Transplant Evaluation Day One

Today was Day One of Transplant Evaluation. I am exhausted. I’ll get around to telling you about that in just a minute. I’ve had a lot of people ask me if I’m already on the transplant list. So I want to clarify some things. Right now I’m not. Going through the transplant evaluation is the first official step for getting put on the List.

First, I am being seen by a Hepatologist who is a transplant doctor. I was referred to the program by my old gastrointestinal doctor back in November of 2017. I am seen in the medical clinic at his medical offices. With cirrhosis and all the changes that can occur quickly, it’s better to be seen by someone who specializes in the liver. Even though I qualified as a patient to be seen, I wasn’t qualified to be on the transplant list. 

In order to be on the list I have to “score” from 15 points on. This is called a MELD and you will see me talk a lot about it in the future. My score has been 8 for a while so I have been too well for the liver transplant list. That’s not a bad thing, by the way. Because my doctor found cancer in my liver, also known as HCC, that changes everything. After evaluation and 6 months on the waiting list, my natural MELD will go up to 28. The highest the MELD scores go is 40, and that’s not a good thing. 

So now on to explain Transplant Evaluation and what I learned today. My Transplant will be done at Memorial Hermann Hospital Med Center. Today I got to meet one of the most important people on my transplant team. My transplant coordinator, Chiko. She is my go to person for all my medical needs until I’m transplanted. I love putting a name to a face...but I’m getting ahead of myself. 

Our day, because Doug my husband has to be with me, started at 4am. That’s when his alarm went off. I crawled out of bed at 5:30. We were out of the house and on the road at 6:15, and due to heavy traffic, checked in at the Transplant Center at 7am. We then got to wait until 8:30 to be called back. Evidently it was kidney transplant clinic today and I got in behind a very large and busy clinic. It hadn’t even occurred to me that there would be other types of transplants at the center. 

Finally I was called. I had jokingly told a friend that they were probably going to take 16 vials of blood. I was off by one...it was 15! Some of the test were liver function, drug screening, alcohol screening, CBC, electrolytes...and I’m sure I’ve missed some. The technician was good. She hit my vein the first time and was able to get the full draw on that one poke. I already have the results and I have some questions for my team tomorrow. My white blood cells are indicating an infection. I don’t know if that’s the cancer showing up or if something else is going on. 

From her little office I went to the classroom. We were given our packets. In them was the PowerPoint presentation we were going to be taught from, forms to fill out, meal tickets, parking vouchers, and lots of information about the transplant process. This is where I got to meet the two coordinators who will be interacting with Doug and I over the next months. 

We signed off on whether or not we would accept a high risk organ (the answer is yes). We signed off on consent for evaluations. We signed off on patient responsibilities. There were other forms we signed off on as well. Some of the questions asked were pertaining to high risk donor organs. We had to give our approximate time to the hospital from our home (mine is 30-40 minutes depending on traffic). I also had to give them information from my dentist of work that needs to be completed before I can be listed. 

I walked away from this meeting with some wonderful assurances. I do have the best team of doctors and other professionals who will see me through this to the end. I know without a doubt God’s hand is in this. I know that friend’s prayers have really done a wonderful job of calming my heart. 

Tomorrow is another extreme day. It’s imaging day and I have to get a catheter. Last time I got one I had a panic attack. Please pray that doesn’t happen this time. I’ll tell you how everything goes tomorrow. 

Terri