This and That and Talk - My Transplant

@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? ☺️

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

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! 😉

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.

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’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!

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. ☺️

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!

@looperdolly, Welcome to Mayo Connect. Congratulations on 30 years with your kidney transplant. Anniversaries are special! 30 years is an amazing milestone. I want to hear about your story, but let's take care of prednisone first.
I am not aware of any of our current transplant members who have mentioned a long term usage such as you describe. I want to invite you to post your question as a new discussion in our transplant group: "Is there anyone in this community who has successfully tapered off prednisone after having been on it for decades? " That way others will see it more easily. I can help you. Just let me know!

I am 12 years with liver and kidney transplant. I took prednisone for 5 years (5 mg daily) and then research showed that I could taper off. I know that 5 years does not compare to your long term prednisone, but I want to add that it was challenging for me to do as the aches and pains, headaches, moods etc were bothersome. My Mayo transplant team suggested a taper, and my local PCP worked with me when I had to adjust the taper. I also discovered that the prednisone had been covering my exercise induced/allergy induced asthma and so that involved a temporary halt to the taper.

Here is a discussion where other members on Connect are talking about prednisone. As a member, you can join in anywhere.
Groups >Polymyalgia Rheumatica (PMR) >Tapering off of Prednisone
https://connect.mayoclinic.org/discussion/prednisone/

Here is some information you might find helpful as you get started:
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923
https://www.webmd.com/drug-medication/prednisone-taper

Thank you for you reply and recommendation @rosemarya. I will attempt to start a new discussion.
And thanks for the links. If my experience is at all relevant, I would say that your transplant team led you down a good path. Prednisone is a double edged sword...