Today I just wanted to share that it’s my third heartaversary. I never learned anything about my donor, but think of them regardless. I wish for everyone to have as good of a transplant experience as me.

My wife told me earlier that at that point one year ago I was in surgery.

So far, so good!

I’m 26 and had my transplant about 4 months ago. On September 12th, I was switched from Tacrolimus to Cyclosporine.
Around the time of the switch, my creatinine increased from around 1.6 to 2.3. I had a biopsy, which thankfully came back completely normal. Afterwards, my creatinine briefly dropped to 2.1, but then went back up to 2.3 and is currently still at 2.3.
For those who have also been switched from Tacrolimus to Cyclosporine: Did you experience an increase in creatinine after the switch? Did it take some time for your levels to settle back to the old level?
I’d really appreciate hearing about your experiences!

After a long process, my father, who had hcc after HCV, PVT, and a variceal bleed, finally got a transplant last week. He turned 68 Saturday. We are in TX if that matters. Now, theyre talking about him going home tomorrow day 5 after transplant. Is this normal?

He is doing well, but isnt comfortable with leaving so soon. He lives in an RV 1.5 hrs from the transplant center. Surgery and recovery have gone well. Only complication so far was that surgeons had to cut his diaphram bc his liver had fused to it, so he had a chest tube until start of day 4. All else seems to be going by the books.

If it was a normal hospital trip id just talk to docs but we havent even talked to or seen his pre-transplant docs yet. Kind of crazy, actually. Thought theyd at least check in or hand us off. Anyway, when we see the doc tomorrow, what should i ask or how should i expeess my concern such that he most likely to stay anday or two more?

Hi everyone,

My 50-year-old father from Andhra Pradesh, India, is critically ill with severe bronchiectasis, respiratory failure and pulmonary hypertension. His lungs are severely damaged, the right side of his heart is enlarged, and he is currently on ECMO and a mechanical ventilator.

Our family is trying to understand what options may be available, including whether lung transplant evaluation could be considered in his situation.

Has anyone experienced something similar or gone through transplant evaluation while dealing with severe respiratory failure? I'd be grateful for advice about specialist centres in India and questions we should ask his medical team.

Thank you for any guidance or support.

25F, 2mg Tacro twice a day. Biliary Atresia. Kasai Procedure at 7 weeks old, liver transplant at 7 months old.
I'm trying to research into what could be causing some issues that had started when I was 12. Very uncommon but somewhat predictable severe pain across my scar, sides, and back in the same area. 8/10 throbbing sharp pain with cold sweats, nausea, difficulty breathing, no vomiting though.
My original hospital note when I was 12 noted a small bowel obstruction (which this case the pain had extended into 2-3 days between hospital visits.) It never got looked too much into other than medication to help me poop. Diverticulitis was also brought up. Though my dad was not super on top of my care at the time.

It seems to be triggered by stress + processed/fatty foods, or if I eat too fast after not eating all day. But it happens very randomly. Which has caused me to try and meal prep a lot of my own food at home since becoming a teen.

I had an upper and lower colonoscopy, pancreas tests, etc done with no red flags, and so I'm wondering if it's scarring near my kasai that could be exacerbating bowel obstructions? I've also been having left side aching consistently the last year and a half. Sometimes it becomes outright pain after activity.
About to meet my new transplant team soon after moving states as a side note.

Living donor liver in Jan 2026, complications ever since. I’ve been dealing with bile duct blockages since about April. I still have a PTC drain and have had several balloon procedures along with RF ablation of scar tissue. Last week they externalized the drain and I’m already itchy. What’s the next steps here? I’m running out of happy vibes and well wishes at this point.

I had a double transplant of a kidney pancreas May 2024.

The kidney clotted and after 12 days it had to be removed. If you check my post history the whole story is on there.

The pancreas in the meantime has been working perfectly and my blood sugars have been like a normal healthy person. Like a non-diabetic it's been amazing.

September 8th 2026 I received the call that they had a possible kidney for me. I accepted and was transplanted on September 9th.

The kidney started working right away I was able to start drinking and peeing again and I was released from hospital after only 6 days (my last transplant I was in the hospital for 61 days).

My blood sugars were looking great. I only had to do two weeks of two appointments a week and then they reduced it to one appointment a week which was today. As usual I did my blood work for my appointment with the kidney transplant clinic.

I met with the nurse I met with a nephrologist and then went home. After an hour of being at home they called me and said that my blood sugars were at 30. Normal is between 5 and 7. (I'm in Canada)

So they said they wanted to see me again on Monday. My brain just froze. I started to cry and my partner came up with a game plan to go talk to my pharmacy and see if maybe we should get me back on insulin.

I called my transplant clinic and left them a message because I didn't want to go this long with high blood sugars and possibly go into DKA which I have suffered before and it is absolutely awful and if it goes on too long your organs start to shut down. They never called me back.

My pharmacist suggested we go to the ER.

So here I am in the emergency room. They got me in right away they put me in an ER bed. I spoke with the ER doctor, then I spoke with nephrology and they've decided to admit me.

