I again appreciate all the replies to my post. Some of you took the time to write detailed responses. I have a question concerning taking trips, especially by plane. I probably would only take a plane to visit my nephews, who live 600 miles away. The plane is with a regional airline and is narrow and usually packed with passengers. I am not confident about doing this, even after a year post transplant. I would like to know about the experiences of others in modes of travel. I do not have a friend or special person to travel with.
I also live in a senior continuing care community. This certainly provides advantages. There is a dining room in which I eat with one or two people. However, some times the dining room is crowded and might prevent me from eating there. I hopefully will eventually be able to obtain food from the cafeteria which I would bring back to my apartment. There sometimes is a line, but I can try to go at a time when it is less crowded.
I also wonder if using sun block is sufficient to prevent some skin cancers.
Finally, do any of you, especially older patients with transplants, have a workout program in a gym? We have a fitness center in my community. I have been working out since 2008. I am only 5 feet 3 inches in height and weigh 106 pounds, but I have robust stamina and high strength for my size. I am concerned that I will lose these gains after transplant, even after a year. What has been the situation with those following transplant regarding more intense exercise?
I will never have the perfect answers to my questions. If I decide to have a deceased kidney transplant in the future, I will have to trust myself and the various staff on my caretaking team where I live and the transplant team at the transplant center to help guide and support me. Dialysis is difficult, but I can do much on the days I am off. I still have energy and have consumed a restricted diet for years.
Thanks to all of you who respond. I see you all as an important source of information and support.
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After you receive a transplant, the severe restrictions only last for a few months. Once the immunosuppressants are lowered to their ideal levels, restrictions are usually eased so one can lead a rather normal a life, bearing in mind that one stays completely current with vaccines etc. In the 3 years post transplant, my hubby travels by car and plane, attends weekly gatherings of 20+ people, goes to concerts, and more. He has made a point of leaving the house daily-for coffee, for lunch, for a walks, etc. He also exercises. I think he would have gone into a deep depression if isolating went on forever. He's gotten sick only once with a cold. It was treated with off-the-shelf cold meds approved by his nephrologist. He recovered quickly. To avoid skin cancer, he uses sunscreen daily and also wears a cap or clothing over areas that don't have sunscreen if going outside. A dermatologist keeps an eye on him too. He's had a few lesions treated. Transplants give people opportunities get out to do things and enjoy life. We use our discretion regarding masking up, we use hand sanitizer all the time. We are alert to illnesses and viruses and plan accordingly. When seeing our grandchildren, for example, we do that in the summer when they don't have coughs and sniffles. Everyone should pay attention to things like that anyway, particularly in their senior years. So life is good for us. We're happy and fulfilled. We are very grateful for the gift that was given to us
hi. I’m almost 6 years post transplant. I have travelled by plane domestically and internationally. I always wear my mask on the airplane. I go to the gym 4 to 5 times a week. I go to restaurants, movies, concerts, shops and other public places. I try to always sit or stand near an open door or window for ventilation. I do try to wear a mask at crowded places. When I travelled internationally, I used public transportation. I never go into the center of a crowd, but rather stand off to the side as much as I can.
The first three months after transplant, I was told to avoid public spaces and limit my contact with those other than my immediate family. But after those first three months, I started to venture out. Of course, everything shift with COVID. I am still very aware of what is “safe” and what is not, but I don’t avoid my life because of my transplant.
I am 5 years post transplant and I work as a Medical Assistant. I think for each of us it's what we feel comfortable doing. I think for each of us we have to do the things that we feel comfortable doing and okay doing. Some think I am crazy for working in the field I do. Some think going out to crowded places is wrong. I feel if you are prepared and take the precautions you feel you need the shy is the limit! I still feel I had more energy before my transplant but I also had things happen after my transplant that if they didn't I think I would have the same energy. I went a month in a half not being diagnosed with Addison disease and complained for a year my incision hurt when they finally listened I had over a dozen hernias that had to be fixed. I am slowly getting back to where I was before my transplant. I worked 3 jobs and walked 10 miles everyday before my transplant. I don't want to work 3 jobs but the walking I would like to get back to the 10 miles a day.
I think the first year after you have had a transplant you have to more careful about where you go and what you do. It's the time your body is adjusting to the transplant and all of your new meds.
I am over 24+ years post transplant. We flew to KC in May, driving next week to Colorado Springs and going on cog railway to Pikes Peak, flying to Calgary, Alberta in September and taking a Rhine River cruise in December - Amsterdam to Basil, Switzerland. I am leading my life and having a lot of fun doing it. I go to restaurants, do my own grocery shopping and do everything I want to. If one of my friends or family is sick, I do stay away from them. Enjoy LIFE!!
Talk with your nephrologist if you are having doubts about travel.
