World Haemophilia Day 2014

Hello there and happy World Haemophilia Day!

Whether you're a bleeder or a clotter you may be interested to see this video which I made last week of me having one of my regular clotting factor injections.  As a severe bleeder with type 3 von Willebrand I learned to self-infuse factor 8 aged 14 (26 years ago now) and it revolutionised my life.  I am lucky to find injecting relatively straightforward, most of the time.

I was intending to re-record this today, wearing red, for World Haemophilia Day but instead I'm taking my dad out for a birthday lunch as he was 75 yesterday, so you're gonna see my trial run which I figure is good enough.  Please bear with my efforts as it's the first video of myself I've ever attempted!

I wanted to record and post this to raise awareness of the thousands of women who live with bleeding disorders and also to reach the millions of undiagnosed to encourage anyone who thinks they might have a clotting problem to consult their doctor with a view to getting tested.  

Not everyone has to inject like I am doing, those who are severely affected do and you don't have to do it yourself.  I chose to so I can take my treatment and travel / work anywhere.  I am lucky enough to be able to do this and I appreciate that massively.  Others in less affluent parts of the world do not have access to the most basic treatment.  To find out more about that and how you can help please follow this link:

Save One Life

I hope you enjoy (?) my video or at least find it interesting, and if you're a fellow bleeder or carer feel free to feedback on my technique or sanitary arrangements!  

Funny Blood Jab

I've tried to upload the video but blogger won't let me so I now have my first ever video on YouTube.  Apologies the sound is a bit rubbish - I'm a novice!  Thanks for watching ;)

xx

In the words of Gloria Gaynor ...

I am Rosamund Mary
I was born on the Isle of Man
I was adopted when I was 12 weeks old
I have a rare form of Von Willebrand's disease
I have less than 3% Von Willebrand's factor
I have less than 1% factor 8
I have injections to replace the clotting factor and stop bleeding
I learned to do them myself when I was 14
I started my periods when I was 13
I would bleed for 3 weeks out of 4 and then start all over again
I have taken hormone pills ever since then to keep the bleeding under control
I have always had acne on my chest from the hormone pills
I used to have horrendous period pain every month
I once had to stop my car and knock on a strangers door for help because I was blacking out from period pain
I now take hormones continuously because it's safer for me not to bleed
I was given Hepatitis C from contaminated NHS blood products
I was probably exposed with every injection I had in the 70's and early 80's
I had on average 1 injection a week then to control bleeds
I was not told by my specialist about my infection with Hepatitis C
I found out by accident at another hospital
I had a 12 month and then a 6 month course of treatment for the Hepatitis C
I had a biopsy before the 2nd course of treatment
I lost six pints of blood and nearly died after a bleed in my liver
I discovered just before I got married the Hepatitis C was no longer detectable in my blood
I have been ill with chronic fatigue ever since those treatments
I now have on average 2 injections a week of clotting factor to control bleeds
I have been exposed to vCJD
I have been unable to work since 2008
I have been unable to have children because of my ill health

I am what I am
I am just right
I am all this
I am me

Betrayal and Lies -- Please Share

This video has been put together by a fellow contaminated blood campaigner and friend of mine, Richard. It contains contributions from a number of friends, many of whom are tragically no longer with us.

It is disturbing but essential viewing if you are interested in the unnecessary infection of thousands of bleeders like me, through our NHS treatment.

Please take the time to watch and share it where possible.

Thank you x

Night Mare

This was the evening after the morning before.

Another weeny gummy bleed. Where this one came from I'm not sure - think it started around mid afternoon - aaaah mebbe it was that piece of Soreen I had with my cuppa?? It is very sticky and probly sucked a bit of my gum off. Nice. Anyway, it was still going as I headed off to bed.

You shot up? says Ade.
No, says I.
You won't sleep, say he.
Oh but I will, say I.
I got my night nurse you see and with that I could sleep through a boobquake.

Where was I?? Oh yes, the clotting factor conundrum...

I was talking to a fellow bleeder at the hospital Tuesday lunchtime and we both admitted that where possible - we put off having an injection until it is absolutely desperately necessary. Now it's not like either of us have a problem injecting - we don't. Though I know bleeders who hate it with a passion and I really wouldn't want to be in their sensible shoes.

