Over the last two days this whole affair has become a lot more bizarre...
Yesterday I attended my monthly out-patient consultation at LRI. Good basic blood results, the Hb had climbed back to 148, so no anaemia due to the first venesection. Curiously, I was given no result for ferritin, which I thought was strange as that's the only thing they are actively treating at the moment. The consultant was oddly reluctant to discuss it, so naturally I pressed the matter 🙂
He said that there wouldn't be much effect after just one venesection and that they would check it after 6 or so of them. Not good enough, I said, telling him of the grief that I would suffer when SWMBO asked for the non-existent test-result, and that we weren't going to be happy waiting about 30 weeks to find out if the procedures were working. After me threatening to give SWMBO his email address he relented and said that they would do a test at the next monthly consultation.
I told him again that his "6 weekly" instruction on the venesection referral form had been "interpreted" by me and by LGH as "one a week for 6 weeks" and that the second "bleed" was provisionally booked for today (21st October), 11 days after the first one. He said that he had intended it to mean "1 every 6 weeks", I told him that if that was what he meant, he should have written that instead. I told him that I felt fine, and pointed out that according to his own results my Hb had recovered within only 10 days, so there was no sign of venesection-induced anaemia. Grudgingly he said that "1 every 4 weeks" would do, and then after a bit of muttering and keyboard-mashing he changed that to "1 every 3 weeks". I asked if he wanted me to cancel the provisional for today but he didn't say yea or nay.
So today I made the executive decision and went to LGH for the second bleed.
As previously reported, the first venesection was done on 10th October. On that day, before they drew the blood, they took a mandatory sample so that they could measure the ferritin (yeah, it's not rocket-science) and the Hb. Today I got the result of that test...
Ferritin: 998 × 10-6 g/L
So it had gone down by 677 × 10-6 g/L with no intervention whatsoever between 22nd September and 10th October... just 18 days.
And nobody has yet been able to explain how or why.
I suspect that at least one of the test results is wrong. That, or at least one of the test results is someone else's result. Don't snigger - it's happened to me at least twice this year. I know that I'm often over-cynical, but either scenario might explain the consultant's reluctance to disclose a ferritin result yesterday.
Regardless, LGH proceeded to take another pre-venesection sample and hooked me up to a drain-bag. While that was going on they made me another appointment for 6 weeks hence. After I queried that, the Ward Sister quizzed me regarding the confusing "6 weekly" thing. When I told her that I'd discussed it again with the consultant and that he'd clarified it... and then changed it... and then changed it again, she said that she wouldn't sanction any more bookings for me until the whole sorry mess was sorted out officially and to her satisfaction. She was on the blower to Haematology in seconds flat.
Eventually she returned. 1 every 3 weeks. Official. So now I have 2 appointments at 3-week intervals.
Sorted. But it shouldn't have taken over 4 weeks to sort out and they shouldn't have used me as a go-between.
It'll be another 3 weeks until I discover the ferritin level from today's pre-venesection sample at LGH, and 4 weeks for the ferritin level from the next out-patient consultation at LRI. Those results might just depend on which way the wind was blowing, what colour socks I was wearing and which other patient's tests were being done at the same time.
