When I was first diagnosed, and as I gradually started to understand how serious my condition was, going to clinic appointments, and having the blood tests leading up to them, became a massively anxiety-inducing experience for me.
I would absolutely dread it. Even though PatientView was an option, and I had an account, I hardly ever used it. I didn’t want to know. At least in my mind, if I felt ok, or even “sort of ok” then I. Was. Fine. If I didn’t know I was worse, I didn’t have to think about what being worse meant.
In some ways, this approach served me fairly well. If something ever was wrong it stopped me knowing about it weeks in advance and spending all that time worrying, when there was nothing I could have done about it anyway, as I certainly wasn’t in the frame of mind to be proactive about getting help. But on the other hand, it didn’t help at all. It led to overwhelming “scanxiety”. All I would think about was what my bloods were going to be, and what was going to happen next. It was fairly common for me to not sleep for several nights in a row before my appointments, and more often than not I was That Person in the waiting room. The one whose anxiety was almost worse than her kidney disease.
I received a transplant two and a half years ago, and at least initially, things improved. I updated PatientView and actually started to use it! It made me happy to see my eGFR going up and up while my Creatinine went down. When I was at the stage of having bloods several times a week, it almost become a game to see how low it would be this time!
And then my renal function stopped improving and started to stabilise. It has stabilised at a perfectly healthy, acceptable level and barely moves from month to month, which is exactly what a successful transplant is supposed to do. As recipients go, I take very little medication and only go to clinic every three to four months. Not once has my consultant been worried that my kidney might be rejecting or starting to fail. Billy the Kid might not be a high-flyer, but he’s consistent!
These things are amazing and I’m really grateful. On the whole, I’m a lot more relaxed about going to clinic and am now the chatty, friendly patient in the waiting room as opposed to the tearful and anxious one.
But I’m still a bit of a PatientView ostrich. I certainly use it, I’m a lot more proactive than I used to be and it’s useful for me to be able to see my blood results straight away, interpret them myself, and phone my team back if I’m worried about something, but quite often, when I’m logging in on the laptop or loading the app on my phone, the familiar pit in the base of my stomach comes back. It doesn’t matter that I know it’s entirely likely everything will be fine. I’ll go to clinic, briefly chat to my consultant and transplant nurse about what I’ve been up to since I last saw them, and then happily be left to go another four months until next time. But at the same time, I’m not sure the anxiety, and the “What if something’s gone wrong?” will ever really go away.