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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.

JK | @contentandwell | Mar 19, 2020
In reply to @wildcat "Hello from Scotland where everything is just as strange as it is for you folks in..." + (show)
@wildcat

Hello from Scotland where everything is just as strange as it is for you folks in the USA. We are fortunate in having a health service which is
nationwide and so co-ordination of stats and necessary equipment etc is easier for us. But we are not doing everything correctly as we were horrified by our governments views on 'herd immunity (letting a lot of people get sick so that the whole country can build up an immunity to the virus). Thankfully that policy has changed as it was particularly concerning for those of us in the high risk categories.
I am thankful too that we transplant patients are already well trained in good hygiene! I am self isolating and my husband is doing all the shopping. I can only hope that he will not succumb to the virus. There is good and bad in this dystopian world we are about to enter; the bad can be seen in stock piling and those who refuse to follow government advice but the good is in the kindness and offers of help from so many people to the most vulnerable in our society. I live in a small community and the response has been wonderful already.
On a fina , maybe optimistic note, I have read that both cyslosporin and tacrolimus have been effective in stopping the replication of some types of coronavirus in the past. Obviously, we don't have know yet if it is effective against Covid-19 but has anyone heard anything about this?
Stay safe everyone. We are all in this together no matter who we are and where we come from. One last thought, it is springtime here in Scotland and that makes everything seem better....

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@wildcat That would sure be interesting if some immunosuppressants are effective in stopping this virus. I am on sirolimus so if that is true I hope sirolimus will do the same.
JK

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 19, 2020
In reply to @wildcat "Hello from Scotland where everything is just as strange as it is for you folks in..." + (show)
@wildcat

Hello from Scotland where everything is just as strange as it is for you folks in the USA. We are fortunate in having a health service which is
nationwide and so co-ordination of stats and necessary equipment etc is easier for us. But we are not doing everything correctly as we were horrified by our governments views on 'herd immunity (letting a lot of people get sick so that the whole country can build up an immunity to the virus). Thankfully that policy has changed as it was particularly concerning for those of us in the high risk categories.
I am thankful too that we transplant patients are already well trained in good hygiene! I am self isolating and my husband is doing all the shopping. I can only hope that he will not succumb to the virus. There is good and bad in this dystopian world we are about to enter; the bad can be seen in stock piling and those who refuse to follow government advice but the good is in the kindness and offers of help from so many people to the most vulnerable in our society. I live in a small community and the response has been wonderful already.
On a fina , maybe optimistic note, I have read that both cyslosporin and tacrolimus have been effective in stopping the replication of some types of coronavirus in the past. Obviously, we don't have know yet if it is effective against Covid-19 but has anyone heard anything about this?
Stay safe everyone. We are all in this together no matter who we are and where we come from. One last thought, it is springtime here in Scotland and that makes everything seem better....

Jump to this post

@wildcat, It is good to hear your voice! This sickness is really frightening, especially for us at risk folks, but now it is looking like the younger ones are also at risk. My husband and I are retired, and being stay at home folks anyway, we are not needing to make too many adjustments, so far because, as you said we are already trained in good hygiene.
Where did you hear or see the information about cyclosporin and tacrolimus. I wonder if it is a rumor or a medical theory or a fact? There are a lot of myths and false information floating.
@wildcat, I am going to send you an invite to a discussion where other transplant recipients are talking about tCOVID-19 and transplants. I think that you will especially enjoy the international participation. I will meet you there!
If you do not get the invitation, let me know here in a reply.

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wildcat | @wildcat | Mar 19, 2020

Please be assured that I read this in a peer reviewed scientific paper. I will try to send you a link but I'm not too great with this link business! I would also stress that there are many coronaviruses ( if that is the plural) and there is no evidence yet that these drugs will act against Covid-19. We can but hope...

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 19, 2020
In reply to @wildcat "Please be assured that I read this in a peer reviewed scientific paper. I will try..." + (show)
@wildcat

Please be assured that I read this in a peer reviewed scientific paper. I will try to send you a link but I'm not too great with this link business! I would also stress that there are many coronaviruses ( if that is the plural) and there is no evidence yet that these drugs will act against Covid-19. We can but hope...

