Liver transplant - Let's support each other

@stella25 I'm so happy for you and your son that he has had his transplant. It's such a blessing and wonderful that he was home for the holidays and able to put that behind him.

You mention how calm and ready he was when he got the call. I was the same, it still amazes me that my husband and I drove the hour+ to Boston like it was just another day! It sounds as if his recovery was quick without problems, that is so wonderful. 2021 will be a great year, no longer having to think about the when and if of a transplant.

@paulapartyof1 That's wonderful that you want to be a live donor for your sister. She is blessed to have such a loving sister. I am not really familiar with the restrictions for living donors but if you both want that I hope her transplant center will allow it. It seems as if sometimes they prefer a deceased donor because they want the recipient to have a whole liver. I recall that when we first went to the hospital for a series of appointments with the different involved departments, my daughter told one of the doctors that she would like to be a living donor for me. She was told that they would consider it if needed but they preferred a whole liver for me. I have no idea why. I did end up with a deceased donor and everything has gone great. My transplant was at Mass General in Boston in September 2016.

@kimestes I hope you continue to do well and will not need to have more paracentesis done. I never needed that. It's amazing that you were having that, and that your weight is down so low, yet your MELD is only 6! Do you have other symptoms? Are all of the results from your workup in, or are there possibly some that are yet to be considered?
I wish the best for you. If you are not yet qualified to be a transplant candidate I hope you will feel well and are able to gain some more weight back. I know it's difficult to exercise at first but if you do you will feel stronger every day. I follow a couple of YouTube videos that cater to beginners and people over 50. They always emphasize to move at your own pace. Just push yourself a bit so that you will see improvements.
I hope too that you keep us up with how you are doing and if there are any changes. It really does seem odd that some people can be so sick but still have low MELD scores. I didn't feel very sick most of the time, my only real problem was HE episodes, but my MELD score started at around 11 I think but very quickly jumped to 18 and then got to 28 at which point I had my transplant.
JK

I had mine at Methodist UT in Memphis.

I went through a lot of the same trials you have. It started when the discovered Hep c when I had my gallbladder removed. The surgeon had me go to a gastroenterologist and a hematologist. I gave my self interferon injections and took ribivirin every day for a year. My viral load came down but my liver had stage 4 cirrosis. Now they have a pill you take for a month. I struggled as my liver was damaged. I struggled with various episodes of swelling, varicies in the throat and many times had my throat banded. During this time my meld score was 7. In 2019 I had such high ammonia levels that my wife had to take me to the ER. They discovered a tumor in my liver and went through several chemo treatments. My meld score would jump to 17 and then fall to 7. I had to take a nap every day at work just to make it through the day. I made a visit to a Dr. He said I needed a Transplant. In the state I live in it takes several years to get a transplant. He referred me to the Mayo Clinic in Phoenix. I went through several months of tests and hospital visits. Had sepsis. I finally made the list and I had to relocate to Phoenix. I too decided to accept a Hep c liver. I worked from out of the house until I received a call that I had a doner. We went to the hospital and had the transplant and now a year later I am doing great. Take courage. It might be a long journey but stay strong. I thank God everyday for my new liver and for guiding me to the Mayo Clinic. The Dr's there were wonderful.

@kimestes, are you saying that you were not able to walk for a while? What about now, can you walk assisted or independently?
What kind of exercise have the doctors suggested for you to regain your strength and muscles?
Congratulations on your weight gain!

Thank you. Gives me hope. It's so hard with covid-19 right now. I do what I can around the house, but lonely.

Hi. I don't know what stage I'm in. I suppose stage 4. My MELD score is 6, but I'm sure that it was much higher this summer. Was hospitalized at 79 lbs with acites. Had been having paracentesis every 10 days. About 4 liters each time. Then all of a sudden it stopped. It was suggested to me that I should talk with you. Thanks.

Yes. Weigh 93 lbs now! My Dr. is concerned with my lack of muscle mass, so they have me on a high protein diet. I'm exercising as much as I can, which is not a lot. I was very sick for months and not able to walk for a while, So I guess it will take some time to regain my strength. I never was big on exercise, but took care of my mother and father for 8 years. Required a lot of lifting and moving and balancing. That was about 15 years ago, though. I weighed 93 lbs then too, but had some muscle!

@khh @gphetteplace @kltchrmn @racing212 @jeanne5009 Here is a related discussion and blog post about MELD scores. Not sure if there is anything useful that you don't already know, but thought I'd mention them:

- It's not all about the MELD Score https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/
– The MELD Score: Definitions and Frequently Asked Questions https://connect.mayoclinic.org/page/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/

Thank you. As you may know, MS is not a place favorable to transplantation. I will go any where they want me to go if I can just get on a list. I am still young and have many more years I can offer to patient care (pathologist). I just need the chance. Even though I can hardly put one foot in front of the other, I continue to try to work. That’s what still matters to me is helping other patients as I can. KHH

I empathize with both of you. I was down to weekly paracenteses and monthly esophageal varices bandings, but my kidneys improved so my MELD score dropped to 12. I did not expected to get a transplant, yet here I am, 9 months post. First and foremost I had people all over the country praying for me. There were also several things in my favor. I live 10 minutes from the Phoenix Mayo, and the average MELD score is significantly lower here. Proximity is also a definite plus since the shelf life is so short. Consider multiple listings if your local hospital averages a higher MELD. Also I agreed to accept a liver from a donor with hepatitis C. It really is curable now, vs my liver disease, which was terminal. My donor didn’t have hep C, but did have meningitis. I was on extra IV antibiotics, but other than that it was fine. I wonder if they didn’t call the people above me on the list because they figured if they wouldn’t accept a hep C donor they wouldn’t accept this one. (I didn’t ask - I just counted my blessings). If your muscle mass is low your GFR will be artificially high. Do whatever you can to increase it and/or ask them to estimate it by cystatin. I wish you the best. I know how hard this is.