Your Blood Supplement

Recently I was asked to write about having von Willebrand's disorder for a supplement called Your Blood which is soon to come out with an issue of The Independent.  I was asked to write a paragraph but being me that was like trying to insert an elephant into a letter  box.

I am going to publish on my blog what I wrote, as it's a synopsis of my life with funny blood and I've not really put anything like that on here so far.  The supplement that is being published contains a mere snippet as they only had a tiny space to fill.  On here I'll break it down into sections. 

Your Blood - Part 1

When my mum and dad adopted me at the age of 6 weeks old in 1974, they thought they had been given a perfect little girl.  At the age of 6 months when mum was at the GPs and mentioned that I had a bruise, she expected the doctor to say, oh yes that’s quite normal.  She did not expect what actually happened next.

I was referred to the hospital to have blood tests done.  Mum sat on a stool at the hospital with me on her knee while they pricked my ear with a needle and watched it bleed.  After over an hour with me crying and mum worrying, they told her the fact it had not stopped bleeding was abnormal and that I would need more tests.

Mum was told by the Royal Manchester Children’s Hospital (RMCH) that her daughter had severe von Willebrand’s disease later that year.  The next few years were particularly tricky.  Learning to crawl, to walk and cutting then losing tiny teeth were all massive challenges.  Mum and dad decided early on not to wrap me in cotton wool – though they were tempted, and some padding fashioned from socks with their toes cut off, filled with foam rubber, were popped over my knees when I began to crawl.

As a severe bleeder every time I bumped, tripped over or cut myself we had the pleasure of a trip to the hospital over 20 miles away.  This could be many times a week.  When I bled it wasn’t necessarily heavy but it oozed for hours without stopping until I had treatment.  Treatment in the 70s consisted of cryo-precipitate, which had to be defrosted once we arrived at the hospital, and then loaded up into a 50ml syringe or into bags that were infused via one of my veins.  

I remember a lot of my childhood as being spent in hospital and the nurses became part of our family and I felt at home there.  I bruised very easily and had frequent nosebleeds and gum bleeds, all of which meant a trip to RMCH.  I also had problems with internal bleeding into my joints – these were very painful and more disruptive for me as I had to rest until they got better.  I also had to be pushed to school in a big blue stripy buggy which as a girl of 6 or 7 was not much fun.  Generally though I lived my life as normally as possible given the amount of time I was on my way to, or from, or at hospital.

To be continued...

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 ...

Mad March - the beginning

I forgot how to do this.

Or did I just tire of the sound of my own writing?

Or am I just a lazy arse who cannot be bothered to type but who does keep checking her own blog, juuuust in case someone has kindly updated it for her...

Probably a combo of the bottom two. I have been told that to give you a few little snippets and then b****r off for a number of weeks is somewhat mean, and I tend to agree. However I may actually be talking to myself by now, because anyone who used to read this probably got fed up of the scab being undisturbed and have found far better things to do with their spare minutes than read Ros's ramblings.

So Ros, let me tell you all about March mania.

Ooo do, it sounds such fun.

The month started well I think - hard to remember it now but I think it was fairly non-eventful. Actually no, that's a total fib. We had Karen come up from London the first weekend. Was lovely to see her and spend a few relaxing hours together catching up and eating scrummy meatballs. Mmmm meatballs. She had another journey which turned into an epic quest of woman pitted against the evil force that is public transport. Karen won't mind me saying but for her, every journey is a journey into the unknown arrival time. She set off quite happily with her journey all planned out and an eta of 2.30 Saturday afternoon.

I had a call around midday - "The bus took far longer than normal to get into London and I've missed the train by half an hour!"

Oh eck. And so it starts again... :)

She had spoke to the chappie on the ticket desk, he told her the next train she could get would not get her to us until half 5, and would mean a good hour stuck at the station.
"Never mind," said she, I got me laptop, I'll do some work and the time will whizz by."
I did some quick checking on web and found a train she could get instead that would go from a different station but would get up to Brum in no time and we could go up and fetch her.
"Ooo I dunno, I wouldn't want you to come into Brum at end of shopping time to collect me."
Fair point. Not that we'd have minded but I know what she's saying.
Then I got another call...
"Just spoken to another bloke and he's given me a train time from another platform that goes into Brum and then I can get a train on from there to Kiddy, and I've got just enough time to get there, and it's cheaper!"

