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

Where to Begin? A Summary of Recent Events

I 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.

My last post 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.

Here I am, ready to go... little did we know it would be about six more hours wait ;)

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! :)

I was in a groggy state for a day and a half afterward, but it was so good to be home!

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!

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...

I'm glad we got this news the week of Easter. It made everything easier. I cherish the Hope of and in the Resurrection.
Always - Only - Jesus.

I've been referred to the University for another liver transplant.

(:sigh:)


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.
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.

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).
There should be so many more, especially on the left...

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.

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. (Source)
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."

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!

I had a glorious nap last week, later than usual, and woke up to a gorgeous sunset...

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 :)

The Secret Garden

Momma and Miss V made it to Costco all by ourselves the other day! What a fun time and a big accomplishment :)

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!

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.

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 :)
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.)
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!

Speaking of energy levels and miracles...
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.
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.
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.
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.
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!

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." :)
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.

And don't take life or yourself too seriously! ;)

Right?? :)
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!

Here is a group of statements I wrote out to myself last week when things were feeling overwhelming, lonely and anxious. A declaration:

"I choose to live.
I choose to keep moving.
I choose to take one day at a time.
I choose to not quit.
I choose to trust Jesus.
I choose to believe the enduring, unfailing promises of God.
I choose to look high and low, far and wide, to find any joy I can find in the most difficult of days.
I choose to hope.
I choose to stay in the fight.
I choose to be fully present in the moments for myself, my daughter, and my husband.
I choose to thank God in every moment.
I choose life.
I choose joy."


And here is a beautiful prayer I discovered; I've heard and read parts of it before, but wanted to see it in its entirety. I want to print it out and carry it in my purse with me to remind me of these truths.

St Patrick's Breastplate

Christ be with me, Christ within me
Christ behind me, Christ before me
Christ beside me, Christ to win me
Christ to comfort me and restore me.
Christ beneath me, Christ above me
Christ in quiet, Christ in danger
Christ in hearts of all that love me
Christ in mouth of friend or stranger.

(390-461 A.D.)

Good News, Not as Good News, and a Plan

I 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!
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 :)

Leaving my appointment- WITH supplies, woo! -wearing my new "SheIsStrong" tee

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!)

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 :)

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!

Last weekend I got to sit down for some ME time and made this "CHOOSE JOY" tee :)
I'm loving my growing collection of meaningful shirts!

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.
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 :)

Ok sorry about that slight rabbit trail - back on track now. That will be my next step - 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 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!}
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.

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!

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!

I find that if anyone is going to stare at my golden glow, it's not kids--- 

---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...'?"

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 :)
God is faithful

Easter Season Anthems...

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 ;)

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I am getting so excited for Easter!

I can just feel the anticipation in my spirit. It really is the Superbowl of church weekends. It's a celebration!
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.
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... Resurrection Sunday is coming!
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.
But Easter? That's a whole 'nother level :)

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.

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.

Elevation Worship came out with a new album a few months back, "Only King Forever."
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.
Check out the album on iTunes or Amazon mp3, or their website is a great resource, elevationworship.com.

The first song is,
Raised to Life

Here's a link to the YouTube video of "Raised To Life" (Acoustic Female Version): http://youtu.be/VhIGt0mq2JI

Precious compassion that pours
from the wounds that won our salvation
Sin was strong but the Savior is stronger
Come let us worship Him

Great was the debt that we owe
And how high was the price of our healing
Paid in full by the One who is worthy
Come let us worship Him

Raised to life with Christ the Savior
In His name a new creation
Now our song will rise
Adoring Christ the Lord

Death overcome by the Word
that was spoken before it was finished
Jesus Saves is our song everlasting
Come let us worship Him

Raised to life with Christ the Savior
In His name a new creation
Now our song will rise
Adoring Christ the Lord

Sin was strong but,
Jesus is stronger
Shame was great but,
Jesus You're greater!
Sin was strong but,
Jesus is stronger
Shame was great but,
Jesus You're greater!
(repeat 4x as song builds)
[sidenote: I LOVE this part}


The second song is:
Last Word

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!

Here is the live recording from Elevation Worship on YouTube:

The storm rises from the deep
And rages around me
But I will remember
When doubt wars within my heart
The battle almost lost
I will remember

You have the last word
It is finished
You have the last word
It is finished
My fear is silenced in Your love
My hope is endless!

Your voice that calmed the violent sea
Speaks courage over me
So I will remember
The words that wake the sun to rise
are breaking through my night
And I will remember

You have the last word
It is finished!
You have the last word
It is finished!
My fear is silenced in Your love
my hope is endless!

Your Word stands through the ages
Your voice shatters the darkness
In You, we are more than conquerors!
You speak, strongholds surrender
Your name overcomes the enemy
In You we are more than conquerors!
(repeat)

You have the last word
It is finished!
You have the last word,
It is finished!
My fear is silenced in Your love
My hope is endless!


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!

What have you been listening to lately? What songs are your anthems of faith and victory?

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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...

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.

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!
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.

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.

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!!

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.

I have my next appointment with hepatology on Wednesday. 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 almost as high as ever. (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.

Have a wonderful week, friends. Happy Spring! Great things await- sunshine, gardening season, Easter, SUMMER! Woohoo!  :)

Little 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.

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.

Things haven't gone quite how I expected. In several ways. 

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...

About to go into the procedure room.
I think this was right before the nurse gave me a dose of IV Benadryl.
Yikes that stuff is trippy! :

 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 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.

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.

Sunday morning, first morning at home after my procedure Friday. I felt great that morning!

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!

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. 

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.

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.

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.

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.

Me and Ry doing an eye/skin color comparison.
On the left: Jaundice / Right: No jaundice!

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.
 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 :)

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.

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.

[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! ;) ]

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).

I had a liver ultrasound on Thursday, to check on veins and do the biannual check for liver lesions or suspicious bile duct changes...
(Yeah I'm 29, and they were looking for pre-cancer or cancer. That's one part of my life.)
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.
They alternate between ultrasound and MRI checks, because I opt for NO radiotion, NO CT scans.

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.

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.

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!!!

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!

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.

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! ;)

Finally made it back to church last week, and this week I was even stronger!
These two lovies in the photo with me are my posse.
They make it all possible - their flexibility and kindness and selflessness and faith.
Yep, that all applies to Ry AND our two year old. She is amazing.
Love you two so much!