I don’t normally parade my personal issues before the Board, but this one has me a bit shocked. I’m 64 and have been a moderate drinker (like, about one to two drinks a week) for most of my life (there were maybe a couple dozen times I got seriously blitzed during my dissolute youth, but I got that out of my system by the time I was 25 or so). A few weeks ago I had about of illness that got narrowed down to a liver issue, and after an ultrasound and blood test, I’ve been diagnosed with Stage I – Stage II cirrhosis. It certainly gets one’s attention to hear “might require a liver transplant in 3-5 years”. I’m aware the cause can be very difficult to pin down if not clearly alcohol-related, as seems to be the case here, but I guess it doesn’t matter very much as the damage is done.
Immediate response seems to be mainly dietary restrictions, plus some additional testing to verify the level of portal hypertension that may exist.
I guess I’m looking for any commentary from people here who might have had to deal with this disease, in particular how likely it is to progress as long as I follow the dietary guidelines I’ve been given.
I agree with nearwildhaven, it seems doubtful that it would be alcohol related if you’re being truthful about your level of alcohol consumption (and I have no reason to doubt you).
Now, could it be alcohol in combination with other medications you’ve taken? Are you overweight? Did you have previously undiagnosed hepatitis?
There don’t seem to be any obvious environmental factors I’m currently exposed to that could account for it, and he blood test was negative for all three variants of hepatitis. Regarding past lives, for about a decade and a half during the '80s - '90s I worked in a field position in oil and gas exploration and as part of my job (analyzing and processing drill cuttings samples) was regularly exposed to a hydrocarbon-based solvent called 1,1,1 Trichloroethane, which since that time has been rather vaguely-linked to liver problems in a few papers I’ve seen.
If such were the case, well, the damage is done and there seems little else to be done about it. As I stated in the OP, I’m most interested in how one lives with this going forward.
After Hepatitis C and alcohol, non-alcoholic fatty liver disease is the leading cause of cirrhosis. It’s associated with obesity, hypertension, elevated lipids, and glucose intolerance/diabetes. It hits a lot of people unexpectedly. Ask your docs if this is likely what you have.
Yeah, that was me. I have cirrhosis, although there’s no vagueness about what caused mine. I simply drank too much beer every day for too many years.
Living with this disease isn’t hard, the knowledge that I am going to die soon is. I’m on the bottom rung of the transplant list and I am under no illusions about how many people die waiting for liver transplants.
So, I keep light hearted about it, gave up the sauce, take my meds, smoke weed for the neuropathy in my legs from alcohol damaged nerves there rather than take my oxycodone (which is the HEIGHT of irony that in my state there’s no medicinal, but hey! It’s totally okay to give me a prescription for a high dosage of an addictive opioid!), eat far less salt than I used to and try to keep my fluid intake down so as to limit my ascites.
I now feel better than I did last year and have returned to work. Unfortunately, I have also developed two hernias, one umbilical and most recently, an inguinial hernia, neither of which can be repaired because apparently general anasthesia will kill me a couple weeks after such a surgery.
So OP, if you have any other specific questions, I am all ears.
Has the disease continued to progress in some measurable way? I do note that you mentioned you were feeling better than a year ago.
The problem with general anesthesia is one I hadn’t heard of before. Is this due to the liver being unable to process the anesthetic drugs? This could be a big problem down the road in my case, as I have a couple of conditions that could eventually require procedures under general to resolve.
Except for having been a bit overweight (although not drastically so), I don’t seem to have any of the risk factors you mentioned in the second sentence. But thanks for the input.
I was diagnosed with this on March 7, 2017. I checked myself into the ER with abdominal distension/bloating and after some tests, told me the good news. They also drained NINE litres of fluid out of me that day. If you do not have ascites, be very glad.
I still remember the doctor telling me I had liver cirrhosis with ascites. I was like “Cirrhosis? But I only drink beer! I thought cirrhosis happened to people that drink a fifth of vodka a night!”