"Hurrah!" we both cried, and off she went.

After a lovely 24 hours off she went again and I think had an almost straightforward journey home. Maybe one day she have an event free journey? And terminal 5 will have a day with no lost luggage. Or maybe she'll just buy that car and get up here in 2 hours? Hehe.

We had an Aycinena double - Kitty and wee James came up the next weekend. It was a tractor and trailer and tea and cake filled fiesta. Much fun had and I believe James is still talking about the big blue tractor - and I'm sure he doesn't mean the one on the telly! There's no tales of the unexpected travelling for this weekend. Kit drove and got here safe and sound, simple as that.

While Kitty was up I started having back pain. Both sides of my back, just below my waistline, on either side of me backbone. Bit of a dull ache which made me feel uncomfy when I was sat, or stood - although lying seemed to be ok with a hottie in the small of me back.

After they'd gone on the Monday the pain seemed worse, altho it was only on the left side now but was radiating ( now there's a medical term I ain't qualified to use) round into my tum and down into where I imagine my ovary to be. I'd started talking some paracetamol by this point but this was doing nothing. I rang the hospital. Something was telling me it wasn't just going to go away. And having had internal bleeding before I had a little voice saying what if it was that. I had a jab just in case.

The hospital eventually got back to me Wednesday I think? Partly my fault having not expressed the urgency of the situation I spose. I am quite talented in that area apparently. When I spoke to them on Weds I made it clear I was coming up no matter what! I was on tramadol by this point but that wasn't really killing it.

Mum was around to drive me up luckily cos I wasn't in a position to drive. I wasn't in any position at all, cos every one hurt by this point. Hot water bottles helped at night, but I wasn't really sleeping, even with the sleeping pill and the tramadol, and spent the day moving from one painful position into another. They were good when we got there. Gave me a spot to lie down in the sunshine and I had a nap. Slightly helped by the higher doses of tramadol and the paracetemol I was taking by this point and the lack of sleep.

They ummed and ahhed a little but did do a wee and blood samples. Not while I was sleeping obviously.

The results were inconclusive, a bit of blood in my wee and a raised summat, so they ordered a CT of my kidneys. By this point they were of the opinion that it might be kidney stones. I was of the opinion I didn't care, as long as I could have some more tramadol or praps some anasthesia please?

Clots of Love. . .

I'm back home and pleased to report that this was the only time I've had an op and not had any bloody surprises! No post op bleeding at all, as far as I can tell. By that I mean the pain has been containable, not unbearable, and there has been no major blood leakages from any orofi or entry points.

Woo hoo for "The Plan"! It worked.

Thank you to Dr's L and W for keeping a close eye on me and my levels and making sure I was topped up with lots of lovely platelets and juicy clotting factor.

The op went well and discovered that I had some endometriosis which they heat treated and an inflammatory cyst which they lasered. My tubes were clear tho which is good, always nice to have clear tubes.

Doc A who put the scopes in said he couldn't really see if I had a septum in my womb cos there was too much blood squirtage any time he touched anything, so I could've probly done with higher levels prior to the op but at one point post op my factor viii was 271% and my Ricoh activity 194 - that's damn good for a Type III.

Now just resting up with a very bruised belly, chomping pain killers, injecting for a few more days, under exerting and waiting for my next apt in six weeks time to find out a bit more about what they saw.

Thank you for all the texts, emails, blog dedications, letters and phone calls of support - very kind and very much appreciated :)

Love and clots.

X

Is Nail Polish a No No??

Tomorrow I'm off into hospital. I'm going for some internal investigations - a laparoscopy and hysteroscopy to be precise.

My gynaecologist has told me this is to look at the womb, tubes and ovaries, to deal with any ovarian cysts and to see if I have a septum in the womb. A septum is ably demonstrated in the sketch he drew for me below...

I think the little thing coming in at the top right corner is his hysteroscope, taking a look at the womb from above. Quite artistic don't you think?? I hope his handiwork inside me is a little more precise...