For me, I did not have a transplant to hibernate. I get my flu shot every Fall & the recent COVID vaccine.
I’m 3 years out from my transplant. Last fall I flew to Egypt for a bucket list trip. I wore a mask on the plane, but not on the rest of the trip. (Except the flight back)
I’m not on a restricted diet and do what ever I want. I work out 5days a week. I have my life back.
From my point of view, if your doctor says you can get a transplant, go for it.
You know, dialysis is really hard on the body. People go downhill on dialysis.
I do in center hemo and I work full time…work out and pretty much feel great. Not everyone goes down on dialysis. I am working hard to get back active on the list.
good morning. I am one year post transplant. I had a living donor - my sister - so my transplant went fairly smooth. I understand your uncertainty with post transplant. I am 47 years old. Initially I struggled with crowds as well - masked when I was in crowds and tried to stay away from anyone who had the sniffles. However, I went back to the gym at 3 months post transplant and then back to work at 6 months. I work as a school administrator so I am around sick kids every day. Recently I flew to Nashville. I masked in the airport and on the plane but not otherwise. When we went to the bars we tried to ensure I had some space to breathe like at a table or balcony. I did not run into any problems. Personally for me I think it was more my head than my body that needed to be ready to go in crowds. I have huge anxiety so until my head was ready I would panic in public. Now I feel pretty confident out and about. If someone is visibly sick I mask or stay away otherwise I’ve. Even lucky so far. Hope this helps.
Lee, it is not as bad as taking immunosuppressant drugs, but you do realize that being Stage 5 means a person’s immune system is not good. I was shocked when my doctor told me that when I was Stage 5, not yet on dialysis.
Yes, using sunblock reduces your chances of ALL types of skin cancer. You are best off avoiding the sun as much as possible. I no longer wear short sleeves, ever. Get vitamin D from a pill, not the sun. Whether or not you get skin cancer is due to genetics, skin type, and UV exposure. Once you have had one melanoma, you are more prone to them. I speak from someone who has had 4 melanomas - three of them pre-transplant, one after transplant. Melanoma can appear on any part of your body, not just a part exposed to the sun. And, Immune suppressant drugs increase your chance of melanoma and lymphoma.
I have not been on a plane since my transplant. Since Covid-19 started in 2020, I only went on two planes trips, one-round trip to be evaluted for transplant, and one one-way trip to get my kidney out of state. I drove home (I had a paid driver) I don’t care if I miss funerals, weddings, or vacations. I know far, far too many people who went away, and returned having been infected with Covid-19. Of course, I can understand you wanting to visit your family.
If I were to go on a plane, I would wear a N95. Of course, I wear an N95 everywhere. My family, when they come to visit, first take Covid-19 tests.
I get a booster every 4 to 6 months.
Neither dialysis patients nor transplant patients are allowed to have Paxlovid. It drives immunosuppressant drugs to toxic levels. It was never studied in dialysis patients.
When I go to a doctor’s appointment, I will ask the doctor to please put on a mask. I ask phlebotomists to put on a mask. Sometimes I ask the person taking my BP and temperature to put one on, sometimes I don’t. Once this week, one person at the front desk was wearing a mask, the other three weren’t. I made a point of thanking her for wearing a mask because I have a transplant.
When I am in a doctor’s waiting room and hear someone cough, I simply get up and take a seat as far from them as possible.
Having said all of this, I think it’s possible I finally was infected by Covid-19 this past week. I had a lot of exposure - not even anywhere fun. I went to three doctors’ appointments, one pharmacy, and I did go to a small gym once. Pre-Covid I went to the gym three times a week and I miss it terribly. I went to this gym specifically to do exercises to decrease my risk of osteoporosis.
I quit my volunteer job, which I loved, and miss. It makes me too nervous to be around a lot of unmasked people.
I have been told that the first 6 months after a transplant you are especially vulnerable, then they do ease up on the immunosuppressant drugs a bit.
You decide what you are comfortable with as far as risk level! It is up to you. I don’t think anyone can argue that mask wearing does not reduce your chances of infection, but even masks are not 100%.
Some people do absolutely everything they did before, only wearing a mask when they do it. Or they wear a mask during high exposure activities. Or they chose not to mask at all.
My GP never masks at all. Pretty sure he’s over 65. 75% of all Covid-19 deaths in the US are people over the age of 65.
I am trying to help peope but I am NOT a doctor. I talked to a dialysis patient today who DID get Paxlovid. The doctors just gave her a lower dose of it. Go figure.
Yup. Some people on dialysis can take paxlovid. Also, depending on the type and combination of one's immunosuppressants, so can kidney transplant folks.
I am 5.5 years post-txp and I began flying domestically a couple of years ago. I've never had Covid. I put an N-100 mask on as I am entering my departure airport and I don't take my mask off until I am outside at my destination.
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