Reflections on 13 Years of Extended Life

Thirteen years of ups and downs, and God is faithful through it all. My life is abundantly blessed!

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 get to live, because of her family's decision to make Ashley an organ donor even while they were right in the midst of experiencing loss.

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:  In Loving Memory of Ashley Bergman

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 :)

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.

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.

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."

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!

June 2001 - home at last!

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 :)

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.

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."

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 all about Jesus, and that Jesus can and will and wants to be involved in every moment of our lives, not just in a churchy building or event.

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 Luke 8:50 - "don't be afraid, just believe." (NIV)

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." 

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.

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!

Because of my donor and my transplant, I have been able to do so many special things. The first is obvious:

1) survive. Then there's a lot more...

2) graduate high school

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!

6) advocate and speak about organ donation

7) travel with youth choir on two mission trips

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,

9) met my husband on said ministry team :)

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

10) get married!

1/27/07

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,

March 2007, our second "monthaversary." What IS it with us and spending special occasions in the hospital?!

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! ;)

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,

14) experience pregnancy, once very briefly, and another time to full term :)

A week before we became the Three Musketeers! August 2011

15) Give birth to an absolute miracle baby girl, Victory,

16) and... I realize there are just too many great things to list. 

But, Not 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).

But there are plenty more simple things to list, because I choose to find joy in every day. In every experience...

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 verses 16 through 18: Rejoice always. Pray continually. And here's the kicker a lot of us don't like: Give thanks in all circumstances. The important clarficiation is, he doesn't write, "Give thanks FOR all circumstances." He writes, "Give thanks IN all circumstances." 

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. Thank You, God, for this beauty in spite of the ashes."

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." 

Blood Transfusion #329

Ok, ok, I have not had 329 blood transfusions. Sometimes it feels like it though :)
I've got one more to add to the tally total!

I mentioned in my last post 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!
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 7 pm and learned that they'd been waiting for me! Oops! So we threw together our bags, dropped off sweet Vicky for her very first friend sleepover!, and headed to the hospital. 

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!

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, ha-ha! 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!

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. :)

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 :)

Thumbs up, all is well! Especially since I had my bacon blanket, cozy sweats, and new coloring book and markers from home ;)

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!"
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 connoisseur 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! Ry, if I haven't said it this week, you are my hero! Xoxo

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 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 technically been at 29 or 30. But 27 means I had dropped down to around 21 when I was admitted. 
I have got to get my STEAK on 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!
...Don't you give your organs pep talks? I do, and find it quite helps :)

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.

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!

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.

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.

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...

Light rises in the darkness for the upright;

    the Lord is gracious, merciful, and righteous.

Psalm 112:4 RSV

Staring Down the Monster. And, Another Big Needle in the Gut

I 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.

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.

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.
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.

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.
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.

*This is the perfect opportunity to make mention of tomorrow's special distinction: 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! Follow this link and click on your home state to do so: http://organdonor.gov/becomingdonor/stateregistries.html
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/
When in doubt, just ask. As an organ donor you can save or enhance up to fifty lives. That's amazing!
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 :)

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...
This is where it becomes so important to ground yourself daily -moment by moment- in Truth. 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."
"But, God shall supply ALL of my needs."
"BUT GOD will satisfy me with long life and salvation."
"BUT my GOD will fight for me; I need only to be still."
"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."


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.

Checking out of the hospital the day after my last ERCP, Jan 27th

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!

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 :)

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.

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!

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!

Tomorrow is the day we are going in for "Plan B" - a PTBD - 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."
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.
However--- 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!"
You get the idea. :)

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 true, noble, reputable, authentic, compelling, gracious- the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse."

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.
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!



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!



I hope I've informed, encouraged, spoken truth or life into your airspace today.
I'll close with this:

"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. Now choose life, so that you and your children may live, and that you may love the Lord your God, listen to His voice, and hold fast to Him.
For the Lord is your life, and He will give you many years in the land."
-Deuteronomy 30:19-20

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!

Loving Hillsong Young & Free!

Have you checked out the new Hillsong Young & Free album, We Are Young and Free?
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!

I've had track six, "Love Goes On," on repeat today. Retreating into the lyrics...

