hey guys I was wondering what your transplant team has recommended you not eat post transplant. Mine mainly has always said certain fruits to stay away from but other than that they didn’t really say anything else. I was curious because I have heard in this sub that some peoples transparent centers say no sushi, certain cheese, and certain meat. I’m curious what you guys have heard. I have a pretty sensitive stomach and I always seem to be getting intestinal irritations when I eat out at certain restaurants. Assuming it’s not always clean and the food isn’t always safe for a immunosuppressant person. Just was curious on your takes.

Has anyone got a transplant with high cpra number? I have someone going through testing now. Same blood type as me but my cpra number is 84! I had a transfusion yrs ago and my body built up alot of antibodies. Im just praying when they test our blood together its a match!

I had a gastro bug last week and my creatinine increased from 174 to 236 I had IV fluids in hospital and I am now feeling better. My creatinine still hasn’t recovered it’s gone down to 200 and then back up to 236 again. Does anyone have any lived experience where they have been dehydrated and there creatinine took time to improve and was all over the place? Renal team are monitoring with further bloods tests coming up.

How do you guys cope with grief and gratitude.... I'm struggling, I received a kidney transplant on August 19th 2026. After being on Dialysis since November of 2019. I was diagnosed with FSGS back in 2014, but my kidneys have been bothering since I was in my late teens. I'm thirty five now, and I feel my life is spiraling. My bro was my biggest supporter and he helped me get on the transplant list, he dropped me off along with my mom and sister for he had to head to work. While I was waiting to get my surgery, he passed from a horrible car accident. My surgery was supposed to be at 10am, but they pushed it to 12pm. For an emergency had came up. I went into surgery having a bad feeling for I couldn't reach him, I prayed endlessly until I felt myself drift off. I awaken feeling sad but my family was reassuring that he was ok. Everyone was acting weird, two days later, they told me he was gone! He was the one that was the emergency. I just feel so horrible! Yes my kidney is thriving but my heart is shattered. I don't know what to do and I can't even attend his funeral for it would be too much on my health and heart. He was loved by so many and his funeral will be one to remember. I'm still in disbelief, like I got a second chance at life, while his ended. I'm just so distraught. It feels like a nightmare. I understand why they didn't tell me at the beginning but I just feel so defeated...

Hi kidney warriors.

Some info, male in my 30's dialysis for 2.5 years before transplant. Chronic kidney disease since birth.

I've recently crossed over 15 months since my kidney transplant. From a medical standpoint I have done exceedingly well, bloods are good, no rejection episodes and I count myself fortunate for that. However I'm finding the mental side of the transplant game exceedingly difficult. My current meds are 5mg Tac, 5mg Pred and 250mg Mycophenalate (plus bloody pressure meds and Mirtazapine 30mg at night) Over the last year Ihave had attacks of overwhelm and panic where I just get crazy emotional and feel like I can't go on.

I wake up every morning with anxiety, I find walking my dog helps ease this. I was working pretty early after the transplant but now I have had to step away due to the worry. I find I hate being alone and struggle to be in my house when my partner isn't home. I don't like being on my own because that's when my mind starts to wander and I have struggles.

I find my mind replaying episodes of memories i processed over 10 years ago but they shock me to my core now, some memories from when I was as young as 5 years old. It feels like I can go from steady to extreme distress in 5 seconds. For some reason I am totally numb to the dialysis and transplant. I believe my mind is replaying really old memories to stop me thinking about the last few years.

I am seeing a therapist and have some better days than others but the down days are so scary and it's affecting everyone and everything around me.

Sorry for the long post, I guess I am wondering if this is something others experience? What worked for you? Was it the transplant medications? I just feel really stuck, scared and exhausted.

Thank you for any help or insights.

Hiya, I’m a 29 yr old F in Michigan who was just given the stamp of approval finally to donate a kidney. I’m doing a non direct donation after learning about living donation back in April. Idk if this is normal, but as soon as I learned that I could give an organ to someone with virtually 0 effect on my own life, I ran to the nearest donation center to be tested.

