Are Support Groups Supportive?

I've had 10 days to process everything now and let it all sink in. I really wasn't expecting the news that I got from my recent follow-up with my hepatologist and I feel so "normal" that I think I wasn't really accepting the news and what it means. I have been so focused over the last 5 months on getting a diagnosis that I guess when I got the Celiac diagnosis and it was so simple to just go gluten-free, it didn't really feel like an answer. Since the Hep E ran its course and my insane fatigue and sickness went away, I felt so much better and thought maybe I was healed and my liver was going to make it!

I've been taking a few supplements in hopes that I could kick my liver into gear and keep it going and I'm not sure if that's helping or not. My hepatologist in UT is so anti supplements and the chiropractor is so pro that I don't know who to trust. I'm not a doctor and I don't want to be responsible for causing more damage than helping, but at the same time, if it's as simple as eating better and giving my body what's lacking in my diet then that's simple! How do you know what to do? I just keep praying that what I'm doing is the right thing. However, getting a stage 4 cirrhosis diagnosis was kind of a slap to the face. 

I just joined a Celiac support group on Facebook back in March when they mentioned it in the hospital and actually starting reading posts and paying attention after my diagnosis in May. After getting the updated condition of my liver, I finally decided to ask if anyone else had liver issues associated with Celiac. A few people here and there said yes, that their liver enzymes were elevated (AST/ALT), but as soon as they went gluten-free that they went back down and everything was fine. A few others mentioned auto-immune hepatitis but they confirmed I don't have that. I still feel like I'm out in the middle of the ocean of possibilities with no answers and on my own boat. 

I decided to take another route. If no one in my Celiac group had liver issues, maybe I should join a Liver Disease support group and ask if anyone had Celiac. I was hopeful that I would find something, but again, nothing. After a few days of people saying the same thing, "Sorry you have so much going on.", "Hope you figure it out.", or whatever, I began to think.. it really doesn't matter how I got the liver damage anymore. It's done. I started doing research into liver transplants. I asked why more doctors don't do living donors. Boy, were my eyes opened! I felt attacked as all these people who are all in the same boat as me (but worse) yelled how dare I ask like it's such an easy thing! If it were so easy, then all the people who had joined this support group and died waiting for a liver would still be alive. I felt ashamed. I felt confused. And, now I feel... scared. Why isn't it that easy? 

The most common responses were: 

1. Not all doctors will do living donor transplants because you are putting the donor at risk until their liver regenerates which makes two compromised liver patients out of one.
2. It's very expensive.
3. There is a very small window that you can get approved to have it done - it's after your MELD score is high enough to put you on the transplant list but before your condition is so bad that you can no longer survive with only a partial liver and require a full one from a deceased donor. 

Therefore, very few patients can even consider using a live donor - not to mention the fact that if you have people who offer, they have to go through extensive testing to meet so many requirements before they can even be considered like blood type, age, size, health status, etc. And they have to pay for all the testing themselves - or someone does anyway. 

So, now that I'm the outcast of my very own support group, I cringed and did as I was told and read through the posts of others to see what they were going through while being on the transplant list. People asking for help and advice on how to get through the days of pain, throwing up blood, swollen bellies that make you look pregnant, getting 9+ liters drained on a weekly basis to feel relief... That's what it comes down to. That's what a 30+ MELD score looks like. These people waiting for a new liver while theirs is too far gone to help them anymore and their bodies are weak and foggy-headed due to the poison they can no longer filter. 

Sorry, that's really dark, but that's the reality of liver failure. My next thought, if I ever do get to the point where I need a liver transplant, what's to say that whatever caused my own liver to fail won't happen again to my new liver? We never really found out what caused it all. Was it just the Celiac? Will they even consider giving me a new liver without knowing the cause of what killed my first one for that very reason? There's just so much to think about. It's hard not going to a dark place when you have no answers. It's really hard to stay positive.... All I can do is take it one day at a time. 

Next on the to-do list. I'm waiting for a call from the hospital to get a CT. My hepatologist will decide at that time if he wants another liver biopsy or not. Then, I don't know. Keep living I guess.