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!

@rosemarya

@racing212, It is good to hear that you are being monitored for this while it is a 'could be' tumor. My Mayo experience is that they will keep a close watch on it for you. I know that this is not a comfortable position to be in. I was believed to have cancer tumors in my bile ducts and my local transplant hospital was unable to get tissue samples so they had to inactivate me from the transplant list until they could get me to the Mayo team in Rochester for the tests. I did not have cancer and was able to be activated again. Rodney, I will be thinking of you during this time.
When you return in December, do you know what kind of tests they will do?
With an increased score, have your symptoms changed any?

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I go back for another ct scan blood work and an ultra sound….

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@racing212

Im on the list for liver transplant…went to Rochester last week for more tests and found out there's 3 spots that could turn into a tumor. My meld score also went up from 3 months ago. I go back in December for more tests….. Chuck

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@racing212 When you go back for more tests will they determine if the “spots” are benign or malignant? I had malignant lesions and they did an ablation to get rid of them. That was more than a year before my transplant which occurred in September 2016.
JK

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@contentandwell

@racing212 When you go back for more tests will they determine if the “spots” are benign or malignant? I had malignant lesions and they did an ablation to get rid of them. That was more than a year before my transplant which occurred in September 2016.
JK

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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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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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