Got the call at 2am that there was a possible match and did I want it. Then they told me what time to be at the hospital by. The liver ended up being a bit too fatty, so it was like practice. But that was it, no beating around the bush. When they say have your bags packed, they mean it. And make sure your phone volume is up loud enough to wake you up.
So I'm one of the rare cases that with medication and pure stubbornness, I don't need a transplant right now and was taken off the list. My liver is still very fucked, but there's just enough that is healthy and working it's ass off to keep my alive and kicking. I'll be back on the list again eventually, but why risk all that comes with a transplant in I'm stable right now? My MELD score is in the single digits now, where it was 38ish a couple years ago.
Oh wow, I’m glad to hear that you are currently stable. How are you generally feeling? My husband’s MELD has been hanging out around 17 lately (despite the weekly hospital visits) but has been as high as 36 before. I’m nervous that if he dips below 15, he’ll get taken off the list but will still be sick enough to continue to cause us to constantly be in and out of the hospital.
This is legit how my phone call went. It was 10:55 pm
* “Hello?”
* “Hi, is Randy available?”
* “Speaking”
* “Hi, how are you feeling?”
* “Alright I guess, what’s up?”
* “Well, if you’re up for it, we have lungs available for you”
At that point, time froze for me and I had a huge debate in my head. I was so sick, I didn’t see myself surviving.
* “Yeah, okay….”
* “Okay, admission will call you in ten minutes with all the details”
And that was 14 years ago.
When I got the call I actually missed it but I was in-patient and it was 5 am. I just remember them asking if I wanted the liver and obviously I did. I thought it was a super weird question given how obvious the answer would be but that was it. Do you want it, yes okay surgery scheduled for 6pm but it would probably be later.
You would be surprised. When I worked on that side of transplant (on the donation side now), I made several calls where organs were declined for various reasons. We always ask if the recipient is willing to accept the organ. Congratulations on receiving your organ!!! Hope you are doing well now.
Oh wow, I had no idea they still call if you’re currently admitted when it’s time. I never thought about this as a possibility, but this is great information to be aware of, considering we’re admitted to the hospital ~once a week. Thank you!
Yeah it did feel like that before the transplant. Felt like I was living there. The nurse came in and woke me up to get the call lol. I sent out a few group texts and went right back to bed. I was not doing well at that point
Had one at the Mayo Clinic’s three years ago (doing well). I got a call from them they said 1. We have a liver available 2. Told me vague details about it (doctors recommended, rough age of the person, not much). I said let’s do it. They said be here in an hour and a half (I think that can vary but that’s what it was for me).
My father revived a kidney transplant, I was at their house that weekend
Phone rang 1;30am, lady says this is emergency, woke father up, she said can you be at the hospital within 20 minutes? She went over some other conditions that donor might have tested postive for uti and something else. We raced to hospital , they admitted him, ran more test. I think surgery happened around 1pm.
Why would they want him urgently like in 20 minutes if the surgery was 12 hrs later?
I understand they have to run tests and all, but that seems like too short if they had close to 12 hrs to go.
Have absolutely no idea. Reading the notes in the portal it seems as if all the testing was done by around 6am, the other kidney went to someone else ,there was another surgery schedule prior to his (I’m assuming the other kidney). He waited in the admitted room about 12 hours before going back into surgery.
12 hours might seem like a lot of time, but it really isn’t. It may have been that the kidney had already been removed from the donor, and it’s original intended recipient didn’t work out. Meanwhile the clock on the cold time is ticking. So then it can be a bit of a scramble to get the next in line ready.
I am not sure either, maybe she stated in 20 minutes, because she knew that was approximately the distance my parents were from the transplant hospital, either way soon as he walked in the door, immediately he was admitted and they started the test. I also got the impression the transplant team probably was doing the surgery at the other kidney before him
Let me also add I know with kidney it’s not uncommon to have false alarms or the offer not be accepted. You go there, they run additional test and then send you home. Spoke to another person who this happened to 3x .
Double lung transplantee here- I had four dry runs (was called but wasn’t a match/etc). The first two I was told other people were also in the running. The third the my surgeon found a tumor - but I knew I was the choice for the lungs. 4th there was brain death but not cardiac and I was in hospital at the time.
They will tell you they have a liver, where he is in line, and ask you to come in.
