General
How did you explain the waiting process to your family and friends who don’t understand?
When I had my first heart transplant I was lucky enough to only wait 3 months on the list before I got my heart. Now I’m back on the list 18 years later for a new heart and kidney and I have been waiting for 2 and a half years so far. Even though I understand how long the wait was going to be and I’m not losing patience, I feel like my family and friends are. I get questions like how much longer? Do you know how many people are before you? I don’t understand why they haven’t found one yet?
How did you explain to your friends and family about “the wait”?
TransplantLyfe Favorite
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All of my friends and family were very supportive, I got really lucky with that. My friends knew that it wasn't a topic of conversation I wanted to have all the time, I wanted to be treated like I was before I was sick, so that was also something I got really lucky with. My friends are the best. It did get overwhelming at times when I'd have my family (especially my mom, bless her lol totally get it) asking me a handful of times every single week for a year when I was on the list if I got the call yet and what was taking so long. People asking constantly only reminded me that I was still sick, and still needed a liver. I had to shut my phone off more then one occasion just to turn off the noise and my brain. I felt bad at the time because I knew it was out of concern, but I also knew I had to do what was best for my own mental health, and everyone was so understanding.
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I don't know if there really is a way to explain it unless you are going through it. Even going through it I didn't fully understand the wait process.
@SigEpSinfonian98 Yes, I do think the actual wait isn’t fully explained to patients especially since they changed how the listing works in America.
Where you are on the list is not a good indicator. It is based more on need and how good of a marker match you are. You can be number one but are not a good match so the organ goes to were there is the best chance of a good outcome.
Transplant Patient
I didn't wait very long for my liver because I was so sick, but I did use that opportunity to tell people about how many people are waiting and how we need more donors.
Very smart. Our own mental health is so important. My support system is great and I know they mean well. I think it's just the uncertainty of the unknown.
This is correct. I was just sharing the type of questions I get asked.
Oh that's such a great idea! I love that.