Liver transplant - Let's support each other
What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?
Interested in more discussions like this? Go to the Transplants Support Group.
I go back for another ct scan blood work and an ultra sound....
Hi @benlam11, I can help. Please send me an email using this form https://connect.mayoclinic.org/contact-a-community-moderator/
This site is almost like SPAM !!!! If you register and forget your
password - you cannot retrieve it , if you try to Unsubscribe - you need
your password. So your stuck with endless emails.
@jeanne5009,
I have always been told that by taking good care of ourselves that we will be better prepared for the transplant surgery and recovery when it is time. I had my diagnosed liver disease for nearly 9 years before I had to be listed? And I was closely monitored by my GI during that time with a low score.
Has it ever been decided what has caused your liver condition?
@contentandwell - Happy Transplant Anniversary! You and your husband look wonderfully happy.
I firmly believe in celebrating our successes and especially our transplant! Thanks for sharing.
@racing212, It is good to hear that you are being monitored for this while it is a 'could be' tumor. My Mayo experience is that they will keep a close watch on it for you. I know that this is not a comfortable position to be in. I was believed to have cancer tumors in my bile ducts and my local transplant hospital was unable to get tissue samples so they had to inactivate me from the transplant list until they could get me to the Mayo team in Rochester for the tests. I did not have cancer and was able to be activated again. Rodney, I will be thinking of you during this time.
When you return in December, do you know what kind of tests they will do?
With an increased score, have your symptoms changed any?
Good that they found the precancerous areas early. I had non vascular hepatocelular carsamona in my old liver discovered by the autopsy the old liver. It was in a area that was non-operable. God speed on the new Liver Transplant.
Im on the list for liver transplant...went to Rochester last week for more tests and found out there's 3 spots that could turn into a tumor. My meld score also went up from 3 months ago. I go back in December for more tests..... Chuck
@jeanne5009 It sounds as if you are doing somewhat better than you were during the summer, so that's a positive thing. Hopefully things will continue to improve. It's so frustrating to not get enough sleep though. I haven't been too bad most nights recently but when I go through periods of sleepless nights I am really miserable.
By the way, I have read that higher doses of melatonin do tend to cause nightmares. I never take more than 3 mg. There is another medication out there now that has other ingredients with the melatonin but the other two are herbal and things that I cannot take being post-transplant. When I asked them about it at the transplant department they said no, but suggested that I take a second dose of melatonin in the middle of the night if I was awake. You are supposed to take it a couple of hours before going to bed so I did try that the other night (most nights I don't remember until I am going to bed) and then when I woke up about an hour and a half after going to bed I took another. I think it did help, and since a large amount was not in my system at once I didn't have really weird dreams -- I do tend to get more dreams than usual though. Some information says it is not really an effective remedy for insomnia. It may not be, I'm not sure. I do not take it nightly, just when I go to bed thinking I will have a problem.
You must be so frustrated to be decompensated but not yet have a high enough MELD to be on the transplant list. Is that due to the changes in how they evaluate it now?
Monday was my third "transplantiversary". I can't believe it's been three years. I thank God for every day I have been given. We went out to dinner to celebrate.
JK
@jk
I am not on the official list but Mayo evaluated me and said I was a good candidate but too early. I go up every 6 mo to be checked out. I'm stage 4 decompensated but low meld. Go figure...