…. Could have been better. The day of the transfusion started in typical fashion. I made sure I was in at 8:30am bright and ready. At 9 I went in and was told they didn’t have the drug ready yet. So could I go for a walk and have a coffee. Well who could turn down the chance to have a coffee? So I went to Costa and walked for a bit in the sun.

I got back just after ten and was canullated. The drugs still weren’t there, but they did eventually arrive for me to start at 10:50. I’d booked the day out so I wasn’t worried. Also I had my phone and knew the day was going to be boring, so I did some work anyway.

We started on a slow infusion of 25, with a mandate to increase the infusion every 15 mins. The increments were 25, 50, 103, 204, 305, 400. I didn’t understand the maths but you don’t need maths to do drugs so onwards we went.

The goal was to up it to see if I had any reactions. I have had transfusion reactions in the past, to rituximab especially, and that took hours at a slow rate. So we were a little unsure how it would go. The drug wasn’t as likely to be reacted to as rituximab and we wanted to set limits for the next ones I would have as these will be every 28 days.

It was fine at first. They quickly amped up the dosage to 305 At that rate I should be able to do the whole dose in about two and a half hours. I started to feel like the room was cold and maybe the Aircon was on a little high. I was shivering by the time they came over and my temperature was at 37.8. they couldn’t get my blood pressure as by then I was shaking a lot.

They discontinued the drug and then the nurse in charge, Jo (no, not that one thank goodness, she doesn’t even have basic medical training) have me piriton and another rescue drug. Accordingly I slept for the next half an hour as the drug makes you dopey. We then started again on 103 and finished without problem.

So all good we think? Of course not. 🙂

I was fine that night. The next day was fine too but I developed a bit of a headache in the evening. This led to a low grade fever and sinus pain all night. Sunday was a complete write off. I didn’t really leave bed and every time I moved my head was agony. My first migraine I think. How exciting to try new things.

There was a family day at the beach which I had to miss sadly. The clan doesn’t get together too often so it was a shame but there was no way I was making it.

Last night was better and today has been a bit slow. I still have a slight headache, but not too bad, but heavy fatigue. Lots of sleep still.

The plus side is my sense of smell has returned since Saturday for the first time in 9 months. It’s not quite there, but on its way. Additionally I have had less coughing etc.

I assume that I had a bit of a reaction to the meds, as headache is a listed (and the most common) side effect but also my body used the tools it was given and has gone bug hunting in a big way. Hence the the behind the eye pain (I had conjunctivitis for nine months too) and the tiredness.

Still I will keep you all posted as I am supposed to be getting these infusions every 28 days for the foreseeable future. Maybe it was just the first one which was super rough. Also if it gets rid of the influenza I’ve had for 9 months and gives me energy back then I’ll take it.

Final note. Just because you didn’t need maths to do drugs you should learn them anyway. Otherwise you might get ripped off.

Anyway thanks all. Have a wonderful week.