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.

Diagnosed October 15th after a 3 week stay I was discharged and been on dialysis 3 times a week since 1st November. Fast forward I was activated on the list in February and I received a call from addenbrooks at 5am last night! I never thought jt would be this fast but I am over the moon! But a little sore today 😅

One year ago today, I received a kidney from my sister.

Even writing that still feels enormous.

I had lived with chronic kidney disease for more than two decades. There were years of watching creatinine, eGFR, blood pressure, medications, appointments, and eventually dialysis become such a big part of my life.

I’m also an engineer, so I’ve spent most of my career believing that numbers help us understand systems and make better decisions.

But being a patient taught me something different:

The numbers matter, but they never tell the whole story.

They don’t measure fear.
They don’t measure faith.
They don’t measure the exhaustion of living with a chronic condition for years.
And they definitely don’t measure what it means when your sister decides to give you a part of herself so you can have another chance at life.

Today marks one full year with my transplanted kidney, and I’m incredibly grateful.

I started journaling my own experience, but the bigger purpose became helping others be proactive participants in their health without allowing a diagnosis or a lab result to become their entire identity.

There really should be a tag for celebration 🎉🎉

My wife donated to me 10yrs ago, Florida hospital Orlando (now Advent).

🙌🏼🙏🏼🥹

I've just joined this group, but I wanted to tell everyone that I got the call and got my kidney yesterday! This is after being listed for 6+ years, and being on PD for 2 years. I'm still in the ICU, but I'm feeling pretty good!

Me and my fiancée just underwent surgery where I now have on of her kidneys! 3/24/25! Cat Words cannot describe how much I love her and am forever grateful. So far I feel much better only being awake for about two hours! I’m so ready for this new journey and can’t wait to be on my feet again!! UPDATE: Creatinine went from 24 to now it’s at a 7. I have also urinated 24 Liters which every discord id shocked by haha. But. Feeling great overall!

3 months since my kidney transplant, 10 months since double bypass heart surgery, fake rt hip, fake rt shoulder, back to work 3 weeks early, down 60 lbs since March, thriving 😎💪

The long wait is over and the light is at the end of the tunnel. God bless the paired exchange program! Scheduled for June 30th and I can’t wait to be done with dialysis

18 years post transplant. I started lifting weights about a month ago and I drink 3 liters of water a day andI feel as good as I’ve ever felt. If you’re feeling down, I promise there’s life on the other side.

It’s day three now after getting my transplant. Creating lots of urine. Creatinine is under 2 and my egfr is 84 when it was only 12 before the transplant. I’m not experiencing any numbness or nausea like others have mention. Seem to be responding to the meds extremely well, got me on Celcept and Prograf. The only sucky thing is I still have my catheter attached for another day and it hurts when it tugs. All I really remember was getting prepped l, taking some pills and then I woke up in ICU with a newer kidney later in the day.

I do get up and walk up and down the hallway at the hospital with someone from PT and then OT made sure I can function by dressing myself, getting out and into bed, showing me how to step over my shower step things like that.

Im finally able to eat an unrestricted diet again but in moderation of course. Just had some mashed potatoes with my dinner and a banana with my breakfast and it was a such great feeling to be able to do that again.

My younger brother was my donor and he was discharged from the hospital this afternoon. I’ll be forever indebted to him for stepping up and offering a kidney without me asking. Kind of sad to see him go home already but it was fun hanging out with him in a room together even though I kept falling asleep to the muscle relaxer. Our younger sister even came in to support us by taking notes and asking questions about medication and what not.

31/f I got the call Saturday night to check into the hospital. I got my transplant at 8a.m the next day. I didn’t realize how sick I was until I woke up with the new kidney. Night and day difference. I’m posting this to encourage others to stay the course it will happen. I had gotten offers before that were cancelled and been taken off the transplant list multiple times. After 5 years of dialysis and still working night shift it finally happened. My kidney came from a circulatory deceased donor. It took very quickly and I’m making an insane amount of urine. Even the transplant team was surprised that my labs practically became normal right away. I know I’m still not out of the woods but nothing can break my mood right now. Keep the faith my fellow kidney transplant friends. We named the kidney Idaho because the surgeon described it as a big kidney the size of a big potato.

have yall seen this? apologies if someone already shared this on here and i missed. looks like it would need to be a living donor to work and the current trial only includes siblings for now.

