings to mind. I don't get dolled up and feeling pretty as often as I would like and this photo reminds me it doesn't take much, mostly a smile :)</span></div>
<span id="goog_982892997"></span><span id="goog_982892998"></span><br />Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-45051728828213766002013-05-09T18:20:00.000-07:002013-05-17T14:27:56.039-07:00A moment in my day (BEDIM: Day 9)Here we are, <a href="http://storyofmylifetheblog.blogspot.com/2013/04/blog-every-day-in-may-challenge.html" target="_blank">Day 9</a>, and I'm still in the game. Go, me! It feels good to be able to keep up with a commitment. Haven't had that opportunity much lately!<br />
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Today is about sharing <i style="font-weight: bold;">a moment in my day</i>.<br />
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And I was about to post this after lunch, explaining how my day is panning out today. But then I promptly fell asleep for <i>four hours</i>. Wow.<br />
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So, now I will post. This is my pillow, blue Gatorade, and me. Today my guts are being fussy, blah blah.<br />
I'm so Thankful for Hubs capably taking care of everything so I could/can rest.<br />
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Tomorrow's going to be better!!</div>
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<span id="goog_640371553"></span>Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-45960019198428103322013-05-09T02:20:00.000-07:002013-05-09T02:23:53.315-07:00 a Piece of Advice (BEDIM: Day 8)Today is Day Eight of the Blog Every Day in May. The prompt? "A piece of advice"<br />
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My advice? Pick your battles, and lighten up. Life is full of potential stressors, challenges, grumpy people, flat tires, rainy days. Relationships - marriage, parenting, family, coworkers, neighbors - have their speed bumps, and any time two or more imperfect people are involved, life can get messy.<br />
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My advice is keep the end in mind, and allow that ultimate vision to guide your responses and decisions. We have too much to do in life to pick up every issue bothers us, and if we do try to deal with every single issue we are going to be absolutely exhausted. We must pick our battles.<br />
A great tip I was taught is to run every issue we have through the filter of "will this matter in five years?" Sometimes to help you pick your battles, you need to ask, "will this even matter in five days, or even five minutes?"<br />
Asking this will help you conserve energy for what you NEED to do to achieve your ultimate vision for your life, no distractions.<br />
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Also, lighten up! Smile, laugh, keep a healthy perspective. Celebrate your blessings and victories. Watch and listen to comedians that give life by making you laugh. Just be light of heart, it is good for you. Life is too short to have attitude, stay upset, or worry. Hang around positive people who help you stay light.<br />
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I could write so very much more. But I will leave with these pieces of advice.<br />
Now, what is your piece of advice?<br />
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Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-89970334349166329172013-05-08T23:57:00.002-07:002013-05-09T02:03:40.030-07:00Things I'm Most Afraid Of (BEDIM: Day 7)This post is a couple days late, and I was going to just let it go. But I changed my mind.<br />
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The prompt for Day 7 is "the thing(s) you are most afraid of."<br />
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Let me start by reminding you, I so am not perfect and I so don't have it all together. But after thinking about this prompt for the week, I realized that in my last fifteen or twenty years of life, I have had to face just about everything I was afraid of. And more recently I have learned how to capture a fear trying to root in my life, and throw it away. (Thank you Jesus, PK, and Joyce Meyer! ;))<br />
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<li><b>Spiders. </b>I defeated that when I had to deal with a giant tropical spider that came home in our grocery store bananas. Boom!</li>
<li><b>Death</b>. Face critical health situations enough and you'll make peace with this eventual fate too. Just not happening yet, not even close!!</li>
<li><b>People not liking me. </b>Yeah, life is too short to let people and their toxic vibes bother ya. Hurting people hurt people, and 99.9% of the time people have issues with themselves, not you.</li>
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So those were my big fears, and I know they resonate with most of you out there. We are all just human :)<br />
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Now, I do have something I would identify as the thing that tries to overwhelm me. And that is because it is <i>overwhelming</i>.<br />
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I am overwhelmed by the idea of FOREVER. Of eternity. Of no more sense of time. Of going on and on, and on and on.......................<br />
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Wow, when that bugger creeps in, does it overwhelm my mind and make me get lost in my head.<br />
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I believe in Heaven and I know that I know I will be spending forever with my Creator when my time in this life is done. I believe what the Bible says about Heaven- that it is a beautiful, perfect place God created with His people in mind. That it will be a place of JOY. Peace. Love. Worship. Freedom and fun! Reunions. Relationships. Life ABUNDANT, with no tears, sickness, or pain.<br />
And I let<b> those truths</b> flood in at those times when my mind goes down that imploding path of <i>too-big-way-too-big-to-comprehend </i>thoughts (which God never asked me to think in the first place!).<br />
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As my best friend aka Hubs encouraged me a few years ago, "we are all going to live forever, no matter how you look at it. We get to decide where we spend that forever."<br />
And that helps me. Because I think if there is a true fear I have hidden in this thing, it would be the fear of spending an unending eternity <b>alone</b>.<br />
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How I am grateful that the greatest truth about my forever is that I will never be alone. Heaven is the place we get to be in God's presence forever. Never ever alone!<br />
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I hope this encouraged someone out there. Perhaps my most revealing blog post ever. So if you have anything to say, let it be kind. :)<br />
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Anonymoushttp://www.blogger.com/profile/17480971125782901998noreply@blogger.com0tag:blogger.com,1999:blog-3395980835425766661.post-75343324213232680822013-05-06T23:21:00.000-07:002013-05-06T23:24:46.737-07:00What do I do? (BEDIM: Day 6)Day 6 of the Blog Every Day in May challenge: "If you couldn't answer with your job, how would you answer the question, "what do you do?""<br />
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I have been to enough parties, weddings, and other small-talky events since my last full time job (four years ago) that I have a lot of practice thinking about this. I for one would rather hear a list of someone's varied talents and pursuits than a description of their nine to five hours. That's not how American society works, but I secretly wonder if I am not alone on that.<br />
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Without further ado, here is a surely incomplete list of "what I do:"<br />
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<li>I breathe</li>
<li>I think</li>
<li>I dream</li>
<li>I endure</li>
<li>I hope</li>
<li>I believe</li>
<li>I choose joy</li>
<li>I love</li>
<li>I believe the best</li>
<li>I help</li>
<li>I nurture</li>
<li>I grow</li>
<li>I read</li>
<li>I learn</li>
<li>I problem solve</li>
<li>I get creative</li>
<li>I hunt for treasures</li>
<li>I ask</li>
<li>I listen</li>
<li>I give the benefit of the doubt</li>
<li>I welcome and include</li>
<li>I empathize</li>
<li>I feel</li>
<li>I hear</li>
<li>I pray</li>
<li>I make the best of things</li>
<li>I fight on</li>
<li>I feed my faith and starve my fears</li>
<li>I speak truth</li>
<li>I cherish my blessings</li>
<li>I wonder</li>
<li>I worship</li>
<li>I press in and press onon</li>
<li>I seek adventure</li>
<li>I take risks</li>
<li>I analyze</li>
<li>I look past the negatives</li>
<li>I see how things could be better</li>
<li>I encourage</li>
<li>I speak up when needed</li>
<li>I sit back and observe often</li>
<li>I honor my heroes</li>
<li>I strive for the best</li>
<li>I hold myself to (too?) high standards</li>
<li>I perfect</li>
<li>I get intense</li>
<li>I lighten up</li>
<li>I smile</li>
<li>I laugh</li>
<li>I LIVE, determined to not die, until a fulfilled old age</li>
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