r/kidneytransplant

Hello

Is the guidelines accurate for life span with kidney transplant living donor or deceased donor ?
Especially if starting at 36/37?

Hello

My wife is having a transplant at 35, it is preemptive. EFGR is 25 and currently no symptoms.

I am asking if anyone else had a transplant at this age? If so what was your life like after ?

She loves her job, it’s office based.

She likes going on holiday, weekends away.

Likes to eat out, we go to restaurants 2/3 nights a week it’s something we both do.

How much will her life change?

hi all I was admitted on the 14th of April for a kidney transplant. I was discharged on the 29th. but readmitted the next day. I was discharged again on the 11th of May. I was on hospital for nearly a month. I didn't realise how dependant I had become. it was nice to have trained professionals on hand to respond to the seemingly daily changes that were happening and nice to simply chat to them. since the latest discharge ive found ive really missed the nursing staff. I am.not at a local hospital and am unlikely to see any of the nurses again and that fills me with a great deal of sadness. I am short of breath when walking but doctors have done a variety of tests and seem to believe that I am simply now unfit due to my extended stay in hospital. the meds are changing daily and ive gone from having really high blood pressure to low blood pressure. the fluid intake I have ro reach is now 4 litres but I am finding im urinating just as much. I get this is a sign the new kidney is working well. they have stopped all but one of the blopd pressure medications I was on. the immune suppressants doage is also being lowered. has anyone else had similar issues. I am finding my mood is very changeable and I can be very iritable especially when I am shirt of breath. There is also the sadness that im not going to.see any of the nurses again yet I also long for home and getting back into a familiar routine. how was everyone else's experience.

9 months post transpant it's tricky being on immunosuppressants and going out during the day time in the sun.

I've mostly been holding back and planning my days, keeping outdoor activities for the afternoons when the sun is out. Its starting to get in the way offlate

How do you guys handle going out during the day?

& what are some tips that can be followed to help the situation (type of sunscreen etc.)

TIA

After changing a Tacrolimus dose how long should we wait to recheck the Tacrolimus level? A time period of one week is enough??

Hello

I am a young kidney patient. I have a genetic condition where I grow kidney cancer tumors in my kidneys due to this condition my right kidney has been removed and part of my left kidney has been removed I am now left with part of one remaining kidney. This kidney has further tumors but they not at the size yet required for surgical intervention. Once they do meet the size required this part of a kidney will need to be removed and then face dialysis and waiting list for a transplant or a living donor transplant.

The medical team have suggested a medication that is meant to help stop the tumors growing but this medication causes anemia as side effects and due to it being NEWLY approved no one knows long term effects at all. You will need to take it life long or for as long as it helps keep the tumors from growing but once tumors start growing option goes back to surgery to remove the kidney and go on dialysis or living donor transplant . My choice of dialysis would be nocturnal daily at night while I sleep if I couldn’t have a transplant but we do have a living donor who is a 5/6 match with me. I do have a concern with the drug as the drug is very new and has unknown long term effects.

I would appreciate if people could advise what they would likely do in this situation and how transplant and dialysis has been for them etc?

Hi everyone, I've read a lot but never posted. For context I'm a 34(M) living in Australia. I was born with Alport Syndrome and after 2.5 years of dialysis I received a transplant almost one year ago in 2025. The kidney is doing wonderful with awesome blood results and I'm extremely grateful for that.

I found once the euphoria of the new kidney and being able to eat, drink and exercise without restriction wore off I found myself really struggling with anxiety attacks particularly around sleep. I found I would panic if I wasn't asleep at a certain time. I was prescribed mitazapine and that helped but I still always feel super edgy. I know a lot of the medications (Prednisolone, Tacrolimus and Mycophenalate) in particular can cause mood swings, but I feel like I'm losing the battle. I have had sessions with a renal psychologist and that was helpful but I just can't find that happy balance. I have diazepam for when it gets too much but I'm worried about using it as it's an addictive substance.

I just feel the extra pressure of being in my 30's and needing to work etc can just get too much. Anyone else feeling this way? Just wondering what works for you.

I live rurally in Australia and the closest person I know to my age around here is 55 and they all just retire and travel. So I don't have a young support group.

Thanks in advance

Has anyone experienced swollen feet during the day and at night, but it’s gone when you wake up in the morning?

How do you all manage to move jobs and change insurance after transplant? I’m currently at one of the best hospitals and I love my care team and my insurance is excellent. But my company maybe doing layoffs which means I need to start looking for new jobs and that means new insurance. I’m freaking out wondering if I will lose my current care team or benefits .

Anybody managed in similar circumstances ? Any advice on Medicare?

I've been reading posts for about a year knowing I'll need a transplant soon. I just finished testing with Northwestern Memorial Hospital in Chicago. Anyone willing to share where they had their transplant, happy with the team, is long term care what you expected? My donor is getting tested this month. I have no idea how that will go. Kidney care becomes a lifetime of meds and care. Is this what you expected? I realize the other two options are not the best. Thank you for input.

Hey all! I've been wanting to make a small support group where we hop in a zoom (or discord) whichever one is easier, and we just talk. It can be about our experiences, or whatever. It would be twice or once a month, where we vote on the day. Would anyone be interested?

