Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

My transplant was April 24, 2016.
I currently have a big abdominal hernia which I am getting fixed in December. I currently am trying to lose weight for that sugary and also to lose weight over a period of 2 years. I am doing really well for the last 10 weeks. I hope to continue making progress.

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@christinelouise

My transplant was April 24, 2016.
I currently have a big abdominal hernia which I am getting fixed in December. I currently am trying to lose weight for that sugary and also to lose weight over a period of 2 years. I am doing really well for the last 10 weeks. I hope to continue making progress.

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@christinelouise I too lost weight before a liver transplant. What are you doing to lose? I used myfitnesspal, an activity tracker, and a digital scale to keep track of my weight daily on an Excel chart. I was very successful at losing the weight. So far, so good at keeping it off for the most part too. Right now I am pretty much at the same weight I was at transplant. Once I bought a whole new wardrobe I didn't want to gain it back.
Please feel free to ask any questions you may have, either within the forum or in a PM.
JK

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@christinelouise, Congratulations on your success over the past 10 weeks! And a belated Happy 2nd Transplant Anniversary!!

It sounds to me like you are off to a great start in preparation for your December hernia surgery.
I am constantly mindful of how easy it can be to gain weight after the transplant because in my situation (10 years ago) I had lost so much prior to transplant, that my post transplant instructions included eating to put my weight and regain my muscle mass. I try to eat as healthy as I can and to get enough exercise. So far, I am maintaining, and have minor ups and downs that I catch early.

Was your weight been an issue prior to transplant? Or has it happened since your transplant?

Here is an article that I want to share with you. Thank you for making me search for this! It is something I probably need to review often. In it you can see that weight control is common patient experiences for transplant recipients. It includes some on how to see the scale go down.
Weight Gain After Transplant: Where Does it Come From and How to Get Rid of It
https://connect.mayoclinic.org/page/transplant/newsfeed-post/weight-gain-after-transplant-where-does-it-come-from-and-how-to-get-rid-of-it-2/

You are not alone. I look forward to hearing from you.

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@rosemarya

@christinelouise, Congratulations on your success over the past 10 weeks! And a belated Happy 2nd Transplant Anniversary!!

It sounds to me like you are off to a great start in preparation for your December hernia surgery.
I am constantly mindful of how easy it can be to gain weight after the transplant because in my situation (10 years ago) I had lost so much prior to transplant, that my post transplant instructions included eating to put my weight and regain my muscle mass. I try to eat as healthy as I can and to get enough exercise. So far, I am maintaining, and have minor ups and downs that I catch early.

Was your weight been an issue prior to transplant? Or has it happened since your transplant?

Here is an article that I want to share with you. Thank you for making me search for this! It is something I probably need to review often. In it you can see that weight control is common patient experiences for transplant recipients. It includes some on how to see the scale go down.
Weight Gain After Transplant: Where Does it Come From and How to Get Rid of It
https://connect.mayoclinic.org/page/transplant/newsfeed-post/weight-gain-after-transplant-where-does-it-come-from-and-how-to-get-rid-of-it-2/

You are not alone. I look forward to hearing from you.

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I've had weight loss issues most of my adult life.

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@rodney9999

Sorry…forgot to mention..valcyte for Hep C along with viread.

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@rodney9999, did you get Hep C post transplant or are you taking the medications as a precaution?

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No….I did not get it….my doctors have me on medication as a precaution. In my situation I was doing well right out of the gate. I am now about 2.5 months post op.

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@christinelouise

I've had weight loss issues most of my adult life.

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@christinelouise, I would like to invite you to join some of us who participate in a Healthy Living Discussion : Staying Motivated for the Long Haul. It is a long discussion and you will see very quickly that you are not alone with weight struggles. https://connect.mayoclinic.org/discussion/staying-motivated-for-the-long-haul/?pg=31#chv4-comment-stream-header

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My husband had terrible cramps during the night. We put a heating pad for relief. His diruetics have been increased due to pleural effusion, so I suspect that had something to do with the cause. His fluid intake has been limited to 200 ml daily. Does anyone have suggestions?

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Pre-transplant I took magnesium for leg and arm cramps. Locally I used arnica gell by the tube. I found a steaming hot shower helped.

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@twocatmama

My husband had terrible cramps during the night. We put a heating pad for relief. His diruetics have been increased due to pleural effusion, so I suspect that had something to do with the cause. His fluid intake has been limited to 200 ml daily. Does anyone have suggestions?

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@twocatmama I know that diuretics can cause cramps due to dehydration. Have you spoken to his doctor about this? They may have some suggestions.
Are his cramps in his body or in his legs? I had excruciating cramps in my thighs some nights. Fortunately, they were not frequent but when I had them they were unbearable. After a while I was able to tolerate them because I knew they would get better in about 15 minutes or so, so I just held on. I also had cramps in my hands. They were more frequent but not as bad.
JK

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Thank you. We’ll need to get permission for the magnesium, but can try the topical and warm water.

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He also has hand cramps more frequently than leg cramps. 15 minutes is about right, but it is a tough 15 minutes.

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@twocatmama

He also has hand cramps more frequently than leg cramps. 15 minutes is about right, but it is a tough 15 minutes.

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Prior to kidney transplant I had the same type of cramping you've described. I would wake up with excruciating cramps in my calves or feet, just terrible! The next day my legs would ache like they were bruised. I tried eating more bananas to get my potassium up but never had great results. Sorry to hear it's happening. If you find a solution please share it with the whole community.

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@jolinda

Prior to kidney transplant I had the same type of cramping you've described. I would wake up with excruciating cramps in my calves or feet, just terrible! The next day my legs would ache like they were bruised. I tried eating more bananas to get my potassium up but never had great results. Sorry to hear it's happening. If you find a solution please share it with the whole community.

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Prior to my liver transplant I also had severe cramping in my hands, feet and legs. I also tried the banana route with no results. I was also told to drink tonic water but that didn't work either. If you do find a solution there are many who would appreciate your findings.

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@twocatmama

He also has hand cramps more frequently than leg cramps. 15 minutes is about right, but it is a tough 15 minutes.

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I also had my worst cramping in my hands. I couldn't hold cutlery or even a pen. It was really debilitating.

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