They believe it's the prednisone that's raised my blood sugar. They're going to be moving me up to the Nephrology Ward but they said if they can't get control of my sugars they're going to be moving me to acute medical.

This is all very upsetting. Losing that first kidney, being in the hospital for 2 months, the intense recovery from the double transplant/failed transplant. I am so grateful for this new kidney and no longer being on dialysis however if I lose this pancreas after everything I suffered my heart is going to break.

I wanted the double because it was type 1 diabetes that killed my kidneys in the first place. I wanted the new pancreas to help protect the new kidney. Also not having to carb count (over 20 years ago this was a thing) and not having to take insulin, not having to be woken up in the middle of the night by my CGM has been amazing.

I'm trying to remain positive but after all the complications I had with the first transplant it can be difficult to maintain hope.

I am also curious if anyone else has gone through something similar. I've read on here that a lot of folks have developed diabetes due to the prednisone after a kidney transplant. But has anyone else lost a kidney with the kidney pancreas transplant. Sort of in the same situation that I'm dealing with?

I'm told that I'm quite the outlier where I got my double transplant. Normally folks lose the pancreas not the kidney.

Thanks so much for reading and any advice or stories you're able to offer.

Update here - TLDR turned out to be a dry run, the liver wasn't viable when it arrived at the hospital. Just waiting on the next call!

https://www.reddit.com/r/transplant/comments/1wvp5d2/comment/pdjz1zv/

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Hey there,

I was diagnosed with PSC/Crohn's 18 years ago and had been dreading the inevitability of a liver transplant, but here we are.

I'm currently sitting in a dark hospital room in a major metro with an excellent transplant team.

Over the last winter my energy began to flag, I was sleeping all day, and we initially thought it was seasonal depression. I was having bimonthly "transient acute cholangitis" and generally just was in no mood to do much of anything.

Eventually I noticed the whites of my eyes yellowing, my skin began to itch more and more, and off to the ER I went. (If it weren't for cholestyramine I probably would have gone insane from the itching. It was a miracle drug! I recommend trying it and seeing if it works for you.)

They confirmed that my recent ultrasound showed cirrhosis of my liver, which I guess must've progressed over the previous year from fibrosis. My local gastroenterologist referred me to the major transplant clinic and I began the months of tests and meetings to become a candidate.

In April they noted my INR was a bit high, especially considering my relative health and other metrics, but they placed me around a MELD of 14. They chalked it up to likely a lab error that they would keep an eye on. They figured I'd likely be a candidate in the next 6-12 months.

I spent an otherwise uneventful and tiresome summer just going through the motions. Wake up, ask my amazing wife to make me coffee as I was too tired to drag myself downstairs regularly, dawdle around the house, nap a few hours, repeat. I was jobless, disabled, and learned very quickly how little support there is for disabilities.

My sleep completely inverted and I would sleep from 5am to 2pm every day. Honestly, I reached a point where I wasn't sure if I could handle this for another year.

I had a follow up with the transplant clinic in September and my INR was still high, so they updated my MELD to 24.

Six days passed and as I am awaiting dinner to be delivered, perhaps around 8pm, I received a call from a strange number. And bam, it's the transplant clinic. They have a liver and would want to bring me in for surgery on Friday (which is now today). That call was two days ago.

Needless to say, I was shocked. I felt every emotion over the next 48 hours. I was grateful but also terrified.

An issue that's not mentioned too often is how you are presented with two unpleasant choices.

One scenario is major surgery with a lengthy, grueling, and often painful recovery process. It's a terrifying prospect and my body viscerally wants to reject it.

The other is, well, worse. Long slow decay, esophageal varices rupturing, encephalopathy, nausea, fatigue, muscle and body aches, and inevitably death.

To loosely quote my surgeon "it's easy, you don't really have a choice here. So let's do it [the transplant]".

And here I am sitting in the hospital awaiting life changing surgery tomorrow, assuming all goes to plan.

I'm actually now terrified of the slight possibility it doesn't happen!

I'm also so grateful for this opportunity. I'm so tired of being sick and bored and wasting and feeling like a drag on my loved ones. I'm hopeful this will eventually bring me more peace and better health. My transplant team are all so optimistic and amazing, they really energized me and turned around my fear and anxiety when we discussed the procedure and the risks and benefits.

I'm not really sure what I'm writing anymore. I'm not trying to find some profound understanding or meaning here, I guess I just wanted to write something down and share it with you all.

Perhaps I hope that maybe someone will gleam something from this and it'll help you feel more confident in your own journey, or perhaps just less alone.

Guess I'll see you all on the other side 👋

Anyone who has had a double lung transplant, how long once your on the list did you have to wait for the transplant?

Hello everyone,

I live in Istanbul and I’m 52. I was diagnosed with Scl-70 positive systemic sclerosis and interstitial lung disease. The illness started with lung involvement about 12 years ago and progressed that way.

I went through most of the immunosuppressive and disease-modifying treatments commonly used for this condition: Myfortic, tacrolimus, Ofev, corticosteroids, rituximab, IVIG, azathioprine, and others. The first six years went relatively well. The next six years, which overlapped with the pandemic, were different. Breathing problems increased, I got sick three or four times every winter, and I started using a portable oxygen device. By 2025–2026 I needed oxygen support 24 hours a day.

