I am currently enjoying my fifth bag of blood, one more to go. It’s been an interesting day, and we finally have a plan of action.
Firstly I was down to 34 haemoglobin. They usually sit at 115 and anything over 70 is acceptable (but still very low). Each bag of blood has 10 in. So we decided to have six bags and see where we were.
The first bag was bought in at 7 last night, and then another at 10. I slept, ish, with very vivid dreams and was woken up at 6am for my third bag.
Then I had a brain CT scan and a blood test to see how I was responding. At this point I was feeling a little nauseous but ok, the blood had picked my colour up no end and I was feeling oddly full.
The haemoglobin results came in after three bags and I was at…. 46 . So instead of three bags making me go from 34 to 64, I had gone up 12. At that rate I would need six more bags of blood on top (this shows why donation is so important) just to hit minimum safe.
On the plus side is got my brain scan result and there appears to be no permanent hypoxia (from lack of oxygen anaemia) damage to my eyes. They still want to give me an MRI scan of the brain to check though I’m the next two weeks.
I still have the spots but we are working under the assumption these might go when(if) I ever hit the mythical 70 or better yet 110 but we will do the scan to be sure.
Oddly my last test on November I was at 110, so it dropped quickly.
So we have just started on bag five and I’m in again tonight. Rather than chase the numbers (and there is a risk with too much transfusing) I will then be released.
Now if it wasn’t for covid we wouldn’t do this. We would get the rituximab on tomorrow to begin treatment. But the plan is. Come out. Start the clock for the transfusion to wear off (2 weeksish) and get my jab asap.
After that come back in when I start to fail. Have a blood transfusion again, and then start treatment whilst I’m still pinker of cheek.
The treatment (rituximab) will then kill all my white cells. But if we time the jab right I’ll have a partial immunity which will make life better if I do get covid during treatment.
Professor Gribben was suggesting I have Bendamustine and Rituximab at the same time. The Doctor here, Doctor Hodson, has only been doing rituximab since covid, with no dual treatment due to length of time of immunosuppression.
Given the confidence I feel in Doctor Hodson’s methodical style the drive (forty minutes) how good the care and the team has been and the fact that Professor Gribben has dropped the ball on my anaemia (even if it is insanely busy in London which I really do sympathise with). I will be moving my treatment to here instead.
At this point I would like to thank Jo’s aunty and uncle Patricia and Peter for offering me their London flat for the treatment period. They had been incredibly kind and said I could stay there as needed, but now I will be only out for the day and can return home after treatment as it’s no longer Bendamustine but thank you again for your kindness.
Addendum. I was on my sixth bag and Doctor Hodson and I discussed it I should have any more. He said that even if my haemoglobin hadn’t risen to 70 after six packets I would be as good as I needed for the next two weeks before treatment.
That meant I could go. Max was a real trooper and did a late night drive to get me home, and Jo was pleased I had come home to surprise her.
I am not better though and need to use these two weeks well in prep for the new treatment start. So I’ll try and get the jab done and then will be back in hospital for the seventh, transfused again on the 8th and treated on the 9th before going home in a two night stay.