Jenn Bennington Liver or Leave Her

First post: Dec 8, 2022
In 2001 I was diagnosed with PBC - Primary Biliary Cholengitis - and told that within an average of 7 years I would need a liver transplant because my immune system had turned on me and was devouring my liver and leaving a bunch of scar tissue behind. When the scar tissue makes it impossible for the liver to do it’s job - that’s cirrhosis.

Well, I’ve still got the liver I was born with and it’s been almost twenty years. I sure beat the odds! But I don't deserve any credit for that. It's not like people who don't beat the odds did something wrong. I didn’t have a secret liver fairy or anything. It was all luck. I luckily responded very well to what were then new meds that weren’t a cure, but that slowed the progress of the disease. However, PBC is a progressive disease progressed. About a year ago my sad, tired liver finally entered the ominous-sounding, “End Stage Liver Disease.” As my liver specialist put it at the time, despite my successful response to the meds over the last two decades, “you will not escape a transplant.” Ouch, right?

Transplants are scary - some more than others. I was comforted by the idea that when/if it came to transplant time, my blood type sharing big brother would be my living donor. Livers are unusual in that they can regenerate from existing tissue, so Ken was going to give me a chunk of his liver and his remaining liver would then regenerate, as livers do. Living donor transplants have a better chance of extending the organ recipient's lifetime for a bunch of reasons, chiefly because they can happen before the patient becomes super sick, thus lessoning the chance that the partial liver will be welcomed into a really damaged body. The longer the wait for a new liver, the more ways having a sick liver has forced the body to change the way it functions. So generally speaking, living donor liver transplant = good, cadaver liver = far less good (but still good!).

Well, things didn’t work out for my big brother and I, so now I’m on that cadaver list. OK, it's not ideal but I'm sure a new liver will come my way in time and it'll all end well. Well...turns out, I’m among those on the transplant list least likely to be matched with a cadaver donor in time (to be blunt, “in time,” means before I die). I’m still in the beginning of the “end stage,” which means that with or without a liver transplant from the list, I have an average of 10-12 years left. The only way to increase those numbers is to find a living donor and get the transplant ASAP. 

Would I love if someone reading this said, “hey, I’ve got type O+ blood and am relatively young and healthy! I should look into helping Jenn out!” Yes, of course I would. But this site is also about communication. It’s hard to keep people in the loop when I have more than a few symptoms that impact my ability to function, not just physically, but mentally. I could give you a laundry list of symptoms, but let’s just say that whatever you can imagine, I probably have some experience with.

Yeah, it’s a bummer. So let’s look at the bright side. I’ve found that there is always a bright side with this stuff if I look hard enough. This COVID thing? I was already living in a sort of quarantine, so this pandemic has made me an expert at staying home.

This site will also provide links to the transplant clinic here at the University of Minnesota, including information about being a living donor, some info about my particular disease, contact info for my Transplant Coordinator (Tom - I call him Tom Transplant), and progress reports about the latest indignities I've suffered and what I good attitude I have about them (I'm looking at an endoscopy and colonoscopy later this month - I've had several of those over the years but never checking out both ends in tandem).
To answer some of the most often asked questions people have about my situation real quick:
• Are you in pain/discomfort? Yes and no - there’s a medication for almost everything and so far they mostly work for me. There's also a side effect for every medication that must be weighed. The trick is In balancing using various meds to help me have a decent quality of life and keeping my resistance low enough so that when/if I get my transplant, I’ll be able to use the meds as needed without  ODing.
• What are your symptoms? It’s funny, actually. The liver is essentially connected to so many bodily functions, you wouldn’t believe the vastness of my symptoms. Some make no sense (loosing my teeth?!?  Short term memory loss!?! Tremors and stuttering?!?) and some are what you can probably guess (nausea, fatigue, abdominal pain, edema.) 
• Wow that sucks. Yes. Yes it does. But I’ll tell you what: dealing with your inevitable mortality at such a young age REALLY puts things in perspective. I have more to be grateful for than most -some of which are directly related to having this disease define me and I try to remember that every day I think it makes me more content as a general rule, even if there is fear of the unknown. 
• Wait! I’m related to you! Am I or my children going to get this?!? Nah - very doubtful. I was in a study at Mayo a while ago that concluded that PBC is hereditary but not genetically inevitable. It is an auto-immune disease, and I have multiple relatives with auto-immune diseases on both sides of my family. This increases the odds that I will have an autoimmune disease. PBC is considered a very rare disease and requires a combination of genetic pre-disposition and environmental factors. There are lots of theories about what those environmental factors are, but none of them have been proven to be the trigger. Also, if you're a guy, you lucked out (of course you did): PBC is found in women 90% of the time. And no, no one knows why.