Last week, a woman with CF who had a double lung transplant during the time I was in Toronto died. I didn't know her personally but I am still saddened by her passing and can't seem to stop thinking about it. She had her transplant a few months before me and I watched her from a far (as she also had CF so we were never in the same section of the physio room together) while she waited and then returned to the physio room after her transplant.
Due to the public nature of Facebook with friends of friend's information showing up in the newsfeed, I learned that her lungs rejected around her first year transplantversary. However, she was a good candidate for a second transplant so was re-listed. She had her second transplant about a month ago and while it looked promising initially, the second set ended up not being viable.
She is the second person that I know of who had their lung transplant around the same time as me who has passed away. I know for a lot of people with CF, knowing people with CF who die is quite common. Especially for people in the bigger cities like Toronto where, for some reason, everyone seems to have a much tighter connection and knows everyone else. But it's relatively new for me.
Before the transplant process, I was never really in contact with anyone with CF. I know/knew a few people from the Moncton area as our families volunteer in the same CF chapter but that's about it. I'm not sure if it's because I always had Amy around to talk to whenever I was having a 'CF problem' or if I'm just purely anti-social, but I never felt the need to connect with other people solely on the basis that we both have the same disease.
But during the transplant process and now, I saw more people, both with and without CF, and got to know them, by actually connecting to them via the internet, or just being a stalker. And it is nice to be able to vent to people who know exactly what you're feeling. So now I'm starting to experience what many people with CF experience all the time, knowing many people who pass away from the same disease you have. It sucks. The older you get with CF, the more likely that everyone else you know with the disease will die.
It's sometimes easier to think it would be better to live in a little bubble and avoid getting to know people so you don't have to watch them die. But then that seems like an idiotic thing to do. Shunning people to avoid being sad isn't really the answer.
I didn't even know this person so part of me doesn't feel like I have a right to be sad. It's her family and friends who are truly affected. I'm just a bystander thinking selfishly about how someone elses death impacts me. But because she died from transplant complications and had her transplant around the same time as me, it's a reminder how vulnerable I am. How rejection could be just around the corner. How one infection could cause lung failure.
Then I start to think of all the things I do that are on the borderline 'maybe allowed' list. Like gardening, being around dogs, eating soft cheese or sushi, or shaking people's hands. I know I need to live my life and not worry about the cloud of doom that can take over but it's also a reminder to take care of myself and not take any unnecessary risks.
It's also a stark reminder of how much of a gamble having lung transplant can be. Yes it can extend your life but there are no guarantees. While the science for transplants is amazing compared to years ago, so much more still needs to be studied. Like improving the anti-rejection medication to keep people healthy post-transplant. And figuring out better ways to get more suitable matches. Even just having more organ donation would help as if there were more lungs available, there would be better matches which would decrease rejection so people could live much longer post-transplant.