Not wishing to worry you but I had a d & c and laparoscopy when I was a teenager and it's not a particularly splendid memory with post-op bleeding into my womb and pelvis and weeks in the Duchess of York hospital in Withington having it all drained out time and time again.

But I am putting my faith in the haemotologists at QE and at the Women's Hospital in Brum, they are working together and have come up with (in a deep and dramatic voice) "A Plan".

This is good. "A Plan" is exactly what they need, what I need, to avoid any of the previously experienced blips - such as hitting a hepatic vein whilst doing a blind liver biopsy. Where they scan your side, mark the spot with an X and then stick a big old needle in to draw out a sample of your liver without actually being aware of what bleeding vessels are loitering under the surface ready to be ruptured.

That was a horrible time, more so for my husband and family than for me - I was just in pain and then in recovery in intensive care. The lesson was hopefully learned by my doctors that von Willies do not always do what you expect - in a bleeding sense of course - and from now on they do all biopsies on all bleeders via the vein so I'm told. In from the neck and down through the vein so there's no chance of any accidental damage.

The poor registrar who performed the biopsy was ever so apologetic and guilt ridden and really rather attractive and I'm sure he would have taken me out to dinner to apologise had Ade not been by my side during most of my stay.

So, my "Plan" (same voice) consists of taking my clotting factor levels after admission tomorrow - the day prior to the op. Then giving me enough factor to get me to levels of at least 100%. Then maintaining those levels by checking and, if necessary, topping up every six hours up to and beyond the op. Also they are going to give me a platelet transfusion before the op and tranexamic acid pills throughout - which should prevent any clots from breaking down, which as von Willie clots they are wont to do. I'll be kept in for at least 24 hours afterwards to monitor for any post-op haemorrhages.

Sound good huh?

Sounds like they are thinking about my treatment, anticipating problems and preparing for them, which to me is as good as it gets. I'm happy. I think Ade is, although he is bound to be worried because his only experience of me being hospitalised was the cock up occasion. Hopefully a straightforward time in hospital will restore some of his faith and ease his concerns slightly?

I guess I'm used to being in hospital, used to handing over control of my welfare to healthcare teams and not worrying about it. After so many years. I think if I was watching someone else having an op then I'd be far more worried about them than about my own - funny that.

When they ultrasounded me earlier this year to see if there was anything adding to my heavy bleeding the scan lady (radiologist?) thought I might have endometriosis. The gynae thought that it looked more like a septum in the womb - see artwork above. This is where the top wall of the womb is either extending down into the womb or is fallen down into the womb. Looking at it from below (laparoscopy) will show if there is endometriosis or a septum. Looking from above (hysteroscopy) will tell him if the top wall of the womb has grown down or fallen down. Then he can deal with both options. Does any of this make sense?? I'm hoping it will when he comes and sees me tomorrow!

I'm supposed to be in for about three days and they're doing it all under general anaesthetic which I much prefer, could do with a good sleep!

My main concern right now is - should I touch up my toenail polish for the procedure or do I have to remove all nail polish for the op - help, I can't remember??!!

I'll let you know how it goes...

xxx

Oh for the love of jabs

I tried the new treatment regime straight away and after the two days of 1000 units every 12 hours the bleeding had slowed right down from heavens open heavy to mild shower managable. This is great, thunk I! However by the time I'd gone back to the 2000 units once a day and was on the second day, my heaven broke loose again. Just so you know that is merely a metaphor and I don't really think of my poonani as heaven - that's for sure ;))

After another day it stopped altogether. Hurrah! This was after 13 days of bleeding though, so it was difficult to tell if that was natural stoppage or doc's new super dooper treatment plan.

I gave him a bell. (A nice cow bell from switzerland / a bluebell / or a bicycle bell - you decide:))

He said the next time I was to try a slight variation:
1000 units every 12 hours for 2 days
1000 units at 24 hours for 1 day
1000 units every 12 hours for 2 days
1000 units at 24 hours for 1 day
and so on ....