VERSE
We found love that never runs dry
From the depths
To the sky
Eyes fixed on the One who knows no end

You stand strong for all of time
In the joy
In the trial
You are the Beginning and the End

PRE-CHORUS
Your love goes on
Your love goes on

CHORUS
Ever our heart will seek
Jesus in everything
From sky to ocean deep
Your love goes on

Through every rise and fall
We are forever Yours
One thing we know is sure
Your love goes on and on and on

VERSE
From dawn break into the night
You're here with us
You're on our side
Your arms are forever open wide

You stand strong for all of time
In the joy
In the trial
You are the Beginning and the End

BRIDGE
Love unfailing
Never shaken
Hope awakens in You

An Episode of Cholangitis, and, We're House-less!

Wow, things have been crazy, but today really took an interesting turn!

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.
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.
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.
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!!
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.
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.
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 my Instagram pic my hubby posted....

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 :)
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!!!

In the meantime...

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.
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.
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!

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.

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!

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.  :)

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.

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. The report? 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.

Wow.

Wow.

Yeah.

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 finally, live there being healthy and safe and comfortable.

I know that it will work out. God will 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 always always always has our best in mind, and when you trust Him, you get to experience the most amazing God-events and acts of humanity and miracles and coming-through-in-the-clutch moments... God is amazing, you guys!
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.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. :)

Oh! and the link to the fund is: www.gofundme.com/OperationAgnew

Little house, see you in a while!

Seeing and Celebrating

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.
I love the Scripture, "I will restore or replace for you the years that the locust has eaten." (Joel 2:25)
A close second, "what the enemy intended for harm, God has meant for my good." (Genesis 50:20)

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. Rare 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 it's such a gift to have work to do, and strength to do it.
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!" :)
Grace for the self: so important.

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!
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 :)
I should be hearing the plan by tomorrow though, and it will be good to know what it is.

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.

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.
My 23 month old 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.
She is brilliant, watching something once and imitating it immediately, or days later, with attention to detail, and determination.
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...

I just marvel at how so many blessings can be wrapped up in one tiny person.

However: do not be mistaken. My girl is of course about to turn two, and showing all those parent-character-testing qualities as well.
[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 :) ]

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.

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.

I may never be able to get pregnant again. Or possibly, I shouldn't 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.
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 stop asking some time ago, but I'm sure some of you wonder if we do, "What if a baby survived but not me?"

I'm not trying to be a downer. I am normally pretty positive here [she chooses joy 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 work on my thought life 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 thrive! 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.

Victory is a double 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.

Zechariah 9:12 in The Message says, "This very day I'm declaring a double bonus- everything you lost returned twice-over!"

My heart rests because, while I dream of having a bigger family one day and I believe God can and will heal me, and may make that dream happen, my heart is full being a mother to my one wonderful Victory.

What if God has already fulfilled a promise to you, and you just haven't noticed it yet? You looked, but didnt see?

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, I would be robbing myself and my family of being fully aware and grateful for all I have in the present.
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 had to fight to trust!

And here we are.
Celebrating TWO, celebrating my platelets recovering, celebrating our faithful God!
Instead of looking at what I miss, I choose to see the restoration, the full replacement and overflowing beyond, of what was lost.
And celebrate, celebrate, celebrate,
rejoice, and thank God!  :)

What's Happening

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 really 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 church! 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 :)

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 finally (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.

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 :)

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!

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. 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! 
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 ;)

So, moving on from house to health - here's what's been happening:

Going with the most recent events, I am on Prednisone right now in case of liver rejection.
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!
Interestingly enough, the reason they can do a liver biopsy without the risks of bleeding is that...

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 :)

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 improved liver tissue in an area that radiology report eighteen months ago said was looking not so good.
Awesome, right?! :)

Finally, the other health event I had was my annual colonoscopy. Woo, party time! (Haha!) 

colonoscopy prep solution

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.
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.

Snuggles with my girl while waiting for my doctor

My smarty girl, checking me out after she saw my doctor do the same thing :)

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!

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! :)
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!

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!
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.

We may live in the 'hood, but our summer sunset views are million dollar :)

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 :)

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!

"So if you’re serious about living this new resurrection life with Christ, act like it. Pursue the things over which Christ presides. Don’t shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up, and be alert to what is going on around Christ—that’s where the action is. See things from his perspective."
-Colossians 3, MSG