Liver transplant - Let's support each other

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!

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.

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

@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!

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.

I had mine at Methodist UT in Memphis.

@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 can walk now, no assistance. Down 56 steps and back up. Not our of breath. Can even get into my clawfoot tub and out now but myself. Just got back from another check up. Meld went up to 7. I guess that's not too bad. Dr worried about muscle loss and wanted me put on an NG tube immediately. I cried. She wrote inn her notes that I declined the NG tube and that would affect my efforts to get on a transplant list. I didn't decline. Just cried. Got that straightened out with the diatitian the next day. She just told me how many calories and how much protein I should eat a day to reach the goal. Did not recommend NG tube at this time. It was kind of funny, because she is about the same height as me and weighed 3 pounds more than I do. Very thin. So, since yesterday I've been trying to pack on the pounds! Ate over the amount of calories and reached and exceeded the protein goal.

Oh, about the exercise. I'm riding a stationary bike. Can only go for 0.5 miles now, but will work my way up. I can walk quite a distance, but haven't measured that yet. I think going up and down stairs is good exercise too.

@kimestes, I am impressed by your progress! I know from experience how difficult it is to eat and to get exercise while suffering with the misery of cirrhosis.

I had a feeding tube when I was flown to Mayo Rochester out of my local ICU. Don't remember when I got it. But I do remember the Doctor at Mayo asking me if I thought I would be able to eat if he removed it. (I had been in local ICU for a week with endstage liver failure and acute kidney failure and emergency dialysis) I was clueless, and after my husband helped me to understand what was going on, I nodded 'Yes' as my husband assured the doctor that I would eat. HaHaHa - funny now but not 10 years ago. Every time I tried to push aside one of the nutritional drinks, he reminded me that the feeding tube would have to go back in, so I learned make myself drink it.
And the tube was never discussed again. I am rooting for you! Any nausea? Talk to the doctors. They might be able to give you something or offer suggestions. Once when my local GI was urging me to maintain my weight, he said I could add a scoop of ice cream to make the nutrition drink into a better tasting shake 😉

Kimestes, To me it is evident that you are ready and willing to do what is required for a healthy body before transplant listing. Keep on doing what you are doing and be patient while your body gets caught up. Our bodies have to be strong enouth to support the physical stress and to heal from a transplant surgery.

I can see that you are proactive in learning about your liver and your health and possible transplant. Are you aware of the Transplant Pages on Connect? I want to share the link because it is where the transplant staff at Mayo routinely post articles and updates about all things related to organ transplant. You can click the blue link and scroll, read, even ask questions and add comments

Here is one that relates to your current situation: Frailty: What is it and how can it Affect Patients with Cirrhosis?
https://connect.mayoclinic.org/page/transplant/newsfeed-post/frailty-what-is-it-and-how-can-it-affect-patients-with-cirrhosis/

Mayo Transplant Pafes Newsfeed -
https://connect.mayoclinic.org/page/transplant/