P P P P P P Patient Power!!

So, the hubby and I went off to QE in January determined to get some answers.

What I really wanted was for them to run some tests to see how my factor levels were affected by the injections. Did my clotting factor levels rise and by how much? How long did they last at elevated levels and when did they decrease so far as to be irrelevant?

We went into the doctors office - 'How are you?' he asked, 'Oh fine!' I replied.

Ade shot me a pointed look.

'Umm, not feeling that clever really, but not too bad you know, haha. How are you?' I asked.

What wrong with me??? So much for telling it like it is and wielding my right to get some answers. As Ade put it afterwards - he's not going to think you've got any problems if you're laughing and joking like everything's ok.

I know this but am just not able to sit there and reel off how I really feel, how crap everything actually is. How I struggle to get out of bed in the morning because I'm so tired and that walking up one flight of stairs leaves me breathless, and that injecting so many times each month is getting more and more difficult cos my veins are getting knackered, and that bleeding this much is stopping me from working, shopping, getting on with my life. I have effectively chosen to feel this way by wanting to have children, I feel guilty that I am using all this treatment because I know it costs a bomb and the NHS is in the red. I also think that if I were to let it out I might collapse in a little heap and start to blubber like a baby and frankly, that wouldn't be much use to anyone.

When I was first unable to work in January and had to keep in touch with work to tell them how I was, I found it hard to talk to my boss Lou and tell her how I was feeling. When I did try she would tell me that I shouldn't worry about work and concentrate on getting my health better and that upset me, because it was so supportive and kind.

I'm usually pretty good at telling it like it is when people ask me but somehow I always feel the need to appear that I'm coping and getting on with things, which mostly I do, even though sometimes I don't and perhaps this is more the case when I'm coping less - if that makes sense???

When I talked to the nurses at the hospital I can tell them easier how I am and show them my 'bleeding diary' - a lovely chart showing how many tampons and towels I'm using and how heavily they are saturated - eeugh. Maybe because my doc is a man, I feel like when I try and give him these details to explain how bad things are, he doesn't necessarily want to hear it? It might be me, maybe I'm embarrassed to tell him? I don't think so, I've generally found it easy to be open with docs over the years. I think it is the not coping that makes me more desperate to appear to be coping...

Looking at my little bleeding diary (created by ZLB Behring to tell new patients a little about vWd and heavy periods) it states:
'A period usually lasts for 3 - 7 days. Although the amount of bleeding will vary from woman to woman, and may even vary from one cycle to the next, blood loss for most women is minimal, usually only 4-6 tablespoons during an entire cycle.'
Now I've never measured my blood loss with a kitchen utensil but I can assure you that I'm dispensing measuring jugs not serving spoons. My lowest number of days was 10 and my greatest 21, so I can safely say I can tell you that I'm having excessive bleeding.

This is what I told my doc. His thoughts were that if the treatment wasn't helping then it could well be because there is another underlying cause for the heavy bleeding. That maybe so, but I still felt it was worth assessing how effective my doses of factor VIII were being. After a little pushing by Ade and myself he agreed to do a 24 test of my levels following 2000 units of Factor VIII - hoo ray!

Because at the time of the appointment I wasn't bleeding, I know!!, I was keen to have the tests done asap. And as I wasn't at work I could come in whenever they could fit me in. We arranged that I'd come in for 9.00am that Friday, a prospect that I didn't relish being unable to get out of bed in the morning, but one that I sure wasn't going to turn down.