Yesterday I returned to the lung transplant waiting list after an enforced break due to my Dad picking up his second bout of Covid. Fortunately, Lauren and I didn't get it, too. We've all been doing regular testing and we must have caught Dad's covid very early before he could unwittingly pass it on. I notified the hospital immediately and they understandably erred on the side of caution asking me to take a 2 week break from the list.
In some ways it was quite nice having a couple of weeks off the list. It meant Lauren and I didn't need to worry about having a drink or whether our phones were on loud and fully charged or not. We could kick back and relax a bit - even if we were living in the house of someone with Covid hoping and praying that our daily lateral flows remained negative!
Having not been in contact with Covid directly since the first phase, pre-vaccine, when Dad was very poorly, I'd forgotten just how anxiety inducing it can be when it's on your doorstep. Having reared it's ugly head again, it's got me feeling a little twitchy about going out and doing things especially when there are many out there who aren't quite so careful these days.
Transplant could be a matter of weeks away but it could also be months or even years so we can't just squirrel ourselves away as we'd all go bananas. At the same time, I can't afford to pick up Covid as that would further extend the period of limbo as I'd have to come off the list again. It could also do serious damage to my lungs which could result in the transplant becoming more difficult or potentially not even possible at all. A real catch-22.
I got a bit blue about it last week when Dad was still testing positive but I'm in a much better place now that he's fully recovered and I've managed to avoid picking it up. I went to see my sister in a play at the weekend and as of yesterday I was officially back on the transplant waiting list.
Generally I'm doing well, I think, all things considered but the longer the wait drags on the harder I'm finding it all. A lot of it is the usual frustration that my life remains on hold with no end in sight which has impact both on me and those around me. However, recently I've also started to feel a little bit more mindful of the fact that my condition isn't getting any better and that slowly but surely my window of opportunity (along with my right lung) is literally shrinking. As a result, I've allowed the odd doubt to creep in about whether I'll get my opportunity after all. That's made worse by the fact that I've noticed another little dip in my performance on the exercise bike...
However, I need to remember that I've only been on the list for 5 months and I've already had two call ups. While my performance on the bike has dropped slightly, the fact that I can still cycle on the bike at all is encouraging and can only stand me in good stead if/when the transplant does finally happen. Ultimately, I can't really do much about about the disease progression itself. I just have to keep taking my prednisolone and Nintedanib and hope that they do their job of keeping the scarring at bay long enough to get me into that operation room for the transplant.
Look after yourselves everyone and thanks as ever for all your support!