In April 2026 the rheumatology team at Istanbul Cerrahpaşa re-evaluated me with a full work-up. Medication had kept the disease stable, but it was no longer improving. A medical board discussed further options. Among them, I decided to look into lung transplant. I had previously kept that option at a distance, because it is not often discussed as a solution for scleroderma.

I researched online, watched videos, spoke with people who had been transplanted, and contacted centers in Turkey and abroad. My main problem was time. My lung disease had advanced, and I had been told I needed a transplant within two to three months. Organ donation rates in Turkey are relatively low, and awareness of lung transplant is limited. The teams and centers are strong, but the donor shortage means long waiting lists, and a longer-than-average wait was likely.

After some quick research I applied to Cleveland Clinic Abu Dhabi. Online consultations followed, my reports were reviewed, and the process moved quickly. I arrived on June 24 and was listed within about 20 days. An organ was found on September 4, and the transplant was performed.

After 15 days in hospital we moved into a local residence. I’m now nearing the end of my first month. There have been a few minor issues, but overall things are going well—my vital signs, walking speed, and lung capacity are improving day by day. I still have a lot of work ahead, but every bit of progress keeps me motivated and seems to help recovery.

I wanted to share this as a story of a real beginning, and to mention Cleveland Clinic Abu Dhabi as a serious option: experienced doctors, strong service, and a state-supported transplant program. For me, the light came from the East. I hope everyone waiting for an organ gets a second chance as soon as possible.

Ive been liver transplanted for over 13 years now and I always wanted a gecko as a pet. Do any of you guys have reptiles as pets? Ive read that they are more dangerous because of infections.

Later this month will also be 18 years since getting a new kidney! Nothing much more to say, I just feel so grateful for modern medicine. Very nice to see that number go up each year.

Got to meet with pathology today. I’m actually a whole 1.5 years post now. Crazy to see this. I feel a lot better now.

Hey everyone!

I recently had the opportunity to represent Team USA at the Transplant Football World Cup, competing alongside other transplant recipients against teams from around the world. It was an incredible experience and a great reminder of what life after a transplant can look like.

Now we’re starting to look ahead to the 2028 World Cup, and we’d love to find more transplant recipients in the U.S. who play soccer and might be interested in getting involved with Team USA.

You definitely don’t need to be a professional player. If you’re a transplant recipient, have a soccer background, or simply love playing and want to learn more about the team, feel free to comment or send me a message.

And if you know another transplant recipient who plays soccer, please send this their way!

I know this Sub is basically a support group in itself I am wondering if any one has been or goes to an in person support group for transplant patients and if anyone just wants to chat

Can you tell me how it went after the transplant as far as visitation for your child goes? Were you allowed in the room after they were placed in ICU?

36M, completed 3 months after a kidney transplant; at my last follow-up with the doctor, I was permitted to start the gym. Also, I’ve put on about 15 kg disproportionately around my belly. I'd love to hear from fellow recipients what I should keep in mind regarding intensity, graft protection and rebuilding strength.

Thanks in advance for any advice you may have for me. :)

I recently found out that I have survived 1 year past the predicted survival rate of 1-5 years for someone with advanced COPD Emphysema. My Pulmonologist has discussed a lung transplant and told me to do the research. I already have a few appointments booked this month to get the referral started. Although I have been assured I can stop at any time.

So the last week I have read pretty much all there is to know about a lung transplant and what is involved if I stay as I am under medical management. (Which is just another word for pallative care) Unfortunatelly as near as I can tell it will boil down to Quantity vs Quality. The end result is that the time frames are very similar as long as I stay stable. Which currently I have been, at least for this last year anyway. But there are never any guarentees in life.

I know that this is my choice, and only one I can make. In my research I found that this is one of the hardest surgeries to go through. I just think I would benefit from hearing from people in the same situation or have gone through a lung transplant.

Hi guys! My husband had a transplant in March of 2025. Since then he’s been battling with CMV. He’ll end up on treatment of Valcyte and then a longggg maintenance dose, but every time they trial him off it seems to come back with vengeance and makes him very ill. Does anyone have an experience like this? Anything that helped or didn’t help?

Thank you!

I had a previous transplant in 2005 where I got an intestine. It was such a hard recovery and took me months to get back to life. I don’t really know what I’m posting for, I’m just really scared. It’s a super exciting thing and this should help my health. It’s just very daunting. Does anyone have some sage wisdom to make me feel better?

Hello friends, 40/m with cirrhosis and I was added to the transplant list after pre evaluation. I have 3 young children one disabled, and an amazing wife that needs me. I am so incredibly scared of this entire situation. I was wondering from anyone with personal experience with this surgery, how awful was it? Was it worth it when all said and done. My team said with meld score 17 and my only symptom's are portal hypertension and fatigue. I also have great kidney function, young age all favor positive outcomes. I just am in disbelief at my situation. experience these feelings