Injecting is:

• quicker than it's ever been (with these drugs companies reducing what used to be a squishy bag of plasma down to a couple of glass bottles)
  
• pretty effective (though not always so, being a Type III von Willie, that would be far too simple)
• almost painless (if I do it in my left elbow and through the scar tissue - not if I have to use my right elbow vein, but even that ain't too bad; hands - now they would kill me but I've yet to have to resort to that entry point)

So why put it off??

It's funny - when I have to do prophylactic treatment, i.e. twice daily injections to cover a period or a procedure of some sort, I set my alarm at 9am and 9pm and do my jabs no problem. Ok - so mebbe there is a little cursing and harrumphing but I do em - night after morning after night after morning.

So why is it different when I need to treat on demand??

I'm not sure.

It seems much more of an effort. Much more of a chore. A hassle. It bugs me frankly that I need to have my treatment. I mean why for God's sake?? Why do I have this damn disorder that means I need to stick a needle in myself to stop my gum from oooooooooozing like an insidious leaking leech.

Is it because it reminds me of my imperfection? But why would that be, as this process fixes me?

Do I hate injecting that much that I avoid it at all costs? Nope, once I get on with it, it's easy and generally restores me to a non bleedy state.

What then?

Am I just a lazy arse? Partly I think. My friend and I both agreed that when it comes to it we often just simply cannot be bothered.

Is it the cost?? Is it that I feel it needs to be really bad to warrant injecting? I have access to this treatment that not everyone with funny blood has. Sometimes yes, I think I postpone longer and longer. I wait - wait for the bleed to continue past 5-10 minutes normal bleeding time, past 1-2 hours slightly annoying bleeding time, onwards through 3-4 hours really annoying bleeding time, we reach 8 hours and I realise that I'm still oozing. Then do I inject??

With my gums - I sometimes wait til 12 hours before I jab, 24 hours. Why do this?

Any longer than 10 minutes is abnormal, should I not just inject once that has been breached?? Why wait so damn long...

You know, sometimes I think if I just ignore it, it will stop. If I don't think about the bleeding it'll just clot up and a few hours later I'll go - "Ooo, a blood free gob! How lovely." Very occasionally I find that happens, and a bleed I was previously aware of has miraculously gummed up of its own accord. Another reason to put off the prick.

Of course, should I be bleeding at a more profuse rate - period pace for example - I will get on with it. I don't sit around gushing. (Except over a really luscious piece of cake - and even then I'd stop to shoot up if I were bleeding over it.)

Mebbe it's just I judge the oozers as not bad enough to treat initially. They are just something I should accept and not treat unless they hit 12 hours? 24 hours? It's a valuable treatment - should it be saved for more extreme circumstances. Praps I'm not truly suffering unless I'm swallowing blood for a significant number of hours?

But why should I accept any excess bleeding even if it is an infinite dribble?

Just get on with it - shoot up and shut up.

Mucky Mush

This was the state of me when I woke up this morning.

Gorgeous right??

My tongue was more gory but it's rude to poke that out without a warning. This is the morning after a night on the towels. Actually it wasn't that bad. No towels required for drooling blood - just a cast iron stomach from gulping goo.

I have been doing prophylactic injections for my latest period but stopped those yesterday morning when things eased off down below.

It amazes me however how quickly things get back to normal, or in my case - way below normal. Last night my gums bled from when I brushed my teeth at around 10pm, until after I got up at 9am this morning. My lips weren't too bad really. They have been known to completely stick together, so much so that I would win any sponsored silence by a very clear length. This morning they were, as you can see, just a little bloody. The way yours might look after a few too many red wines. Not how I would like to answer the door admittedly but far from scary to passing passersby peeping through my curtains.

Luckily, as is sometimes the case, things seemed to clot off once I'd had my breakkie, mebbe it's the ice cold milk on my crispies?? I didn't need to shoot up this time.

And therein lies a common conundrum - to shoot up or not to shoot up - that is my question...

My Psycho Moment...