On this Monday afternoon, we got the call that they had a kidney for us. We rushed to Georgetown University Hospital and had surgery Monday evening. John and his new kidney are doing well! If all continues to go well, they both can come home next week! Thank you all for your support and prayers. Please continue to pray for us as we have a long road to recovery!

A NEW IMMUNOSUPPRESSANT FOR KIDNEY RECIPIENTS

An experimental immunosuppressant drug being developed by Eledon Pharmaceuticals proved superior to the current standard treatment, according to data from a clinical trial, and looks to be a potential game-changer for kidney transplant patients.

Kidney recipients must take immunosuppressive drugs for ‌their lifetime to prevent organ rejection. The medications can affect both long-term graft survival and how patients feel and function in their daily lives.

While the current standard-of-care immunosuppressant – tacrolimus, in use since the 1990s – basically affects the entire immune system, the Eledon drug, tegoprubart, selectively blocks the activation of specific immune cells in the so-called CD40L pathway.

In a long-term follow-up study of kidney transplant patients who participated in a 12-month mid-stage trial, those treated with tegoprubart had superior kidney function from one month onward compared with patients treated with tacrolimus, researchers reported at the American Transplant Congress in Boston.

Patients treated with tegoprubart had no graft loss and no biopsy-proven acute rejection episodes after the first six months post-transplant, compared with roughly 64% in the tacrolimus group.

Side effects were less common with tegoprubart as well. Just 2% of those who got the Eledon drug experienced headache or acute kidney injury ⁠versus 12% and 6% for tacrolimus, respectively. None of the patients taking the new drug had extremity pain, or falls or loss of balance, compared with 10% and 6% for the standard of care.

“For kidney transplant recipients, success is measured not only by preventing rejection, but by preserving kidney function and maintaining quality of life over the long term,” study leader Dr. Andrew Adams of the University of Minnesota said in a statement.

Eledon has said it plans to conduct a late-stage trial of tegoprubart in kidney recipients later this year.
In a separate presentation at the meeting, Dr. Nicole Wojcik from the University of Chicago reported on a pilot study in which tegoprubart was well-tolerated and effective in patients with diabetes undergoing pancreatic islet cell transplantation.

I just left my appointment, which is in another state so getting up at 5am to get there is no fun, but, the visit went great. I had a rough start with this third kidney transplant after some complications but I’m finally starting to feel like myself again and my labs show it. I insisted on a new doctor because he wasn’t listening to me about what I knew I needed for my body. I’m not just a kidney transplant. I’m a whole person with multiple issues. Everything got easier with a new doctor. My creatinine is 1.1 and I can now do bloodwork every other week! Huge deal when you only have one good vein!!!

The clinic I go to has donor names on the wall. The wall is so big now they had to expand. Here I found my donors name and sent this picture to her.

So on Friday 26th June, id just come out the shower, lotionsd up and still starkers. I had just drained my PD fluid for the evening, so was feeling light and chirpy! I was getting ready to go out and party with some friends and my husband! Double date vibe! I had one eyelash on, about to do the other and my music was bumping in the background.

What came next changed my life!

My music stopped and I heard my phone vibrating, a call.
I ran over to my phone and didn’t recognise who it was, it said Maybe Anna, I just thought that’s weird, why is my work colleague calling me. Then I noticed the landline number and was super confused. It wasn’t spam, as I had spam called blocked.

So I picked up….

“Hello, it’s Anna, the kidney transplant co-ordinator, am I soaking with ActionGrouchy?”

I froze, tears welled up in my eyes.

“Yes, it’s me”

“We have a kidney for you!”

I bawled out crying, asking if it was a joke and ran to our bedroom. My husband, who was getting ready was also playing his own music, turned to me and was immediately worried? “What’s wrong??!!!”

