Friday 23 November 2012

A bit about Factor V Leiden

I've realised I've made allusions to Factor V Leiden in earlier posts but not really explained properly what it is and why it's important in the context of recovering from bunion surgery.

This website gives a good overview, and Wikipedia is always useful, but in case you can't be bothered to click on the links, it's a genetic disorder, so it's inherited, and is what they call the equivalent of a typo in a single gene.

Basically, it means I have sticky blood which clots too easily, putting me at a greater risk of Deep Vein Thrombosis even in everyday life and obviously, as I'll be pretty immobile after my bunions are done, I'll be at very high risk while I'm recovering.

Factor V Leiden is the reason behind my five first-trimester miscarriages, and I only found out that I have it as a result of investigations at St Mary's Hospital, Paddington, the world-leaders in research and treatment of recurrent miscarriages (counted in the UK as being three in a row).

Thankfully, the treatment for it while I'm in recovery is easy - either heparin or warfarin to thin my blood and prevent it clotting.

The treatment for next time I get pregnant is similar - daily heparin injections (ugh) and a low dose of aspirin too.

I'm actually still waiting to hear if I also have Anti-Phospholipid Syndrome, another clotting disorder, but the Factor V Leiden is the main one. APS is acquired rather than inherited.

I don't think that for the purposes of this operation it makes much difference if I have APS as well. It makes a difference when I'm pregnant (I'll need a higher dose of aspirin from 34 weeks), but I hope that St Mary's will actually manage to get my results to me by then. At the moment they seem to have lost them, but anyone who knows my general views on the NHS will know that does not surprise me.

A chat with the anaesthetist

I had a call this week from the anaesthetist at the hospital. I'm not sure if it is the one I'll have next Monday, or just one of the team, but she called because of what I'd told them at the pre-op assessment, about how I always end up passed out on oxygen after a general. (OK, 'always' sounds a bit OTT, I know. It's true but it has only been twice.)

At first, she was threatening not to anaesthetise me at all! Eek! So I explained what usually happens - I come round OK, then I suddenly go tingly, see flashing lights, I feel incredibly heavy, then I come round with an oxygen mask on my face. It's pretty dramatic and the nurses always look worried.

The anaesthetist was unimpressed.

"Oh," she said. "That's just a faint."

Just a faint? I dine out on this story!

She explained that as I have low blood pressure, and a GA lowers it even more, I'm fine when horizontal but put me upright and pow! Blood 'rushes out of my head' (her phrase) and into my feet, and I pass out.

Suddenly it's not such a great story, but the plus side is that I can still have my surgery, and all I have to do is make sure I'm kept horizontal for longer when I'm on the recovery ward.

So Thunderbirds are still go.

I did decide not to talk to her about wanting, as my anaesthetist friend told me, a Des and Remi. I'm saving that for the day itself. I want to see their faces when I ask.

Sunday 18 November 2012

Pre-op down, two weeks to go!

This is the first chance I've had to update since I had my pre-op assessment on Friday. Sadly, since it was the NHS, I didn't get to ask my questions as it was clear that the person I was seeing had absolutely no knowledge of my procedure at all.

The assessment block at the Royal Berkshire Hospital (RBH) is actually a Portacabin in one of its car parks. So far so very NHS. To be fair, once the staff had stopped arranging their Christmas night out and actually paid me some attention, I did only have to wait 20 minutes to be seen, which is surely some kind of NHS record.

And the people I saw were very nice. And obtained the information from me that THEY need. It's just that I didn't get the information that I need. Which was more than disappointing.

I did manage to get a leaflet out of them once I'd a) asked for one and b) insisted that they really ought to find one as telling me 'we don't have one, sorry' wasn't cutting it.

But I have learned far more on the internet than I did from the hospital and that's a poor state of affairs.

I was hoping to get a lot more detail about my expected recovery and to discuss the anticoagulants I will need post-op because of my Factor V Leiden inherited clotting disorder.

But the nurse simply assured me that I will be walking within days (er, really? Not according to the many blogs I've read from people who have actually had this done. Not to mention that for nearly two weeks I'm supposed to keep both feet elevated above my pelvis level for 90 per cent of the time. If you know a way of walking around like that, let me know.) And assured me that, I quote, "If you need drugs then they will give them to you."