Got out the shower yesterday to find this little bleeder:


Not quite sure how that started - think it could've been Norman stabbing me in the shoulder with a pin, ee ee ee...

I kept mopping and it kept not stopping:


Managed to get me towel on as you can see - not that you'd have wanted to see otherwise!

My hair towel came in very handy:


Clothing meself proved a little tricky but got so far. Managed to locate and apply a number of plasters - three to be precise - but within a minute there was a leak:


Took myself off to have an injection. Sitting in the dining room in my brassiere hoping that the neighbour wouldn't choose that moment to gain access via our passage.

Blood drains from under me plaster
tissues blot it
don't bleed on floor
attempt to mix bottles of treatment
don't drip on table
mop it with tissue
fill my syringe
get blood on my hands
all over my arm
hope window cleaner isn't due
put on tourniquet
put tourniquet on other arm cos need to mop up bleeding arm
hold tissue on shoulder with chin
stick needle in
inject stuff
stop half way through
wipe blood up
start again
finish
take needle out
don't care if blood spills on table
or floor
wait
dab
still going
wait
dab
wait
dab
still going
take off blood soaked plasters
still going
put on clean plasters
clean arm with steret wipe
another steret wipe
another
wonder why didn't just have another shower
watch plaster
watch plaster
nothing.
No blood.

Hooorah.


Gum still going tho.

xx

As Natasha Beddingfield once said...

March 2008 - I thought I had pulled a muscle but it got more and more painful and then the bruising started to come out. Took about 2 weeks to slowly run down my leg and into my foot before disappearing. Not had many muscle bleeds before.
March 2008 - No idea how I got this one, probly poked meself in the night or something.
March 2008 - This was from a walk Ade and I went on in Cornwall on our holiday at Easter. Scuse the attractive nail polish which had been on since an 80's party on New Year's Eve - what a scuzzer...
April 2008 - Can't remember which bit of me this is :) think it might be a thigh where I bashed it on our desk in the cellar - I know, not terribly sensible!
May 2008 - I slid down the stairs last week, I'll blame the loose carpet, but it could be the half asleep bird. Banged me wrist against the bannister but at least it stopped me breaking me neck! We ain't getting a bungliow Ade!! Did it on the Monday and the bruise came out Friday. Not too sore tho.
June 2008 - This is my latest masterpiece - not that you can see it very well - mobble pics I'm fraid. No idea how this one happened - nothing done to trigger it. Just woke up on Sunday with a very stiff shoulder and upper arm. Bruise started to come out late on Monday and this was taken Tuesday. Very nice...
June 2008 - Wednesday. Thought I'd do a day by day bruise progress for your delectation and mine. Want to see if this one will dribble down my arm before disappearing, like my leg bleed. Love the colours on this:)
June 2008 - This was taken this morning. You can see it's going into my elbow. Had to wear an ankle support round it in bed last night cos it was throbbing so much. Had 3 of injections for this one so far. It is definitely another muscle bleed, my second spontaneous one in 3 months. Weird.

Guessed the song yet? It's fairly bleeding obvious...

xxx

p.s. just had a slightly blushful moment - the door knocker went while doing this post,
"Ah Ade back from the dentist,"
I thought,
"not taken his blooming key again."
As I went to open the door, I also bent down to pick up the post,
"He can have my backside to greet him,"
I thought,
"that'll teach him to forget his keys!"
And stood up to see two confused looking blokes,
"We've come to look at your tv aeriel..."

Blood Glorious Blood

Gum glorious gum
bleeding on for ever.
Three injections done
why aren't you getting better?

X

p.s. I know it's not the overdue continuation of my March maladies or anything about what's happened since, but when inspiration strikes (if you can call it that:) you just gotta go with it! Please feel free to continue song if you are similarly inspired...

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?

On the first of December . . .

. . . my von Willies gave to me
a bleedi-ing belly button.



Hmmm.

Yes, I know - that isn't right. I'll have a jab and if that doesn't knock it on it's little button head I'll get it checked out.

Yes, I know - that is the Love Bugs nightie - sorry Louise :( but I'm sure it'll come out in the wash.

