Two months ago, I was in the hospital; yesterday, I went through the rest of the suite of evaluations and appointments that I needed to be placed on the liver transplant list.

At some point during the day, we found ourselves next to a man in the waiting room. He said he had a transplant on December 23- “A Christmas miracle!”, he said. He looked perfectly healthy and normal. He was pretty sick beforehand- it took him 18 months to get finally get to a transplant- but he still was able to get out of the hospital in record time. Every one is different- but it was good to hear his testimony knowing I am under the care of the same liver doctor and seeing my transplant coordinator embrace him and exclaim, “Look at you! You have color in your face!”

After my 7:30 am 18-vial blood draw, mom and Kevin and I met with liver doctor/medical director, Dr. Berg. He bounded in with jovial energy (akin to Dr. Tague at Wake Forest for the small number of you who know him). He was very clear, put us at ease, and provided the kind of environment that it felt welcome to ask questions. It turns out he was the immediate past president of UNOS [United Network for Organ Sharing] that maintains the national transplant list for all donors and recipients. He spent the last year thinking about equitable distribution of organs and such things- very cool. Using the word ‘list’ is a little deceiving, though. Even though this database maintains national information, organs remain local for most scenarios. [This region is region 11- 5 states including Kentucky, Tennessee, Virginia, and North Carolina, South Carolina. Organs remain in the state unless there is someone in a dire situation such as a newly-transported donor organ not picking up function. In the case of North Carolina, organs in the southwest part of the state go to Carolinas Medical Center, and organs from the other 2/3 of the state go to Duke and UNC- the three liver transplant centers.]  When a liver is available, a pool of local candidates is narrowed to those who match the blood type and size requirements, and from there, a list is generated.

The medical team at Duke meets on Tuesdays to familiarize the entire 30-member transplant team with those who have had a full evaluation done, and to decide the best course of action to move forward (place person on the list, seek more evaluation/clarification about a particular issue, or that transplantation is not the best move for the patient). Since my meeting with the surgeon was scheduled for next Wednesday, I was slated to be discussed the following Tuesday. Dr. Berg had an epiphany that I could perhaps be squeezed in to meet the surgeon while I was already there (even though she didn’t have an open appointment). It worked out beautifully- now I don’t have to return next Wednesday- I get to go to my Wednesday breakfast and have my case discussed one week earlier! After approval by the team, my insurance has to give approval one more time, and then I can be listed.

Generally, people’s bloodwork is evaluated and a MELD score calculated as an indicator of their liver function and health and placement on the transplant list. A MELD in the 20s is transplantable, at 30 a person is eligible for organs of their blood type or type O (universal donor), and 40 is the highest score. For certain liver conditions and for liver cancer, labs do not accurately reflect the liver’s situation, so an exception is granted, and there is a protocol for assigning a score for these conditions. EHE is super rare, while this is an approved condition for transplantation, there is no standard protocol. Dr. Berg will write a letter to the region 11 board to request that I get a MELD score of 28. Out of the 11 reviewers, 6 have to approve the number for me to have this exception (will take a few days, probably- up to 10). If they don’t like this number, he will have to try again with a lower score. Some of the best news of the day: with a MELD score of 28, I would likely receive a transplant within 1-4 months!

This news was while we still believed that my blood type was O (most common blood type: over 30% of the US population). Matching a liver is simpler than any other organ for transplant: only things that have to align are blood type and body size [But if needed, they could split an organ from a very large man in two, for example, and give half to a pediatric patient and half to me!]

We were having a mini-celebration for the timeframe when Dr. Berg stuck his head in the door and said, “Your blood type may not be what you think it is!” Apparently, I have type B blood. This is even better news, because type B blood is much more rare- meaning there is a smaller pool of donors, but there is a much smaller group of people waiting for a type-B liver. So, if a B liver is available in our region, but they don’t have a candidate waiting locally, it is made available to other people in the region.  [Type O livers can be accepted by anyone, increasing their demand, as well as more people are waiting for them.]

