Its been a while since I’ve posted an update! So here goes… I’ve been home since November- which I am so grateful for. That said, “being home” is far from back to normal. Everything I was doing in the hospital, I’m now doing. I’m on leave from work until I’m recovered from transplant. I’m still doing PT- I’m mostly independent now, with the exception of stairs. Eating is now my full time job, which also means needing to keep a constant eye on my blood sugar.
Even the routine procedures I needed in the hospital, I have continued to need at home. My liver disease creates excess fluid build up in my abdomen- making me look 9 months pregnant by the time I get it drained, during an outpatient paracentesis. Its so much more than typical swelling. It creates a huge problem with eating what I need. It presses on my stomach, as well as my intestines, basically shutting them down. The maximum amount of fluid they will drain is 4 liters (8 pounds!), and I ALWAYS hit it. I’m usually ready to eat EVERYTHING afterwards. I have to get this done every two weeks.
I also have continued on dialysis. The event that lead to all of this (primarily my liver disease progress), also damaged my kidneys. I was on 24 hour dialysis at times in the hospital. Since leaving, I started on 3 days a week at a dialysis clinic. I’m currently down to twice a week, and likely will be at once a week very soon. My kidneys are doing their job well, and we have every reason to expect I will be off dialysis entirely sometime soon.
Its all a lot of work. When I have time between all of this, I generally am sleeping. With respect to transplant- most ask when that will happen. The best I can answer is that this health scare actually made me temporarily too sick for it, and reasonably put the process on hold. Currently, I am approved for my liver transplant, and I’m very close to my next evaluation for lung approval. Because I need them at the same time, I’m not officially listed until that approval. Once I am, transplant simply depends on when there is a viable donor for me. It could be weeks, months, or longer.
In the meantime, I just keep doing what I’m doing to stay healthy enough when that call comes. If you are wondering what you can do to help, any contribution to COTA for Fessler Strong helps!
Before and after drainage
