Liver Diseases Support Group: Let’s connect

The picture of my right wrist shows faint “circles” on my radius. These are called “ghost holes” and are where screws used to be from a previous surgery. That’s when my right wrist was fused. My right wrist also shows that a row of bones is missing; that was the 3rd surgery on my right wrist - I had 6 total on that side.
Pics of my left wrist shows that my plate and screws are still there from an ulnar shortening and the screw I had to have put in my thumb because that joint totally stopped working without excruciating pain - both done at the same time. The other 2 screws were installed during my surgery last October. That’s when I also had procedures done to a few tendons around my thumb and the Suave-Kapandji procedure, where the ulna is cut, part of it removed, and the screws attach the ulnar head to the radius. There is a tendon that keeps the rest of my ulna “tethered” in place, but there’s still a bit of movement that happens. The same S-K procedure was done on my right arm in February of last year (24).
(Thanks for checking these out. I’m quite “proud” of these, kinda took a lot to get through all of these surgeries. )

I just joined this MayoClinic site in hopes of finding support for cirrhosis. I just had a fibroscan today... I read the results and have not talked with my GI, yet. My median stiffness number is 22, and that looks pretty serious. I really don't know what to expect. I'm 52 and have drank heavily (after work) for about 7 or 8 years. It seems this came on pretty quickly?

Welcome to Mayo Clinic Connect, @elouise. I, too, hope you find the support you are seeking and believe there are many members here who'd be happy to dialogue with you.

Within the new Mayo Clinic Connect Liver Diseases group, there are a variety of discussions you may want to check out. I'd suggest you conduct a search for keywords that are important to your situation in the Liver Diseases home page, in the search bar below the blue box. To start, here are a couple discussions I noted that may be of particular interest to you:

- Cirrhosis of the liver: What are the signs? https://connect.mayoclinic.org/discussion/cirrhosis-signs/

- Liver Cirrhosis: Want to connect with others https://connect.mayoclinic.org/discussion/liver-cirrhosis-1/

I have liver problems since 2008 but upto now no one can help me. I had many syptomatically treatments from Ayurveda and homeopathic medicine

Hi, @candybar1234. Welcome to Mayo Clinic Connect. I moved your post here so that you could talk with a variety of members who are discussing liver disease:

- Liver Diseases Support Group: Let’s connect https://connect.mayoclinic.org/discussion/liver-diseases-group-lets-connect/

What liver problems have you experienced, candybar1234? Do you have a diagnosis?

I have hemochromatosis I have to have a phlebotomy for the remainder of my life. Mine is an inherited disorder.I have never had my iron checked.I I was tired which is very unusual. I had blood work including my liver # was high. I would have never known had I not been so tired

I have been looking for support groups for 9 years . I was diagnosed at the age of 36 with alcoholic liver cirrhosis endstage. They had given me two weeks to live . Here I am 9 years later still waiting but I'm living life like I don't have cirrhosis. Everyone around don't even believe it when I tell them I'm waiting on an organ which makes it so hard and so scary for me. I missed the call for my liver so now I'm inactive on the list. But I'm also torn on receiving because I know my life is about to change from living normal to medication or possibly being that statistic that doesn't make it past a few months. My meld score is 7 ,I've had lesions so the doctor added points to rush my transplant by saying I had liver cancer but it turns out that I don't as of now. My question is how did you get away from that fear that you spoke about ? I am so scared of the surgery I ball up and cry but mainly because I feel great right now and look okay. So I'm like why do it and not wait till I'm at a higher meld?

Hi,
I’m Josephine. In 2007 I gave first birth baby girl. Everything was normal. I had 2nd pregnancy in 2009 June and miscarriage in September after I had UTI with fever, malaise, WBCs and RBCs was very high. Continuously on Antibiotics and Antipyretic for 9month. In 9month very terrible condition with these symptoms I had 3rd pregnancy but it was very hard time for me. Then after my delivery same condition with fever weakness , vomiting color change even 4years with these symptoms with so many different types of treatments they tried but at last they put me on steroids. After 3month I stopped by myself and went to Ayurveda 3 years they treat me symptomatically. Getting better and I took 7years then I came to USA and again I was suffering with symptoms I went to dr glera 3years I paid lots of money. He said I have some kinds of viruses and bacteria in my body and liver fluke. Very expensive medicine 2 sessions for liver I completed. Since 2008 I am suffering but not yet final diagnosis. Still pain in liver, right shoulder, blotting and multiple other issues and symptoms

@nancyraine I imagine this is harder to consider since you look/feel well, so the prospect of upending that is terrifying. In my case I was so ill, bright yellow, waterlogged, exhausted, scared to die, high MELD so there was no guesswork involved. I just had to do it. I am a widowed parent to a now 24-year-old, and it was easy to say, if anything I’m doing it for her. My transplant experience-the surgery, immediate aftermath, longer term recovery- has had many challenges but I have been so relieved to feel well again, today it feels like nothing ever happened! I marvel at simple things like my brisk morning walks, my ability to work and care for my patients again. I had a lot of confidence all would be well, despite entering the unknown.

If I were you I might consider two things- one is that I’d want to weigh the risks of not having a transplant- development of cancerous cells, the affects on other organs such as kidneys. Also, it’s possible you are so used to how you feel, you don’t know how much better a new organ would make you feel. Even though I knew I felt lousy, I absolutely did not appreciate how bad it was until I began to feel well. An example is my cognitive functioning- now that my mind is so clear, I see how certain tasks were hard to complete when I was sick- I didn’t previously have any insight into that.

I empathize with what you are facing— it is scary. But there is so much hope. All good things for you. Kate

Kate , you have no idea the hope you just gave me. All I wanted was to hear from a real person not a doctor or family member but from someone who knows my fear. Now when I go in on June 26 to talk to the liver transplant and pray they reactivate me back on the list I can go in with more ease on making the decision. Your right I'm comfortable and feel in control of how I am right now. And it so scary to into the unknown ,but knowing that you fought through it and you feel peace and well now and like you said better than you thought is amazing! Thank you so much for responding your an angel 😔🙏 you gave me hope and I will do it and I won't be completely afraid