Connect
This and That and Talk - My Transplant
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Transplants Support Group.
Connect
@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
@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.
-
Like -
Helpful -
Hug
2 ReactionsPlease 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...
-
Like -
Helpful -
Hug
2 ReactionsThat makes sense after you said "manycoronaviruses'. Thank you, for the clarification.
-
Like -
Helpful -
Hug
1 Reaction@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.
-
Like -
Helpful -
Hug
2 Reactions@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.
-
Like -
Helpful -
Hug
1 Reaction@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
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?
-
Like -
Helpful -
Hug
2 ReactionsI 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!
-
Like -
Helpful -
Hug
2 ReactionsOh, 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.
-
Like -
Helpful -
Hug
1 Reaction