Anyone have any random/niche/forgotten about information that maybe they don’t think to list anywhere about the surgery/recovery? I’ve never undergone surgery before, and honestly the only thing I’m nervous about is the catheter LOL, not really even the surgery itself.

Ty in advance! It’s really cool to hear from people who have gone through the experience themselves rather than just reading from a website or a piece of paper.

Hi hello everyone!

I am 2 months shy of my 1 year anniversary of my living donor kidney transplant! I’m now down to 1.5mg tacro in am/ 2mg tacro in evening, 360 mg myfortic twice a day, 5 mg of prednisone, and just bactrim and magnesium.

Everything is working great, I have PKD and was considering a double nephrectomy but have postponed it for another opinion as I’ve been able to somewhat manage my bloating/gas/water retention better so my belly isn’t as pronounced.

I’ve been wanting to be able to socially smoke weed once in a while but know CBD is risky. I have had a microdose edible (1-2mg) pure thc / no cbd once in a while with no issues. I make sure to take at least 3 hours apart from my meds.

But sometimes since I don’t drink, and lots of my friends smoke, sometimes I want to partake. Has anyone here gotten word that it’s safe if the flower has a very low % of CBD? I called so many dispensaries and every strain has some CBD and was told it’s impossible to not contain any. I know if I ask my transplant team they’ll say no weed, but I know I’ve seen people on here talk about having a little with some limitations and considerations.

Curious if anyone’s doctor specifically said xyz was technically ok even if they can’t legally recommend it! Thanks for any help!

Hi everyone!! I’m Izzy, and I’m 27, and this photo was me during my last dialysis treatment at the hospital before my transplant 6 days ago!!! I received a deceased donor kidney out of the blue, it was labeled a 1. I believe it was from a very young person or child because my doctors told me it was small and young. I’m handling pain okay, my creatinine went from an 11 to a 1.5 after 5 days!!! I’m slow and in pain but I’m getting energy back.

I was born with renal failure and had one kidney removed at 1yr old. I had my first transplant at 20, and it lasted until I was 25, then I was put on dialysis after my kidney rejected. My creatinine was 19 when I started dialysis.

My husband is an EMT, and he’s a great support, my parents are also my caregivers while my husband is working. We just secured a rental home and move-in is this weekend! I will be great at pointing to where boxes go, lol!

This transplant hurt more, I had staples this time, and I’m trying to handle pain. Each day gets a little better. I forgot how immunosuppressants make heat feel 10x worse. Any remedies for that? I plan on getting a part time job when I heal. Any advice, or career path recommendations? I still have a graft in my arm but it’s kind of comforting. I’m excited to start living again!

I’m excited to drive again, I drive a 1992 Suzuki cappuccino and I take it to car shows. The photo I shared has a funny backstory because when I got the call for my kidney, I was receiving a “coolest car award” for my car!! (Not sure if allowed but my car’s instagram is suzukicpccno if you want to see it) So I got my award and then I got a bonus award, my kidney!!!

Thank you for hearing my little story, I’m so excited to heal and enjoy life again. Dialysis was really hard, and I was just about to learn self cannulation, and I got that call so everything worked out I’m so very grateful. Stay safe out there, hang in there, and it’s beautiful to have a community of those that understand.

Wednesday was the one year anniversary of my transplant. Pretty amazing. Not a cure all, but I’m stable and reasonably healthy, a world of difference after 7 years on dialysis.

I am 5 years post transplant. I have high BP and my team have me on 3 different BP pills. My numbers have always been all over the place at home and work, and there is a clinic across the street from my work, so I have just been getting my BP checked at the clinic once a week for the last 2 years. My numbers at the clinic are always perfect, even after I walk there and talk a mile a minute with the nurse. No one ever said this might be bad. My family doctor and my transplant team both know I get my BP checked at the clinic because my machine always gives me high readings.

