This and That and Talk - My Transplant

Hi, This is my first comment in a MAYO connect group. I hope it's well enough matched to the topic. Here goes...I have surpassed my 30 year kidney transplant anniversary. An amazing milestone for me. Last month I called a meeting with my care team to discuss how to better fine-tune and manage transplant medications to take into account my whole body health for the next 30 years. Long story short, the side effects from long term (3 decades) prednisone use are at the forefront of many of my health setbacks. Is there anyone in this community who has successfully tapered off prednisone after having been on it for decades? My care team is working with me to gradually taper off prednisone completely. It sure would be assuring to know if anyone has gone before me on such an endeavor. Will my body really learn to make cortisone on it's own again? Thank you for reading my post. I really appreciate it!

Hi Rosemary, interesting! I didn’t realize the difference between your liver/kidney transplant and lung/heart! Well, ok, besides the obvious that they’re different organs. But that you didn’t need to wear a mask before Covid. That’s awesome. So yup, you probably don’t have to worry about the same things. That would be a good question for @danab with his heart transplant and if he needed a mask before covid.

With a bone marrow transplant, my entire immune system has been replaced with someone else’s. I’m on tacrolimus to keep my new and very aggressive immune system suppressed until my body and the new cells learn to play nice and also 2 antibiotics, antifungal and antiviral meds daily. When I’m finally off tacro and finished with all my childhood/adult vaccinations I should be able to be liberated from pills and masks! But for now I have to wear a mask and did so for a over a year before Covid hit. Doesn’t bother me at all. ☺️

I’m wondering if having a liver transplant is different. I was surprised when I learned we’re not supposed to use probiotic supplements because of the potential for even an overgrowth of “good bacteria.” Perhaps as @loribmt says the N95 might provide adequate protection for air borne organisms…I sure hope so! I see my doctor on Tuesday so I’ll ask. It’ll be good to share our findings!

And, Mammoth Cave is awesome!

Lori, in the preCovid time, I did not need to wear a mask for protection because the liver is not exposed to air as is the heart or lungs. During flu season, I was able to avoid gatherings or just stay home when flu was active in my area. I have seen lung or heart transplant patients at my local lab with masks and they have always been surprised by that.

I suppose that you don’t know whether you will need a mask with your bone marrow transplant in the nonCovid times.

I am also a liver (and kidney) transplant recipient. Lori is a bone marrow transplant recipient. I wonder if that makes a difference?

I am able to wear gloves to work in my garden, pull weeds, trim, and do minor yard work. Hand washing is essential. I am very careful to treat any skin abrasions immediately if that happens. Fear and respect to avoid infection is my motivation. Most of my gardening is to sink a potted plant in the ground or in a planter!

I do not have a particular interest in caves, but my son asked about it today. Granddaughter loves Mammoth Cave and it is just “down the road”. I have been in the cave before transplant and as a child. I prefer being a surface visitor!
I will talk to my coordinator if/when anything develops.

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! 😉

Hmm. Wonder why a mask doesn’t suffice. Guess I’ll talk with my liver doctor! Thanks.

@rosemarya HI Rosemary, Sorry, my friend, caves are on the naughty lists for transplant patients as is gardening or anything to do with dirt because of fungus and molds. Especially disrupted dirt, stagnant areas, etc.
We have very low resistance to fungal infections.
Sadly, I know of 3 fellow bone marrow transplant acquaintances who have contracted fungal infections from gardening the past 2 years. One passed away from Fungal Meningitis, another died from a Blastomycosis and a 3rd friend recovered but is still having serious lung issues due to fungus. This is all from Pre-Covid.

My transplant team remains adamant that there is to be no gardening, not even pulling up a weed, even with a mask. We had our yard and gardens completely redone this past month. I couldn’t leave the house or have windows open. I know it’s the pits!! But it’s a small trade off for having a life, right? ☺️

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.

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!