I’m 18 months post transplant. CMV finally in check and am feeling pretty good (as of mid-April). It seemed to have taken me about 4-5 months of CMV testing “not detected” before my body was fully recovered from the strain CMV put on my body. Thankfully I’m past that too now.
So I’m feeling like getting back to normal… I usually do a little container gardening. I am just wondering if any of you garden post transplant and, if so, do you take any special precautions.
I had thought about wearing chef’s gloves and a mask both of which I’d throw in the garbage as I come inside. Then I’d wash my hands, etc.
My transplant center nurse says she thinks this would be okey but I’m still just a little hesitant.
Jayhawker
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Jayhawker
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That is great news. Why are you so concerned with gardening? I live to work in my garden which includes multiple pots. I am and have been on immunosuppressants for years. Not as strong as transplant drugs but still... and never had an issue.
The transplant center’s patient information says not to garden due to the likelihood of picking up something from the dirt (or possibly fertilizer). Between the low immune system due to meds and my T-LGL leukemia I am pretty much hesitating to do anything that places me at increased risk of infections… However, I don’t think I’ll want to live this way indefinitely.
oh boy, that would be difficult for me. I love my garden. What if you mask up and gloves...I am with you, there is somethings that I would have to resolve but I want to have a life after transplant. Besides, gardening is healthy and grounding.
The nurse I spoke with at the transplant center said she “thought” it would be okey if I wear gloves and a mask. I had planned to wear chef gloves and throw them and my mask in the trash as I come back inside. Of course I’d wash my hands as soon as I’m back inside too.
Their patient information implied that this was for the first 6-9 months post transplant. I’m 18+ months post transplant at this point… Frankly, even with my best efforts I will be exposed to viruses and bacteria. So I think I need to take all reasonable precautions but get back out into society and enjoy my retirement (which starts in three weeks).
I have had a large garden when we were still living in WI right after my transplant. Now that I am older and living in WY I have 4 raised "trugs" that have my tomato plants and cucumbers along with some containers. I never had any problems and love gardening, but I haven't had any of your issues either. I always wear gardening gloves but haven't worried about anything else. I am now 24+ years post transplant.
Thanks, I may ask my neighbor to actually plant the flowers for me this year. But I could water them using a watering “wand” that would put me 2-3 feet away from the plants and dirt… That along with gloves and a mask should really be enough. Then I should be able to be totally back to normal on this next year.
so glad that you're feeling better and trying to get on with life. I can share no info on gardening, but it looks as if you're getting some good advice from this community. After what you have been through, its understandable that you're cautious. Whatever you decide, enjoy it and keep posting.
My hubby, too, was told to stay away from soils the first few months after his transplant. His transplant nurse specifically mentioned that soil had a lot of "microorganisms" in it. However, last year, we totally forgot about that warning as hubby happily planted and watered his veggies without taking any precautions at all. Looking back, nothing happened. Today he was puttering around at our local farmer's market - handling produce straight off the land, etc. -without worries. With your dual conditions, though, I'd probably place a quick call to your oncologist just to be safe. Gloving up and maybe masking up (for airborne spores?) might be recommended. Gardening is such a wonderful thing to do. We'd be lost without having plants in our life. Glad to see you like it too!
Yes, it is the microorganisms and the airborne spores. That’s why I think masking and gloving are needed.
I’ll message my oncologist’s nurse tonight to see what he says. Frankly, it was clear in my appointment with him yesterday that he’s finding the transplant nephrologist to be tough to work with and a “worrier.” His word, not mine. He’s looking forward to working with Dr Darwish, my regular nephrologust. He had his nurse messaging Dr Darwish at the end of my appointment to coordinate labs across both offices. Dr Darwish is truly excellent and a great collaborator. These two will work well together.
I see Dr Darwish for the first time since the transplant in July. I’ll rely upon him to interact with the transplant center from this point forward. I’m only going into the transplant center twice this coming year. They are transferring me back to Dr Darwish over the next two years. I’m viewing that as a good sign.
My visit with oncology went very well. Dr Hoffmann, my oncologist, doesn’t need to see me for 6 months. He said several times that he doesn’t think I’m going to have much trouble with the leukemia. He’ll keep an eye on my labs and will order blood platelet labs twice a year to monitor but isn’t expecting to see much change. He commented on how stable my data is. He also noted, again, that I take two of the three meds they use to treat T-LGL leukemia regularly for my transplant. I asked if he’s thinking that that is contributing to my stable data. He thinks it could be. But with the rarity of my case and lack of research on cases like mine he can only provide educated guesses.