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That makes sense after you said "manycoronaviruses'. Thank you, for the clarification.

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ellerbracke | @ellerbracke | Jul 2, 2021
In reply to @IWantToBelieve "@contentandwell - Well I just came from my podiatrist today and she thinks my fungus is..." + (show)
@IWantToBelieve

@contentandwell - Well I just came from my podiatrist today and she thinks my fungus is gone but I'm going to keep using the Jublia for three more months to be safe. There is a little nail that is thick and she is not sure if that is fungus so we are going to be safe. My plantar fasciitis is doing much better so I can use flip flops or sandals (good ones with support) in morning and night to help keep things dry (4-5 hours tops). I'm going to soak with bleach and water every so often too to make sure it is all gone. As my GP said, bleach is great at killing germs. One of the things that is hard about getting rid of the fungus is that it is under the nail bed so it is hard to get the medicine in there which is why soaking in bleach and keeping toenail very short will help reach the fungus that is closest to your cuticle.

I remember at the very beginning of treatment being told to Lysol the inside of my shoes but I did not keep that up so that would be a good question for the doctor you see. I don't understand why it does not spread to other toes or why my husband has not gotten it from the shower so the spreading of the fungus is a mystery to me. I don't quite get how we get the fungus in the first place but my doctor thought it was because I wore sneakers all summer (all day because of my plantar fasciitis) so my feet were very sweaty and hot. Not sure why I only got fungus in one toenail so I don't know.

Some are very highly chlorinated and some are not. Also, chlorinating the pool does nothing to control the deck and change rooms that are often always wet and nasty. It is my understanding that chlorination helps with controlling germs but is not a guarantee. I guess you just have to do what your transplant team says is permitted and deal with an issue if it arises.

I'm not looking forward to this germ sensitivity. I'm already a bit of a germaphob. My first daughter had a cold right before she passed away (later found out it was RSV) and the doctor told me to go home and Lysol the countertops etc. Well I have been a Lysol freak ever since. My husband says we should buy stock in Lysol.

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@contentandwell : JK I know you from the TKR site, surprised but happy to find you here. Last February, for no reason at all, the nail of my big left toe suddenly hardened, turned yellow, became brittle, and more or less crumbled over the span of a few weeks. Was left with not much of anything, nail-wise. Whatever did not crumble on its own, I trimmed as best as I could. Thought it might have been caused by unusual walking (in flat heeled boots, up and downhill, on snowy/icy paths) for 2 weeks on vacation. So - wait and see. And wait. And wait. And certainly not “see” a doctor for something minor in the developing and nobody knew anything beginning pandemic. Fast forward: it took 15 months for the toe nail to grow back in, nice, shiny, and pink and firm. Forward again: after 6 weeks of happy, happy, joy, joy, I had to wear a pair of toe peek high heels for a funeral. Had not worn those for 2 years prior, at least. And guess what: 2 weeks later the same left big toe nail turned white, and separated from the nail bed. Not sure if this is another bout of fungus, (first one was confirmed by physician with offer of liver damaging meds), or not. Just so tired of this issue. Currently using vicks vaporub with bandaid cover nightly. Any comments/advice/insights, I’d appreciate.

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1 reply
ellerbracke | @ellerbracke | Jul 2, 2021

@contentandwell PS: Currently dealing with early breast cancer issues, so toe nail issue is annoying, but will have to wait until all the other stuff is done. But it certainly is irritating.

