The Continued Fight for a Liver

Hi, friends. Okay, my head has stopped spinning (a little) since our trips to Cleveland and Alabama. And we have a plan (ha – that’s funny). I should say we have some ideas of potential plans (which have already changed since I started typing this). But you all know how our “planning” has gone so far. So we’ll throw some ideas out there and hope something sticks.

Both trips were very productive. But also exhausting. Sitting in hospitals waiting and trying to make sure you ask all of your questions and absorbing all of the information is hard work! The last day of our travels, I felt the same as I do after a big move or event. You spend all this time planning, and then it comes and you are left processing your thoughts and figuring out how happy you are with the outcome. I have spent the last two months researching and talking to so many transplant centers and doctors and nurses, and working to get medical records sent where they need to go. All of that led up to the last two weeks. And I’d say I’m quite satisfied with where we are now. While I would love to have a “here is what you should do” direct answer that everyone agrees on, that’s just not going to happen. But I am forever grateful for the people that we talked to and the ones that helped us get there.

Get to the point already, right?

Okay, so I’ll sum this up in as few words as I can.

We spent a week meeting with the Cleveland Clinic’s living donor program. We felt so good about their team and the process. Honestly, we got a little too excited. The team there thinks Reid is an excellent candidate for a living donor liver transplant. But they want to get to the bottom of the potential cholangiocarcinoma (bile duct cancer) before they list him. Which is good… yes, we should get to the bottom of it. That also means more waiting and you guys know how we feel about more waiting. They requested an ERCP with brushings and a FISH analysis, and agreed that it may be best for our doctor here in Houston to do it. They won’t approve him for listing at their program until we get the results of that test (which will likely take 2 weeks, of course we’re going to request it be expedited). If those results prove that there is bile duct cancer, they will still likely list him, but it will change the protocol (and will change our overall plans, but we’ll cross that bridge if we get there.) Once they approve him to be listed, it will take 2-3 weeks for him to actually be added to their list. But we can start testing potential living donors as soon as he is approved. So that’s moving along, and we’re hopeful about it.

We have touched on the fact that living donor isn’t the best option for Reid, though. And that fact still remains. There are several reasons that have been presented to us that are hard to ignore. But if it’s between keeping the liver he has now, and getting a living donor transplant – the living donor is definitely the better option.

We also met with a doctor at UAB. This particular doctor comes very highly recommended, and he and his team have been ready to help us however they can. This doctor feels that cancer or no cancer – our sense of urgency in getting Reid a new liver should be the same. He has multiple dominant strictures in his bile ducts, therefore he needs a liver asap. In order to do that, we need to get exception points on the transplant list. We’ve applied for exception points four times at IU, but have been denied each time (UNOS makes the decision as to whether or not to grant the points). The doctor in Alabama thinks his team may be able to get exception points for Reid and hopefully transplant him soon(ish) after that. But we’ve got one more hurdle in the way. Our insurance does not cover the transplant center in Alabama. Therefore, we have to start by appealing our insurance and hope that they’ll cover us there. We have started that process, and we are keeping our fingers and toes crossed, as we believe this is the best option for us right now.

So over the next few weeks, we’ll know more (how many times have I said that now?) This week Reid will have another ERCP and a PET/MR scan. Hopefully between the two of these, we’ll know with more certainty whether the cancer is there (we have been told the FISH analysis during ERCP will have a 67% chance of detecting any cancer that’s there). Within a couple of weeks, we’ll have the results of those tests and know which plan we’re pushing towards. During that time, we should also be hearing about the appeal of our insurance at UAB and, if approved, will be listing and applying for exception points there. Once we have the test results from this week’s procedures, then we’ll be listing at Cleveland Clinic and starting the testing process for living donor (hopefully within in the next 2-3 weeks). Did you follow all of that? Basically, the next few weeks will be full of answers.

We don’t have finite answers right now, or a complete clear path, but we’ve got our plans that we’ll work towards until we have to adjust again. And we’ve got some great medical teams, and an amazing support system, in our corner. For that we are so grateful.