General
Your Pre transplant survival guide
March 4, 2026
in General
In our international support group today we all reminisced back on those early days - the little things we were unable to do that now mean the world, what it's like relearning how to walk and eat, those early days relationships struggles.
We joked on the call about making a survival guide of the tips, tricks, things we wish we'd known (for @run_for_fun as he preps for transplant 😉)
What would you put on this list? What are the small things, the big things and all things in between that would have been helpful to know before transplant?
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@AliEm14 I'm flattered 😂 Let's start with the food....oysters, sashimi, foie gras, steak tartare - I guess I already know the answer - no raw food!
Since I'm celiac, for anyone who doesn't know yet, so my options are already limited.
In all seriousness, no grapes post-transplant? Did I hear that right? Fresh foods and fruit - check. I do make good protein-loaded pancakes. Unfortunately, I'm still hooked on sugar, don't miss the salt. What can you eat again afterwards that you had to cut out?
I started a to-do list of what to arrange before I'm unable to move and lift, items to stock up on, and apply for U.S. disability.
What have you learned that is easily overlooked or helped to make the transition easier? What do you wish you had known before you went to the hospital stay and after?
Looking forward to your advice.
PS: Is it allowed to get a tattoo afterwards?
I wish I known how long was the kidney transplants surgery. Was And pre testing i had to do before.how many days i had stayed in the hospital and when I be able to go home. What kind of food i can have after my surgery.
I feel like most things I didn’t know about getting a transplant are subjective and everyone’s different. For anyone needing diet info first ask your medical team and also look online. Def don’t eat at any buffets. I can’t eat lettuce/greens, salads or lunch meats, never did eat raw fish or raw meat. I can eat fresh fruits but try and stick to ones I can peel.
My biggest challenge after so many years is fatigue.
@22ncounting how long has it been since your transplant. I keep hearing that some folks experience fatigue long after. Since my celiac diagnosis it became extremely difficult to eat out, after the cirrhosis diagnosis I stopped going out due to the high sodium content in prepped food.
I am getting a tattoo on Wednesday. Okay'd by my transplant team. You know, @run_for_fun, you are so lucky you found us before transplant! I think it would have made a world of difference in my recovery. I felt very alone.
Eat sushi before. I miss it. Grapefruit. Trust me, you'll miss it whether you are a fan or not. No Valencia orange! Drink some Sunny D. It's gross, but off limits after. Cravings get weird after transplant. You want what you can't have.
I am two years post liver transplant and my energy is so much better. Fatigue every now and then though.
Transplant Patient
Grapefruit is a no. I’ve never heard grapes! Depending on what meds you’re on some of them have other interactions like pomegranate or blood oranges. I’m pretty much able to eat everything now, but like most people on the call yesterday said I definitely crave healthier.
I was told no tattoos for the first year, but after that my team cleared it as long as my labs were stable. Every team is different though, I’ve heard.
moving sucks for the first little while but do your PT! Seriously. They drilled it into my head when I was inpatient but I didn’t even realize it until recently and now I regret not being a better listener. And invest in firmer pillows - they help with propping yourself up. Heat pads will be your best friend for a while.
@run_for_fun 24 years this month. I had a simultaneous kidney and pancreas. They tell me this type transplant shouldn’t last this long. I am prob tired bc they’re wearing out. I can drink orange juice but no grapefruit due to the tacrolimous. No great loss as I’m not a fan. No blood oranges though. Yep, eating out can cause problems for me due to restaurants often not using proper food handling and cross contamination which can be risky for anyone on immune suppressants.
During dialysis my weight was a big issue
but I started exploring different salads 🥗 for dialysis days to take to the unit for lunch
it was a big shift as I never liked salad but it worked I lost 9 kg in 6 months or less and was put on the list !
I agree with @AliEm14. Do your PT! It is so frustrating and hard, but it pays off in the long run. Exercise your arms whenever. Keep moving.
Hello, I’m just chiming in on some stuff I can’t have because of drug interactions:
pomegranate, Seville or blood oranges, and artificial grape flavored juice (red colored).
the raw foods I miss are oysters and ceviche.
The main thing I miss is not having to be mindful about food borne illnesses every single time I dine out or buy groceries.
I have to be careful when grocery shopping to check all produce for bad spots, check expiration dates on EVERYTHING and check all canned items for dents.
All Lunchmeat can contain Listeria, all fresh produce can have E. Coli, and so on and so forth. It’s a risk factor that I can’t afford to ignore.
When I rarely dine out, I have to make sure to order something safe for me to eat, and that I eat it while it’s hot.
Having worked at a very popular fast food restaurant in the US, I can tell you that I will not eat fast food unless I can take it home and microwave it to death lol.
If you already have an existing medical condition with food restrictions, that may actually make it easier for you to be mindful post-transplant.
I know we are talking pre transplant, but something you might want to get for after is a medical alert bracelet. I wear one with my name, liver transplant, and my sirolimus on it. It also has my ICE numbers for my husband and my transplant hospital. Just in case anything happens and I can't speak up.
Here’s something else I remembered:
Transplant Hospital Go-Bag
Phone charger
Headphones
Eye glasses case
Ear plugs for sleep
Eye mask for sleep
Chapstick
Paperback books/magazines etc
Beanie hat
Comfortable Undergarments if your transplant team and situation allows.
Complete Outfit to leave hospital post-transplant
This was what I wished I’d had in the hospital, but my transplant was unplanned.
I’ll be the first to admit I packed way too much!! The only things I actually used were my toiletries, my very long phone charging cord and a warm fuzzy blanket. I had to remain in my hospital gown the entire time I was there so I didn’t need a change of clothes til I was released. A friend made me a “happy book” filled with photos of friends and family and I treasured that. At night and on days I was alone it gave me comfort to enjoy those pictures. I don’t d wish I had brought my ear buds to listen to music but other than I was good!!
Transplant Patient
oooh yes! I had a medical alert bracelet for my conditions pre transplant but got a new one post transplant. Finding one that fit my style and didn't look like an ugly medical alert bracelet was huge for me.
Transplant Patient
I listened to so much music in hospital! Reading was hard to keep my eyes open and focus long enough. I only wore a hospital gown the entire time I was inpatient because everything else felt way too tight, and I'm pretty sure I was discharged in my husband's t shirt. Also I brought a portable fan, which was a life saver for me. I always run hot, and I find hospitals way too warm and when I was uncomfortable I'd squirm which irritated my stitches so having a fan going was a way to cool me down. That and ice packs!