General
Call finally came, how deal with letdown?
Sunday at 2am, while visiting my son in Atlanta (I live in Orlando), I got THE CALL!!! Panic, fear, gratitude, hit me all at once…. Then, how to get to Miami by 10am?! Caught 7am flight, arrived in Miami at 9:30, Husband and son #2, were waiting for us…woooo, slide into parking lot; made it… 9:55am.
Check in, all appears well. Start all the preliminary blood tests, questions, questions, questions…. Sent out texts, made calls to special friends and family. Sit and wait, wait, wait….. 2:30, A doctor I do not know comes in to explain the “transplant has been cancelled due to organs being infected with COVID”, he quickly leaves the room before I can ask any questions, I’m stunned! Panic, fear, gratitude; this combination of feelings is becoming familiar, hits me again! Nurse comes in tells me I can get dressed and we can leave. Now, we have lots of questions but she can’t answer them, tells me to call my doctor on Monday for full explanation.
Adrenalin begins to leave my system, tears invade! Questions, so many questions; deep, deep sadness. Reality hits! Finances…. Oh god! Last minute airfare to Miami for 2 ppl, now last minute to Atlanta….credit card max getting close!… re-contact friends and family with bad news, I don’t have the energy! Apologies owed to husband and sons…. What now?!
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First and foremost, I am so incredibly sorry for all the physical, mental, and financial anguish which accompanies this entire ordeal. Your feelings are 100% valid and I'm glad you chose to share them here. The night before I received my living donor transplant in 2014, at around 11:30pm, my clinic called me to say a last-minute review of my case by the transplant committee resulted in them wanting my donor to lose another 5 pounds before surgery. Due to HIPAA laws, the hospital acted like my donor (best friend) and I didn't talk and the frustration is something I still feel to this day. Instead of going in for surgery 6 hours later, I was attached to my dialysis machine again and so mad at the world. My donor and I ultimately had successful surgery about 2 months later and I deeply empathize with how you likely felt like a turned away "customer" instead of a human being during such a vulnerable time.
Did they not do virtual cross matching
I understand the mixed emotions, that is awful to experience. I went through 3 “offers” to then be told no. I got my first call while in my liver doc’s office after she had just told me I was being taken off the list due to infection. I was devastated. My second call I showed up at the hospital, changed, got blood work and an IV and they were running tests when they came in to announce that after eyes on inspection, it would not be a good match. My third offer I had been living in the hospital for 8 months on death’s door. I did not believe the doc. They wheeled me into the OR, started prepping then the room got quiet and staff began to leave the OR. Doc came in and it was not the right liver. I was hysterical and sobbing. I was asking to go home on palliative care because I was done being so sick and living in a hospital. By the time my 4th and real offer, I was barely alive but it worked and I am still here a 3 and a half years later. The fear and sadness is real. I urge you to talk about your feelings with your support team. It is a huge loss and I urge you to give yourself grace and space to grieve. Please stay strong and keep us posted on your progress.
So sorry but I've been through this twice before I got the 3rd offer which was the one. It is a roller coaster ride but consider this. You are at the top of the list and will get another call soon. Look at this experience as a trial one for the real thing. By the time my 3rd offer came I knew the drill and was more than ready. Good luck and keep your spirits up. Your day is coming.
Hi, I I tell you Sunday the 17th 2026 was a busy day. I received my first call from the nurse coordinator telling me that they had a kidney. Of course this message was left on my machine. It took me another hour before I got through to the hospital to respond by that time, I was told by the nurse the kidney was no longer viable. I went from a high to low and 2.2 seconds the coordinator believe I hung up on her that wasn’t in the case, I so busy crying we got disconnected. This entire process is New to me. No one in my family has had any type of transplants when my brother was about to pass. I consented to have his organs donated. Someone out there has a piece of my brother when my brother was about to pass. I could send it to have his organs donated There is so much I don’t know, but I’m learning. I have heard various stories nothing prepared me for that first call. I pray that the next call is near. This has been quite a roller coaster for me. I’m so blessed to have extended family members continuing to pray for me unfortunately no matches as of yet, but my faith is strong.
I had a couple let downs. Like @onlylivingboyinny said. Your feelings are valid. Everybody told me to stay hopeful and that was tough. Transplant people are so resilient so I know you got this. This is a safe space. We all get it so vent away! We are here for you.
I’m deeply saddened to hear about your experience, I’m so sorry you had to go through that, I would be devastated as well. Keep your head up, everything will work itself out, just focus on one step at a time recovering from this event.
the “Doctor” or whatever their Title is that came to tell you the news then hurries to leave. Yeah that happened to me time and time again during my stay in the hospital, even if they had a second to take questions they kept pushing for my specific doctor.
every hospital is different but they all have 1 thing in common, lack of communication. I’ve had to explain my situation constantly cause no one reads my Chart or relays information.
once again I’m so sorry you had to go through this, positive thoughts and I’ll personally pray for you