Liver Transplant List? Check.

Oh my gosh, y’all. Where do I start?

I know I’ve left you all hanging on Reid’s liver “situation”. But we were waiting for news. Which I think will be the name of the game. But I’m so happy to share that yesterday we found out he was approved for the liver transplant list!! Great news! First step, done. Now we wait on our insurance company to verify one more thing (a formality), and then Reid will go back in for more bloodwork to determine where he’ll be placed on the list. Then we wait some more.

The last couple of weeks have been full of information. Two weeks ago, we went in for all of the testing and meetings that are required in order to be on the transplant list. During the 2 day process, we met with a financial counselor, a cardiologist, a dietician, the transplant surgeon, the nurse practitioner, the transplant coordinator, and a social worker. All of those were on the transplant “team”. Reid had 20 vials of blood drawn, a bone density scan, an EKG, a panorex scan, a chest x-ray, an echocardiogram, a carotid Doppler, an MRI, and a pulmonary function study. I’m tired just listing all of that. But it was an informative process. And it overwhelmed me and calmed my nerves all at the same time. It overwhelmed me to learn about just how intense this process will be. But at the same time, we are DOING something, we are moving forward in the process. We aren’t sitting still.

So, the process of getting a liver. I’ll summarize it for you.

Once Reid is officially listed, we’ll learn his MELD (Model for End-stage Liver Disease) score and where he is on the list. When we met with the transplant team a couple of weeks ago, his score was 11. Which is quite low. When he was in the hospital in April, his score was a 16. The fact that the infection is no longer in his system lowered his score. Which is good. But bad, because that means a longer wait for a liver. And a higher chance of developing cancer in the bile ducts while we wait. So the goal is to get a liver sooner rather than later. While his liver is not in terrible condition, his bile ducts are. And that’s where we will have a little challenge. He can’t get a partial liver, because no one can donate the bile ducts of their liver. Those you kinda need to survive. In our region (Texas and Oklahoma), the people that are getting livers have MELD scores in the mid-30s. Which means they are basically in the hospital until they have a liver transplant.

We learned that there is such thing as being listed as “low MELD in need”.  This would mean that Reid could get a sub-prime liver. Basically it would be a “B” liver, instead of an “A”… which could work. The reasons for it being classified a “sub-prime” liver can vary, but it doesn’t mean it’s a bad liver. It just means that they don’t think that liver will do well in a very sick and dying patient. Reid is 31, otherwise healthy, and has a great chance of recovery after a liver transplant. So he should be just fine with a sub-prime liver. When the transplant coordinator called yesterday, she said that he is not going to be listed as “low MELD in need” yet, but that they are fighting for that for him. How nice is it to hear that a medical professional is fighting on your behalf? Without you even asking them to? I think we’ve got a great team of professionals on our side. They have hundreds of patients, but their level of engagement with each patient is unreal. They will be in regular communication with us once Reid is listed.

Once listed, hopefully as a “low MELD in need” case, then we wait for him to progress up the list. The list is nationwide, but you have to be within 3 ½ hour of the liver for the transplant to work. However, we are looking at going to Indiana. Reid is from Indianapolis, so we have a support system there. Indiana has a lower average MELD score where patients are receiving livers. Nearly 10 points lower. The transplant team here in Houston recommended we definitely get “double listed”. So what does that require? Next week we’ll call and schedule an appointment with the transplant specialist in Indy, and travel up there to get listed and meet with their transplant team. Reid can be added to the list there, but will be considered “inactive” until he is staying in Indianapolis. So we’ll watch his MELD score, watch where he is on both lists, and make a decision from there. Right now I can’t tell you when we think he’ll get a liver, or where we think we’ll be when that happens. But we will have options. And options are good. Obviously it would be ideal to be in Houston for a transplant – our support system here is so much larger, we wouldn’t have to take so much time off work, and we wouldn’t have to uproot our lives for a little while – but we’ll take what we can get and do what we need to make sure he gets a liver! We did learn that our insurance company would reimburse up to $10,000 in travel expenses should we end up in Indy. Which is amazing. What a huge relief that was to learn.

So, once added to the list, and he’s up high enough to get a liver, we’ll get a call. We’ll rush to the hospital once we do get that call, but he may or may not get a liver. The liver might not be a perfect match. They have prepared us that this may happen several times. They would call him in, he would get prepped for surgery, and they may find something wrong with the liver, or determine it’s not a perfect match for him. They will typically call in a couple of people. So the flip side of that is that Reid may learn that he isn’t getting the liver, then they start the transplant surgery on someone else and something goes wrong. And he could get a call back in to do the transplant. Basically, that part of the process will be stressful as hell. And we should expect a couple of let-downs.

Once he does get a liver, he will be hospitalized for 5-7 days after the transplant. Once out of the hospital, he’ll have to have 30 days of around the clock care from myself and/or his parents. He won’t be able to drive for 60 days. And they’ll continue to monitor him closely for the next year. He will have anti-rejection meds that he will be on for the rest of his life. Those come with their own fun side effects, of course. He will have to take those religiously every 12 hours. And we hope and pray that his body doesn’t reject the liver. If he did reject it, he would be first on the list for a new liver.

I’m so glad to know the process now. Once we know what we’re in for, it’s a lot easier to tackle the challenges ahead. A lot of people have been asking how Reid is feeling. He is okay. He’s tired, all the time. He gets worn out VERY easily. He is still having a hard time putting on weight (since we’ve been together, his highest weight was 255. He’s down to 195 right now). But he’s hopeful, and ready to be back in good health. And really, truly appreciates all those that check on him and are supporting and praying for him.

While we were meeting with the transplant team, we were sitting in a waiting area and I noticed this bench next to us. I started looking at it, and realized it is in honor of those that have died and donated their organs so that others can live. I had to keep myself from bursting into tears. It made such an impact on me. I have been so focused on making sure my husband survives this that I hadn’t stopped to think about that person that will save his life by losing theirs. It broke my heart, but made me so happy at the same time. I hope that one day (a long, long time from now) I can have that impact on someone else’s life. If you’re not an organ donor (if you’re in Texas, you should see a little heart on your driver’s license), please consider it. There are so many people in need, why not help give them life after you are gone?

Thank you again to everyone who has called, texted, emailed, sent Facebook messages, cards, etc. You guys keep us going, and make us feel so very fortunate to have such great people in our lives.