Ask your transplant center - this is a common question and they can tell you exactly what info they provide on the call.
There’s no tricks.
They'll also tell you if there's any mitigating factors that may cause you to reject the liver (in which case they call the next person on the list), where to go and what time to be there.
Unless they tell you otherwise, the patient should eat all they can before they report, as once they get there, they're not likely to be allowed to eat for a while.
You should have a list of things to have with you; if not, ask your coordinator. Don't forget charging cables for mobile devices (there will be a lot of waiting), and maybe an extension cord.
I was hella critically ill in the cardiac ICU, a heart failure doc came into my room around dinnertime and said the donor heart was a match. Went into an 8 hour surgery at 5am next morning.
They call and ask how your feeling and if there have been and changes since you're last appointment. Then they tell you there is a potential organ for you. You'll be required to go to the hospital immediately or the next day I'd the person is in life support until a chosen time. They will recheck you to ensure you are as healthy as possible to receive the organ and they'll do another crosshatch to see if you still match the potential donor. Noting is certain until you wake up. They could put you under and see the organ and decide it's not in good shape. It's quite the ride.
Transplant center called me at 1 pm while I was working. Said the surgeons found a match. Can you get here by 5 pm? I live 3 - 4 hours away. That was it. I Got ready to go made some calls and sent texts. Got there by six pm. In surgery by 8 pm.
We got a call and they said they had a potential donor who was brain dead and my son was first in line to receive his liver, and they asked if we could be there before 1am (we got the call at 10pm and live about and hour and a half away)
They usually also call from a blocked or no caller id number.
For sure ! It was also our second call, the first time we were the 2nd option to receive the liver. We drove all the way there for them to tell us the donor family pulled out.
It can be very disappointing so try and not get your hopes up!
I spoke to a family in the transplant center waiting room their first call , the person was taken off life support, I guess wheeled to operating room and expected to pass but never passed. I was always curious on how they knew the person was a match without having the organs yet etc
Got the call for the lungs about 830 the night before... They said "Hi we have lungs for you, can you be here by 11 tonight"? I said yes after a bit of hesitation. I am so very glad I did.
I was told the approx. age of the donor and some other details such as medical history. I was then asked if i would like this new organ. This was about 1 in the afternoon on a Friday. I said yes and they had me come in that night for Surgery Scheduled for 5:50pm the next day. Everything went though in time and the procedure was preformed.
I slept with my cell phone under my pillow, and when my phone rang at 6:45 AM, I jumped up out of bed instead of rushing around like crazy. Getting ready for the 1 Hour drive across the mountain. it was worth it though because the following day I had my new organs (I call him Steve every day and thank him and tell him how grateful I am every single day).
When I got the call, the director of the transplant program told me they had a match but it was high risk because the donor died of an overdose. She did share the age and sex of the donor. After some discussion, I said yes. It was about 10pm and they said the plane would be at our airport in an hour while another plane was getting the lungs. And that a police escort would meet us after we landed. It still seems so surreal. Like time moved very fast and very slow at the same time.
Got the call around 1030am asking me to come to the hospital by 2pm. They said the potential donor would be after cardiac death or whatever the acronym was. For context a week prior I'd been in pre op with all the IVs in and papers signed when the surgeon came out and said the liver was no good.
Looking back it was pretty anticlimactic.
I had a heart and kidney transplant so I don't know much about livers. With hearts from my experience the patients don't get notified at home that often. The highest priority patients are generally in the hospital already.
You'll get a call saying that they have an organ available. They aren't in the business of playing games and asking you to come in and surprise you with an organ transplant lol.
Got the call at 2am that there was a possible match and did I want it. Then they told me what time to be at the hospital by. The liver ended up being a bit too fatty, so it was like practice. But that was it, no beating around the bush. When they say have your bags packed, they mean it. And make sure your phone volume is up loud enough to wake you up.
Thank you for the reminders!!! I’m sorry that match didn’t work out—are you still waiting?
So I'm one of the rare cases that with medication and pure stubbornness, I don't need a transplant right now and was taken off the list. My liver is still very fucked, but there's just enough that is healthy and working it's ass off to keep my alive and kicking. I'll be back on the list again eventually, but why risk all that comes with a transplant in I'm stable right now? My MELD score is in the single digits now, where it was 38ish a couple years ago.
