PHEW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! *and breathe*

"Hi Helen

We discussed your case and I faxed the surgeon this morning. Basically we would like you not to take prophylaxis the day before the surgery but instead have it 2 days earlier. Preoperatively you will get 5,000u of Haemate P.

I have told the surgeon that your bleeding disorder is more severe than haemophilia and if they biopsy anything you will need to stay in for treatment for several days.

Furthermore if they do any biopsies through the colonoscope, they will have to quarantine the scope for your use, only, for ever more.

I will be extremely surprised if they do anything more than biopsies and hopefully they will not even do that.

In the event of you needing anything more major done, it should be done electively with a lot of planning later on.

I suggest you speak to the surgeon that will be doing it when you are admitted and I am sure they will be reassuring regarding proceeding to anything more major.

Regards

Mike"

....................................................................................

This was in response to my email to Sheffeild Haemophilia Team and Mike Makris:
"FYI/update/concerns (Mike please don't answer this if you are on holiday!):

Went for pre-op assessment. They didn't go through any specifics re surgical procedures other than saying depending what it is they find they will: "cut me open above the pubis and jiggle my intestines around!"(*cough*), "staples", "banding" and other things depending on what they find wrong. I zoned out after staples were mentioned! I think bowel stapling and vW type 3 might be BAD?! I can't speak to the surgeon re procedures to fix what's wrong till the night before the op, which concerns me somewhat, as I feel we need plans for all eventualities :-/.

What I'd also like to know is if they go ahead with some mod-major surgery to fix something that I can also have a picc/central line inserted? I had dreadful problems accessing old faithful at home and I also blew the main fistula vein(does v W make venous walls more fragile?), it made prophylaxis for the week after discharge basically not happen as agreed, which in turn made me quite anxious about post-op haemorrhage.

The Sleep Clinic at Leeds (yesterday) said that the anaesthetist should proceed as if I have moderate obstructive sleep apnoea(just like they did for the lap chole).

I have had no GI bleeding since lap chole, nor any significant problems regarding constipation/diarrhoea.

My 28 day period ground to a halt after a dose of Depo Provera last Friday, 26th.

My wounds/scars/Picc site have all healed very nicely thank you. Though I am still haematoma’d on belly from that daily anti-coag jab(Clexane).

Thanks to Cathy for the answerphone message.

Oh and my sick note ran out on the 30th October – please can I have another one please? I presume I will see one of the team on Monday 5th, if you bring it then I will bring SAE.

And thanks very much to whoever sent my Leeds Hospital Fund documents on :-) much appreciated.

Warmest Regards

Helen x"


AND I GET MY OWN PERSONAL COLONOSCOPE-WIN!