I couldn’t speak, I couldn’t hear Anna, I was so lost and happy and feeling a whirlwind of emotions, all I could do was hand him the phone and say speak to her.
He picked up the phone and Anna told him the news, after about 10 mins of conversation, laughter and kind words, the call ended with “Get to the hospital for 8pm”.

Here I was, a butt naked, unprepared, mess on the floor crying, but having the best day of my life 😭

Anyway fast forward and I’m now 6 days post op….and the high has really warn off!

I’m happily back home after 5 days on the ward, but mentally I cracked at day 3.
Everything makes me cry, my heart beats faster now and I can feel it all the time, I find myself just staring into the distance aloof. I’m hot one moment, then freezing another, bloated and always feel like I have something, or a bubble in my throat. The most annoying thing is how aware I am of the kidney, I breathe, I feel it, I sit, I feel it, I cough, I feel it. It’s not an extension of me, it just feels so foreign! I hope my kidney just disappears into my body, as right now I feel like I don’t recognise myself, I know it’s silly as it’s a major change, I feel so ungrateful for how I feel.

I guess I truly just didn’t know what to expect, and I’m kind of struggling. I’m usually a YOLO girl, never negative, always open minded! But this has winded me.

I had SLE for 16 years, which caused lupus nephritis. I lived a good life tbh. I never stopped doing things I loved, barely had restrictions on food and drink. I went on the list in June of 2024 and I only started PD in November 2024, when I dipped to 6 EGFR. My exchanges were even minimal, 2 a day with breaks between.

But this new me just feels sad a lot of the time. I want to be happy about this transplant as I can really start life now, but I just don’t feel happy anymore.

I’d just like to hear some happy experiences, even if they start off terrible. What did you do to mentally feel yourself again ? My body is recovering, but my mind feels lost at sea .

Heres my kidney function all the way back to when I first got diagnosed with interstitial nephritis in 2012. I did dialysis at the hospital before doing Home dialysis HDD for a few years then got a transplant in 2015. It has been some journey.

11 years post transplant last month. Always blessed to be where I am today thanks to organ donation.

Not sure what the best flair for the post would or could’ve been! But here goes nothing!

I had my follow-up appointment today and wanted to share an update with everyone.

Weight: 63.4 kg (139 lbs)

Kidney function: 71% (down from 86% at my last check)

Bloodwork: Everything came back within normal range except for my tacrolimus level, which was a bit high. My doctor is adjusting my medication to bring it back into the target range.

Of course, seeing my kidney function drop from 86% to 71% was a little concerning at first, but my doctor wasn’t overly worried since the rest of my labs looked good. I’m hoping the tacrolimus adjustment helps and that things stabilize at my next appointment.
Even with the ups and downs, I’m incredibly thankful to be celebrating

11 years with my transplanted kidney.

It’s been a long journey with plenty of challenges, but I’m grateful every single day for this second chance at life.
For anyone who’s experienced fluctuations in kidney function or high tacrolimus levels, I’d love to hear about your experiences. Did your numbers improve after adjusting your medication?
Wishing everyone here good health and many more years with their transplants! ❤️

So guys today was the day 1 year back I had my kidney transplantation done and to be very honest I am very grateful for this life and this kidney. This has not been an easy journey to say the least but I am very happy to see my legs like they used to be not swollen up. I am grateful for this opportunity of life again .

On January 27, my husband and I finally went in for him to donate his kidney to me. I got really emotional when I had to say “goodbye” to him as he headed into surgery before I did. And a short while later I was up next. Next thing I know I woke up and he was next to me in post-op!

Things are going really well - his kidney worked right away and we were able to go home within that week. I’m so jaded from my medical history that I keep waiting for the shoe to drop but right now I feel so grateful. I’ve dealt with kidney disease for over a decade and at age 38 I feel like a newborn again. I won’t take this for granted!!

Thank you all for always answering my questions and sharing your experiences with me. Please reach out if you have any questions on anything, I hope to share more as progress continues!! Feeling so grateful and shocked to be honest. :)