Half and half sleep / no sleep tonight - mebbe I'm excited bout Christmas - well it is December after all . . .

X

Southern Comfort

I was away last week.

Ade and I drove down to stay with our friends in Fernhurst over the bank holiday. We had a lovely bbq with some very meaty and very yummy burgers and asparagus and potato salad; and did lots of chatting and resting. Their son, who is now 2, is a lovely little chap who spent most of the time we were there laughing and smiling at us. He loved Ade and wanted to play with him and show him stuff.

Kit and I watched The Departed with Jack Nicholson and Leo DiCaprio and Matt Damon - very good film which you will probly be best off watching when you've not had a glass of vino and are falling asleep cos you will need to pay attention. Espeshially when the husbands got back from the pub mid way into the movie and then need talking through the plot so far, and kept asking - who's he? Who's he again? And who's his father?

On the Monday evening after more relaxing and eating pots and pots of never ending potato salad Ade set off to drive back home alone and I stayed on for another night.

On the Tuesday I travelled to Havant to stay with Louise and her mum by the seaside. That was very relaxing indeed and Louise's mum was extremely careful not to talk to me too much as it would, she'd been informed, tire me out. And it would of, but she was very careful. Actually we talked a fair bit anyway but then she'd say - right, I'm not talking to you for an hour, and I'd go and read my book. In her beautiful lounge with the glass wall overlooking their beautiful garden. Very nice.

She did take me on a little trip out to look at lampshades and tried to make me go for a bracing walk along the seafront - sea air would do me good my mum said. I refused to leave the car as it was blowing a force 10 gale and raining and the lady walking her dog was being swept along and the wind surfers were kite surfing. So she opened the window and swept me with the through draft for my own benefit - I felt sooo much better - thanks Mrs M!! ;)


I was injecting twice a day nearly every day I was on my minibreak, so I had my coolbag full of factor to last me the few days away.

Also, because I was bleeding I had a veritable pick and mix of sanitary prods in a suitcase all to itself which I worked my way through. Good job I've got so many toiletry bags for all those damn toiletries!!


I was getting the train home so I was happy to get through my stash and empty out my luggage. It was just a shame not to fill it with a load of freshly purchased shopping but you can't have it all.

The change of scene did me the world of good I think. Thank you very much to my kind hosts for having me stay.

The whole coming home mularky left me pretty exhausted and yesterday was a total write off, dressing gown day (which shocked the hairdresser when he turned up unremembered to do me a cut at 7p.m.).

The bleeding has eased now thankfully, so this week I might get some rest from twelve hourly jabs and a debilitating toilet habit...

Bathroom Phobia

We spent Saturday night round at our good friends' house. They had invited us round for a relaxed takeaway and a bottle of wine.

I had vowed that morning I wasn't going to drink any more, just in case that was contributing to how I'm feeling at the moment. My current bout of exhaustion may well be linked to my liver still, as well as the tidal waves of bleeding. However I was offered a Prosecco and Cassis and being rubbish at sticking to things and not one to resist a new concoction, I accepted. It was very yummy and a subtle red colour, my favourite shade.

I began bleeding again on Friday. Having worked out that it was 8 days since I had last stopped I was not terribly impressed. It came on heavy and suddenly and I was glad to be at home with my crate of sanitary accoutrements, not in the middle of Kidderminster or on a train or something less convenient. I have already become extremely familiar with the M&S loo but as I wasn't expecting to be starting again quite so soon I would have been unlikely to have my purse full of products.

By Saturday night I was prepared and took a large handbag full of Always Ultra and a cool bag full of Haemate P round to our friends. I needed to take the drugs because I am still doing the injections every 12 hours and would be due to shoot up at 9pm.

By the time it was 9pm I'd had a couple of Prosecco & Cassis combo's and was shooting up in their kitchen slightly under the influence m'lud. Didn't affect my technique - still got a vein in one. And not a drop of blood anywhere - even on the little nest of kitchen roll I'd put out to protect their table.

