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Liver transplant - Let's support each other
Transplants | Last Active: 2 days ago | Replies (1617)Comment receiving replies
Hi, @biteme Welcome to Connect. You have a very low MELD score, you are fortunate that your liver disease was apparently caught very early. I had a liver transplant in September 2016 and have not had any problems from it. I was told by the hepatologist who I went to after my cirrhosis was finally diagnosed that I probably had it for 10 years. I had symptoms that there was a serious problem starting December 2013. I actually had other symptoms before that were not considered to be serious - shaky hands, low platelets, being cold all the time, fatigue, and very severe leg cramps I was finally diagnosed in March or April of 2015.
What type of symptoms led to your diagnosis, if you don’t mind sharing? It seems as if we are all different.
@jeanne5009 A MELD that low after 3 years is great, especially if you are still able to have a good quality of life. It’s obvious that you are a positive person. I think that really does help. You can’t let the disease rule you.
@joanaiken I know that the wait for kidneys tends to be very long. Do you have any indication how much longer you will have to wait? Are you on dialysis? For some reason I never turned yellow before my liver transplant! As I said before, we are all affected differently.
JK
Replies to "Hi, @biteme Welcome to Connect. You have a very low MELD score, you are fortunate that..."
I went in with gallbladder pain in August last year. I was diagnosed then. I they didn't tell me that my MELD was a 17 at the time. Then I had my first visit to the transplant team and was so grateful I was at a 7. I have always been positive never a doubt or much tears other than telling my family and that was just a few minutes. I praise God everyday for continued health. My issue now is extreme lower abdominal pain here and there. I had a cat scan yesterday so I'm patiently waiting on the results. I immediately had a herniated belly button. Other than I feel great.
Thank you everyone for your support, this is my first time to reach out.
Denise
When I was diagnosed with liver disease, it was when I vomited frank blood in a large volume in the middle of the night on May16th, 2007. ER then admitted to ICU. Was informed that I had cirrhosis stage 4 and would require a liver transplant. WHAM ! Just like that. The hepatologists said that I was Hep C positive and had mostly acquired it 20-30 years ago and had no symptoms. My MELD score stayed 9-12 for about a year. Was hospitalized several times for bleeding esophageal varices with EGDs performed at regular intervals with some banding. Normal bilirubin is 0.3-1.0. The docs at Mayo said that they had never operated on someone with such a high level. I was placed on the kidney transplant waiting list last September. The nephrologist wanted me to be ready for dialysis just in case. I had an AV fistula created which quickly collapsed and failed. Next step would be a graft if needed. I am surprised that the only few people that have stepped up to the plate to be a living donor have medical issues that would disqualify them. Except for my husband, but that would run into caregiver issues post op. I admit that it has been frustrating, as you have to be more sick before you can feel better. That is where I am now. Support is so invaluable right now. I am now a medically retired RN who worked with renal patients for 4 years. The thought of dialysis scares me and I am terrified that I will need it...…. One thing that I have learned on this journey is that you need to advocate for yourself with the medical team.
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@contentandwell @biteme
Yes lucky so far. I have stage 4 cirrhosis with mild HE and small varices. Having issues with diaherria, interstitial cystitis and vertigo among others. Mayo is calling me in for a check. They are so good. Its a 5 hour ride but I don't mind for them to give me some answers. My PCP is awesome and watches me like a hawk too.
Sometimes I have to be my own cheerleader though.... some people tend to think I'm fine or will get better. Not an understanding support group. But, I look at it as that gives me more time to prepare them for the not so good days. They might be very surprised judging from what most of you are coping with...
Keep your spirit friends....we are stronger than most!