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!

@sue6175

I had a liver transplant 9/2013 at Mayo. Would be willing to share my experiences with others. I am doing well presently and working as an RN part time.

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@sue6175, I add my welcome and encourage you to tell your story here:
– Organ Donation and Transplant: What is Your story? https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

What challenges did you experience with post-transplant meds and how did you overcome the problems you experienced? And how's your husband doing LOL?

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@kimestes

I just got a message this morning that my meld score is not high enough. If course they want me to quit smoking and gain more weight and muscle mass. Smoking is going to be the worst to quit by far!

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@kimestes, I just want to drop in and let you know that I am thinking about you. I don't remember if you have any follow up appointments, but I know that life can be complicated and worrisome when living with a liver condition.

When you get a free moment, would you drop in and let me know how you are doing with your effort to add additional weight and to increase your muscle mass? What is something that is helping you to maintain your effort to do this?

Liked by stella25

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@athenalee, I would like to congratulate you on your recent liver transplant. I want to invite you to meet other liver transplant recipients in this liver support group.

Liked by stella25, athenalee

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@rosemarya

@athenalee, I would like to congratulate you on your recent liver transplant. I want to invite you to meet other liver transplant recipients in this liver support group.

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I would like to become acquainted with other liver transplant patients also. Had mine in 2013.

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@sue6175

I would like to become acquainted with other liver transplant patients also. Had mine in 2013.

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I'm going to Rochester Mayo super bowl Sunday for 3 days of tests

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@racing212

I'm going to Rochester Mayo super bowl Sunday for 3 days of tests

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It will be busy….you will be amazed and will learn a lot!

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I go there every 6 months for follow ups. I'm in stage 4 liver disease and have a tumor on one of my kidneys

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@rosemarya

@athenalee, I would like to congratulate you on your recent liver transplant. I want to invite you to meet other liver transplant recipients in this liver support group.

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@athenalee, I would like to congratulate you too on your recent liver transplant. I had my liver transplant in Dec of 2019 here in Jacksonville. Where did you have yours?

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@tjgisewhite

@athenalee, I would like to congratulate you too on your recent liver transplant. I had my liver transplant in Dec of 2019 here in Jacksonville. Where did you have yours?

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I had mine at Lahey Hospital and Medical Center. Their team approach is excellent. I was in the hospital for a month and a week due to a reaction to prednisone and had to be sent home on a dreadful feeding tube to get more protein in me.

How is your recovery going? Are you home and able to get around some? Take your drugs as directed! I’ve done lots of research on when and how to take the anti rejection meds and what other meds and herbs, such as echinacea, interfere with the metabolism of our anti rejection meds. Until my disease I had only taken natural supplements and homeopathics, So, it’s been a tough adjustment!

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@sue6175

I would like to become acquainted with other liver transplant patients also. Had mine in 2013.

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My son had his transplant 11/22/20. He's doing fantastic. Plans to return to work in 2 weeks.

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@stella25

My son had his transplant 11/22/20. He's doing fantastic. Plans to return to work in 2 weeks.

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@stella25, Awesome that he is ready and able to return to work! Have his co-workers seen him since his transplant? I would bet that he is a changed man with his new liver.
Will he have to be around people? In addition to the current Covis-19 safety precautions, will he be making any other physical adjustments to his work place such as his own physical limitations? Will he be able to work a regular schedule or will he be on reduced hours due to possible energy level?
This is exciting!

Liked by stella25

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@athenalee

I had mine at Lahey Hospital and Medical Center. Their team approach is excellent. I was in the hospital for a month and a week due to a reaction to prednisone and had to be sent home on a dreadful feeding tube to get more protein in me.

How is your recovery going? Are you home and able to get around some? Take your drugs as directed! I’ve done lots of research on when and how to take the anti rejection meds and what other meds and herbs, such as echinacea, interfere with the metabolism of our anti rejection meds. Until my disease I had only taken natural supplements and homeopathics, So, it’s been a tough adjustment!

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@athenalee, You are absolutely correct! Take medications as directed. As an experienced 11 year recipient, I might add: Always check with your doctor before introducing any over-the-counter meds, supplements (natural or otherwise), or vitamins. Research is good as long as you use reputable sources. Be wary of sales promotions that claim to be reliable research.

In addition to taking immunosuppressant meds according to directions, it is extremely important to be aware of some of the side effects that can occur. Did you know that certain common foods can interact with immunosuppressant meds?
Here is an article from the Mayo Clinic staff where you can read more – Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/page/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/

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@rosemarya

@stella25, Awesome that he is ready and able to return to work! Have his co-workers seen him since his transplant? I would bet that he is a changed man with his new liver.
Will he have to be around people? In addition to the current Covis-19 safety precautions, will he be making any other physical adjustments to his work place such as his own physical limitations? Will he be able to work a regular schedule or will he be on reduced hours due to possible energy level?
This is exciting!

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@rosemarya OMG he looked like a boy when he went into the hospital. He was so thin & yellow, just a shadow of himself. Today he looks like the man he was meant to be!! Some of his coworkers had a surprise social-distance gathering for him in their office parking lot just after Christmas. They had a big basket of gifts for him (blanket, socks, sweatshirt, cocoa, popcorn, etc.). It was so sweet of them. They even had gifts for me & my husband just for taking good care of Dan:-) We have been humbled by the kindness of people. Dan works for a company that manufactures medical equipment. They are currently producing Covid-19 testing kits. It's already a sterile environment so that's a huge plus. He is a quality manager so he will be able to do much of his work at a desk for as long as necessary. It's a good company that he has been with for almost 10 years & is well liked & appreciated. They were super accommodating during his struggles with PSC. I have no doubt they will allow him to ease back into his work schedule. It is exciting! I know he is anxious to get outdoors & do some hiking. Hopefully soon:-)

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@rosemarya

@athenalee, You are absolutely correct! Take medications as directed. As an experienced 11 year recipient, I might add: Always check with your doctor before introducing any over-the-counter meds, supplements (natural or otherwise), or vitamins. Research is good as long as you use reputable sources. Be wary of sales promotions that claim to be reliable research.

In addition to taking immunosuppressant meds according to directions, it is extremely important to be aware of some of the side effects that can occur. Did you know that certain common foods can interact with immunosuppressant meds?
Here is an article from the Mayo Clinic staff where you can read more – Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/page/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/

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Yes, thank you. I’ve spend a lot of time reading medical journal articles so that I can best keep myself healthy. I’ve found it useful to at least have enough knowledge to know the questions to ask my providers. I was shocked and fascinated by all the research out there about food, herbs, herbal supplements, etc. that interfere with our medications and the mechanisms by which they interfere.

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@athenalee

Yes, thank you. I’ve spend a lot of time reading medical journal articles so that I can best keep myself healthy. I’ve found it useful to at least have enough knowledge to know the questions to ask my providers. I was shocked and fascinated by all the research out there about food, herbs, herbal supplements, etc. that interfere with our medications and the mechanisms by which they interfere.

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@athenalee,
Knowledge and self advocacy can't be beat!
I'm curious about how and when you developed this healthy habit. Have you always been this way, or was your liver/pre-transplant condition the reason for your interest?

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