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

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!