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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.

Mentor
Lori, Volunteer Mentor | @loribmt | Jul 14, 2021
In reply to @waveg "Lori, I think, once again I learned something new from you! I knew about the gardening..." + (show)
@waveg

Lori, I think, once again I learned something new from you! I knew about the gardening (no problem with that), however, mushrooms and honey I had no clue. I rarely have them but they aren’t on my list, just grapefruit.

I’m still on meds. They get reduced/eliminated and then upped again. So, no Covid vaccine and I’m stuck with car travel, for now. I’m feeling great and coming up on my 9 months since SCT.

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Hi Gretchen! Happy to share what I’ve learned. I’m still on all my meds too, similar situation to yours…reduced, then a little issue returns and back up for a while. I’m in such a wonderfully quiet period right now I hate to mess with things but my tacro has been reduced to ‘test the waters’ again. Finger’s crossed!! And truly, I’d really love to get off my rainbow of pills daily.
Like you, grapefruit is off the table since it competes with a lot of the meds we’re taking. The honey and raw mushrooms were banned along with deli meats, bagged lettuce, unpasteurized artisan cheeses, etc..
When our immune systems are in their infancy, which at 9 months (congratulations on that by the way) your immune system is still very young, we have to avoid potential bacterial/fungal threats. Just like children under 18 months shouldn’t have honey because of a botulism threat…until we’re ‘adults’ we shouldn’t have it either. That’s what I missed the most!! I’m a big girl now! Giggle.

I’m so happy to hear you’re feeling great! Amazing the difference from 9 months ago, huh? 😉 Sorry you’re sidelined yet from flying but with the compromised immune system (it won’t be forever) and not being able to get the vaccine it’s good not to take chances! Where’s the first place you want to travel when you’re back to normal??

REPLY
waveg | @waveg | Jul 14, 2021
In reply to @loribmt "Good for you!!!! Oh that’s really awesome and I’m happy you can reduce your meds a..." + (show)
@loribmt

Good for you!!!! Oh that’s really awesome and I’m happy you can reduce your meds a bit too! Sounds like you had a rewarding appointment! ☺️
Alas, I’m still banned from gardening but I can now eat fresh mushrooms. The white button kind from the grocery store. Rooting in the dirt even with an N-95 is out until I’m off all my meds and have all my vaccinations. Maybe by gardening season next spring. That’s ok I’m happy as a clam just to eat honey and mushrooms again.
Hey, what about a tyvek suit for gardening! LOL. Nothing sticks to that…

Jump to this post

Lori, I think, once again I learned something new from you! I knew about the gardening (no problem with that), however, mushrooms and honey I had no clue. I rarely have them but they aren’t on my list, just grapefruit.

I’m still on meds. They get reduced/eliminated and then upped again. So, no Covid vaccine and I’m stuck with car travel, for now. I’m feeling great and coming up on my 9 months since SCT.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jul 13, 2021
In reply to @athenalee "Thanks! Yes, good to reduce the meds. I figured you’d have to stay away until your..." + (show)
@athenalee

Thanks! Yes, good to reduce the meds. I figured you’d have to stay away until your immune system is good. Glad that at least you have a not too distant future with gardening! And, you get to eat mushrooms, that’s nice. I cooked up a lion’s mane I got from the farmers market…yum! And, honey!

Funny you mention tyvek suit. I can’t wait to be training a bunch of farmers in manure management and food scrap composting with a mask, full length gloves, and long sleeves and pants! They’ll think I’m from the city!

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This mental ‘Kodak moment’ you painted of yourself in front of farmers dressed in basically hazmat garb had me chuckling out loud!! 😂

REPLY
athenalee | @athenalee | Jul 13, 2021
In reply to @loribmt "Good for you!!!! Oh that’s really awesome and I’m happy you can reduce your meds a..." + (show)
@loribmt

Good for you!!!! Oh that’s really awesome and I’m happy you can reduce your meds a bit too! Sounds like you had a rewarding appointment! ☺️
Alas, I’m still banned from gardening but I can now eat fresh mushrooms. The white button kind from the grocery store. Rooting in the dirt even with an N-95 is out until I’m off all my meds and have all my vaccinations. Maybe by gardening season next spring. That’s ok I’m happy as a clam just to eat honey and mushrooms again.
Hey, what about a tyvek suit for gardening! LOL. Nothing sticks to that…

Jump to this post

Thanks! Yes, good to reduce the meds. I figured you’d have to stay away until your immune system is good. Glad that at least you have a not too distant future with gardening! And, you get to eat mushrooms, that’s nice. I cooked up a lion’s mane I got from the farmers market…yum! And, honey!

Funny you mention tyvek suit. I can’t wait to be training a bunch of farmers in manure management and food scrap composting with a mask, full length gloves, and long sleeves and pants! They’ll think I’m from the city!

