Safety after transplant: When is it safe to go to events, to travel?

I was told to be very careful at first. Always mask up and wash hands after. To avoid ball games , concerts, parties. If I recall super careful and limited the first 6 months. Carefully out to eat about once a week was it. Had hand sanitizer in my car every time out. But that worked out and I am now 2 years without issue. I would go by the book with whatever your Mayo team's guidance is. Congrats on 4 months !

@hughwmyers I am 4 plus years post transplant. For the first year I was especially careful- it was also peak Covid time. I didn’t go to movies, plays, concerts, restaurants, etc. unless it was outside. After about a year I started doing everything as long as I was masked and did a lot of handwashing. By now I still do but I mask less frequently. I’m even in a rock chorus but I do mask there as singing is risky. I have always been careful about eating raw fruits and veggies, especially when away from home. Early on I experienced frequent stomach bugs so began being careful about what I eat and since then have been ill far less frequently. I don’t think there are any hard and fast rules about protecting yourself- to me it’s a balance between unbridled joy and being cautious.

I swim with a a couple of women at my club both of their sisters had liver transplants one of them didn’t follow any of the rules and is no longer here the other one only 9 months post is doing horrible same thing I am 3 years post and follow the rules probably more extreme than others but for everything I endured wouldn’t be worth it crowds is a lifetime big no and eating out is very limited and only family owned places I don’t trust fast food and never have, a sports event with over 40,000 people hell no , you’re immune system is very compromised, All I can say is try to be safe it sounds fun to go to big events but it could be deadly as the 2 examples I gave you keep that in mind it’s not worth it to me .

I am 4 years post double lung transplant. I am very careful and mask up every time that I am out. I have gone to an outside concert about 2 years after my transplant with no issues. However, I did wind up catching something when I was on a flight with a long time on the tarmac and I took my mask down to have something to eat and drink. I have take out or go out to eat once a week, but there are some restrictions. No food carts and be very careful of salads. I have caught E.coli from a salad that I ate. I follow the diet given to me by my doctor and follow the other restrictions. For the first few months I wore a mask even when I was out walking where there were no other people. Now I bring a mask in case I am going past anyone. Good luck with the transplant. All of the restrictions become a habit after a while.

@pgruetz This is a good question that even our transplant team and local nephrologist have given us zero advice about. My spouse received his kidney over 7 yrs ago and the first 14 months he had many problems -rejection, low hemoglobin 8 months, CMV virus and then all was good in blood labs. Six wks later COVID-19 arrived. We were living isolated before Covid19 arrived and we still do. Me as his healthy wife also lives isolated: no group settings, no restaurants, no one in our home visiting and rarely inside friend's homes, no clubs ,movies, galleries and such. Last year he had 6 UTI's in 10 wks and ended up in hosp for 6 days on IV med for that ,which did not work and while in hosp he got COVID-19 first time and brought it home to me. THe hospital doctors,nurses and more we explained repeatedly to wear a mask (we did) and most would not put one on. I was livid and very upset about all this. He was sick over 4 months and not able to do anything but recover from being sick. His immunity is low being on these immunosuppressants and with so many people who are sick with anything are 'out and about not wearing a mask and such, it has made us lose more faith in public and also in our hospital system too. We are home 99% of the time for over 7 yrs.. This is our choice and it is the hardest journey we've been on. Harder than chemo for 9 months--at least then there was light at end of tunnel. Transplant would be easy if taking these meds was not required. YOu have to make up your own mind. Life is not fair, but it is your choice. My worry as the wife is bringing home a sickness.

@dotygl Hi. I am so very sorry for what you guys are going through. Boy when you say life is not fair you are telling the truth. I had a full liver transplant two years ago. After 2 months in AZ Mayo sent us back home to CO. And while I have had issues (still have stenosis, CMV, blood clots, etc.) it sounds like I have been much luckier than you guys have been. My only reaction to TAC was headaches at first and gut issues still. But Mayo has reduced my dosage of TAC a number of times over the last two years. While I have been careful always and do the right things I have only been sick with stuff I caught two times in two years. I now go to the stores , grocery shopping, ball games, we have even hosted a party with 30 friends and family at our house. No issues. I get out of the house every day. I grieve and feel guilty that you guys are 99% isolated. My only two thoughts are one Mayo told me when my headaches were bad that they could try another immunosuppressant other than TAC. I said no if TAC was what they recommended. Maybe you guys could ask about that ? Also they have steadily reduced my TAC from 4 mg per day ( 2 am, 2 pm) to now 1 a day (.5 am, .5 pm). If your husband gets sick from the low immune system maybe they could reduce your dosage ? Mayo may have other rabbits up their sleeve to try if things are going so badly. I am so sorry for what you guys are going through. Prayers up. Best of luck.

I am 11 years post liver transplant, I follow all restriction the doctors gave me. With that I was at the zoo two weeks post also that same time I went medieval dinner after that. We went a lot of places during the 2 months I was required to stay close to Dallas (I live six hours way). I have even traveled to South Africa!
That said, you can be careful and still enjoy life, as my doctors said you are not disabled you just have new parts.

One month after my liver transplant, my wife and I drove 6 hours to my son's wedding. I got deep vein thrombosis in my right leg and am still on a blood thinner 20 months later. I don't think blood clots are a big concern 4 months post transplant, but I would still recommend shorter trips than 6 hour drives. As for dealing with large crowds and close proximity to people, my advice would be to take it slow until one year post transplant. If you catch something that requires additional medicine, it's just another burden on your organs to process at a time when they're struggling to process and adapt to the cocktail of meds required post transplant.

As others have said, invest in hand sanitizer and use it routinely after shaking hands or touching things strangers may have handled. FYI, I do not hug or shake hands with anyone except close family or friends. Most people just get a fist bump and if they seem surprised I may explain that I'm immunosuppressed. Also, get in the habit of never touching your nose or eyes with your bare hands. If you must, use the inside of your shirt or a sanitary cloth.

I wish you the best of luck in finding a protocol that works to keep you safe!

@craigcraig I had gut issues with Tacrolimus as well. My PCP recommended Nature's Bounty Probiotic 10 and the NY Presbyterian Liver Team gave me permission to take it. Now I rarely have diarrhea and my energy level is much higher.

@craigcraig HI and thanks for writing and your caring spirit. We did not use the Mayo clinic and live on east coast. I use this site for connecting with others with kidney transplant. It took 14 months to get the meds 'right' so my spouse with kidney blood labs were good. Changing meds now not something discussed due to rejection episode at month 2.5 after surgery too. The organ functions alright now is another reason to not play around with drug changes and doses. He gets blood work every 3 mos and sees a nephrologists every 3 mos. From my academic global online research papers research, quite a few people have issues being on these meds to keep kidney from rejecting. The focus for doctors though is the organ functions and not your quality of life. I'm learning from good research studies, not everything is as good as you think it will be as you wait for the organ. We are still waiting for improvement and given up to be honest. I see things worsening as time goes on and we feel we live in a snow globe. I think many people have a good or adequate experience being on the meds, but everyone's body chemistry is not the same/exact. The research I've done for years has revealed to me alot and the early new medical change where no immunosup drugs are needed is where science is working towards. He tells doctors chemo 9 mos was a picnic compared to this journey. He never misses doses of meds and I'm learning that is a common thing after 5 yrs taking them. For assorted reasons peopl;e stop taking their meds all the time or every other day. Side effects, finances, and more are reasons. I could write a book about the past 7.5 yrs. I wish you well on your journey.