Wednesday, January 23, 2008

The Vampire Shift

In what's known as 'The Vampire Shift' at my hospital, I dialyse late at night three times a week. Apart from the fact that vampires only come out at night (or so I've heard) the other reason that the shift is named after our sharp toothed friends is that in simple terms the function of a dialysis machine is to whip out my blood (slowly, mind) through a small tube in my chest (one of the bains of my life, the other being a certain Playstation 2 game) and put it through a fluid called dialysate which helps remove all the nasty stuff from my blood which my un-cooperative kidneys cannot do. It also helps get my electrolytes and minerals to their proper levels in my body. 

I weigh myself when I get to the hospital so my nurse (Dilsha - who never fails to tire me with her great stories) can program the dialysis machine and tell it how much fluid to take off me. This is usually fool proof, but occasionally I will be wearing a particularly heavy pair of jeans which can throw the whole system and leave me departing the hospital feeling very faint and weak...cue downing loads of water to replace lost fluids. 

I can usually while away the hours watching a good film, frustrating myself by playing a near impossible game on my Nintendo DS or chatting to a certain someone which definitely makes time go faster. Sleeping is usually out of the question due to the amount of dramas and noise going on around me but I try to drop off when I can. When the machine gets agitated or I lean on my line it plays a series of alarms to call a nurse over to sort it out (one weirdly sounds like the first few bars of Happy Birthday as my boyfriend likes to point out) and then when the three and half hours are up and I am feeling a great deal thinner it plays a little happy tune and I can be taken off the machine and allowed home. 

There are only two other people who dialysis at the same time as me. A wonderfully eccentric French lady who is very entertaining with her flamboyant singing and her huge crush on one of the male nurses, and a taxi driver who is much quieter and spends the whole session watching loud action films. Both are in their late 40s and sadly have been waiting for a kidney for a lot longer than I have.

I have been on coming to the hospital for these late night vampire sessions (as my boss now fondly calls them) for just over a year now. And before that I spent just under 3 years on a type of dialysis called Peritoneal Dialysis which I did at home, but that is as they say, a whole different story...

A picture of my view for 11 hours a week! 

Monday, January 21, 2008

kidneys..or lack thereof!

After the massive amount of press that has been racing around the media circuit about organ donation and the proposition of whether the UK should introduce an opt out system, I am starting a blog to document my experience of being on the UK transplant waiting list and how having kidney failure is effecting me.

Obviously I am slightly biased to the fact that I would love the UK to operate an opt-out system and I do really believe this could really work and change the lives of so many people. However, as pro opt-out as I am, I am trying to see both sides to the story and understand why people may be afraid or against organ donation. 

One of the main problems is getting people to actually understand the facts of how organ donation works. Journalists such as Melanie Phillips who wrote this article are clearly scaremongering people, by feeding them with facts which are not even near the truth. More on that later...

There is also definitely not enough awareness about what actually happens when one decides to donate their organs, I think this is partly to do with the fact that it is a subject that can't be discussed casually round a dinner table; it's a taboo subject and people would rather not talk about it at all. The Government have proposed to put a lot more money in to educating people on this subject which is great, and they have also proposed that there be 100 more transplant co-ordinators which would double what we have now. 

Health wise I am able to hold down a full time job (with a bit of give and take) and lead a good life. Dialysis 3 times a week is hard and leaves me feeling very unwell a lot of the time, but it's got to be done and I tend not to dwell on it. At least I can actually be kept alive without my vital organs  unlike people who are in need of a heart, lungs or liver. 

I was also lucky enough last week, in the midst of the opt-out debate, to go on BBC breakfast news with the inspirational Debbie Stoner to talk about my experiences with kidney failure and what I think about the proposed system. I only had a few hours notice from the BBC, and managed to qualm my nerves until I was ushered in to the tiny studio, miked-up and sat on the red sofa. Luckily all went ok. Click here to watch the interview. 

I was also filmed for the 10 o clock BBC news the day before, where a cameraman and interviewer came to my office and filmed me talking about my experiences. They interviewed me for roughly an hour and asked me so many things from how I saw life in the future to how I was first diagnosed. I actually came away from the interview feeling quite emotionally exhausted, I didn't really expect to feel like this but I think it made me realise actually how desperately I want a kidney transplant...Oh and for those of you who were wondering, I actually work in a production office which is why I was holding a camera - I wasn't just let lose in the BBC studio! here is the link to that news piece. 

On that note, I actually better do some work, but here is a link to a sport I think we should all take up.. Much more worthwhile than football.