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Reid's Health - Update

We don’t have anything earth-shattering to report, but we have had a lot of doctor’s appointments over the last two months, and I have a lot of people ask how Reid is doing… so I thought an update may be good.

Quick recap: Reid was diagnosed with Ulcerative Colitis (UC) and Primary Sclerosing Cholangitis (PSC) 4 years ago this May. His PSC has progressed significantly over the last two years, and after two hospital stays in March and April of 2017, it was highly recommended that we start the liver transplant process. He was added to the transplant list in Houston on June 8th, and the Indianapolis list at the beginning of August. We’ve applied for exception points (usually necessary for PSC patients – the disease makes the bile ducts of the liver very blocked, but the liver itself is not as bad. So PSC patients tend to have a lower MELD score) 3 times and have been denied.

As I mentioned, we’ve had a lot of doctor’s appointments lately. But that’s becoming a new normal. Towards the end of September 2017, Reid had his 5th Spyglass procedure, so his GI specialist could take a closer look at what the disease was doing to his bile ducts. After that procedure, the doctor shared that he was very concerned about potential malignancies. Fortunately, all biopsies came back benign. But this just showed how much quicker his disease is progressing than we thought it would.

Note: Reid has a very high (90+%) chance of developing cancer if he doesn’t get a new liver, because of his PSC and UC. The UC makes him very likely for colon cancer, and the PSC makes him very likely for cholangiocarninoma (CCA). CCA is definitely what we are most afraid of, because it is hard to detect (which is why we’re now scanning for it every 3 months), hard to treat, and has very low survival rates.

Since Reid was diagnosed, and added to the transplant lists, we’ve shared that a deceased donor was his only option. Because that’s what we were told initially. But the doctor’s lately have been discussing using a living donor for Reid. They have said this is a “Plan B” for him, but with his disease progressing and his chances of cancer so high, we’re there now. We hoped it would be easier to get him a liver. When we went to Indy, we were given so much hope that we’d be able to get exception points which would give him a liver sooner rather than later. But as of right now, we’re at a stand-still. Until he either develops cholangitis and is hospitalized again, or develops cancer, then he won’t be moving much on the transplant list. And the wait for a liver will continue.

We refuse to sit around and wait for Reid to get cancer. I mean, who would?! We are fortunate enough to know the risks, and to be able to fight like hell to avoid the worst case scenario. Is it all in our control? Of course not. But we will focus on the things that are!

We were so glad to learn that Reid’s transplant center here in Houston is starting a living donor program “early 2018”. So right now we are waiting on that program to launch, and are hopeful that will provide a good avenue for Reid to get a liver this year. That’s my goal – to have a new liver in 2018.

We have had several people over the last year offer to donate… which makes me cry just thinking about it. We truly appreciate it and will be circling back with you soon. We don’t know much about what donation will entail, but I promise to share all of the details with you once we learn them. The first thing that I know is that the blood type has to be A (possibly type O), because that’s what Reid is. The donor doesn’t have to be 6’8” (thank God!), but I think they have to be somewhat similar weight to Reid (around 200 pounds). And I believe the donor must be 55 or younger. Other than that, I don’t know much.

Overall, Reid has been feeling pretty “okay”. We get comments from people all the time that he is looking better. His hepatologist has him eating several (ideally 7) times a day, which has helped to get some muscle mass back and he’s put on a little weight. He’s tired, all the time, and really struggles with that some days. He has some abdomen pains from time to time, and some days just doesn’t feel good. And he’s very itchy. But overall, those things aren’t too bad, especially considering all the symptoms that a lot of PSC patients have – which are symptoms we are trying so hard to not progress to.

I’ll provide more information as we have it. If you have questions, please don’t hesitate to ask. We never mind educating others on this disease and the liver transplant process.

We appreciate everyone’s support!  


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