The worst thing for me was using the downstairs loo with a heavy heavy bleed going on. I'm going to be honest about it here, so they may never invite us again, or in fact want to speak to me at all! When my period is that heavy and you're pulling the string (ladies I'm sorry to mention this but hey, that's how it is; fellas if you have no idea what I'm on about please move along...) it literally takes the tiniest pull and the weight plummets the thing out and thudding into the bowl. In the course of this I can often get somewhat bloody through no fault of my own - ewww sorry!! It's then a challenge of not getting blood splatters a la C.S.I. around the smallest room while I try and clean up as soon and as hygenically as I can. My friend had plenty of soap - two bottles - so that was ok. I am cleaner than clean as far as this goes so please don't stop inviting me round!

You'll understand why I have an uncomfortably close relationship with public loos. If I had a problem using a public loo or any kind of bathroom phobia I'd really be in trouble when I was bleeding. I would not like to remain in my house all the time purely so that I can use a clean toilet equipped with plenty of soap, a decent bin and an unending supply of sanitary products. Sometimes if I'm up to being out and about it is nice not to have to stay in solely for the facilities.

From our recent trip to London I can advise you that the loos in Liberty's were extremely narrow and poorly lit. Now I don't need lighting particularly, I'm happy not to see the carnage in the bowl but a little bit of room to swing a tampon would be appreciated. It is a very nice shop with lots of lovely and slightly unconventional sofa's to sit on when a bit jaded, and fab hand creams to try but it is definitely let down by the bathrooms. And the poor lady who was in a wheelchair and couldn't get up the couple of steps into the loos on the fourth floor must've been really fed up. The disabled loo was on the second floor I think - maybe I should've tried them out.

Cafe Nero near Shafetsbury Avenue was appalling in the toilet stakes (I'm getting an idea for a book here, can you tell what it is yet...?). They had loo paper everywhere, more cramped stalls and blue lighting - what's that all about? It was like they were trying to detect old blood on the walls before I'd even been in there!! I could tell there was no soap so I declined to use that one and had enough padding to wait until I got to the Palace Theatre. Now there's a proper toilet. Plenty of room, lots of cubicles, easy to use bins, no shortage of loo paper, lots of soap and working hand driers, thank god for the Palace.

If I you do still want me to visit while it is my time of the month, i.e. more often than not, I will need room to move around the lavvy, a bin to pop the overzealous packaging in, decent uncrumbly loo roll and soap to clean up afterwards please.

M&S may well do wonderful food but often there is no loo roll, the bin is coughing up paper towels and the squirter is devoid of soap in the Kidderminster branch.

I'm thinking of ordering one of those hospital hand sanitiser thingy's to attach to myself when out. . .

Edited based on comments.

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 ...

Happy Bloody Birthday!

Was slightly over zealous when brushing my teeth last night.

Couldn't sleep with a mouthful of blood. Not into spitting :) so swallowed a load of blood and a large number of sloppy clots. Nice.

Had enough by 4 a.m. and got up to have jab. Took a few photos thinking I'd stick one up as illustration. Now realise I need to find one of me looking half decent to compensate for this monstrosity....


2000 units later and am all clotted up and ready for sleep.

An hour later I find myself lying in bed with:
'Always look on the bright side of life,
dee dee, dee dee, dee dee, dee dee'
going round and round my head.

Maybe it's because I booked tickets to see Spamalot the other day? Maybe it's because it's my birthday today? Maybe it's because I'm a Londoner?

'Life's a piece of sh*t,
when you look at it,
deedle, deedle, deedle, deedle dee ...'

Prophylaxis

Well, after some time and experimentation I thought we might finally be getting somewhere with my bleeding control.

I've been taking prophylactic injections to manage my periods ever since coming off the pill last year. My specialist initially advised me to try 1000 units of Haemate P every day while I was bleeding. Haemate P is heat treated factor VIII concentrate and one bottle contains 500 IU of factor VIII and 1200 IU of von Willebrand factor:RCoF (ristocetin cofactor activity - don't ask me to explain this, I'll look it up! This link has some info on the pathology of vWd: http://www.massgeneral.org/pathology/coagbook/CO006200.htm).