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jul 13, 2021
In reply to @athenalee "Greetings, I had my 3-month appointment with my liver transplant team. The nutritionist, the nurse, and..." + (show)
@athenalee

Greetings, I had my 3-month appointment with my liver transplant team. The nutritionist, the nurse, and my doctor all felt that a mask 😷 would be fine since, as you said, fungal spores are bigger than viruses. A N95 isn’t necessary, just a well fitted one. But, I’m supposed to wear long gloves to avoid getting compost on me, long pants, etc. (oh joy) and, wash well. Oh, and the good news is I get to cut my Mycophenolate dose down to 1,000 mg/day!

Did you find out about gardening?

Jump to this post

Good for you!!!! Oh that’s really awesome and I’m happy you can reduce your meds a bit too! Sounds like you had a rewarding appointment! ☺️
Alas, I’m still banned from gardening but I can now eat fresh mushrooms. The white button kind from the grocery store. Rooting in the dirt even with an N-95 is out until I’m off all my meds and have all my vaccinations. Maybe by gardening season next spring. That’s ok I’m happy as a clam just to eat honey and mushrooms again.
Hey, what about a tyvek suit for gardening! LOL. Nothing sticks to that…

REPLY
2 replies
athenalee | @athenalee | Jul 13, 2021
In reply to @loribmt "Maybe now that we’re wearing N-95 masks instead of regular surgical masks the rules for us..." + (show)
@loribmt

Maybe now that we’re wearing N-95 masks instead of regular surgical masks the rules for us could relax a bit? Viruses are much smaller that fungal spores. I have transplant follow-up appts on Monday. I’ll ask!! I miss gardening. I’ll report back! 😉

Jump to this post

Greetings, I had my 3-month appointment with my liver transplant team. The nutritionist, the nurse, and my doctor all felt that a mask 😷 would be fine since, as you said, fungal spores are bigger than viruses. A N95 isn’t necessary, just a well fitted one. But, I’m supposed to wear long gloves to avoid getting compost on me, long pants, etc. (oh joy) and, wash well. Oh, and the good news is I get to cut my Mycophenolate dose down to 1,000 mg/day!

Did you find out about gardening?

REPLY
1 reply
athenalee | @athenalee | Jul 11, 2021
In reply to @benlam11 "Yes , the Mayo doctor did the thyroid scan. Since nothing was found I need to..." + (show)
@benlam11

Yes , the Mayo doctor did the thyroid scan. Since nothing was found I need to go for the uptake test. Which takes three appointments over 2 days. I plan to do it next week, with the results going back to my Mayo doctor. Good luck and wishing your thyroid issue is resolved.

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Please let us know what the results show.

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melody12 | @melody12 | Jul 11, 2021
In reply to @rosemarya "@melody12, Welcome to Mayo Clinic Connect. I am always happy to greet a new member who..." + (show)
@rosemarya

@melody12, Welcome to Mayo Clinic Connect. I am always happy to greet a new member who has had a liver transplant! I had a liver and kidney transplant in 2009.

Has the surgery been scheduled? Is your liver transplant team aware of this?
I want to suggest that you visit the Discussion – Liver transplant support group. It is a good place to post your question about your abdominal surgery. https://connect.mayoclinic.org/discussion/liver-support-group/

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Hi Rosemary, No the surgery is to be scheduled. Thank you for welcoming me and I will check out the liver support group.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 11, 2021
In reply to @melody12 "Hi, I am a newbie. I am a 1 yr. post Liver Transplant recipient. I have..." + (show)
@melody12

Hi, I am a newbie. I am a 1 yr. post Liver Transplant recipient. I have had abdominal pain since Nov. 2020. Dr.’s thought it was nerve ending damage and referred me to Pain Mgmt. In February, the right side of my abdomen area started protruding outward. After a series of tests, it was finally discovered recently by a trauma surgeon that I need to have surgery to reconstruct my abdominal wall. I would like to hear from others who may of had the same issue and any and all comments would be appreciated.

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@melody12, Welcome to Mayo Clinic Connect. I am always happy to greet a new member who has had a liver transplant! I had a liver and kidney transplant in 2009.

Has the surgery been scheduled? Is your liver transplant team aware of this?
I want to suggest that you visit the Discussion – Liver transplant support group. It is a good place to post your question about your abdominal surgery. https://connect.mayoclinic.org/discussion/liver-support-group/

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1 reply
benlam11 | @benlam11 | Jul 10, 2021
In reply to @athenalee "No, just TSH, which was just moderately high. My doctor said he’d jmonitor it. At the..." + (show)
@athenalee

No, just TSH, which was just moderately high. My doctor said he’d jmonitor it. At the time I was seeing an acupuncturist for allergies and I told her about it. She did needle treatment and Chinese herbs, and my levels returned to normal. I’ve been seeing an endocrinologist for osteoporosis who recently tested my TSH. It’s above normal again.

I have Sjogren’s, which I have read can contribute to hypothyroidism, as can other autoimmune diseases. However, immunotherapy can apparently also contribute to it. So, I’m going to discuss this with my liver doctor next week.

Good luck with your test. Have you spoken with your transplant team about it your high levels?

Jump to this post

Yes , the Mayo doctor did the thyroid scan. Since nothing was found I need to go for the uptake test. Which takes three appointments over 2 days. I plan to do it next week, with the results going back to my Mayo doctor. Good luck and wishing your thyroid issue is resolved.

REPLY
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