I’m super stoked. Everything I’d seen pointed to perhaps waiting up to a year for a liver. I’ve been hoping in my heart of hearts that I could have the transplant this summer, so I could move along with my healing, schooling, and life. I am not making light of this process- it is dangerous, major surgery with many possible complications (many of them occurring in 10% or fewer of patients).  However, I know I am younger, stronger, and healthier than many of the patients that are receiving liver transplants. This increases the risk of things like clotting and initial rejection while they work on prescription levels. But, y’all (no, I wouldn’t say “y’all” in real life, but I will in informal writing), Y’all! I am in good hands all around who know what they are doing. I have a great team, actually have type B blood to speed up the process a little, I never had the desire or taste for smoking or alcohol anyway- nor for food that would now be off limits to me if I ever ate them: sushi, grapefruit, rare red meat, etc. I have will have increased risk for skin cancer on immunosuppressants- but their recommendations were to wear long sleeves (I’m cold most of the time, anyway) and to wear SPF 50 sunscreen or more (which I do anyway or I burn).

In the meantime, I will be working with Duke Divinity to work out plans for next year and the District to plan for Glendale Heights in the coming months.

For having cancer, a rare cancer, and needing an organ transplant- I feel as though I have come out on the best possible side and best possible options for it all. I have a wonderful group of people standing with me, thinking of me, and praying for me- plus God, the Great Physician, the Wounded Healer, the Lamb who is the Good Shepherd leading the way through the shadowy valley to resurrected, abundant life. Rejoice with me! The road ahead will be hard, but I’ve been equipped with the right hiking shoes, provisions, and guides.

 

[Oh, one funny moment: I accidentally said “Tweeter” instead of Twitter, and mom and I set each other laughing for several minutes with scrunched faces. I wondered what the team would think was happening if they walked in and saw us.]

I have an appointment for full evaluation with the Duke Liver Transplant Clinic on May 11!

I’m stoked. I’ve been wanting to write this for almost a month now, but life has trucked on with me barely holding on to the bumper.

They originally scheduled me for an appointment on June 7- which felt like eons away. I spoke to my oncologist- who was actually pleased that it was scheduled so soon. However, he who spoke to the transplant folks anyway, and we were able to get worked in on May 11. The day is full- scheduled from 7:30 until after 1 with labs, tests, and appointments with doctors and other medical staff, nutritionist, financial coordinator, and social worker. I’ll come back the next week for a meeting with the surgeon, transplant coordinator, and any further follow-up that they need. If all goes well, they will place me on the national list for liver transplant.

The most unexpected thing they needed from me was clearance from a dentist. I generally think of my teeth as a completely separate concern from all my other health. I got in to see the dentist, and I get to go back on May 16 to get 7 fillings- tiny places we have been watching for years and would under other circumstances continue to watch. I get the whole morning at the dentist to myself !

My friend’s son has a birthday on May 11. They made him a paper chain to count down the days until his birthday- and so they made me one too! Duke Chapel is having an opening celebration on May 11 after being closed all year for renovation, and I’ve seen a few other things happening on May 11. I feel like everyone is celebrating with me.

In the space of seminary and serving as pastor, I have this weighty and light, terrifying and awe-full call to think of things eternal and regularly live in the tension between life and death and resurrection. It is a privilege and a weighty responsibility to walk with people and their families through the time of death. It takes a whole lot of energy, but in these spaces, God’s presence is palpable.

Two weeks ago, one of the saints of my congregation who struggled mightily in the last year with health problems- beginning with fractures in her pelvis- found out on her birthday that she had 2-6 months to live due to a liver disease she had been living with for 20 years. I had the privilege to share the news on her behalf in our worship that Sunday morning, and the church was visibly connected as the Body of Christ as we laid hands on her and prayed for her journey. This is one of the greatest gifts of the church- to bear one another up, to intercede for one another, to testify against all that would tear us from one another and God. That Thursday after a graveside service for another member of the community, I received the message from her youngest son that she was ready to join the church triumphant. While we visited with her that last afternoon, we were able to sing Amazing Grace with her at her request. The last verse we repeated ‘Praise God’ over and over to the tune. When we finished and I looked over to her to see if there was something else she wanted us to sing, she began repeating “Praise God! Praise God! Praise God!” with every ounce of the breath she had. It was heart-breakingly beautiful. What an honor to ‘Accompany Them with Singing’ into the church triumphant.

