I came to PNH via 20 years of MDS, which had been gradually improving after treatment with daclizumab in 2004. Not a usual treatment for MDS but my MDS was behaving rather like aplastic anaemia so the consultant thought it might work. They advised me to ask my GP to refer me to our local haematology unit, who would then refer me on. So I did that and four months later I had my assessment. By that time, I was sleeping a lot – through the night, back to bed for an hour or so in the morning, up for lunch, another sleep in the afternoon, a snooze in the evening, then back to bed. I can’t remember it all that well! I’ve not got much of a linear memory at the best of times. We went up to Leeds for the day, we waited in haematology reception and I went through for blood tests
Next was the bone marrow test. It was a lovely lady who has been doing it for years, and you could tell because although it wasn’t painless she was obviously very skilful, and it hurt less than other ones I’d had. Then we went home. Having been accepted as a patient, I had a number I could ring if I had a query. That was very helpful – anything from medical questions to appointment questions, and they were lovely, very friendly. I was also given a doctor’s phone number, to ring any time of the day or night, if I was worried I might have meningitis.
A month later we were back for treatment. Leeds Hospital have a sort of hotel floor where people travelling from a distance can stay overnight; no charge but you can make a donation. First thing next morning I went down to the chemo day unit and the nurse put up a drip. Over the next hour the ravulizumab was run in. There was always a nurse in the room with me in case anything went wrong, and it was nice to have someone to chat to. I had a bit of a headache but apparently that’s normal. At the end of the infusion, the drip was taken down and I was given a bag containing 6 months supply of penicillin as the treatment makes you less able to fight some sorts of infection.
Then we went home! with high hopes of feeling better soon. As it happened, it took almost three months before I felt different. When I did, I could do in a day what would have taken all week before. It’s still quite variable, and I have to pace myself. Energy levels are worst in the weeks before my next infusion. When they return, it can be a shock to the the weeks before my next infusion. When they return, it can be a shock to the system – this last time, my energy returned in the evening and I was wide awake reading until 7 am, had a couple of hours sleep then a normal day. There’s a lot to learn!