Haven’t posted for a long time but i learnt a very valuable lesson yesterday which i think others could benefit from, at least i wish i had realized this.
Just because you receive an offer for a liver, even though you turn up to hospital, even though everything is a go, even though you are waiting in pre-op - the operation can still be cancelled.
After being listed for 2 years and after being the back up twice (the last time being just 4 days ago) and then yesterday making it so close to the OR (i could literally see them setting it up) the cancellation crushed me.
We had told family and some close friends, i had explained to my kids that i would be gone for a week or so.
But most importantly i had mentally checked in to the operation, was ready to go, was focused.
So i now know, until you go into that OR, until they cut, until you wake and realize that the transplant went ahead, be prepared for it to be cancelled.
The only positive take away is that now myself and my wife know the process from start to finish, we know what we would have done differently, what we forgot and how to proceed next time.
Eric,
Thanks for your post. I’m sorry you had to go through a dry run for a transplant. My, you were right at the OR door and got canceled. They must have had a real good reason. You certainly don’t want to get a liver that has a problem with it. Maybe your next call will be the one! Let us know how it goes.
This last one really crushed me, the back up calls I was okay with and saw it as the system working. I am definitely sulking today like a little child. Going to take some time to get over yesterday. I definitely won’t get excited until I’m counting down from 100 and feel that sedative go up my arm.
I know it must have been devastating. I was fortunate to not have to get but one call, but I know that’s not always the case. I’m sorry yours isn’t pre COVID19 either. They will certainly limit who can be with you. I was able to have my entire family and my pastor around my bed just before being wheeled into surgery. That was very comforting to have their love and prayers in person. Hopefully, your wife can be with you. I do wish you well and hope you get that call very soon. What’s your MELD score now? Mine had got to 36 when I got the call.
Eric, for all we go through, the rollercoaster ups and downs, and getting so close would definitely take time to mentally readjust. Maybe going through the 5 stages of grief.
Pre-tx, I had heard from my research of multiple calls, leading to a no. This maybe part of my philosophy when I had psc, was that what will happen will happen. Yes, we can get to scream bloody murder at times, and we still have to get through the daily stuff at the same time.
But I can hear your disappointment. I hope the next one is a go.
Jeff