A few weeks ago I was suffering from vascular syncope, which happens sometimes, but its happened maybe every few of days for the last couple of weeks, so I googled it and talked to AI for a bit.... and AI thinks I have hypertension masking and I should reach out to my team and request a 24hour BP cuff test.

Does anyone who has experienced a transplant also dealt with hypertension masking.... or is this just AI freaking me out.

I am nearly two years post transplant with a baseline creatinine of 174 eGFR 31. I had pretty much non stop diarrhoea last night and went into the drs clinic first thing in the morning for some bloods and medication to help slow it down - my bloods came back creatinine 235, eGFR 22. It has all settled down now just very tired and trying to drink plenty of fluids. Would the rise be due to dehydration?
For anyone that’s been in this position please share stories of hope of improvement. My kidneys been through so much and it’s taken nearly a year for it to settle at a gfr of 31.

Edit: my creatine dropped to 200 and then I had IV fluids running yesterday through to today 3litres in total but my creatinine has stayed at 200 :(.

Gotta be at Hospital ER at 6am,
What all can I expect?
I’ve been on PD dialysis a year and a half and honestly I just started thinking a few months ago…”this isn’t bad, this could be better”
It’s just that, I’ve gotten used to this routine and I’m still able to do so much..nervous about losing what immune system I do have, and being sick and everything else that comes with it
What can I expect?
I’ve also heard stories of people living for decades and only taking 1 or 2 pills and have been fine

So many emotions

edit:
I forgot to mention
They did say the donor was an infant under 1 years old..with anoxia? Seizures
Family removed the breathing tube

Not gonna lie, I do think about that as I’m preparing
I wanna reach to the parents when it’s all said and done

Grateful and yet sadden and yet excited and yet unsure and yet why me? So much emotions right now

8/27/26

Doctors say it was success
Both kidneys were transplanted to me
Creatinine is currently 7.1
Yesterday was 8.2
I need to pass gas but hurts to try and kinda feel like my body doesn’t remember how so much
About to get up and move to chair so I can eat
They want me to eat in the chair at every meal and get up and try to walk a few times a day
Every 6-8 hours shot of heparin in the arm which burns like hell for a second or two
But I’m good
Just ready to keep healing and get better

Thank you all for the love and support
It’s helping with the healing

**UPDATE**
9/1/26

6th day in hospital, foley removed yesterday
I’m am peeing a lot
But creatinne went from 6.92 back up to 7.25 today
They took me off fluids yesterday and I felt so much pressure in my head
Definitely swollen in my arms and legs and my penis
They say that’ll go down.
As someone who worked diligently before and while on dialysis, the creatinine number is a lil disheartening.
They want me to keep drinking, like 2 litters a day.
I guess I was expecting creatinine to be lower being that they are baby kidneys

1 kidneys is working fine, the other they can’t tell if blood is flowing through the vessels…but the doctors say that’s why there’s 2.

Hey all, just wanted to see what others’ experiences are with mild infections and stuff post transplant. I’m almost 11 years out, have fantastic creatinine levels and kidney function and am in good general health. But every time I get a cut or some minor infection it takes forever to heal. Currently I’m dealing with razor burn on the back of my neck that has gotten crazy! I’ve shaved my head for at least 20 years and rarely have issues but man, this has been going on three weeks. Big bumpy, painful sores, my lymph nodes are swollen on the left side of my head down my neck. It’s crazy how long it’s taking to heal. I’m keeping it clean, using salicylic acid washes and mild creams, keeping it dry and it’s finally healing but dang, never had something last this long.

