Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

@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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@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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@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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@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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@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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@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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they were giving them today at Mayo Clinic!

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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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@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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@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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