I can't have recombinant (synthetic) factor products because they don't contain any vW factor and wouldn't be of much use to me. What I need is the factor VIII, the vW factor and the RCof activity - all of which can be found in heat treated factor VIII concentrate. My specialist at the QE was confident that 1000 units per day would be enough to calm down the bleeding. I wasn't entirely sure. I've had problems in the past where - even with treatment - I continue bleeding; with gums and nosebleeds and when I've had surgery I have stopped bleeding, only to start again with a vengeance.

For the first eight months of 2006 I injected 1000 units, about 40ml once dilute, every day of my period and felt that whilst it might not have been quite as horrific as when I was a teenager, I didn't feel it was making a huge difference to the amount I was losing. It became hard to carry on at work because I was bleeding so often and so heavily. I kept having to run from my desk to get to the loo, excusing myself pretty sharpish whenever I felt anything flooding out. I carried a handbag everywhere that weighed a ton due to the amount of sanitary stuff in it.

At the Haemophilia Society AGM in September I spoke to a friend of mine who is a clinical nurse specialist, she said in her opinion I wasn't having nearly enough factor to control my bleeding, confirming what I thought. However when I spoke to my doctor he wasn't keen to do any testing of my levels - to really investigate how my factor levels were affected by the treatment. He did suggest that I try 1000 units for 7 days and then do 2000 per day after that until it stopped. His concern was that with increased factor my factor VIII levels would be going too high and that there could be other reasons why my periods were so heavy. Fair point I thought and tried the new regime.

The first month it seemed to really do the trick. 9 days of v heavy bleeding, clots and flooding as per usual but then after three days of 2000 units it slowly calmed down and then stopped. 12 days! Yippee, I thought, we've done it!

The next month it had exactly the same effect, 10 days bleeding in total - still heavy but sooo much better for my sanity and sanitary. Hehe!

The next month I hit 10 days with gusto, 12 days still bleeding, 13, 14 with no sign of stopping, until boxing day when I finally clammed up. What was the bloody problem now??

I was due to see my specialist again in January and I was intending to use my 'patient power' ....

Now I'm free ..... free flowing

Since I started having periods again last February I've bled for a total of 152 days out of 364. That's an average of 12.6 days per month, which doesn't sound too bad eh? That is 41.7% of the year that I've spent with a sack full of sanitary products on my person and preferably been within 15 minutes of a toilet.

I figure that the average woman without a bleeding condition could bleed for 7 days per month maybe, which is 84 over the course of a year.

It's ranged from 5 days in the first month to 21 days Jan 07, and so far 9 days this month. I haven't worked out my total spend on Bodyform, Always Ultra and Lillets but I'm sure it's enough to keep them in product development (other absorbant products are available - but are frankly less useful).

I'm not going to suggest that women bleeders should get sanitary prods on the NHS but boy would it be helpful! I'm not suggesting it because when I was in hospital with hideous periods as a teenager I was given unwieldy flannelette covered towels with strings to tie them into your pants, and I don't fancy going back to that thanks.

Anyway, I often find myself staring into a blood covered bowl that looks as if a small mammal has met with a nasty accident in there, thinking why am I doing this?

Anyone who has heavy periods will know that there are solutions out there:

• the hormone pill - which I used so successfully for sooo many years
• the mirena coil - many ladies I've met with von Williebrand's have told me how good this is, although with anything - it works well for some and not for others
• hormone injections - not sure if these are used for bleeders but have friends who would heartily recommend these to knock your periods on the head for three years

I have made a conscious decision not to use any of these things because my husband Adrian and I are trying to have children.

Together with my haemophilia specialist, I have been attempting to control my free flowing with prophylactic factor treatment. This consists of injections of factor VIII concentrate every day of my period. I am lucky because I am able to do these injections myself and can do them at home when convenient. I say trying to control the free flow because even with daily factor injections I was using Super Plus and Super Plus Extra (supersized tampons), with large ultra towels (with wings, obviously!!) for the majority of those 152 days last year.

I will do a running total of how many san prods I use every day if you like? Vote A for 'yes, we want a running total' and B for 'no, shuddup with the tampon talk'.

Gotta go to the loo now, I have a leak ........