Hi @marniek and welcome to Mayo Clinic Connect. I am sorry to hear that you are having issues after your transplant. You will see that I moved your post to a discussion talking to New post liver patients. I did this so you can connect with others like @2011panc.
What has your surgeon said that you need to do? Did they give you after care for protein and such?
I may have posted before, but this May I am 11 years post transplant. I had several conditions before transplant. A hospital in Minneapolis dropped me during a blizzard on concrete covered ice and broke my T12 vertebra. Surgery was not an option. Many weeks at Mayo Rochester. After brace was removed I broke the ball in my hip. The surgery for that was much more dangerous then the liver transplant surgery 50/50. After another long stay home again. Finally the transplant surgery with hip stitches running up my side. It took a much longer stay that usual as my muscles had atrophied and I must have been terrified of falling. I was not the ideal patient. I can not thank Mayo Rochester enough for saving my life. It took a while to get any strength back, but I worked hard at accomplishing that. Every checkup for the last 10 years has been excellent. I look forward every year to going back, knowing how excellent the staff is.
My transplant was June 2021. I received the transplant rather quickly and don’t remember much till about a week after. I had NASH. Prior to surgery I had veracies (always spell that wrong) several times admitted to the hospital. The last time was bad lots of blood but the local hospital would not touch me, after a week of waiting I was transferred. My new liver is working good but I am having issues with protein, fluid and my red blood cells. Recently my fluid was so bad I hand chronic heart failure it was overworking my heart and a valve was not closing. So I had to reduce one of the medications sirolimous and go back on lacesicks and increase the tacorlimous. After 2 1/2 weeks I was released less 52 lbs. Now I am skin and bones and still have more fluid although I feel much better and still on oxygen but not as much.I guess my question is anyone else have these problems 8 months post surgery. I also have a round bump on my right side in my abdomen they tell me it is blood but it is dry and my body will absorb it, it is about 3”w x 2”l and on the surface that I can tell 1 1/2” deep. Only bothers me off and on.
Hi, @marniek Welcome to Connect!
I too am post-transplant, my transplant was in September of 2016. I wish I could say more to help you but I didn't have any of the issues that you are experiencing. I am on sirolimus, tacrolimus was causing my creatinine to be higher than optimal. That is the only post-transplant medication I now take. I was taking prednisone but that was discontinued last year.
It's good that your local hospital transferred you to your transplant center. My local hospital was pretty useless when I had issues prior to transplant. Why did it take a week to transfer you?
When I have my bi-monthly lab work done my protein level is never quite up to the range but it's not far below and my team has never considered it to be a problem. I retained a lot of fluid in the last month prior to my transplant but that all gradually came off in the two or three months following my transplant.
I hope your doctors are able to figure out what is causing your problems and resolve them. Please let us know how you are doing.
JK
My transplant was June 2021. I received the transplant rather quickly and don’t remember much till about a week after. I had NASH. Prior to surgery I had veracies (always spell that wrong) several times admitted to the hospital. The last time was bad lots of blood but the local hospital would not touch me, after a week of waiting I was transferred. My new liver is working good but I am having issues with protein, fluid and my red blood cells. Recently my fluid was so bad I hand chronic heart failure it was overworking my heart and a valve was not closing. So I had to reduce one of the medications sirolimous and go back on lacesicks and increase the tacorlimous. After 2 1/2 weeks I was released less 52 lbs. Now I am skin and bones and still have more fluid although I feel much better and still on oxygen but not as much.I guess my question is anyone else have these problems 8 months post surgery. I also have a round bump on my right side in my abdomen they tell me it is blood but it is dry and my body will absorb it, it is about 3”w x 2”l and on the surface that I can tell 1 1/2” deep. Only bothers me off and on.
Hello @marniek, I am very sorry about your ongoing issues. I had my liver transplant in August 2020. I was in the hospital for a month and a week due to several issues, one of which was very low protein and lack of appetite. I was released with a feeding tube. Upon release I started drinking several Orgain protein drinks a day. I’m mostly a vegetarian, so this helped me get the necessary protein. I also struggled with weight, my normal weight, pre-ascites, was 125 (I’m 5.5). I was down to 102 following my release. I’m now at 107. My protein is fine though. I did have a lot of fluid drainage issues as well, but it was under control by the time I left the hospital.