On the sixth day he asked me to pop in for a levels check, to make sure that I wasn't going to overdose on the factor VIII and clot up all together, like a black pudding - thanks Jae :)

I went up to hospital yesterday for that blood test. I started bleeding again just a little last week, so began treating straightaway. Sometimes I do bleed a little, then stop for a day or so, and then start again with a vengeance. This time after the second day of twice daily jabs I'd dried up like a Peak District reservoir. I thought, maybe I'm not on yet and didn't have the single jab the third day. Biiiig mistake, the dam was broken that night and I was up and down to the loo three times with no sleep.

I carried on with the injections and popped up to brum yesterday. 25 miles each way to have one vial of blood sucked from my arm. I was feeling pooped anyway so driving up there in a daze didn't help much.

When I arrived I met the new nursie who's just started in the Haemo Unit from the ward round the corner. She was very nice but a little nervous I think. She said she's not used to having patients who can specify which vein they use. I gave her my best vein - inside left elbow - generous I thought, as I'm having to use it every second jab at the mo. It's a dead cert that one - never have probs getting the needle in or it staying in.

She missed it. Twice. Apparently she's good with venflons, hehe.

I suggested she try the back of my hand - which hurts loads more but is fairly easy to use as I never stick it in there. That was fine and she filled her test tube.

Now I just gotta wait for those results and carry on with this two days 12 hourly, one day 24 hourly business until I'm told other wise.

Tell you what though, it's no fun having to drag myself out of bed early just to stab myself. But I need to do it in good time so that I don't have to inject too late in the evening, I get no good after 9 ish. Too tired and uncoordinated. And stroppy - Ade can testify to that.

As we stand I'm 7 days into this period and so far, touch laminate, it has been no where near as heavy as normal. I definitely find that on the 24 hour jab day it starts to majorly increase towards that injection time, so I think there is still some work to be done before I'm totally understood.

Never given myself so many jabs before tho!

And we're meant to be off to the big smoke this weekend to see Spamalot and see some friends, so I really hope it's not too bad.

Either way I'll have a boot full of factor and san prods just in case ...

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 ...

Testing, testing...

Firstly I need to apologise to those of you who have been waiting for me to post about what happened at the Friday 24 hour levels testing thingymebob. I'm sure not that many of you have been checking my blog out, waiting with hooks all tentered and breath carefully bated. I'd know if I had one of them site meter doodah's which tells you how many visitors you've had - I'm sure someone can tell me how to acquire on of those - Jae?? :>

Secondly, I wanted to thank my friend Kitty and cousin Beth for ringing me after my last blog, asking if I was ok and when I said 'Fine' asking me if I was really ok?? I appreciated that. I think I've put my mum into panic mode and she thinks I'm not coping but I'm just trying to be honest and real about how things are, and they aren't always easy.

That said, I'd know if I was depressed, I have been before when I was on the Hep C drugs and I took anti depressents for a while. Now my main problems are physical not mental and I feel able to handle things mostly so please don't feel too sorry for me.

Back to my visit to the hospital in January.

I had to not have any treatment in the days running up to the tests to avoid affecting the results. Luckily other than a 24 hour gum bleed I had no problems that needed treating. I also didn't have any tranexamic acid, which bleeders can take to help stop clots from breaking down too easily. I have to say I don't find that stuff works that well for me but I avoided it anyway, to be on the safe side. I wanted to go to the tests with my very own levels all intact and unadulterated by anything else.

I also, luckily, had not started another period because bleeding heavily would have affected the results apparently.

Anyhow, I turned up at the hospital at just before 9 a.m. - the best thing about this being that I got a parking space right outside - notoriously tricky at any other time of day, even with my little blue badge.

Having gone up to the clinic on the third floor, I was greeted by the ever cheery Jill, one of my clinical nurse specialists. She's ever so nice and suggested that I use the social workers room when I wasn't in the treatment room, if I wanted a sleep or to read my book. Rather than sitting in the waiting area which is pretty dark and uncomfortable, and obviously full of other ill people!

She took blood to test my first set of levels prior to giving me any factor, then gave me 2000 units of factor VIII, and then straight after took the first of 8 lots of blood over the next 24 hours.

Half an hour later at 9.30 she took the next lot.

Then half an hour after that.

Then I had another two hours to wait, so I went and got a cup of tea from the cafe and had a teacake.

