General
How are we staying as healthy as possible, as a solid organ transplant recipient?
Updated March 13, 2023
in General
What are some of the things that solid organ transplants recipients have been doing / are doing, to stay healthy, after they've been transplanted? Please share your experiences and learnings.
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[ video via American Society of Transplantation (AST) ]
1 - 9 of 9 Replies
I captured my thoughts below as I listened to the video linked above.
I wash my produce thoroughly, every time I eat it, and avoid salads/raw produce when eating out. (not that I actually eat out frequently)
I also have celiac disease causing me to follow a very diligent gluten free diet. lots of places only offer salad as gluten free options and that has always bothered me and now I have another excuse not to just have a salad! :)
I was not advised to avoid gardening. I will be asking my doctor at my next visit. I hope I don't have to give it up. It does bring me great joy. A few years ago, I focused on keeping my finger nails beautiful and got into the habit of wearing my garden gloves all the time, seems as though this will be good going forward after transplant.
I've always been over-cautious regarding SPF, having worked for a skin care specialist for many years. Sometimes my husband lovingly refers to me as the Hitler of sunscreen, forcing the whole family to wear it diligently. :) (not to be offensive at all) I also love a good floppy hat/baseball hat/visor and big fantastic sunglasses. We have big umbrellas, easy-up canopy, and all the shade accessories we travel to and from sporting events with.
I've never been a fan of bottled water (and the plastic use associated with it), and luckily in CO we have great tap water. I will have to be careful when I go visit my parents house in Kansas, as they have well water. I will be going to their house in May for my sister's graduate school graduation and will probably just bring bottled water with me. thankfully, I am okay drinking room temp water :) I also have safe hiking straws that my parents have at their house if bottled water is not an option.
I am up to date on all my vaccines and always have been and always will be, as is my family. We do have an issue where my husbands grandmother has decided not to get any vaccines anymore. She is 90, and recently lost her husband and has a different outlook on life, but my Mother in Law does not want me to have contact with her. That is a sticky situation. My husband only sees his grandmother with both of them masked up now, or outside.
Activity: I have always been a pretty active person. I have an 8 year old boy who's motto is "ball is life". He plays basketball, soccer, and baseball plus football in the backyard. By default, I play with him all the time and spend some time coaching him. We have started hiking again now that I am past 6 months post-op. We keep them to "easy/moderate" hikes, and I have a fear of heights so there will be no rock climbing in my future. We like to SUP, and Kayak and will take extra caution this year, while visiting the somewhat small revivor we visit.
My son still wears a mask to school. We discussed with his pediatrician that this was the best course of action for at least a year post transplant for me. He understands and willingly wears a mask, even though he is the only kid at school still in one. He does get to remove the mask when playing outside. He does not wear a mask to play sports. Basketball is his only indoor sport right now and his whole team knows our home situation. he plays through the church and his team is very supportive, and understanding. We wash hands as soon as we get home, go into someone else's house, and use hand sanitizer when we exit a store. Weekly, I spray down my son's backpack with Lysol, and we use Clorox clothing sanitizer on his sports equipment. (baseball batting gloves/soccer shin guards)
Transplant Patient
My first answer to this was I don't try to stay healthy as a transplant recipient, I try to stay healthy as a person. A whole person approached has been the key for me. There isn't anything I don't do because I had a transplant. I avoid X food because I feel bad when I eat it, not I avoid X food because I had a transplant and can't eat it...
Maybe this was different in the beginning, or because I've been sick since the day I was born, but everything I do is just normal life for me. I don't go out much, but that's because I'm an introvert and would rather just be at home. My husband and I wear masks in crowded public settings, but I like to think we'd do that even if I didn't have a transplant because we're decent people and community care. I incorporate wellness habits like movement, ice baths, meditation... into my routine but that's because I love it. I wear sunscreen outside but that's mostly because I'm a pale ginger and don't like resembling a lobster. I've never framed any of it as things I do to stay healthy with a transplant, and that works for me.
We have a dog at home, and I love to snuggle with her. I love to be outside whenever possible, besides grapefruit there isn't anything I don't eat specifically because of my transplant, I've gotten tattoos post transplant. I may be a little more rebellious than some but I'm also in my twenties and very much want to be in my twenties. I'm willing to take responsibility for things if they happen, and so far I've been really lucky in that I'm healthier than I've ever been.
My transplant doctor said early on to me that I got a transplant so I could go live my life, not live in a bubble. And that's what I do.
I agree!! Almost everything I do, I have always done. Except grapefruit. I had to quit drinking grapefruit soda water. So be it... (even down to bringing my own water to Kansas, but before that was because I am spoiled and don't like the taste of their water - HA!) My doctor did say almost the same thing to me. We didn't do this so you can't live life, we did it so you CAN!
Transplant Patient
I agree! Every time I bring my own food or drink to something people ask if its because I had a transplant. and my answer is usually nope, it's because I'm a snob 😂
ALiEm I totally agree with u I am 2.5 years have had a few complications but as u said I am living my life to the fullest. I to still wear my mask, eat better post TP, exercise loving on my rescue pup and ❤️💚❤️ being outdoors to. I am not living as a TP patient but I am cautious when I need to be.
LIVE YOUR BEST LIFE EVERY ONE💚🌻🌼🌈
Yes my Dr told me the same thing we did this LTP so u could LIVE LIFE..💚💚
I am curious if skin care falls under this for anyone... background : I had my first post-transplant facial last week. I didnt get them regularly before, I always did them myself since I have work for a facial plastic surgeon and skin care specialist before. However, this time I wanted to treat myself. So, I went to a medi-spa and submitted ahead of time that I could not tolerate any grapefruit. I knew, because of my background, that grapefruit is actually in a lot of skin care things. I wasn't sure if I needed to just avoid ingesting it, or if I needed to avoid it topically as well so I said I needed to avoid it all together. The aesthetician was great and did not use anything with grapefruit in it. She did ask me about "citrus" though... Honestly, I didn't know. I asked her to avoid that too. What would you do? (not asking medical advice - I am having this conversation with my pharmacist as well, just asking what do you do) I have celiac so I avoid all potential cross contaminant ingredients in foods and the term "citrus" just got me thinking. Does this come into play for living your best life at all?
Transplant Patient
In terms of citrus extract in products, I don't avoid it. Citrus in general is fine, I've been told, it's just grapefruit. (Don't quote me on that though. Every case is different and definitely check with your team if you have questions). I love the smell of citrus, so I often use citrus scented things. If there's an option and it's clearly labeled, I do more things like oranges or lemons but I'm not paranoid about it. I just don't eat my soap 😂
I LOVE grapefruit and was so sad about not being able to eat it. I asked my team and they said I could use it in any products I wanted, just not eat it. I had a grapefruit chapstick and they said it was fine. Of course check with your team. I think the point is being able to focus on what you can do and letting go of what you can’t (which is so much easier said than done!)
Some things I love to do to stay health and active are learning more about my nervous system and how to really enjoy my life. It’s easy when you’re told your health is in jeopardy to get super freaked out. I think we’d be weird if we didn’t! But now that I’ve had a transplant, it’s important to focus on what’s going well and enjoy the things that I really love in my life.
I love cooking yummy food, being outside on outdoor adventures with my family, traveling, and exercising. I’ve taken up pickleball with ladies at my church who are my mom’s age.
So to answer the question, I’m finding what’s fun and focusing on that.
Great question @Sdey0522