I’m sitting in the hospital as I write this, my 4th day here. I had my doctor admit me so we could work on several different problems all at once rather than spend weeks meeting with different specialists and working on them one at a time. But there is much more than that to report on my health.
Last Friday, I met for the first time with the liver transplant team at the University of Michigan. I went in there thinking there was no way I would get on the list for a liver from a deceased person because of all my other health problems, but was encouraged to find out that isn’t true. They said unless something unexpected crops up in the testing I have to do, none of my existing problems is a disqualifying condition. That was a very happy surprise.
That was the very beginning of a months-long process. I have a ton of testing to go through. Before I left U of M, they did x-rays and blood tests, taking 23 vials of blood (from someone who is already anemic!). None of those tests showed anything that would prevent me from getting on the transplant list. But I have to go back there for another endoscopy and colonoscopy, a chemical cardiac stress test and an MRI over the next few weeks.
The head of the transplant team took one look at my abdomen and wanted to get me in that day before I left for a paracentesis, where they stick big needles in and draw off excess liquid that has built up (called ascites). They couldn’t get me in, but I had that done here at the hospital a couple days ago. They can only draw off so much at a time and they pulled out 8 liters. They figure there was about 20 liters in there total. That’s 45 pounds of liquid! And that’s just the loose liquid in my abdomen, it doesn’t include the edema in my legs, which is probably at least another 20 pounds worth. So that’s 65 pounds or more of excess liquid I’m carrying around, which makes the effect of the anemia much worse.
As far as the anemia goes, we’re a bit baffled right now. It’s caused by the internal bleeding in my intestines, we know that. It’s why I get regular transfusions. So last Friday, my hemoglobin was 6.6 (7 or lower triggers a transfusion), but when I came into the hospital the other day, it was at 7.2. Then 7.3 later that day. How the hell could it be going up? The next day, it was back down to 6.6 and they gave me three units of blood, which should have raised my levels up over 9. But last night’s blood testing showed I was still below 7. What the hell? This makes no sense at all. They gave me two more units today and now it’s up to 8.6. Now that makes more sense. But what explains the last few days? No one knows. It makes no sense whatsoever.They’re adjusting my diuretic meds to try to more aggressively treat the edema and ascites. I’m hoping they’ll do a second paracentesis and get another 8 or 10 liters out of there. That would make my life a lot easier by itself. It’s reached the point where I can barely put socks and shoes on by myself and even the most mundane of tasks is exhausting and sometimes impossible. We’re also doing some testing to find out why my adrenal gland doesn’t seem to have recovered after weaning off the prednisone. That’s helping keep me anemic as well. Hopefully I’ll know more about that today.
So some of the news is good, some of it is bad. Finding out I will likely at least be eligible for the transplant list is very encouraging. I also found out there’s a procedure called TIPS that they can do to help relieve symptoms until I can get a new liver. But that’s a surgical procedure that will probably take me out of the game for a few days. Also, to get on the list I will have to get some major dental work done, work I’ve been putting off as I try to fight these other health problems. That is likely to cost thousands of dollars even with the dental insurance I have (dental insurance sucks, it only pays 50% of certain procedures).
As always, you can help with the cost of all this if you’re willing and able to do so. You can do so on Paypal using my email address (firstname.lastname@example.org). I’ll keep the updates coming. Hopefully with the transplant team at the world class hospital at U of M now overseeing my care, things will improve and make my life more livable until I can get a new liver. But that is a long way away. If I get on the transplant list, it will be about 6 months from now, maybe longer. Then I’d have to wait for a liver match and to be at the top of the list. About 50% of those on the list get a new liver in the first year. I can only hope I’ll be one of them.