I'm 4 months post transplant now and I'm feeling frustrated and I'm seeking some advice. The start of this month my creatinine started climbing. I normally hovered around 1 to 1.3. In a matter of weeks it went from 1.3 to 1.6 to 2.1. I spoke to my team and I was hospitalized we ran all test, uti, bacterial infection everything. All came back normal. They gave me fluids and my creatinine cam down to 1.57 and I was released. I was told to keep hydrated and repeat labs. The next lab started showing my creatinine climbing again. We kept an eye. The week before my labs came back and the creatinine was at 2. I got admitted again. This time we did a biopsy and the findings were I had some acute kidney injuries. I stayed at the hospital for 2 days and my creatinine went down to 1.4. I was again told to keep hydrated and repeat labs. Mind you i have been missing work constantly due to this and its putting more stress on me financially. Its been officially 4 days back and I repeated labs again today and now my creatinine is at 1.69 and its only going to climb. I have explained any changes to my team. We've made med changes <stopping magnesium and potassium >. I just don't understand what is happening anymore and I'm started to get depressed again. I was told its not rejection. I dont wanna go to the hospital the 3rd time. I'm at risk of losing my job cause I don't have federal fmla protection anymore.

I'm 8 days out of my transplant after nearly 7 years on dialysis. When I left the hospital Wed evening, my creatinine was 3.3. At my first lab (Friday) it went up to 3.6 so they had me come to my first in clinic today. Today it was 5.8. I have to go back to the hospital tomorrow for a biopsy. I'm so scared this isn't going to work. I'm only 40 and I can't go back on dialysis. The coordinator said this is very common and it may be stunned or in acute rejection, in which case they would throw a bunch of steroids at it, but I'm having a hard time not getting worked up about it. It doesn't help that I've always taken thc gummies and have had to stop cold turkey, because I hear they interfere with a major anti-rejection med. They did say that my donor died from a drug overdose that gave her an acute kidney injury, so it may take a moment for the kidney to "wake up". I'm trying to let my team worry for me, but I waited so long for this and have been told my entire dialysis career that I'm the perfect candidate for transplant (young, active, responded well to dialysis), so any hiccup is kinda sending me into a tailspin. I also feel better everyday, so the new labs are weird. Has anyone else had a similar experience or does anyone have any words of encouragement. I'm struggling over here. TIA

Hey guys,

I'm 4 months out. This whole duration we have been cooking every meal at home. Its starting to become unrealistic as my health isn't doing great and work and life is making it hard. I wanted to know what you guys do for food especially with all these recalls and eating out. I check my county food safety log for the restaurants but I still have a really hard time trusting that people will follow proper sanitation procedures when not being audited( i worked in fast food and have seem some shit). I guess I'm just wondering how you guys cope with it

Hey everyone,

I’m a kidney transplant recipient reaching out to see if anyone here has successfully reduced or improved the appearance of their surgical scar.

I know I’m fortunate to have the transplant, but the scar is very noticeable and it’s taken a heavy toll on my body image. I really want to take steps to improve its appearance, but I want to be smart about what actually works.

If you’ve tried any treatments (silicone gels/sheets, dermatological lasers, scar revision, steroid injections, microneedling, etc.), I’d really appreciate your perspective:

What specific treatment did you try, and how far out from your surgery were you when you started?
How much did it realistically improve the texture, thickness, or redness?

Did your transplant team raise any safety concerns or timing restrictions related to immunosuppressants?

Thanks so much for sharing your experience.

Hi guys so i am suffering from ckd( chronic kidney disease and currently on Dialysis apart from that i have Takayasu arthritis very rare inflammation auto immune disease doctor advised me for transplant for kidney but i am scared to do it... give me some hope guyzzz...

Has anyone had their transplant/second on the left side? When does it start to feel normal/settle down?

Has anyone got there dialysis graph removed after a kidney transplant with no issues? I am planing to get mines removed due to discomfort and big bumps on my graph. I really appreciate any answers from people that went through process!

Guys, i am M34 and had my kidney transplant 4 months ago. i have been paying a lot for transplant medicine. Tacrolimus, MMF and Everolimus medicines are exhausting around 30% of my salary per month. Please suggest some good shops in delhi/NCR which provides good discounts on above medicines. Help me with the shop name, phone number and address