I encountered a book at a 1/2-day Stephen Ministry training recently (which I haven’t bought/read yet, but was highly recommended to me) called Don’t Sing Songs to a Heavy Heart: how to relate to those who are suffering. The title has resonated with me- it comes from Proverbs 25:20: “Like one who takes away a garment on a cold day, or like vinegar poured on soda, is one who sings songs to a heavy heart.”

I love music, and singing is a primary form of prayer for me. I need it, I am buoyed up by it. My heart is not heavy, but it is tender. I think for me the phrase becomes transmuted to- listen for and join in the song of the sufferer. I’ve been really aware of my reactions to support that people have offered to me, turning them over and over curiously like a faceted jewel as I ponder why they have produced this particular reaction in me. Sometimes (but not all by any means!) that people have offered a song, or unsolicited health advice, or someone else’s log of their journey with cancer, something in my soul reacts like suddenly pushing a chair back from a table and standing up. I think it has something to do with singing the songs of my heart. This blog is a form of song- allowing me to pour out my heart and experience and share with whomever cares to sing with me- but the song is mine to sing and to form. It changes with time.

As I drove to Greensboro to tell my beloved the results of my biopsy, the song of my heart- even despite tears and a cracking voice was My Heart is Steadfast (Psalm 103) By Ellie Holcomb.

My heart is steadfast, O God
I’ll sing praises up to Thee the among the nations
I’ll give thanks to Thee O Lord among the peoples
I’ll sing praises up to Thee in my soul

For Thy lovingkindness is great above the heavens
Thy truth it reaches to the skies
Be exalted O God above the heavens
And Thy glory over all the earth
That those who love may be delivered
Save with Thy right hand and answer me

[I couldn’t find a YouTube video- you can listen on Spotify, Amazon Prime, or just purchase it…]

This is the song of my heart. Sounded an awful lot like Amelia’s “Praise God”, so despite my broken heart and cracking voice, I could accompany her with the song of the service of death and resurrection. I hope you don’t just sing songs to a heavy heart- I hope you do the hard and holy work of listening with your stethoscope to the song already there- so that you might sing the same tune, or provide harmony support that might take the song to a different plane.

I am thankful for all the ways that my community has bolstered my song. Hugs, flowers, smiles, cute videos, a personal postcard from Hong Kong on the day I went from graveside to deathbed-side, blissful hour of massage, chimes, emails, shared meals. I got a signed CD in the mail from the massively talented singer-songwriter Kristin Andreassen out of the blue- which utterly melted my heart. My District Superintendent Carol preached for me last weekend- a wonderful work of God’s grace in the midst of extra services. I’ve gotten to see my parents while they were in town for Duke Study leave and then the NC Preaching Festival, quite a wonderful gift. I am very aware and grateful for the large support group that I have. I have churches across the nation praying for me! I know well that I have a wider and more active support network than many people facing liver or other major organ transplants. My logistical exercise is not desperately trying to find one or two people to be my caretakers after surgery- my exercise is how to efficiently deploy my network to meet my post-surgery needs. Heart-breakingly beautiful- praise God for my situation, but my heart breaks for those with small or no care network.

Physically, since my stay in the hospital, I’ve mainly struggled with pain in my side, fatigue/headache, and nausea. The pain I’ve been able to control with therapeutic levels of Advil, thankfully, and the nausea medicine I have is spectacular. I still have no appetite, but I am able to eat more normal-sized portions at mealtimes than I was able to a few weeks ago, and I have not had to take my anti-nausea medicine very much at all. I still try to do too much and tire easily. I have to adjust to my new capabilities.

School-wise, with much wailing and gnashing of teeth, I finished my portrait of suffering and artist statement for my Beauty, Suffering, and the Cross course. I am working on finishing my two papers for my Readings in Lesslie Newbigin’s theology course- and am striving and struggling toward having both of these finished by my May 11 appointment. Most of the work has to be accomplished this week for that to happen- Please, Jesus! Then, I can turn toward my directed study paper which I have the summer to complete.

I’m awaiting May 11 with anticipation- with lots to keep me busy and work on until then. Then, assuming I am a good candidate for a liver, it will be hurry up and wait for an undetermined length of time until one phone call drastically changes the character of the next three months. That may be the hardest task of all.