Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

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

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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.

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@jerrynord

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.

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@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?

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

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@jerrynord

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

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@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.

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@kimestes

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.

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@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

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@contentandwell

@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

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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.

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@paulapartyof1

Hi I’m Paula 62 just found out a week ago my sister 57 needs a liver transplant,I want to donate part of my liver I’ve researched and feel Mayo Clinic is her best chance of survival.I’ve spoke to several staff and filled out forms,I’m trying to educate myself on as much information as possible,feeling overwhelmed and need advice if you think you can help please let me know ty

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@paulapartyof1, I want to drop in for a minute. Have you heard anything about the possibility of being a donor for your sister?

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@stella25, How is your son doing?
Does he know that he is special to me because of our PSC connection? Has he, or have you met anyone else with PSC during his transplant journey?

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@rosemarya Thank you for inquiring about my son, Dan!! Actually, the spouse of a coworker to my husband had PBC & underwent transplant. I know the 2 diseases are different but the couple took Dan under their wings & helped us prepare for transplant as the husband was transplanted at the same center as Dan. We consider them family:-) We call Dan our MiracleMan. He feels good & looks great! His recovery has been beyond amazing. He is doing everything on his own. He has been staying with us for the past 6 weeks as we are his caregivers. He has gotten the ok from his transplant team to return to his own place this weekend. I'll be a bit sad when he leaves but I am so HAPPY he will be able to resume his life. I'm not going anywhere as I will continue to participate in this support group. This group has been a blessing to me & my family. Hopefully I can offer some insight to those in need. God bless!!!

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