Lifestyle while on tacrolimus for 6+ months

I was on tacro for I think 80 days after my BMT for MDS. My immune system got stronger every day. I spent the time after my 100 days at my house. I did not go on planes or go out in any large groups. I followed the guidelines after a BMT knowing i did not have an immune system. Kids and people who worked in schools could have many germs my body could not handle. Lori who is a mentor on this site speaks a lot about taking care of our new immune systems.
I will say that I did not have any GVHD with my transplant and today at 590 days past transplant no GVHD. Was Tacro key? It was used mostly for organ transplant originally. I was in a research test. I was 64 so your husband is on it for a different reason. It does mean the body's immune system is not at its peak so your medical team has made suggestions about what could happen. It is a day at a time. An event at a time. I traveled to stores and malls and outdoor things. I lived alone though, so no one was bringing germs into my living space. Being aware of who you will be with and minimizing rooms full of people you are not with often. I went to midnight mass at9 months. I sat at the end of a row,
I started all my vaccines after 6 months. Every single vaccine we have as kids. I had the shingles vaccine a month ago. The measles vaccine is a live vaccine. I do not get that till 2 years. After April 9, 2026.
Online:
Mechanism of Action
Tacrolimus works by inhibiting calcineurin, a protein involved in the activation of T-cells, which are crucial components of the immune response. By suppressing T-cell activity, tacrolimus helps prevent the immune system from attacking the transplanted organ.
Wikipedia
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Side Effects and Risks
While tacrolimus is effective, it can cause serious side effects, including:
Increased Risk of Infections: Due to its immunosuppressive effects, patients may be more susceptible to infections.
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Kidney Damage: Tacrolimus can harm kidney function, especially when used with other medications that affect the kidneys.

Food, i was really careful the first 6 months. Slowly i added back foods. Sushi and items like that. Anything that potentially carries any germs. Introducing any food item with potential harmful cultures like in some dairy. Rare meat? Might it have a micro germ in it not cooked out? Focus on good foods. Restaurants? 63 days? If you said that I would think it is the first 100 days. For me, I was with my caregiver at her house with the same guidelines for the first 100 days. With a BMT your husband does not have an immune system yet to fight off germs.

@katgob thanks so much for the detailed insight! Very helpful. I realized my initial post was not super clear, sorry! We are definitely staying quarantined and practicing food safety for the first 100d — I was more so curious about the period post-100d, but still on tacrolimus. Your response covers it though! Thanks, and really great to hear you’re doing well.

Hi @jcpenney, You mentioned that your husband will be taking tacro for about a year or so to help keep his immune system reined in a bit until the new cells and body start playing well together. If it’s any consolation, I took tacro for 2.5 years…along with the various meds required while on that immuno-suppressant. It worked amazingly well to keep peace between my over-zealous new immune system and my old-lady body. ☺️ Finally a détente was reached and I’m off all meds…living super active and healthy with my 2nd chance at life!
I’m post allo transplant +6 years. I still practice food safety and follow many of the guidelines outlined in the initial recovery period. Yes, our new immune system matures to that of an adult within the first year or two post transplant. But as my transplant doctor told me, it will never be as robust as the original factory installed model and to always be vigilant. Not that we have to live in fear, just be mindful. @katgob gave you great advice as she’s had a remarkable recovery from her MDS/BMT!

So, personally, I don’t eat sushi or raw oysters and avoid buffets. There is still a-3 second rule in our house for food that drops on the floor…it’s in the lava! LOL
When we’re at a family gathering, they make sure I’m always first to be served if we’re ‘spooning’ food ourselves. When in confined or crowded situations, I still mask up. Those little extra steps have kept me safe and healthy for years. One misstep this year finally let Covid catch up with me. So I know that masks do work, extra handwashing, sanitizing, washing fruits, veggies, avoiding undercooked meats…all of that pays off.
This first year post transplant can challenging with all the abrupt changes. And there’s usually a brief mourning period for our past life. But the amazing gift is we get a 2nd chance for a new life…making any of the hardships worthwhile! Gradually, life will resume a level of normalcy and activities. Eating well, drinking lots of water daily, and exercising are vital to continued recovery. So hang in there!
I see your husband had sickle cell anemia. Having a new, working immune system should really make a difference for him. Is he noticing a change in his energy and stamina level?

Hello, I feel obliged to comment as an AML 31 month post BMT patient who worked for decades as a Food Safety Microbiologist. My story will probably be the most conservative given my background so use any or none of my information. Until I was off Tacrolimus I ate nothing that wasn’t cooked fully. No raw fruit or vegetables (a few times that I had an avocado I blanched it in boiling water for a minute). The “triple washed lettuce “ still lots of bacteria. Some fruits or vegetables can’t be cleaned sufficiently before peeling and cutting into them pushes bacteria inside. Cantaloupe is particularly dangerous in that regard. Dried fruit can have lots of bacteria. Absolutely no honey (like as with infants). Undercooked meats or seafood can have bacteria, ground meat like hamburger especially. Also, don’t forget handling raw meat or eggs, cleaning hands is difficult even with antibacterial products so dispo gloves might be wise. I laughed about Lori’s 3 second rule for dropped food on the floor but of course she really means zero seconds and even countertops are not as clean as heat sanitized dishes from the dishwasher. Utensils versus hands. Also a food like yogurt with live cultures is beneficial bacteria those are not pathogenic and are good for the gut microbiome but small quantities at first. I would avoid unpasteurized beverages like cider, milk. All these things I mention have been responsible for food safety outbreaks in normal immunity people. I don’t want to bring you down but we’ve all gone through too much to be brought down by a food organism. This too shall pass and things will ease up. So many wonderful things to focus on in this second life. I truly wish you all the best. By the way I still avoid crowds and mask near groups of people.

Hello, replying to my own comment! My “caution list” of things to eat should have also included luncheon meat either from the refrigerator case or the deli. Sorry but occasionally outbreaks of Listeria with those so elderly or immunocompromised should be wary of those. And one last thing if you’ll tolerate this microbiologist for a minute. Most organisms get into the body through the eyes, nose, or mouth (independent of cuts in the skin) so very important to avoid touching eyes, nose, mouth unless your hands are absolutely clean. Most people don’t realize how often they touch their face. Not cool. My only goal here is to help you be safe! If I can help even one person be a little safer today, I will be happy. I wish you success getting through this health storm, there’s happiness and joy at the other end. We’re all in this together. Just never give up. ❤️

@g4c
Beautiful post. I ate American cheese. I love Sharp and Havarti and so many others but did not eat them till at least 10 months after transplant.
Being careful with all these suggestions as g4c says, is likely why i have done well since my April 9, 2024, BMT. It is crazy to believe i even had one. I am in NY at the moment, and I took N95's in my bag. So many kids and germs, as Lori said, we can never be too careful. I wear glasses, so nose, mouth and eyes were covered.❤️