He said “How much beer do you drink?”
I replied “I don’t know, usually a six pack a night, sometimes more like 8 beers on the weekends.”
Doc then asked “For how long”
Now there was a serious pause as I calculated, something I had never thought of before. My reply was “Thirty years…”
He said “That’ll do it. It’s still alcohol.”
The disease has progressed some. I lost my hepatologist (due to my local hospital eliminating their hepatology department and my liver doc is based in Cincinnati, so he was now out of my Medicaid network) several months ago and am meeting my new one this month for the first time. Yes it took THAT LONG for me to get an appointment with this guy. I need retested to recalculate what my MELD score is. If you don’t know what that is yet, it’s a numerical score based on bloodwork. The higher the number, the closer to death you are, basically. Last time I was checked, I was a 9. I’m probably a 12 now, I am guessing. Anything in the 20’s indicates imminent death. You don’t die because your liver fails so much as the liver failing causes all other sorts of organ systems to shut down, THEN you die.
You’re exactly right, it’s the liver’s inability to process the anasthesia. If you need any type of elective surgery, I would get it done ASAP before your liver gets too sick like mine and nothing can be done.
Like this hernia situation I have. The specialist I saw yesterday in Indianapolis at IU Hospital told me that unless my umbilical hernia gets strangulated (which requires emergency life saving serious surgery), he absolutely under no circumstances would repair the hernias as elective surgery. The irony of course is what he told me next: that the lifesaving bowel surgery would also probably kill me. It’s weird…he said “Oh no, you don’t die on the table…it takes 2-3 weeks, THEN you’ll be dead”.
There is also Primary biliary cholangitis where the bile ducts are not working causing progressive liver injury up to cirrhosis. I have a friend with this. She initially presented with a pruritis that didn’t seem to correlate with allergy. I feel proud of myself that it was me who encouraged her to mention it to her GP and to give a gentle steer away from an allergy diagnosis. I was and am of course horrified at the resulting diagnosis.
I have a Facebook friend (former co-worker) who, when I worked with her about 10 years ago, was diagnosed with a type of cirrhosis that is mostly autoimmune but might also be caused by Dilantin, which she has taken most of her life for a seizure disorder. In recent years, she developed ascites (fluid buildup) and had to have it drained periodically. They would take off a gallon or more of fluid, which must have made her look hugely pregnant.
In the meantime, she had a procedure to re-route the blood flow around her liver; if it worked, she wouldn’t need to be tapped any more, or at least have it done less frequently, and if it didn’t, she would be evaluated for a liver transplant. Thank heavens it worked; she hasn’t had to be tapped since, her appetite has returned, and as of now she does not need a transplant.
Yes, there are many other causes besides alcohol, HCV, and fatty liver disease. I’ve seen a few folks with PBC. Other causes, all possible but of varied small likelihood include:
Thanks, Qadgop, for the list. After seeing it, I remember now that my former co-worker has biliary cirrhosis, although IDK if it’s primary or secondary.
My maternal grandmother’s younger sister had it and she didn’t drink. The family was told that it had been caused by the drugs she’d been given for schizophrenia. Ovarian cancer killed her before the cirrhosis did.
Nah. I’ve had a few of those. They’re looking for engorged varices in your esophagus, duodenum, etc. If they find any they’ll “rubber band” them. They do this to see if you have any enlarged veins in your esophageal system. Think of blood being like water looking for the path of least resistance. My crude understanding is that due to portal hypertension, the blood that would normally circulate through your liver gets “backed up” and will then seek alternate avenues of flow. If left unaddressed, any engorged varices you have could burst, which is a serious issue,
You’ll be under twilight sedation, you won’t know what happened. When I awoke from my first one, I railed against Donald Trump and was convinced that his admin had implanted microchips in me in order to monitor my behavior.
Thank heavens it worked; she hasn’t had to be tapped since, her appetite has returned, and as of now she does not need a transplant.