... to anyone that stopped by after reading the last post, expecting an update to my Liver Dr appointment. In my meager defense, I offer up that there was enough information and next steps, that I needed a bit of time. Time to let myself think about it, "soak it in" knowing this is my problem. And let's not mention the time it took to type it out on my phone to let certain friend/family members know. I typed it once, then pretty much copy/paste to everyone minus a couple personal changes in text. But YOU don't know... so, I'm going to lay it out here. Besides, I think it will help me focus on getting over accepting this is the solution, and get busy doing it.
1.) Dr. was happy the amount being drained at paracentesis "seems" to be getting less (at least over the last couple weeks or so). Still too much, and wants me to continue weekly. Most of that is for my comfort (the weekly part) but if I really wanted to, I could change my appointments to longer periods. After this coming up on on Monday, I pretty much reach my patient expense limit, and deductible. I found out, that my patient responsibility amount, to only the hospital for the paracentesis (not any doctors) is $1710. Each. Last year, they had me prepared to bring in a payment of $371, so I must have been at last years limit at that time. But $1700?!? Crazy.... but I'm going to keep going.
2.) New medications. The Wife was able to go with me, and we brought up some of my issues with "brain fog", short-term memory issues, and my "bad days" where I Am lethargic and sleep all day. Dr prescribed a couple more medications to help with that: Lactulose and Xifaxan. Lactulose is a laxative fluid that helps the body pull the ammonia out of the system, and help the body rid it by bowels, instead of urine. The Xifaxan is a stomach antibody to help fight the bacteria that creates the ammonia. Both are to help clear up the encephalopathy ("brain fog") I have been having for awhile. Lactulose is a special order prescription, so they contact me and mail it to me. Weird.
3.) We discussed briefly a TIPS procedure, that inserts a stent that helps direct some of the flow of fluids to the liver, to basically be sent back through the body. It reduces the pressure/stress on the liver. However, at this time the Dr wants to wait a couple months. With the recycling of fluids through the body, the risk for other issues coming from something in the fluid is higher (like a 2nd merry-go-round for a bacteria). I agree to wait a couple months for further discussion.
4.) Transplant. Oh boy. This is one I really do not hope I will need. Obviously it is more of an end-stage, and all those requirements, dotted i's and t's, and a viable donor is all needed as well. To even get on the list, one has to be sober for six full months (that will be March for me), and pass all their rules/requirements/tests. I am not sure what all is involved in starting that process, but that is what we are doing. The Dr said it is better to get the preliminary processes of the transplant out of the way, as if the need were there for a speedy transplant as soon as March hits. I ain't that bad off as of right now. But Banner University will be contacting me to setup a starting appointment for paperwork and the basics, and who knows from there.
Overall, my good days have been coming more frequently than the bad ones. Still having issues with fatigue (constant) and nausea (comes and goes - no pattern), and of course, the fluid build-up in the abdomen (hopefully getting better - as in reducing). Guess for now, we will see how these two new meds affect my system and go from there.
Welp, that's pretty much what all I can remember from my head. My notes pretty much have the same stuff. No idea what the Wife would offer up, as she catches important details I miss - that's why I take her to the liver doc.
Until next time,
PeacE
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