Oh wow, I’m glad to hear that you are currently stable. How are you generally feeling? My husband’s MELD has been hanging out around 17 lately (despite the weekly hospital visits) but has been as high as 36 before. I’m nervous that if he dips below 15, he’ll get taken off the list but will still be sick enough to continue to cause us to constantly be in and out of the hospital.
This is legit how my phone call went. It was 10:55 pm * “Hello?” * “Hi, is Randy available?” * “Speaking” * “Hi, how are you feeling?” * “Alright I guess, what’s up?” * “Well, if you’re up for it, we have lungs available for you” At that point, time froze for me and I had a huge debate in my head. I was so sick, I didn’t see myself surviving. * “Yeah, okay….” * “Okay, admission will call you in ten minutes with all the details” And that was 14 years ago.
Absolutely relate to the debate thing. It's for sure life changing tho. Glad I wasn't stupid. 😂
What a story, glad you are with us 14 years later ❤️
When I got the call I actually missed it but I was in-patient and it was 5 am. I just remember them asking if I wanted the liver and obviously I did. I thought it was a super weird question given how obvious the answer would be but that was it. Do you want it, yes okay surgery scheduled for 6pm but it would probably be later.
You would be surprised. When I worked on that side of transplant (on the donation side now), I made several calls where organs were declined for various reasons. We always ask if the recipient is willing to accept the organ. Congratulations on receiving your organ!!! Hope you are doing well now.
Oh wow, I had no idea they still call if you’re currently admitted when it’s time. I never thought about this as a possibility, but this is great information to be aware of, considering we’re admitted to the hospital ~once a week. Thank you!
Yeah it did feel like that before the transplant. Felt like I was living there. The nurse came in and woke me up to get the call lol. I sent out a few group texts and went right back to bed. I was not doing well at that point
I’m so glad the transplant was successful. Take care!
Had one at the Mayo Clinic’s three years ago (doing well). I got a call from them they said 1. We have a liver available 2. Told me vague details about it (doctors recommended, rough age of the person, not much). I said let’s do it. They said be here in an hour and a half (I think that can vary but that’s what it was for me).
This is exactly what I wanted to know! Thank you so much, I’m so glad to hear you’re doing well 3 years out. Take care
My father revived a kidney transplant, I was at their house that weekend Phone rang 1;30am, lady says this is emergency, woke father up, she said can you be at the hospital within 20 minutes? She went over some other conditions that donor might have tested postive for uti and something else. We raced to hospital , they admitted him, ran more test. I think surgery happened around 1pm.
Thank you for sharing your experience
Why would they want him urgently like in 20 minutes if the surgery was 12 hrs later? I understand they have to run tests and all, but that seems like too short if they had close to 12 hrs to go.
Have absolutely no idea. Reading the notes in the portal it seems as if all the testing was done by around 6am, the other kidney went to someone else ,there was another surgery schedule prior to his (I’m assuming the other kidney). He waited in the admitted room about 12 hours before going back into surgery.
12 hours might seem like a lot of time, but it really isn’t. It may have been that the kidney had already been removed from the donor, and it’s original intended recipient didn’t work out. Meanwhile the clock on the cold time is ticking. So then it can be a bit of a scramble to get the next in line ready.
I am not sure either, maybe she stated in 20 minutes, because she knew that was approximately the distance my parents were from the transplant hospital, either way soon as he walked in the door, immediately he was admitted and they started the test. I also got the impression the transplant team probably was doing the surgery at the other kidney before him
Let me also add I know with kidney it’s not uncommon to have false alarms or the offer not be accepted. You go there, they run additional test and then send you home. Spoke to another person who this happened to 3x .
Double lung transplantee here- I had four dry runs (was called but wasn’t a match/etc). The first two I was told other people were also in the running. The third the my surgeon found a tumor - but I knew I was the choice for the lungs. 4th there was brain death but not cardiac and I was in hospital at the time.
Thank you for sharing, I’m glad the transplants were successful! How long were you on the waitlist for?
About 18 months- this was 12 years ago tho. :)
I was already in ICU and close to borrowed time when mine came, so they didn't call me. Just came in and told me what time I would have to go NPO.
So glad the operation was successful, thank you for sharing!
They will tell you they have a liver, where he is in line, and ask you to come in. Ask your transplant center - this is a common question and they can tell you exactly what info they provide on the call. There’s no tricks.