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JK | @contentandwell | Jul 3, 2021
In reply to @ellerbracke "@contentandwell : JK I know you from the TKR site, surprised but happy to find you..." + (show)
@ellerbracke

@contentandwell : JK I know you from the TKR site, surprised but happy to find you here. Last February, for no reason at all, the nail of my big left toe suddenly hardened, turned yellow, became brittle, and more or less crumbled over the span of a few weeks. Was left with not much of anything, nail-wise. Whatever did not crumble on its own, I trimmed as best as I could. Thought it might have been caused by unusual walking (in flat heeled boots, up and downhill, on snowy/icy paths) for 2 weeks on vacation. So - wait and see. And wait. And wait. And certainly not “see” a doctor for something minor in the developing and nobody knew anything beginning pandemic. Fast forward: it took 15 months for the toe nail to grow back in, nice, shiny, and pink and firm. Forward again: after 6 weeks of happy, happy, joy, joy, I had to wear a pair of toe peek high heels for a funeral. Had not worn those for 2 years prior, at least. And guess what: 2 weeks later the same left big toe nail turned white, and separated from the nail bed. Not sure if this is another bout of fungus, (first one was confirmed by physician with offer of liver damaging meds), or not. Just so tired of this issue. Currently using vicks vaporub with bandaid cover nightly. Any comments/advice/insights, I’d appreciate.

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@ellerbracke Along with my knee replacements, I am also a liver transplant recipient. It will be 5 years in September.

When I got the toenail fungus my nail tech didn't think it could be a fungus because it happened so quickly. She was wrong. I was desperate to get rid of it because when I did some research it made me concerned that a fungus of that could spread so I went to a podiatrist who did the laser treatment on them - it had spread to about 6 toes. Only the first fit the description you gave of it falling apart, etc. The laser got rid of all but one big toe. I didn't care for that office at all and they made no concession for their very pricey treatment not working so I went to a different podiatrist. I really liked him. He said he didn't think I should be on an oral due to my transplant but told me to check with my transplant department. They said I could give it a try and they would test me after a week or two. The podiatrist was right, it did cause a problem with my numbers so I had to go with a topical treatment. After paying about $50 for a little bottle of that I found one with the same active ingredient in Walgreen's so I would do that the next time. If you want the name of it I will try to remember to put it in if I still have it.

The whole thing took the better part of a year. Such a nuisance. I was scrupulously careful too. Granted I go (or did before the pandemic) to a health club and use the pool but my feet never touch the floor. I am fanatical about that and cringe when I see other people walking around barefoot.

I'm sorry you are dealing with breast cancer issues. I hope things will resolve there and that treatment will have you back to normal quickly. My niece went through triple-negative breast cancer a few years ago and is doing great now.
JK

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 8, 2021

After my transplant in 2009, I had a take home booklet of safe do’s and dont’s. I remember reading that as a transplant recipient, I should avoid caves due to mold, fungus…
Has anybody else heard of this? Does anyone know whether it is safe to go on a cave tour as a transplant recipient?

REPLY
3 replies
athenalee | @athenalee | Jul 8, 2021
In reply to @rosemarya "After my transplant in 2009, I had a take home booklet of safe do’s and dont’s...." + (show)
@rosemarya

After my transplant in 2009, I had a take home booklet of safe do’s and dont’s. I remember reading that as a transplant recipient, I should avoid caves due to mold, fungus…
Has anybody else heard of this? Does anyone know whether it is safe to go on a cave tour as a transplant recipient?

Jump to this post

I haven’t seen it in any guidebooks I’ve read, but have come across some info on it. Including from the CDC - https://www.cdc.gov/fungal/diseases/histoplasmosis/risk-prevention.html

Sad…I love touring caves!

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athenalee | @athenalee | Jul 8, 2021
In reply to @rosemarya "After my transplant in 2009, I had a take home booklet of safe do’s and dont’s...." + (show)
@rosemarya

After my transplant in 2009, I had a take home booklet of safe do’s and dont’s. I remember reading that as a transplant recipient, I should avoid caves due to mold, fungus…
Has anybody else heard of this? Does anyone know whether it is safe to go on a cave tour as a transplant recipient?

Jump to this post

Oh, but, I’m in the composting field…which I’m not supposed to be around for the same reason. But, I have to work. So, I wear a mask and sanitize. So, perhaps talk with your providers about that option.

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