What do your doctors say about your issues? As patients, we all have different experiences. But I’ve always found that my team has been supportive and have the answers.
I may have posted before, but this May I am 11 years post transplant. I had several conditions before transplant. A hospital in Minneapolis dropped me during a blizzard on concrete covered ice and broke my T12 vertebra. Surgery was not an option. Many weeks at Mayo Rochester. After brace was removed I broke the ball in my hip. The surgery for that was much more dangerous then the liver transplant surgery 50/50. After another long stay home again. Finally the transplant surgery with hip stitches running up my side. It took a much longer stay that usual as my muscles had atrophied and I must have been terrified of falling. I was not the ideal patient. I can not thank Mayo Rochester enough for saving my life. It took a while to get any strength back, but I worked hard at accomplishing that. Every checkup for the last 10 years has been excellent. I look forward every year to going back, knowing how excellent the staff is.
Karen, I've heard this from several Mayo transplant recipients that they look forward to their annual visits back to the "mothership" to be "mayo-naised" to quote @loribmt. @rosemarya was wise enough to choose a spring date for her annual trip to Minnesota.
What is your favorite thing to do for fun when in Rochester?
Gastric by pass after liver transplant, how is that going for you? I’m trying to make up my mind. Would appreciate some thoughts or guidance on the subject Thanks for your time !
Gastric by pass after liver transplant, how is that going for you? I’m trying to make up my mind. Would appreciate some thoughts or guidance on the subject Thanks for your time !
@liver2007, Welcome to Mayo Connect. You are looking to meet transplant recipients who have had a gastric bypass after their liver transplant. Have you already received a transplant?
I didn't know much about a gastric bypass, so I had to look up some information. A Gastric bypass is a type of weight-loss surgery that involves creating a small pouch from the stomach and connecting the newly created pouch directly to the small intestine. After the bypass. swallowed food will bypass most of your stomach and the first section of your small intestine. Gastric bypass is done when diet and exercise haven't worked or when you have serious health problems because of your weight.
It is not unusual for liver transplant recipients to gain weight after transplant. Is your weight concern related to the post transplant weight gain, or is it a bigger issue and health concern for you? Has this procedure been suggested by your transplant team?
Had my transplant over 14 years ago. I just keep gaining weight and I’m very uncomfortable. Liver Dr suggested that I look into having a gastric bypass to help with some of the current issues I’m having. Most people think it works great. I’m just nervous about it and all the restrictions.
Had my transplant over 14 years ago. I just keep gaining weight and I’m very uncomfortable. Liver Dr suggested that I look into having a gastric bypass to help with some of the current issues I’m having. Most people think it works great. I’m just nervous about it and all the restrictions.
@liver2007, I have not seen anyone post on Connect about gastric bypass after their transplant. I am aware that Mayo Clinic has a program where they perform both at the same time. That is why I asked whether you had already received a transplant.
I am going to wait and hope that someone has an experience to share with you. In the meantime, please discuss this procedure with your transplant team. They are the ones who know your medical history and possible transplant related response. They should be able to talk to you about the pros and cons for you.
Liver2007, Are your current issues related to weight gain? Have you consulted with your transplant team or requested a nutritionist or dietician who can provide some guidance?
When do you see your liver team again?
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Hi @marniek and welcome to Mayo Clinic Connect. I am sorry to hear that you are having issues after your transplant. You will see that I moved your post to a discussion talking to New post liver patients. I did this so you can connect with others like @2011panc.
What has your surgeon said that you need to do? Did they give you after care for protein and such?
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Helpful -
Hug
2 ReactionsHI, I am a post liver transplant patient. I got the surgery in 2008. Welcome
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4 ReactionsI may have posted before, but this May I am 11 years post transplant. I had several conditions before transplant. A hospital in Minneapolis dropped me during a blizzard on concrete covered ice and broke my T12 vertebra. Surgery was not an option. Many weeks at Mayo Rochester. After brace was removed I broke the ball in my hip. The surgery for that was much more dangerous then the liver transplant surgery 50/50. After another long stay home again. Finally the transplant surgery with hip stitches running up my side. It took a much longer stay that usual as my muscles had atrophied and I must have been terrified of falling. I was not the ideal patient. I can not thank Mayo Rochester enough for saving my life. It took a while to get any strength back, but I worked hard at accomplishing that. Every checkup for the last 10 years has been excellent. I look forward every year to going back, knowing how excellent the staff is.
