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!

@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.

Jump to this post

I too suffered from tremendous cramps both before and after kidney transplant. 25 days after my transplant I had to be taken over to the Mayp Phx ER for crippling cramps moving all over my body. I was told low magnesium level was the problem and could not tolerate it on its own and advised by a transplant team member to try over the counter SloMag which, taken daily, has solved the problem for 5+ years now.

E82E9E86-881F-49BA-9A68-F3BF5617B06E

REPLY

Thank you.

REPLY

Sorry, folks. That should be 2000ml daily.

REPLY
@tr1pol1sue

I too suffered from tremendous cramps both before and after kidney transplant. 25 days after my transplant I had to be taken over to the Mayp Phx ER for crippling cramps moving all over my body. I was told low magnesium level was the problem and could not tolerate it on its own and advised by a transplant team member to try over the counter SloMag which, taken daily, has solved the problem for 5+ years now.

Jump to this post

Hi, @tr1pol1sue and welcome to Connect.
It sounds as those of you who were waiting for kidney transplants had cramps in common with those of is with liver problems waiting for transplants.
I took a very large dose of magnesium two times a day but the cramps persisted. I will never forget how bad the ones in my thighs were. I drank tonic water with quinine when I got cramps but I’m not sure if that helped or not. I continued to drink it because I figured it wouldn’t hurt, and I was afraid that if I didn’t the cramps might last longer.
JK

REPLY

I had very bad whole body cramps. The only thing that would help is jumping in a scalding/very hot shower some times clothed. Get in bed and elevate my legs with pillows a position myself in away not to cause the cramp reaction. I had lots of pillows. That intense pain was the worst part of the whole illness.

REPLY
@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.

Jump to this post

I am a. Heart transplant but do get those cramps occasionally. Usually for me just walking releives the cramp. And the soreness goes away once im up moving around

REPLY
@tr1pol1sue

I too suffered from tremendous cramps both before and after kidney transplant. 25 days after my transplant I had to be taken over to the Mayp Phx ER for crippling cramps moving all over my body. I was told low magnesium level was the problem and could not tolerate it on its own and advised by a transplant team member to try over the counter SloMag which, taken daily, has solved the problem for 5+ years now.

Jump to this post

@tr1pol1sue, Welcome to Connect. I am happy to meet you. I have a liver and kidney transplant and I have not had the intense cramping that is being discussed here. How long ago did you get your kidney transplant? Do you still take the SloMag?

REPLY
@gaylea1

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.

Jump to this post

This may sound a little off the wall but I used to relieve my cramps with pickle juice before my transplant. Now 3 years after my transplant I’ll cramp up if I don’t drink enough water over the course of the day so I keep kiwi fruit to eat instead of the bananas.

REPLY

Did you drink pickle juice or rub it on the cramp?

REPLY
@twocatmama

Did you drink pickle juice or rub it on the cramp?

Jump to this post

Drank it. I can only assume that it was the sodium that helped alleviate the intense counter grabbing pain. My family doctor told me that I was not drinking enough water. It was at Rochester during transplant orientation that I finally learned that muscle cramping was one of the symptoms of liver failure along with fatigue. Both of which I was experiencing at the time but could not pinpoint a cause when dealing with the family practitioner.

REPLY
@des46893

Drank it. I can only assume that it was the sodium that helped alleviate the intense counter grabbing pain. My family doctor told me that I was not drinking enough water. It was at Rochester during transplant orientation that I finally learned that muscle cramping was one of the symptoms of liver failure along with fatigue. Both of which I was experiencing at the time but could not pinpoint a cause when dealing with the family practitioner.

Jump to this post

In the months before my liver transplant I experienced leg and foot cramps mostly at night. The was nothing I could do to stop them. I contacted my Mayo Jacksonville RN and she recommended Hyland’s Leg Cramps over the counter medicine. It worked really well. There is a PM version too. I used both versions. I always contacted her before taking any new otc meds and continue to do so with my Nurse Coordinator post-transplant. I have not had cramps since my transplant in February 2019.

REPLY
@tr1pol1sue

I too suffered from tremendous cramps both before and after kidney transplant. 25 days after my transplant I had to be taken over to the Mayp Phx ER for crippling cramps moving all over my body. I was told low magnesium level was the problem and could not tolerate it on its own and advised by a transplant team member to try over the counter SloMag which, taken daily, has solved the problem for 5+ years now.

Jump to this post

@tr1pol1sue, I'd like to add my welcome. We look forward to hearing more from you. I notice that you posted a lovely picture of yourself to your message. I encourage you to add it to your profile. Here are instructions about updating your profile on Connect.

– How to Update Your Profile https://connect.mayoclinic.org/page/about-connect/newsfeed-post/how-to-update-your-profile/

REPLY

I am a year and half into waiting for transplant. MELD is stable at 15 to 17. I am on long term disability. Worst issues are with fatigue and lightheadedness and foggy. Anyone relate? Thanks.

REPLY
@jim1208

I am a year and half into waiting for transplant. MELD is stable at 15 to 17. I am on long term disability. Worst issues are with fatigue and lightheadedness and foggy. Anyone relate? Thanks.

Jump to this post

Yes I can relate. I was light headed and dizzy most of the time but several other symptoms were a lot worse. My MELD was 34 when i was 16 months on wait list. I received my liver 17 months in from being on the wait list. I was very ill the year prior to diagnosis. My transplant was Nov 28 2018. I'm still light headed but thank goodness the worst symptoms are all gone.

REPLY
@gaylea1

Yes I can relate. I was light headed and dizzy most of the time but several other symptoms were a lot worse. My MELD was 34 when i was 16 months on wait list. I received my liver 17 months in from being on the wait list. I was very ill the year prior to diagnosis. My transplant was Nov 28 2018. I'm still light headed but thank goodness the worst symptoms are all gone.

Jump to this post

Just seems like its never gonna get worse or better. Frustrating

REPLY
Please login or register to post a reply.