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!

I honestly don't know

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@livertrex

I just had a liver transplant in August at the Mayo Clinic in Arizona everything went well it's taking a little longer to get back on my feet and I thought ,I guess I had great expectations I'll have the great expectations for you too so congratulations on your liver transplant and the doctor had me go ahead and get a dermatologist in my local community look at Maya dark spots all over my body and give me a plan to move forward with him to make sure that I wore sunscreen. Thank you

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@livertrex I am just seeing a dermatologist now. Some of my brown sun spots have turned cancerous and a biopsy has been taken on the largest one. I am waiting for results and am sure they will be removed in office. This has happened post transplant. I'm not sure if this relates to your conversation or not but thought I'd share anyway. I am now 9 months post transplant.

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I am 6 months post transplant and am scheduled to see a dermatologist next week. I use sunscreen regularly but not sure what to expect.

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@rodney9999

I am 6 months post transplant and am scheduled to see a dermatologist next week. I use sunscreen regularly but not sure what to expect.

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@rodney9999 Because organ recipients are on immunosupressants, there seems to be a higher incident of them developing skin cancer. A visit to the dermatologist will include a visual check by that person, to check for any signs of skin cancer. They will advise you to have a yearly or even semi-annual check. Congratulations on your successful transplant! How are you feeling these days?
Ginger

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@gingerw

@rodney9999 Because organ recipients are on immunosupressants, there seems to be a higher incident of them developing skin cancer. A visit to the dermatologist will include a visual check by that person, to check for any signs of skin cancer. They will advise you to have a yearly or even semi-annual check. Congratulations on your successful transplant! How are you feeling these days?
Ginger

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I have been doing well since transplant. Thanks for asking and thanks for the information.

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@gingerw

@rodney9999 Because organ recipients are on immunosupressants, there seems to be a higher incident of them developing skin cancer. A visit to the dermatologist will include a visual check by that person, to check for any signs of skin cancer. They will advise you to have a yearly or even semi-annual check. Congratulations on your successful transplant! How are you feeling these days?
Ginger

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@gingerw. I knew we were at higher risk but I read somewhere a number of months back that we are at 200% greater risk! My favorite way to avoid sunburn is avoidance. I hate the feeling of sunscreen.

MGH has a dermatologist who specializes in post-transplant patients so I see him.
JK

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Here is a relevant discussion in our group about sun protection started by @jolinda :
– Anyone have tips on sun protection? https://connect.mayoclinic.org/discussion/anyone-have-tips-on-sun-protection/

The discussion helped inform this useful blog post by the transplant team:
– Vacation Tips and Tricks for Transplant Patients https://connect.mayoclinic.org/page/transplant/newsfeed-post/vacation-tips-and-tricks-for-transplant-patients/

Is everybody getting their flu shot too?
– Flu Season: What You Can Do To Stay Healthy https://connect.mayoclinic.org/page/transplant/newsfeed-post/flu-season-what-you-can-do-to-stay-healthy/

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they were giving them today at Mayo Clinic!

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@jbilton

they were giving them today at Mayo Clinic!

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@jbilton, That is good news! And a good way to enter into the month of October.
My experience is that Mayo is extremely proactive about preventive care both before and after organ transplants. I have never been on a Mayo campus during the flu shot season, however when I am there, they do make sure that I am up to date on all immunizations and preventive screenings. My husband did not take the flu vaccine until my transplant team told him that he needed to get it for my protection.
I am curious – Did you go there just for the shot? or Did you get lucky with the timing of an appointment?

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@tayloryvette

Thanks and yes. I struggle with even wanting to eat sometimes. I only weigh 125. I lost another 3 lbs. this week. Thank you for the encouragement. so needed and appreciated. Congrats on your recovery! Gives me hope!

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@tayloryvette, I am concerned about how your body being affected by your liver disease. Have you made any progress with getting transferred to Mayo as you mentioned?

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@rosemarya

@tayloryvette, I am concerned about how your body being affected by your liver disease. Have you made any progress with getting transferred to Mayo as you mentioned?

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I missed my meds at 8am. It is a 11am. I wonder if I should still take
them?

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@jim1208

Yes maam I am staying overnight. Have to, Mayo is 140 miles from home. I get far to run down to drive that much. Yes I did the tour of The Gift of Life house.

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@jim1208 Hi, Jim. I like to check up on members in the transplant group. I would like to say that I hope that you are moving forward each day. Have you been to Mayo recently? How often do you have scheduled appointments?

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@livertrex

I missed my meds at 8am. It is a 11am. I wonder if I should still take
them?

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@livertrex
My transplant center gave me some guidelines, but even with those I have called my Mayo Pharmacist for instructions about what to do Why dont you call the transplant pharmacy,if you use one, ot your transplant center/nurse.
This happens to others, too. It has happened to me.
Let me know if this works.

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@rosemarya

@livertrex
My transplant center gave me some guidelines, but even with those I have called my Mayo Pharmacist for instructions about what to do Why dont you call the transplant pharmacy,if you use one, ot your transplant center/nurse.
This happens to others, too. It has happened to me.
Let me know if this works.

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Thanks, I called them waiting for a call back. But in the meantime I
looked up on the internet. And I determined that it's okay as long as I
don't take a double dose at one time. That applies to all the drugs I'm on.
Thanks very much

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It sounds like you are only 3 hrs late. The return call might suggest a small time adjustment-it not. I am certainly not qualified to make that decision for you.
Let me know what they say when they call.
I hope you enjoy the rest of your day.

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