New Here! Cirrhosis is causing overwhelming fatigue -- what to do?

[RosaRugosa]

Hello! I am happy to have found this support group. I developed liver cirrhosis about a decade ago. Since then, I have been too ill to work, with the government listing me as "Totally and permanently disabled." I have had several health crisis, including coming close to death from ruptured varices. I am stable for now, it seems, but I am very, very weak. I spend many days on end in bed.

What I want is to be strong enough to sit up for most of the day, and to spend maybe 1 hour doing mild activities such as showering or cleaning my home. I am dependent on others and want to reclaim my life.

My doctors say to exercise a little and I will gradually get stronger, but I have tried this for many years and it never works. Pushing myself even slightly causes me to be worse, and is what triggered my ruptured varices. Also, unfortunately, 3 of the 4 most important physicians on my medical team left their practices in the past year. I feel I am very much on my own right now.

My liver is extremely inflamed and I suspect that is why I have so many relapses. I'm hoping to find something -- a food, a supplement, an OTC drug -- that might reduce the inflammation. I also would like to know of supplements that strengthen the liver in general. I take Milk Thistle, but don't notice a difference. If anyone knows of new conventional treatments to try for my problems, I would be very interested. Traveling is difficult for me, but I would try to travel if there were some expert who might help me.

Thank you in advance for suggestions!

[Hnybny33]

Welcome to the group. I would like to know if you were aware you had portal Hypertension before varices ruptured? Also are you experiencing alot of pain?

[RosaRugosa in reply to Hnybny33]

Hello! No, my doctors weren't really taking my cirrhosis seriously before my varices ruptured. I don't think they had ever checked my portal hypertension level.

About a month before my rupture, I was told I had grade 2 varices. I asked my doctors if the varices were dangerous, and they just blew it off. My GI specialist wouldn't even return my calls. Then, about a month later, after an unrelated surgery, I was trying to do a little bit of walking for exercise (the length of one block), and I felt very weak. I had had episodes of severe fatigue before, and the doctors said I was just a hypochondriac, so I saw no point in going to the ER. I thought the weakness would improve if I stayed in bed for a few days.

But instead, a few days later I woke up, went to the bathroom, and couldn't stand up. My husband helped me to the bed, and I started vomiting enormous amounts of blood. He called 911, but they had a hard time keeping my heart going in the ER. Once they stabilized me, they found numerous grade 4 varices and put on 13 bands. Then I was in the ICU for a few days.

There really was zero pain involved with the ruptured varies -- just extreme weakness that progressed to semi-consciousness.The esophageal bands hurt starting a few days after they were put on, but the ruptures themselves did not. I wasn't afraid until afterwards.

Because my liver problems nearly killed me, I now am seen by an actual hepatologist -- liver specialist. He seems really good, and someone from his office always returns my calls. (Unlike with the GI specialist.) I've also been warned never to taken aspirin. (My previous doctors said I could go back on low-dose aspirin a few weeks after my surgery -- wrong! Too much chance of bleeding.)

As for pain, I have some pain related to the liver problems, mostly an inflamed stomach. And, for a while, I was having regular bandings and the banding hurt. I have pain from other, non-liver conditions. But, the varices never hurt, even when they ruptured. And yes, that is scary -- I'd feel safer if I could feel when they ruptured.

Instead, I check some other things. I am supposed to look for black/purple/tarry stools, although those usually won't show up until a few days after a bleed. Also, when I feel very weak, I check my pulse and oxygen saturation. When I had my "big bleed", my pulse was elevated (about 110 instead of 75 or so.) At the same time, my blood oxygen saturation was low, although I don't remember how low. My physicians also watch me very carefully. For about two years, I was on 60 mg nadalol daily to reduce portal hypertension. It's now been reduced to 20 mg. And, I have an endoscopy every 3 - 6 months to check for varices and band them if needed. Lately, they have all been grade 1 and covered with scars, which my hepatologist says is good. I haven't had a rupture since that "big bleed" a few years ago.

[nash2 Partner]

Hi Rosa

Hard place to be. The fatigue is particularly difficult. A small detail that might be of some value to you. All saturated fat is inflammatory so we focus on monounsaturated fat. Oils are your key energy source and it is important that they bypass the liver when first consumed. The liver doesn't have to deal with them until all the other cells have a chance to use them so it lowers the work load. Omega 9 is the most efficient oil in the production of energy so we recommend that. The oil that has these features is extra virgin olive oil. Here is a link with some information

fattyliverfoundation.org/ol...

There is no magic food or pill that will help. A plant based diet with a lot of olive oil is the easiest on the organ but not a cure. I personally take 4 tablespoons per day of the oil. You are in a quite fragile condition and it is important to remember that I am not a doctor. I am a fellow patient but you should discuss this with your physician if any of this information is new to you.

We wish you better health

Wayne

[RosaRugosa in reply to nash2]

Thank you, Wayne. My hematologist and my former endocrinologist also suggest monounsaturated fats, but didn't specify an amount. My hematologist suggests unsalted peanuts (high in both monounsaturated fats and protein), but I find them very hard to digest. I will focus on the olive oil instead, and keep track of how much I am consuming. Some of the dietary recommendations on this site I am already doing (I have been a vegetarian for 37 years, so I eat mostly plants), but I will take a close look at my diet and see what other changes I can make. Thanks!

[nash2 Partner in reply to RosaRugosa]

Hi Rosa

As to dose, the only dose research we have so far is for 60ml / day of olive oil. That is the 4 tablespoons that I personally take.

Wayne

[Hidden]

Hello Rosa

I just posted a long reply, but i see it didn't take for some reason. Anyway, I also suffer from severe fatigue, and have found nothing to help. I guess it's just part of the disease. A good diet always helps , but nothing will bring back the energy you used to have. I do alot of stretching, but no heavy exercise, it takes up what little energy i do have. My best hours are in the morning, so I've learned to get done what I need to do at that time.

[Karebear70]

Are you on meds to address the inflammation? Prednisone reduces the inflammation and that can make you feel better. I take prednisone, azathioprine and Budesonide to address it-it has brought my liver enzymes to almost normal

[RosaRugosa]

I'm not on meds for the inflammation, no. My doctor tells me that predisone makes type 2 diabetes worse. I'm not familiar with azathioprine and Budesonide -- can you tell me a bit about them? Thanks!

[RosaRugosa]

I looked up Budesonide and it is a corticosteroid, but unlike prednisone, it is extensively metabolized in the liver. Azathioprine is a drug that modulates (changes) the effects of corticosteroids. I have bad Type 2 diabetes, and generally corticosteriods make Type 2 diabetess much worse But I will ask my liver specialist about these drugs.

Karebear70, do you have Type 2 Diabetes?