The results are in ...

I've gotta put another entry on - to save you from having to see my bloody cakehole every time you pop by. Must really put you off your sandwiches.

Back to my clotting factor level testing - oooh hurrah you cry!!

I was told by the nurse when taking my blood on the Friday, that it may take some time for the results to be ready. Ok I thought, and rang on the Monday.

Nothing, obviously, but I just wanted to know when it was likely to be - "try later in the week" I was told.

So I did ... and early the next week ... and later the next week. Apparently the lab would have made me a priority if I was an in-patient and they needed the results. Fair enough. As it was, I was merely a woman bleeding like a pig from her nether regions unable to go to work or do diddly. Not to worry, I've got all the time in the world.

The following week I thought best not to harass the nurses too much, it's not their fault it "isn't on the computer yet". I thought, they'll call me when the results are in, they know I'm sat at home waiting.

On the Friday I cracked and rang again. "The doc's going down there himself to chase them up." Brilliant, and will he ring when he has them? "Oh yes, we'll ring you" - great.

The following Monday having not had a call, I rang again to be told that he was busy today but he'd be in touch tomorrow.

And he was.

Hurrah!

The results were in and this is what he said (please forgive my non-medical interpretation and lack of detail dad):

My factor VIII levels were looking good following the treatment.
30 mins after the injection of 2000 units my factor VIII was 81%
24 hours after the treatment my factor VIII was 71%
That was great, hardly any reduction over a full 24 hour period.

My RiCof activity was less rosy and fell off between 4 and 8 hours after the injection:
1 hour after treatment the activity was 100%
4 hours after treatment the activity was 75%
8 hours after treatment the activity was 37%
12 hours after treatment the activity was 21%
and 24 hours after the activity was negligible.

This could well explain the problems I'd been having, and the fact that my bleeding could start up again having appeared to have stopped.

My doc admitted he didn't know exactly what RiCof levels were needed for me to have a clotting effect. He was thinking because I'd had a poor response to treatment in the past that I could have had an inhibitor - which means your body itself limits the effect of the treatment. However, based on these results his opinion was that if I'd got an inhibitor we'd see a drop of in the activity between 2 -4 hours not 4 - 8. It was maybe just that my activity levels weren't so easily controlled.

He suggested more frequent injections whilst bleeding might be beneficial - which is what I'd been after for months - but he was concerned that too much treatment could dangerously elevate my Factor VIII levels. I didn't ask what this could result in but I presume some kind of thrombosis maybe?? That would be ironic. I'll ask next time I see him, I thought.

He suggested I try:
2000 units one evening
then
1000 units every 12 hours for the next 48 hours
then
2000 once daily from then on
and assess what effect it had and give him a bell.

So that's what I did ...