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Mentor

This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

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

hello1234 | @hello1234 | 3 days ago
In reply to @redlady65 "I had a liver transplant 9/2022 When I had my first dermatology appt in April 2024..." + (show)
@redlady65

I had a liver transplant 9/2022
When I had my first dermatology appt in April 2024 I was surprised to have 4 surgical removal squamous cell spots~ 2 Mohs and 2 deeper w/stiches. My next appt they found Basil Cell in 2 areas (That had surfaced in 4 months) treated with a chemo cream. And four months later, I now have invasive squamous cell on my back requiring deeper Mohs surgery. Has anyone else had this experience? I see Johns Hopkins medical staff for all my medical follow up appointments post transplant.

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Hi @redlady65 😊
It's very nice to meet you! Congrats on your liver transplant. I am a kidney transplant patient with lots of squamous cell on my face and head. I had four MOHS surgeries on my face and recently a scalp surgery. I take Envarsus XR and Cellcept. Which immune suppression meds do you take?

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1 reply
redlady65 | @redlady65 | 3 days ago
In reply to @hello1234 "Hi @redlady65 😊 It's very nice to meet you! Congrats on your liver transplant. I am..." + (show)
@hello1234

Hi @redlady65 😊
It's very nice to meet you! Congrats on your liver transplant. I am a kidney transplant patient with lots of squamous cell on my face and head. I had four MOHS surgeries on my face and recently a scalp surgery. I take Envarsus XR and Cellcept. Which immune suppression meds do you take?

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Hi- I’m on Tacro. Wondering if I should check with my transplant Dr about switching my medication? My skin is having things pop up pretty quickly so I’ll be having my third surgery in 10 months.

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1 reply
hello1234 | @hello1234 | 2 days ago
In reply to @redlady65 "Hi- I’m on Tacro. Wondering if I should check with my transplant Dr about switching my..." + (show)
@redlady65

Hi- I’m on Tacro. Wondering if I should check with my transplant Dr about switching my medication? My skin is having things pop up pretty quickly so I’ll be having my third surgery in 10 months.

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Hi @redlady65 😊
Does your dermatologist have experience managing transplant patients? My dermatologist recommended that I stay with the gold standard immune suppression meds and not adjust meds with my current situation. He put me on a weekly maintenance regimen of Fluorouracil solution (chemo solution) once a week on my scalp. Have you used Efudex, Fluorouracil, or any other chemo solution?
You should definitely discuss this with both your dermatologist and your transplant team for their thoughts. Does your dermatologist have experience managing transplant patients on immune suppression meds?

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1 reply
rachel5239 | @rachel5239 | 2 days ago
In reply to @rosemarya "Sunscreen and sun protection!!! Yesterday the temperature reached a beautiful sunny 80 degrees here :-) Hubby..." + (show)
@rosemarya

Sunscreen and sun protection!!!
Yesterday the temperature reached a beautiful sunny 80 degrees here 🙂 Hubby and I went for a hike. It was through a forested area and after a climb, we were on a ridge top in total sun. So here is me: long hiking pants, and a long sleeve shirt (my preference to all-over-body sunscreen), and a broad brimmed hat and sunscreen on face, neck, hands. .
I once had a man tell me that I was not dressed for the weather while on a hike. grrrrh

How do you do the sun protection?

Sending you sunshine,
Rosemary

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The sun stuff is hard. I am a liver transplant and I had pist transplant 38 years. I have has so many mohs surgeries that I have lost count. They have all been squamous or basil cell. Not dangerous as long as you get them checked. I always say if it is new and tender, get it checked.

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rachel5239 | @rachel5239 | 2 days ago

I was diagnose when I was 16. I have pretty much been on some dose of prednisone the whole time. No one told me to stay out of the sun. We did a lot if boating and water skiing. I had my transplant when I was 35 years old. I have been careful since my transplant but the damage was already done. I don't like always having to be covered either. Wishing you all the best. Some of the stuff we have to do is not fun but being alive is great.

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redlady65 | @redlady65 | 2 days ago
In reply to @hello1234 "Hi @redlady65 😊 Does your dermatologist have experience managing transplant patients? My dermatologist recommended that I..." + (show)
@hello1234

Hi @redlady65 😊
Does your dermatologist have experience managing transplant patients? My dermatologist recommended that I stay with the gold standard immune suppression meds and not adjust meds with my current situation. He put me on a weekly maintenance regimen of Fluorouracil solution (chemo solution) once a week on my scalp. Have you used Efudex, Fluorouracil, or any other chemo solution?
You should definitely discuss this with both your dermatologist and your transplant team for their thoughts. Does your dermatologist have experience managing transplant patients on immune suppression meds?

Jump to this post

Yes, I am required to see only John Hopkins transplant, affiliated physicians. Unfortunately I have seen three separate Dermatologists due to lack of availability for continued care under one dermatologist at this time. I will speak with my transplant team doctor about this at our next appointment which will be after my surgery on April 28.

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