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Liver transplant - Let's support each other

Transplants | Last Active: Jun 7 7:51pm | Replies (1594)

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@kimestes

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.

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Replies to "I can walk now, no assistance. Down 56 steps and back up. Not our of breath...."

@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/