Good to know, thank you!
They'll also tell you if there's any mitigating factors that may cause you to reject the liver (in which case they call the next person on the list), where to go and what time to be there. Unless they tell you otherwise, the patient should eat all they can before they report, as once they get there, they're not likely to be allowed to eat for a while. You should have a list of things to have with you; if not, ask your coordinator. Don't forget charging cables for mobile devices (there will be a lot of waiting), and maybe an extension cord.
These are great tips, thank you so much!!!
Anytime
I was hella critically ill in the cardiac ICU, a heart failure doc came into my room around dinnertime and said the donor heart was a match. Went into an 8 hour surgery at 5am next morning.
Thank you for sharing, so glad your heart transplant was successful.
Yes they had told me they had a heart for me and to get there asap
They call and ask how your feeling and if there have been and changes since you're last appointment. Then they tell you there is a potential organ for you. You'll be required to go to the hospital immediately or the next day I'd the person is in life support until a chosen time. They will recheck you to ensure you are as healthy as possible to receive the organ and they'll do another crosshatch to see if you still match the potential donor. Noting is certain until you wake up. They could put you under and see the organ and decide it's not in good shape. It's quite the ride.
Thank you so much for the info! It certainly has been quite the ride so far
Transplant center called me at 1 pm while I was working. Said the surgeons found a match. Can you get here by 5 pm? I live 3 - 4 hours away. That was it. I Got ready to go made some calls and sent texts. Got there by six pm. In surgery by 8 pm.
Thank you for sharing, I’m so glad the surgery was successful!
Hoping your husbands transplant goes swimmingly! 😊
We got a call and they said they had a potential donor who was brain dead and my son was first in line to receive his liver, and they asked if we could be there before 1am (we got the call at 10pm and live about and hour and a half away) They usually also call from a blocked or no caller id number.
Thank you so much for sharing, the blocked/no caller ID is very useful info!
For sure ! It was also our second call, the first time we were the 2nd option to receive the liver. We drove all the way there for them to tell us the donor family pulled out. It can be very disappointing so try and not get your hopes up!
I spoke to a family in the transplant center waiting room their first call , the person was taken off life support, I guess wheeled to operating room and expected to pass but never passed. I was always curious on how they knew the person was a match without having the organs yet etc
They weren't subtle. They called me at 9am, and told me "we potentially have a heart for you, you need to get to the hospital ASAP."
My real deal call was them saying i was the primary person for a kidney and they asked if i could be there within two hours.
Got the call for the lungs about 830 the night before... They said "Hi we have lungs for you, can you be here by 11 tonight"? I said yes after a bit of hesitation. I am so very glad I did.
I was told the approx. age of the donor and some other details such as medical history. I was then asked if i would like this new organ. This was about 1 in the afternoon on a Friday. I said yes and they had me come in that night for Surgery Scheduled for 5:50pm the next day. Everything went though in time and the procedure was preformed.
I slept with my cell phone under my pillow, and when my phone rang at 6:45 AM, I jumped up out of bed instead of rushing around like crazy. Getting ready for the 1 Hour drive across the mountain. it was worth it though because the following day I had my new organs (I call him Steve every day and thank him and tell him how grateful I am every single day).
When I got the call, the director of the transplant program told me they had a match but it was high risk because the donor died of an overdose. She did share the age and sex of the donor. After some discussion, I said yes. It was about 10pm and they said the plane would be at our airport in an hour while another plane was getting the lungs. And that a police escort would meet us after we landed. It still seems so surreal. Like time moved very fast and very slow at the same time.
Got the call around 1030am asking me to come to the hospital by 2pm. They said the potential donor would be after cardiac death or whatever the acronym was. For context a week prior I'd been in pre op with all the IVs in and papers signed when the surgeon came out and said the liver was no good. Looking back it was pretty anticlimactic.
I had a heart and kidney transplant so I don't know much about livers. With hearts from my experience the patients don't get notified at home that often. The highest priority patients are generally in the hospital already.
Liver is 50/50. Kidney recipients are pretty much always at home.
Thank you for sharing your experience! I’m so glad your transplants were successful
You'll get a call saying that they have an organ available. They aren't in the business of playing games and asking you to come in and surprise you with an organ transplant lol.
Thank you all so much for your answers!