-
Like -
Helpful -
Hug
6 ReactionsHi, @marniek Welcome to Connect!
I too am post-transplant, my transplant was in September of 2016. I wish I could say more to help you but I didn't have any of the issues that you are experiencing. I am on sirolimus, tacrolimus was causing my creatinine to be higher than optimal. That is the only post-transplant medication I now take. I was taking prednisone but that was discontinued last year.
It's good that your local hospital transferred you to your transplant center. My local hospital was pretty useless when I had issues prior to transplant. Why did it take a week to transfer you?
When I have my bi-monthly lab work done my protein level is never quite up to the range but it's not far below and my team has never considered it to be a problem. I retained a lot of fluid in the last month prior to my transplant but that all gradually came off in the two or three months following my transplant.
I hope your doctors are able to figure out what is causing your problems and resolve them. Please let us know how you are doing.
JK
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Like -
Helpful -
Hug
5 ReactionsHello @marniek, I am very sorry about your ongoing issues. I had my liver transplant in August 2020. I was in the hospital for a month and a week due to several issues, one of which was very low protein and lack of appetite. I was released with a feeding tube. Upon release I started drinking several Orgain protein drinks a day. I’m mostly a vegetarian, so this helped me get the necessary protein. I also struggled with weight, my normal weight, pre-ascites, was 125 (I’m 5.5). I was down to 102 following my release. I’m now at 107. My protein is fine though. I did have a lot of fluid drainage issues as well, but it was under control by the time I left the hospital.
What do your doctors say about your issues? As patients, we all have different experiences. But I’ve always found that my team has been supportive and have the answers.
-
Like -
Helpful -
Hug
4 ReactionsKaren, I've heard this from several Mayo transplant recipients that they look forward to their annual visits back to the "mothership" to be "mayo-naised" to quote @loribmt. @rosemarya was wise enough to choose a spring date for her annual trip to Minnesota.
What is your favorite thing to do for fun when in Rochester?
-
Like -
Helpful -
Hug
3 ReactionsGastric by pass after liver transplant, how is that going for you? I’m trying to make up my mind. Would appreciate some thoughts or guidance on the subject Thanks for your time !
-
Like -
Helpful -
Hug
1 Reaction@liver2007, Welcome to Mayo Connect. You are looking to meet transplant recipients who have had a gastric bypass after their liver transplant. Have you already received a transplant?
I didn't know much about a gastric bypass, so I had to look up some information. A Gastric bypass is a type of weight-loss surgery that involves creating a small pouch from the stomach and connecting the newly created pouch directly to the small intestine. After the bypass. swallowed food will bypass most of your stomach and the first section of your small intestine. Gastric bypass is done when diet and exercise haven't worked or when you have serious health problems because of your weight.
It is not unusual for liver transplant recipients to gain weight after transplant. Is your weight concern related to the post transplant weight gain, or is it a bigger issue and health concern for you? Has this procedure been suggested by your transplant team?
-
Like -
Helpful -
Hug
2 ReactionsHad my transplant over 14 years ago. I just keep gaining weight and I’m very uncomfortable. Liver Dr suggested that I look into having a gastric bypass to help with some of the current issues I’m having. Most people think it works great. I’m just nervous about it and all the restrictions.
-
Like -
Helpful -
Hug
1 Reaction@liver2007, I have not seen anyone post on Connect about gastric bypass after their transplant. I am aware that Mayo Clinic has a program where they perform both at the same time. That is why I asked whether you had already received a transplant.
I am going to wait and hope that someone has an experience to share with you. In the meantime, please discuss this procedure with your transplant team. They are the ones who know your medical history and possible transplant related response. They should be able to talk to you about the pros and cons for you.
Liver2007, Are your current issues related to weight gain? Have you consulted with your transplant team or requested a nutritionist or dietician who can provide some guidance?
When do you see your liver team again?