I Am In Pain - so there!

I have had some good news today.

Well, not exactly good news but I'm pleased nonetheless.

I was referred for an M.R.I. on my ankle last time I saw my haemophilia specialist.  This may sound extreme but other than a cursory play with my foot whenever I saw him, and sometimes not even that, I had begun to feel that my ankle was not getting the attention it deserved.

As a bleeder with a tendancy for joint bleeds, I felt that a wiggle of the joint and an "Oh that doesn't feel too bad - you've got a pretty good range of movement in that joint" wasn't quite good enough.  

I am lucky enough to only have one really problematic joint but my scrawny little ankle clicks, grinds and hurts in such a way it would make a torturer proud.  It has kept me awake on numerous occasions, such that if I'd had a hacksaw under my pillow I'd have been inclined to hack off my own foot - seriously, I would've, had it not been for the likelihood of a monster haemorrhage of course.  It often 'disappears'.  Surely, you query, that's the effect I was after?  Nope.  When my ankle 'disappears' as I describe it, it becomes in an instant so weak it can no longer support me, it suddenly hurts like someone has shot a bullet right through it, and I fall over - if I don't catch myself first.  Oh, and I usually shriek.  And I'm not prone to that.

Yup, doc, it's not too bad.

According to the new GIGTB leaflet produced by the Haemophilia society, the content of which I believe has been taken from the national service spec for haemophilia care (please do correct me if I've got that wrong), as a severe bleeder:

"You should also be offered an assessment
by a specialist orthopaedic surgeon or
rheumatologist at least once a year to
monitor joint and muscle problems and
identify the need for surgical intervention."

This is not a service I have ever had whilst under any comprehensive care centre.  And I'm 36 you know.  

Maybe it's just an ideal rather than a reality - I note the use of the word "should".  Maybe I just didn't complain enough about the pain I was in.  I believe that most bleeders (yes, men and women) have very high pain thresholds, otherwise we'd be in pieces all the time and you'd never hear the end of it.  I also am not the kind of person who complains - at least I don't think I am.  I will generally only bring something up if it is a real problem but if I'm then told - oh no, this seems fine, I have a tendency to put up and shut up.  Perhaps I should've pushed for further investigation earlier but to be fair I trusted the doctor -haha, hahahahaa, god you think I'd have learned by now - and was unaware what care should have been available to me.  We've never had a physio attached to our Comprehensive Care Centre and I've never seen the national service specification or the NICE guidelines.

Anyhow, during my last visit my haemophilia specialist said, as he held my right ankle in his hand, 

"Have you had an M.R.I. done on it recently?"

One jaw bleed later, I said, 

"...um, I've never had one".

And so I was referred.

To Selly Oak I went for a half hour session in a tubular machine that was either having the time of its life or heading for a severe mechanical breakdown.  I quite enjoyed it.  It was kind of musical, in a tone deaf tuneless kind of way.  My favourite part was when the operator popped some headphones over my ears and said - "That's for the music".  They remained silent until she said through them, 30 minutes later, 

"All done."

Two weeks later I've just phoned the hospital to see if they've got the results, and yes, they're in....

*Lights dimmed*

*Drum roll*

*Gratuitous lengthy relentless seemingly unending dramatic paaaaaaauuuuuse*

"Congratulations Mrs Cooper, you have won severe arthropathy of the right side of your ankle joint!!"

Have to admit my nurse didn't quite put it like that, but the good news was no tendon damage and the left side of my ankle didn't look too bad.  

The fact that the right side is so damaged makes me feel better - is that weird??  It basically means that all this pain and discomfort and weakness and crunching is not all in my head.  Why I would think it was, god knows, but hey it ain't, so that's good.  It explains things for me and means that finally summat can be done to make it better - or at least perhaps a tad less impactive on my life. 

I await the next step, with one good and one validated weak ankle ...

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 ...