Regardless, my data is very stable and in overall good range for leukemia. He says that typically this data fluctuates quite a bit. Stable data is always better; more predictable. So he’s pleased with the range and stability in my data.
My hubby is on the two-visits-a-year plan with his transplant center too. And it's been fantastic getting going back and seeing to his regular, local nephrologist. The guy is chill - easy to talk to and not rushed. You're going to love returning to your personal nephrologist too. Yup, I think it's good to check-in with your oncology people...just in case they know something you don't. But, honestly, I don't think you'll be denied gardening unless you're really run down, etc. Appreciate the update. I'm thoroughly thrilled you're on such a good path! Keeping us in the loop re your situation has been really educational and eye opening. It's also been heartwarming to see the prognosis. You've struggled so hard and so long. Jayhawker, you definitely deserve to go out and enjoy life. As you've probably just retired, those garden containers are beckoning you...! And I hope you're rewarded with lots of flowers!
Retirement is at 5pm, CST July 3, 2024. I’ve got my medical insurance in place including Medicare Part D and my Plan F supplemental all of which will start August 1, 2024. . I’m finalizing my TIAA retirement distributions a little later this month. I’ve got a few other loose ends to tie up and then post grades for my final class which I’m teaching now. That’s it. I’ve created and distributed a thank you lecture capture thanking past and current colleagues, administrators and so forth. I also created a video for my past and current students. I posted that in my classes last spring and my class this summer. I’ve also sent it to my former doctoral students.
So, I’m ready and just enjoying teaching one final class right now. This is a pretty big transition. But I’m looking forward to it.
Yesssss! That's a classy approach to to letting everyone know you're stepping away from the daily grind! You're gonna rest up - sleep as long as you want - and then a whole new chapter is gonna open up and be filled with things you choose to do!
My opinion is to go enjoy gardening! I am post op 5 years still blows my mind when I type that or say it but I don't even wear a mask when I go out most of the time. I do take precautions like if I am in a really indoor crowded place I wear a mask and I change clothes when I come home from being out and shower. I sometimes think we forget to live our lives because we are so cautious. Don't get me wrong we need to be cautious and use our heads about things we do or don't do. We each also have to do things that make us feel comfortable. If gardening brings you joy than go do it!
Here is the I received in the literature provided by my transplant team.
Gardening is all right.
After you go home, houseplants and gardening pose no problem for you. You should wear a dust mask whe. working with compost and fertilizer. Weat glovws when gardening, and practice good hand washing afterwards.
Thanks for sharing this. I had wondered if fertilizer might be the greater issue. I don’t use mulch so that poses no issues for me. I’ll see what I hear back from my oncologist just to cover all my bases. If he’s not concerned and just wants me taking the precautions I’ve outlined, I’ll move forward and do a modest amount of container gardening this year. If he has concerns I’ll ask my neighbor to plant for me and apply fertilizer once a month throughout the season. But I should still be able to water using my extended watering “wand” which puts me close to 3’ from the plants.
okey, I just heard from my oncologist’s nurse. They definitely have no problem with me gardening. She suggested I use gloves snd said that they just advise against exposure to fertilizer and mulch. But they want patients continuing with hobbies and so forth that “bring then joy.” So, I’ll ask my neighbor to fertilize my containers once a month but otherwise will garden as I’d planned using gloves and a mask, tossing both in the trash as I come through my garage, and washing my hands as I get inside. I often change clothes once inside due to my seasonal allergies. I’ll definitely do that consistently now. But I’ll enjoy doing some container gardening again!
Glad your cmv is under control,mine keeps rising now at 1100 last test so sick of this stupid virus.Anyway done with living walking on eggshells.I tossed my masking in public unless someone obviously sick as masking did diddly in stopping me from getting sick and this year have planted in planter boxes and have taken zero precautions except wash my hands when I come in house which I wash hands always anyways.
When they discontinued Myfortic my CMV labs started testing “undetected.” I have mentioned this before. Apparently my case is unusual due to the T-LGL Leukemia they found. I honestly don’t fully understand it.
But my oncologist said that he would have pulled me off myfortic if I had not already been pulled off it. He said that due to my leukemia Myfortic was essentially causing CMV to reactivate over and over again. Again, I don’t understand this so can’t provide any explanation. However, I’ve been off Myfortic since last November.
