Liver transplant - Let's support each other

@jeanne5009 I always found my visits to Mass General to be reassuring too. You are lucky to have such a good PCP. I think mine cared but was sort of clueless.
I’m surprised that you are stage 4 with such a low MELD. I hope your HE is not too troublesome. My episodes were distinct and lasted from less than a day to about 3 days - those put me in a hospital. After being put on xifaxan with no lactulose I didn’t have an episode for almost a year. When they resumed I had to take lactulose also. The resumption was an indication that my liver had deteriorated further.
I looked and felt well right up until the last month. People were always commenting on how well I looked, even my PCP.
I hope if you do eventually get worse days that they will be only for a fairly short time as mine were.

@biteme you were actually lucky to have a gall bladder problem since it revealed a much bigger problem. That’s wonderful that you are feeling healthy and being positive. If you can keep that attitude it will serve you well. Even my PCP commented on that with me, that I don’t let things defeat me. It does help a lot I think. It certainly makes your life better.
I hope the results of the CAT scan are not bad, and that you will share them.
JK

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

@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!

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

@biteme, I want to welcome you to Mayo Connect. I am happy that you have joined this discussion. Being diagnosed with a liver disease is a frightening experience. I imaging that being recently diagnosed that you are still in a learning phase and an adjustment phase.
I already see that you have received responses from @jeanne5009, @lisamb, and @joanaiken. I hope that you will read each of their posts because one thing you will soon learn it that each one of us has a different path and each one is an expert by their own experience.

@biteme, What would you like to ask? How can we help you?

Thanks ! There are NO stupid questions. I have survived and experienced 2 liver transplants, 2008 and 2010. Now on the waiting list for a kidney. My first transplant MELD score was 28. My second one was 40, with a bilirubin of 51. Yes, my skin was a very unusual shade of orange- yellow- gray. I am so happy to find Connect and exchange thoughts and experiences with other transplant recipients/ living donors. Everyone's experience is unique. And someone had previously stated that unless you have been on this journey, you really don't know. I also am open for questions and comments.

Hi! I am 3 years in and have a Meld of 8. That says a lot for the docs who got me on meds quickly. It is a long road and I may never get a transplant because of my low Meld and the fact that I am almost 70! YIKES! Did I just say that???. Nonetheless, I have had all kinds of issues but none that are making me lose total quality of life. A good disposition and a sense of humor go far.....
What kind of liver disease do you have?
I can tell you to study your disease and research it thoroughly. This group will be a lifesaver for you. Don't be afraid of the stories we tell...you will have one of your own. We are all here to support each other and help to find new methods of treatment. Ask all your silly questions because we all do...in search of peace of mind! It works!

I was diagnosed in August of 2019. I have a MELD. score of 7. I would enjoy hearing from anyone with advice.

I am a 20 month post liver transplant and want to offer support to anyone awaiting any sort of transplant. Until you are there, few can grasp the long road that is to be traveled. My journey started in February of 2017, was transplanted in June 2018 from a deceased donor. I would be honored to offer great hope to anyone that responds and share stories pre and post transplant. Be strong.. Somehow I messed this up, I am not Lissa, I am Dwight.

@stella25. I sincerely hope you find a donor. I think MELDs can be so misleading. I’ve known of very sick people who had fairly low MELDs. Mine was 28 when I received my transplant and about to have an increase.
I never looked for a living donor. My son and daughter both volunteered but I refused him because I felt it would be too much of a disruption to his career but I finally decided to let my daughter (she was a freelancer and could work from here) get tested and she was not able to be a candidate. Back then there were more concerns about donors so I wanted her to get tested just in case things got desperate. Thankfully I was called just in time.
JK