Liver transplant - Let's support each other

I agree. The stronger you are going into surgery, the stronger you will be coming out of it. Great advice! My son took in a lot of protein while he was on the transplant waitlist. Something like 100g per day. Protein shakes are a good way to get in that extra protein.

@kimestes I went back and read your previous posts and I want to say how sorry I am that you had to go through all you have been through. No child should have to go through that and for sure it would cause battle scars. I hope in time those scars will heal completely.

Your MELD is pretty low so I presume you will not yet be a candidate for transplant. In the meantime try to take the best possible care you can of yourself. It's great that you are now getting exercise. I always have hated exercise but I am forcing myself to do it these days. I am post-transplant 4+ years. I know I need to maintain a decent weight and I have gained since the pandemic began so I am exercising and trying hard to exercise some self-control over eating. I started exercising when I realized I would eventually be having major surgery. I knew that the better shape I was in, the better my recovery would be, and I had an amazing recovery. I wish the same for you if/when you eventually qualify for a transplant.

The exercise bike is a great exercise to start with, as is walking. Both are things that you can start at your own pace and gradually increase the effort and length of time. I really push myself when I take walks and am doing a bit over 3 miles an hour and generally walk just over a half mile. Not impressive for many people but it is for me, plus I am short so I need to take more steps! I have an activity monitor so I have goals set there and that spurs me on. I strive to meet my goals each day.

Other than fluid retention, what other symptoms are you experiencing from cirrhosis? I had lowering platelet counts, very shaky hands, and hepatic encephalopathy (HE) episodes, plus some other vague symptoms. The HE episodes were what brought my problem to a head.

I hope your appointment on the 28th goes well and that you will tell us how it went, and keep us abreast on how you are doing.
JK

@jerrynord, Yes, you have posted yesterday. The reason that you are not seeing it here (Liver Transplant Support Group) is because the post you are looking for is in the Covid-19 and Transplant Patient discussion group.
You did nothing wrong! In fact your comments are a prefect fit in both groups.
-I have a tip to share if you ever get lost - click on your @name (@jerrynord) and you can see your past replies. When you locate the one that you are looking for, just click on the reply, and you be there.

Jerry, would you consider re-posting your reply, "I had a liver transplant....if I notice anything." that you made 20 hours ago? It is going to be so helpful to other transplant patients. Go to https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/ and click the REPLY and post your message.
Let me know if you need help.

I posted in here yesterday but do not see it. I also posted on another subject and the same. Am I doing something wrong?

@jerrynord, when my husband was positive for Covid19, he was monitored by our health dept via daily phone calls. Are you being monitored for and symptoms or reactions?

I had a liver transplant in 2008. Been doing well every since. I have been asking my liver care team about the safety of liver transplant patients getting the Covid vaccine. Not much known on this as most studies are done on healthy people. My main concern was the vaccine may include an immune system booster which would defeat my Tacrolimus that suppresses rejection. Lately I have been also concerned about getting treatment if I get the virus.
Well on Dec 28th I was tested positive. My family doctor recommended I go to the hospital and take the antiviral treatment Bamlanivimab by intravenous. This is a non-approved drug for patients with mild symptoms but are "high risk".
So on Dec 29th I had this procedure done and am now at home quarantining for 10 days.
So far I am not any noticable reactions. I just wanted to let others know that as I am probably a guinnia pig, things seem to be going well and will post if I notice anything.

Thank you so much for your story and support. Thank you also for the web site. I will definitely check it out!!

@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/

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.

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.