This means I’m only taking two anti-rejection meds, prednisone and Prograf. My transplant nephrologist is clearly uncomfortable with this, but I’ve come to realize that she’s generally a nervous doctor.
My renal panel labs continue to look good. Overall my CBC data looks good too with the exception of my neutrophils and lymphocytes, both of which are compromised by the leukemia. So I am happy overall. My AlloSure data looks very good showing a very low probability of organ rejection and my DSA test looks good as well. Both have been run within the past month. And I’m feeling well. So, I am not terribly worried.
However, I can’t stress often enough that this situation with pulling me off Myfortic is very unique to me. It would not have happened if I didn’t also develop T-LGL Leukemua. So I can’t think anyone participating in this forum would run into similar issues. This type of leukemia is extremely rare and virtually unheard of in solid organ transplant recipients.
Yeah my kidney doctor pulled me off them might have work like 2 months ago I'm on cirilus and prednisone in the belt accept and now I'm going through another round of marivah bar but can't seem to shake this stupid thing
I’m not sure if my transplant nephrologist will try something to replace Myfortic or not. If she does consider it I’ll ask her to be sure to confer with my oncologist first to be sure it won’t cause the same issue with CMV as Myfortic did…
I’m glad to hear you moving on with your life as they continue to try to pull your CMV down more. I can’t help but think the stress we each experience related to all of this is good for us. I know some people just live with viruses like CMV roaming in their bodies. While not ideal, it may be workable as long as they’re feeling decent.
I have a few friends who are living with AIDS. They have learned to thrive with AIDS and quite the pharmaceutical cocktail. I am amazed at the medications they have to take to live. There are some hefty side effects to many of those meds. But my friends are thrilled to be alive to see their families and so forth. They willingly take the meds and never look back. I’m trying to model them as I continue to adjust to the comparatively minor side effects I experience with my meds.
About gardening, I've been gardening with a kidney transplant (two, actually) since 1998. I don't take huge precautions except I make sure to keep away from breathing too much (however much that is...) of the following:
- fertilizers and compost with manures in it (especially chicken manure!)
- powder type plant food mixes, especially organic ones that have all those good things like mycorrhizal fungi, fish meal, bone meal, etc.
- aerosolized "stuff" from plants with diseases like powdery mildew (I always feel this if I breathe some of this in), and other fungal diseases like blights on tomatoes, etc.
- perlite, vermiculite, peat moss, etc. dust when creating potting mixes.
For these kinds of tasks I either wear a surgical mask (not an N95), make sure I'm upwind of whatever questionable stuff I'm using, or my husband helps me with bigger jobs (e.g., he helped me fill my raised beds with soil and compost). I also try and wear gloves and pants and long sleeves because cuts take a long time to heal.
For me the benefits of gardening and the joy it brings me outweigh the risks, as long as I take reasonable precautions.
That said, thank you all for the tips about mulch. I need to be more careful about breathing in molds, etc. I garden a lot and have found it challenging to find the lines to draw. I will start wearing a surgical mask again when dealing with potting soils, mulch, old leaves, etc.
I have tried many gardening gloves. My transplant nephrologist said to wear disposable rubber gloves with gardening gloves over them. I tried this and it was terrible - my hands sweated so much that when I took off the gloves it was like bathtub hands gone wild. I decided that was not the solution for me. I just try to find gardening gloves that are rubberized or otherwise don’t let in soil through mesh backs. Leather work gloves have been good, but I like to have some dexterity when planting. If I don’t have enough dexterity with gloves on I admit that I just take the gloves off then worry about it. So, for me finding comfortable and effective gloves has been a must.
I use a fingernail brush when I come in to wash my hands. That has been very helpful!
I cover up most of my skin with long sleeves, overalls, bug socks (we have tons of ticks), hats, etc. so it is just my hands to think about.
Good luck to everyone in finding the ongoing quest for a balance of caution and doing things that makes us feel good!
I’m currently using latex-free chef gloves. They don’t allow anything through to my skin but are very flexible and don’t hinder my dexterity. We’ll see how it goes as the summer progresses. I’m also masking. I’m changing clothes when I come inside putting my gardening clothes in the laundry room where they are laundered shortly after I come inside. I, too, use a scrub brush on my nails when hand washing after coming inside. It’s a lot but I love container gardening so for me it’s worth it…
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