I want a transplant but doctors won't give me one

[jess_j]

My liver has been a mystery for my entire life. Since my earliest blood test from age seven I've had severely elevated liver enzymes and other signs of liver issues like low blood urea nitrogen (BUN). I've had three liver biopsies that showed I have stage three liver scarring and bile proliferation. I don't have jaundice, I don't drink, I'm not overweight, I don't have hepatitis; no one knows what's causing my liver damage. I have a number of rare diseases, like Ehlers Danlos Syndrome, but none seem to be linked to my liver problems. I thought Mast Cell Activation Syndrome might be causing it, but my liver did not respond to the medications used to treat MCAS. My liver enzymes fluctuate from being extremely high (like my alkaline phosphatase being 495) and being lower, but still abnormally elevated. They fluctuate at random. I feel like I'm just waiting for my liver to completely fail. I don't want that to happen at just any time. In summer I'll be leaving the country for a month to work in the middle of nowhere in Africa, what if it happened then? I just want a new liver. I think mine is beyond saving and I hate the way it makes me feel (itching, fatigue, etc). My doctors aren't doing anything but referring me to other doctors that also have no clue what they're doing. I don't want this liver and I've told them that, but they tell me to just wait and go see more doctors. I have no idea what is causing my issues and I just want this to be over. Advice? Thoughts? Ideas?

[Cat-B]

You poor thing, it sounds like you are getting very stressed. Sadly there aren’t enough organ diners and therefore a strict criteria has to be adhered to. Have you tried the reduce your symptoms and improve your blood results with your diet? I have end stage liver disease and by radical and strict diet 6 years on my bloods are normal apart from a slightly raised GGT. Also a transplant is not a quick fix! The anti rejection therapy is for ever! Have you seriously thought about going to the “ middle of nowhere in Africa “ there might not be clean water etc, that’s the most scary thing I read in your post! Have you tried CBT or another talking therapy. Good luck

[jess_j in reply to Cat-B]

Thank you for your reply! I have stomach paralysis and other conditions that impact my ability to eat and digest my food. I struggle to eat anything at all; I’ve been emaciated for my entire life. So, I am not as concerned with the health of my food as I am that I’m eating at all. I’ve even had to consider getting a feeding tube placed because of how difficult it is for me to eat. And— since this has been going on for my entire life no matter what lifestyle changes and treatments I’ve tried, I really don’t think a change like that will significantly improve my symptoms. I’m going to Africa to work as a research assistant. I won’t be alone, but it is going to be incredibly difficult for me thanks to my chronic pain and other conditions. I tried CBT for 5 years. No luck unfortunately. I don’t know what else I can really do.

[Ewife]

Hello! Although transplant is a lifeline for many, it is not an easy fix by any means. Although my husband is sick enough to need one, he has been waiting 15months so far. This is partly because he has complications also because his bloods are actually stable, though poor - consequently when a liver becomes available there's always someone sicker that needs it first. It basically is classed as life saving surgery - if you aren't dying, and they can keep you alive and reasonably well without surgery, they will chose that for as long as they can. They always consider and re-visit whether the 'benefits outweigh the risks', and if it swings either way they will not register you, or would even deregister you. Its a really really tricky area to explore your feelings and emotions and I totally get how you are feeling, but would just like to point out to you an honest view from the other side - so that you have a reasonable balance to how you're feeling.I wish you all the best

Ewife

[jess_j in reply to Ewife]

Thank you for your reply! You’re right, there’s a whole other side to the story. Transplants take so much time, energy, money, pain, and resources. I just don’t know how else I could proceed and feel safe with my current liver and all the symptoms that go along with it. I have so many medical issues already and this one adds so much stress and discomfort. On more than one occasion I’ve had doctors commit medical malpractice and medical negligence against me. I’ve been lied to and left in immense amounts of pain for the majority of my life. So I don’t trust that my doctors would get me the treatment I needed even if it was a life or death situation. I just want to move on with a healthy liver.

[JMD76]

Have you been tested for Wilson's disease? It is quite a rare genetic condition and can damage your liver from a young age. I was diagnosed with it a few months ago, by which time the liver damage was advanced and chronic. It can be managed with medication if caught early enough.

[jess_j in reply to JMD76]

Thank you for your reply! I have been tested. I don’t have the disease myself, but I am a carrier so if I had kids they would have it.

[JMD76 in reply to jess_j]

Both parents need to carry the gene for their kids to get it. Neither of my parents have Wilsons, but because they carry the gene I have it. There is a 1 in 4 chance of my siblings having it, so they are being tested too