Ooooh

If I carry on doing enough exercise and shift a few more pounds, I can stop taking my blood pressure medication completely! That'll be the first time in, oooh, ten years I've not been on beta blockers :)

On the flipside, my white cell count has tanked so we've had to halve my Myfortic (immunosuppressant) dose to try and stop it dropping further and go back up again, otherwise I'll be super-prone to infections. Hopefully will help, I had another blood test this morning. So I'm back to weekly obs again, boooo. Temporary blip though hopefully, mostly I feel pretty great!

G's on my back to go running more and get fitter. I know he's right, too, I'm just lazy :) Still, cycling 12 miles a day can't be that lazy, can it?! I just hate running, but it really does work. Have been inspired not to bitch about it too much by Eddie Izzard's 1000 mile run round the UK.

Also have booked an afternoon of fun for me n Johanna on our one year anniversary in December. :)

Wow, check this story out

What a screwed up system they have in the US. I can't imagine how anyone is gonna be able to fix it. Even if Obama's reforms get through, situations like this are bound to continue. Glad I'm in the UK and have the good old NHS behind me.

On the flip side, in the comments someone says "this story is about the fact that govt bureaucrats are so ineffectual that it'll take an act of Congress to change this ruling; this is why we fear Obama's reforms". I hadn't thought about it like that. If he was proposing an NHS (which would *never* fly in the US as an idea) that'd be one thing, but from what I understand, all he can really do is propose a Govt-funded insurance scheme for those who are too poor or jobless to find their own private one... and as the private system sometimes also totally fails to support transplant drugs, it really does seem like after 3 years you're living on borrowed time if you have ESRF there... but they'll fund dialysis permanently?! How screwed up is that!

Feeling unreasonable. What to do about it??

I watched a telly feature about cancer earlier; it talked about how cancer patients are entitled to free prescriptions now, and a segment on the huge advances being made and money being invested and patient support services to help them continue to enjoy life and so on and so on....

It suddenly struck me - why don't ALL long term illness sufferers have anything like the same level of focus or support? Even just the prescription thing - I was taking sixteen different daily meds after the transplant, and I'm still on seven different ones each day now. Why do people in our position still pay while cancer patients don't? Diaylsis patients are often just as unwell as a cancer patient on chemo, and yet the level of support is strikingly different and often sadly lacking. Why? Less visible, I spose. Are the charities not very good? Is it too granular, i.e. focussed in individual hospitals rather than national campaigns?

I suppose it's mostly down to the fact that "cancer" is seen as one single threat and therefore one which affects 1 in 3 people, when it's so many different diseases under the one umbrella. This means everyone feels touched by it and therefore it gets attention and is well supported as a charitable cause. (Quite right too, by the way - I don't mean to denigrate the effect cancer has on anyone, I've seen its devastating nature myself, I'm just commenting on the disparity with other life-threatening conditions) By comparison, ESRF patients in particular get very little support in some places. I'm very fortunate to be where I am, there's all sorts of options open to me and I have a strong support network around me.

The perception is all wrong - people see dialysis as a fix of sorts, and transplant is certainly seen as a cure rather than just another form of treatment. I do feel a thousand times better now than I did a year ago, but still I get paranoid every time I get a pain in my side, or a cough, or a temperature, that I'm going to lose it again. And those pills n potions really are for life. Occasionally I get so acutely aware of how fragile this situation feels and I really have to stop and catch my breath and remember that it really is going to be alright, for a number of years at least.

So, what to do about it. The most obvious thing I'm doing I suppose is making sure I tell people I meet what has happened and encourage my mates to do the same - both in terms of the treatment but mostly in terms of the donation and how fantastic it has been for me. I want to publicise it more in other ways too, and though I hate the cliché of "raising awareness" that's really what needs to happen, I suppose.

I still have designs on jumping off Guy's Tower (on a rope!) next year for the KPA charity. Hope that can happen.