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.]