Tuesday, May 6

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."