When I was first diagnosed, and as I started to understand how serious my condition was, going to clinic, and having the blood tests beforehand, became a massively anxiety-inducing experience.
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 that meant.
In some ways, this approach served me fairly well. If there was something wrong it meant I didn’t sit and worry about it for weeks in advance, as I certainly wasn’t in the right frame of mind to be proactive about getting help. However it also meant that all I would think about was what my bloods were going to be, and what was going to happen next. I often wouldn’t sleep the night 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 very regular bloods, it was like a game to see how low it would be!
And then my renal function stopped improving and started to stabilise, it now sits at a healthy level and hardly moves from month to month, which is great. As recipients go, I take very little medication and only really go to clinic for routine monitoring. Billy the Kid might not be a high-flyer, but he’s consistent!
These things are amazing and I’m really grateful. I’m much more relaxed about going to clinic and am now the chatty, friendly patient in the waiting room instead of the tearful, anxious one.
Regardless of all of this though, I’m still a bit of a PatientView ostrich. While I’m now confident and proactive about interpreting and monitoring my own results, the familiar pit in the base of my stomach still comes back whenever I log in. My logical head knows that everything will be probably fine. I’ll go to clinic, chat to my consultant and transplant nurse, and then not have to worry again for another four months. However anxiety, especially when it’s health related, is often far from logical, and I’m not sure the feeling of “What if there’s something wrong?” will ever completely go away.
Beautifully expressed Holly . We can’t escape our “mental hell’ whether transplanted or not.Just live life to the full. You seem to be doing pretty well .Chris is keeping us entertained on the WKPA committee . Love Richard x
I was on self care dialysis for three years after crashing on gfr 5. I have to say whilst on dialysis, I used to check Patient View every month. I still check Patient View 15 weeks post transplant, but I still get slightly anxious, I don’t sleep well the night before and I dread the phone going in the afternoon post clinic, but that’s because I’ve been more roll than coast on this roller coaster journey. In three weeks after transplant & three times since discharge, I’m still on weekly clinic. I know the first year is hard, but I’ve never felt so exhausted, even on dialysis
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