Was discussing health plans at work and someone asked me why I chose my plan. I told them about my heart transplant and they asked me if I met my donor.
I’m 7 days post and so paranoid about getting sick it’s starting to feel unhealthy. I picked something out of my teeth and accidentally swallowed now I’m scared I’ll get sick, I won’t let people visit or bring me flowers because the nurse said flowers could carry things. My hubby has a cold, he wears a mask and we sleep separately but I wince in fear when he comes near me. I sanitize constantly, and I’m scared to touch things in the house. I’m hoping this will pass soon.
I had a liver transplant last year and had a wonderful coordinator before transplant. Unfortunately, since transplant, I’ve had a very different experience with the coordinator I was assigned. I often feel talked down to, dismissed, or told that she “doubts” what I’m saying.
There have been several situations where I’ve reached out with legitimate concerns and felt like they weren’t taken seriously. I’m not someone who tells medical professionals how to do their jobs—I ask questions because I genuinely want to understand when something should be handled by my transplant team versus my PCP.
I’ve put up with this for over a year, but I’m at the point where I’m considering asking for a different coordinator. My concern is that they may not assign me someone else, and I don’t want going over her head to make things worse.
Has anyone else dealt with this? How did you handle it?
**I should also add that I rarely ask her anything, and am more likely to ask a family member that is a nurse. So, if I go to her, it's important.**
Post Liver Transplant today and eternally thankful for all involved.
I have been in the hospital waiting for a 2nd heart. It's been 77 days, and getting a heart still feels so far away. I have 50% antibodies. I am B+, 5'7 and about 200lbs. I am really trying to do everything I can to keep myself occupied, but I am just getting exhausted from waiting, and because I am so hard to match due to antibodies and my blood type. I feel like I am never going to get a heart. I'd appreciate encouragement from people who did it in similar situations or worse. How did you make it through? How long did you wait in the hospital?
Hi all,
I had my transplant surgery three days ago, with my mom as donor. The last 3 days have been pretty up-down, and I had been getting pain and discomfort in the stitches area, I wanted to know from people -
How long does the pain and discomfort last, Today being 3rd day, I was able to stand and move a little but hoping it reduces further
My BP still touches 150,160 by 90,100, for anyone did it take some time for BP to slowly go down, I really want to get back to eating normal food.
How much time does creatinine take to go to lower value, my creat before transplant was 6.61 and now it is 2.6, does it normally take some time to gradually come down.
When did you guys start travelling and going out, and how do you manage outside food, any tips would really be helpful.
Thanks a lot
I remember many times back when...... my heart was failing, would beat out of control, got shocked by my defibrillator again and again, doctor mentioned heart transplant, rode an ambulance for the umpteenth time, met a bunch of doctors who kept talking about transplant this and transplant that, then got a transplant, endured a coma, woke up, felt something weird, back to the ER again. I was supposed to die many times. But this morning I woke up. I took a deep breathe. And I remembered, I'm still here.
And so are you.
Hang in there.
I'm about to give my kidney to a recipient in a few months and was wondering if there are any groups I could look into/join. Merely for the fact that I think it would be cool to connect with others who have gone through the same thing.
(My sister had found a group of graduates of her university like 5 years after she graduated and moved across the country and they all got together and watched movies)
Thought to share my story as it was recently featured by the American Heart Association.
I hope to lift you guys’ spirits as we all embark on our transplant journey together. Things get better.
-
At 17, I went into cardiac arrest playing soccer, It turns out I had a rare congenital heart defect I never knew about.
My heart couldn't sustain me on its own, so I was placed on ECMO and put into a medically induced coma. I stayed there for three months. When I came out of it, I had an LVAD keeping my heart going while doctors worked to find a way forward. I focused on both physical and occupational therapy to begin building up more strength, as my body had been systematically destroyed from all the trauma sustained, during this time.
8 months after the arrest, I received a heart and kidney transplant. In all, I spent 11 months in the hospital and went through 16 surgeries just during that year.
It’s been 12 years since the incident and I’m doing infinitely better.
If you guys have any questions I could answer, I would love to help in whichever way I can!
Here’s the link to the full article:
https://www.heart.org/en/news/2026/09/25/cardiac-arrest-and-a-double-transplant-took-soccer
Hi folks!
In my recent report my s.creatinine is 6.82 and egfr is 11.
It’s been 2 year when I was diagnosed with CKD ( doctors assuming) biopsy has not been done because of small size and lost of cmd (corticomedullary differentiation).
Now I’m quite anxious. Can anyone tell me in which surgeon I should pick for my transplant in north India ( Delhi ncr).
My mother is living donor with matching blood group.
Thanks for reading guys.
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.