At about 12 noon Jill was ready with her kidney tray full of stuff to take my next donation for the labs. Each time a couple of test tubes worth was taken, good job it wasn't any more as I was already feeling pretty woozy. Saying that, they had also tested if I was anaemic prior to the levels testing and my blood count was 11.5 - pretty good really given how heavily I'd been pumping it out recently - and I think mainly down to the very good iron supplement I've been taking - Spa Tone it's called, highly recommend that if you're anaemic...

After that one I wandered off downstairs to get some lunch. The cellar restaurant is on the second floor - only kidding, it's in the basement obviously hahahahaha. So I went down to that as they've got a better choice of institutionalised meat and veg. In order to get there you have to walk through a low ceilinged corridor that you come across people pushing cages of suspicious looking items, body parts I like to think. And there are lots of filthy pipes dangling from the ceiling - definitely the sort of place you'll run into porters with pickaxes or psychopathic surgeons with scalpels.

Having avoided all the murderous members of hospital staff I found myself a reasonable looking bit of battered fish and chips and sat myself in a corner with my book. Nobody bothered me and I was able to while away a good hour there.

Back upstairs Jill told me she had got me booked into the ward for the night. My final injection of the day was not due til 9 p.m. and the next one needed to be taken at 9 a.m. on the Saturday. I much preferred the idea of staying a night on the wards than driving 25 miles home after the time I was normally in bed and driving back in at the time I was normally recovering from not sleeping that well overnight. I had brought my pyjamas and toothbrush in, just in case.

Two more hours were spent in the little social workers room, it had a desk and a sofa with arms that folded down so I could get very comfy. It was bloomin hot in there - it's too tricky to turn the heating down to a reasonable level and you gotta keep those germs nice and toasty so's they can breed. I had the window cranked open and was still struggling to stay awake. I'd got my boots off and feet up when Jill popped her head in to see if I wanted a cuppa - ooo yes please.

At about half three Jill took me round the corner to East 3 A, the ward where I'd be spending the night, and left me in the day room. I waited there for another hour or so, reading the magazines and listening to one doc quizzing another about a condition they'd just seen. He did quite well incidentally, no idea what it was they were on about tho. Think they thought I was a staff member - pretty idle one as I was just sat there, because when two other patients came in they tootled off smartish.

At 5 p.m. a nurse came in to take me onto the ward and take some more blood. Ward was ok, only four beds in there and one of those had curtains drawn around it. They said visitors were welcome any time really so I gave Ade the hubby a ring and he said he'd pop in after work and bring me bedsocks - ahhh.

No-one was too chatty so I got myself settled and was offered some nice(?) indeterminate stew for tea. Decided that I'd had too much lunch and opted to eat some of the semolina pudding and a banana. Yummy.

The lady in the bed next to me - with the curtains - had people with her but didn't sound too clever - literally. The nurses kept trying to talk to her and work out what was wrong but all she'd do was moan. They'd ask her was she in pain - uuuuur, was the response. Do you need more painkillers - uuuuur. You can't have any more because you wouldn't swallow the last lot - uuuuur. We'll try and sort you out some more iv morphine - uuuuur.

Poor thing. The trouble was different nurses would come and ask her the same questions, promise they'd get a doc to see her so she could be prescribed something iv, and then they'd forget and another would turn up asking the same questions. I felt like sticking my head in between the curtains and shouting - just give her something godammit!! Not sure why I didn't, guess it's just that English tendency to avoid getting involved in someone else's life if at all possible...

She also had at least three relatives with her at any one time so it was hard to see why they weren't doing more to communicate on her behalf.

Ade turned up with some socks and some flapjack, which I offered to the diabetic opposite and the lady on nil by mouth. Didn't try the moaner. Polished it off myself.

After my final jab for the night I settled down for a fairly sleepless night, what with 'uuuuring' on one side and some sort of generator outside the window on the other I managed dribs and drabs of sleep before being awoken quite late for a hospital at 7 a.m.

I was delighted to have my final bloods taken shortly after 9 a.m. - they obviously wanted my somewhat unwarranted bed back - and legged it, in the way of a bleeder with one arthritic ankle, limply for the exit.

Jill had said the results might take a little while to get, so I decided to ring first thing Monday, on an optimistic whim. I'd be interested to see what they said as I don't remember ever having my levels studied this way before....

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.