Yes, I would hope that would be the case, but actually, I KNOW I will need them, my consultant at St Mary's tells me so, my common sense tells me so, and so, ya know, I'd really like to discuss them with someone BEFORE the day of surgery. Not least because as a breastfeeding mama I need to make sure anything I take is not going to adversely affect the Little Lady. Although a quick look at the excellent resource that is the Breastfeeding Network tells me it should be OK. See here.

Sigh. It's obvious the nurse had NO knowledge of a bilateral scarf osteotomy which is really annoying although not surprising, sadly.

So now I'll have to try and contact my surgeon and get a chat with him before the operation, which I can't imagine is going to be easy.

But I don't want to leave these conversations until the day itself, especially if I need heparin afterwards and will have to inject myself as I will need to learn how to do that when I am not groggy from anaesthetic and in pain from major surgery!

I do sometimes wonder when the NHS is going to finally implode from its arrogance and incompetence combined, but I guess there are just enough decent staff to keep its head above water at the moment. Let's hope I encounter lots of them over the next few weeks.

Tuesday 6 November 2012

Vanity issue #1 - sorted!

Remember I mentioned I was having my hair straightened by my friend? Well, she did it last week and it is AWESOME!

I have the kind of hair that, left alone to dry or exposed to a smidgen of dampness, will react as though I've stuck my finger in an electric socket. Frizz central. so not a good look. I would share a picture but, you know, I'm too vain.

So. My lovely friend Lisa used her special wondrous stuff on me.

Actually, it is called Copolla Keratin Smoothing Treatment, but I call it 'that magic stuff'. Have a look here for their website. (Although you will note you don't seem to be able to buy the actual smoothing stuff on there. Lisa got hers from the States. Salons over here have it but don't sell it, but there must be a way, damnit, there must be a way...)

It took about three hours to do the treatment, which was nothing but a pleasure with Lisa and some incredibly tasty salted almonds, involving washing it and drying it bone dry, then painting the stuff on with a paintbrush, then straightening it with about ten passes of the straighteners on each section.

Then I wasn't allowed to wash it for three days. It was straight. Very straight. But increasingly greasy.

When I was finally allowed to wash it I was having a day in and so decided to let it air dry naturally, for kicks. I would NEVER normally do this as it would result in me needing to re-wash my hair and dry it properly in order to be able to leave the house without people laughing.

But this was IN. CRED. IBLE. My hair dried smooth, straight and lovely!

In my world, this is a Life Changing Event. (It deserves the capitals, believe me.)

So now I have no fear about my hair during my recovery period cos I can just wash and go!

Ah vanity, thou art sated.

Two weeks in bed? aka preparations for being bedridden

As the weeks march by (less than four to go!) I've been thinking more about what to do with myself when I'm stuck in bed.

I've no doubt that much of my time will be spent saying, "No! Don't jump on the bed! Get away from my feet!" to the Little Lady, who at three years old really cannot understand the concept of Mummy being ill for a day or so,let alone being bedridden for a fortnight.

But apart from that, which will be mucho fun, obvs, I was thinking about what I can do.

I'm really into sewing at the moment, using my machine, but I won't be able to use it while my feet are recovering (must get projects finished before then, must get projects finished before then, must get...) and I'm not a huge fan of hand sewing because it is so laborious.

So it's back to my knitting. I have an, ahem, Easter jumper that didn't quite get finished for Easter. The endless repeats of the lovely lace pattern killed my interest earlier in the year, but it is such a pretty top I think I'll knuckle down in bed and actually finish the darn thing. I've done all the hard part now anyway and it's just rounds and rounds of the body to do then sew up underarms and done! Maybe I should rename the Christmas jumper? Or even the bunions jumper? Hmmm.

There is also a WIP (work in progress) that will be a lovely cabled bag one day so I will have to have that on my bedside table too. I've no idea if I actually have enough yarn for that one as I was gifted a skein of bee-oo-tee-ful Rowan tweed which I don't think I can get another of.

But how fun will it be to get nearly finished and then run out? Oh too fun!

Lots of reading (any book suggestions gratefully received) is a shoo-in, plus time writing this blog, of course.

Maybe that will keep me busy enough? I am assuming that the pain and the meds won't conspire to make concentrating on things impossible, of course.

I guess if all else fails I could put my mind to creating some kind of preschooler-proof leg protector.