Update: it is borderline tcell rejection!

I start my IV of steroids soon. I will have 3 total in hospital one tonight another tomorrow and last one Saturday.

I will ho home and start the prednisone taper from 60mg back to 5mg!

Got to watch the food I eat as I put on 17 pounds post transplant due to steroids and here we go again!!!

Hello,

I had my transplant nearly 4 months ago, while my recovery has been fast and good with only one week of mouth ulcers I’ve gotten back to normal at about the 2.5 month period.

I started long walks at about 1 month, I started back to work after 3 weeks (wfh), and my results have been great, efgr in the low 70s creatinine in the green too. I had a little low phosphorus but have been working on it with K phos.

Anyways last week I got my 3rd allosure result back 1.7!!!!!!

How, what, nooooo!

Instead of waiting 3 weeks for an outpatient biopsy me and my team pushed for admission so I’ve been in the hospital for 2.5 days. I had my biopsy yesterday and it was flown To a lab overnight.

I’ve been so anxious all week! How can everything look and feel so good but still have rejection?

I didn’t mention I have a zero mismatch kidney meaning the best possible kind, it’s incredibly difficult for my wb to find and start rejecting the kidney. Only possibility looks to be that because I’m youngish 37 and healthy our immune systems can put up a great fight (still my wbc was down to 1 it’s now at 3 far too low for fight)

My care team are shocked that we are here but we got admitted early and we are ready to tackle it if it is rejection.

Dreading the line in my arm if i need that, id rather it just be IV steroids!

If any of you have gone through this let me know how you handled it, I’m a little scared and it’s been lonely without my wife and baby daughter to see.

Thank you.

Just wanted to come on here and share my experience as a 34yo male with kidney disease. I had my second kidney transplant on Oct. 1st 2025. I had my previous transplant from my identical twin which lasted 9 years but unfortunately IGA Nephropathy had other plans for it. I did peritoneal dialysis and hemo for almost 2 years. My step mom donated for me through the NKR as she wasn’t a direct match and thankfully I was blessed with a great donor from the program. I’ve had both transplants at Indiana University Hospital in Indianapolis, IN. I’m lucky to be only a 15 minute drive from an amazing transplant team. I just want to say it’s not been easy but I would do it over again 100x even if it all ended tomorrow. I’ve been back to work since the start of 2026 and haven’t looked back. If I can answer any questions or help anyone I’d be happy to.

Hi all,

Just wondered if you guys had any tips about what should be in my go bag for when I get the call. Anything you would recommend?

Thanks

Hi everybody!

So the miracle happened, and I was transplanted on Saturday night. I really didn't expect to be called, especially as I was hyperimmune at 99.7 percent. I am very grateful.

The kidney seems to be starting to work slowly as my creatinine levels are going down. I had a very nasty bloody cough yesterday due to the intubation... coughing is horrible with a fresh wound. Now after some inhalations its better but i am very constipated and it make le want to cry ... I dont know why each time I had an opzration of the belly its the same story and constipation seems to depress me ... anyways i am sure it will be better a bit each day ... anyone had a similar experience ?

I’m so excited! I got the call yesterday and I’m on the waiting list! Praying for everyone on the list and those hoping to get on it. Feeling very blessed ❤️

i posted this on  already, i hope it is ok, if i post it here, too?

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Hi everyone,


Unfortunately, it happened (again) yesterday. I forgot to take my immunosuppressants on time last night. I fell asleep and forgot to set my alarm. As a result, I took them 5 or 6 hours late—I think 5.

This happened to me about a week and a half ago, and then it was even 6.5 hours late.

I spoke to my doctor back then, and he said that there would "never" be a rejection reaction. My other doctor even said that even if I missed a dose entirely, there wouldn't be a rejection reaction.

I had blood tests done 1.5 days after this missed dose, and they were fine.

Nevertheless, I'm feeling uncertain and a little panicky now. I want to have another blood test on Monday, but I'm nervous until then.

My hands also feel swollen, but they aren't. It's probably just my imagination.

If it's relevant, I've been a transplant recipient for about 8 years.

What are your experiences with starting immunosuppressants late? In your experience or knowledge, when does it become critical?

Thanks for your feedback!

I get so depressed and hungry from prednisone. I lost 20+ kg after being fat my whole life I don’t want to go back and I’m extremely scared of gaining weight because of the constant hunger and i never feel full. Don’t get me wrong I am super thankful for my new kidney, I just can’t help it when it comes to the prednisone it makes me crazy. Anyone have any tips to not be so angry and hungry?

Does anyone have a lot of trouble sleeping? Yesterday was my 2 year anniversary check up. It take the Myfortic,, mycophenolic, 2 dose at 6 pm. When I take it, I’m wide awake. Either I have a lot of trouble getting to sleep, or waking up, and not getting back to sleep, typically only get about 6 hours of sleep. The doctor said the Myfortic doesn’t have that side effect, but I read that it does. Beneydiril or melatonin doesn’t do anything. He wants my other doctor to subscribe something. I need a prescription medication.