Friday, January 25, 2008

Much shorter post than last times today....(thanks for all your input by the way)

I had a gorgeous weekend, randomly spent in Vienna and Bratislava. We flew out on Friday, which was exactly one year after “black Thursday” which was the one time post transplant that my family really thought they’d lost me for good.

Both places were fascinating, I had been very eager to see Vienna as I had heard quite a bit about it but I have to admit having been completely ignorant re anything about Bratislava (which is the capital of Slovakia for anyone who didn’t know) and it has the most beautiful old historical town centre, steeped in history. I’m not really one for appreciating architecture but even I could see how stunning it was. It helped that we had a really brilliant guide who dropped in nuggets of information as we wandered round, keeping it varied and interesting.

I’m not a religious girl but as we wandered into one of the most beautiful churches I’ve ever seen in Vienna, I lit a candle for my donor and had a quiet moment to thank them for allowing me to be here at all.

We also attended a Slovakian party (long story which shan’t be recounted on here) and it was fantastic. The people were so friendly, my goodness can they eat….but the food was delicious, the mountains of homemade cakes being a particularly memorable speciality. Then dancing into the night to various folk songs that everyone in the room (bar us) knew the words to – young or old. A really fantastic weekend.

There was an interesting documentary on last night about CF: A Boy Called Alex. He came across really well, open and upfront and obviously a very talented and determined young man. The doc had the usual traits which annoy me (Dramatic Voiceover: “...but Alex has a disease which could ANY DAY end his life”) but all in all it was a very good documentary. Well done to him and his family for raising more awareness about CF.

Thursday, January 17, 2008

Last night I took part in what will hopefully be the scariest ever media…thing I will ever do.

I was asked to appear as a “Witness” on BBC radio 4’s Moral Maze. Naively I said of course I would and brightly informed the researcher I’d been on You and Yours at which point she said “erm, Moral Maze isn’t quite as...friendly as that.”

It turns out that as a witness you go into the room to be cross examined by members of the panel. And what made me determined to go no matter how terrified I was was one of the panel was the woman who wrote this.

One of the worse cases of irresponsible journalism I have ever seen. I cannot however just write that, as that would merely be bitter and accusational without laying out my qualms with her piece. So here they are.

“The news that Gordon Brown has thrown his weight behind a move to register everyone automatically as an organ donor unless they opt out has all the hallmarks of a major spin operation….If this is supposed to assist Mr Brown’s new year campaign to restore his waning political fortunes, it’s a pretty rum way of going about it.”

Straight away this makes no sense. I will freely admit now I do not have a political brain, but I don’t quite understand how raising an issue as controversial as opt-out can be seen as a political move to gain favour with the public. Surely he’d pick something more people were passionately for, rather than one with such heated debate if it was all about gaining votes?

“There is no more fundamental human right than control over our own bodies and what is done to them, both in life and death.”

Totally agree. Which is why whatever system we have there must always be choice. And there is. Opt in, or opt out, whichever system, the person chooses their final stance on the matter.

“The inescapable implication of a donor opt-out is that we no longer possess such control. The presumption instead is that the state controls our bodies and can do what it likes with them after it declares us to be dead.”

This is the thing that bugs me the most – this discussion flying around that our autonomy will be breached if we switch systems. Firstly autonomy means the right to make your own choices so that’s fairly self explanatory as to why the whole argument is invalid, however lets assume that it’s not and take a closer look.

Again it’s an illogical argument, unless you are saying that in the current system the 70% people who wish to donate their organs are having their autonomy breached. I suspect if I’d had a chance to ask Ms Phillips that she would have said “no because they can choose to donate” and that’s exactly my point, in an opt-out system you can choose to opt-out. And it makes no sense giving more moral weight to the right not to donate than it does to the right to donate. So either way according to her, people are being oppressed, well in that case the logical move would be to oppress as few people as possible, thus switching to presumed consent so only 30% have to opt out.

“There is, however, a yet more fundamental objection to the opt-out proposal. This is the serious doubt whether people whose organs are harvested are indeed dead.”

This part of the argument is what incensed me the most. People getting their knickers in a twist about their rights is one thing. Claiming that people who are brain-stem dead (BSD) are not actually dead is just plain wrong. And it’s scaremongering. And worse than that she’s now not arguing against opt-out, she’s arguing against organ donation as a whole.

I figured that I didn’t know enough about BSD to counter her on this so I researched it. Which is fairly easy to do and I urge anyone who is now nervous to do the same. The brainstem controls our body’s unconscious functions – all the things like blood pressure, gag reflex, pupil dilation, temperature control, water/insulin balances…these things the body does automatically to keep us up and running. And the most important one (as I see it although perhaps that’s because it’s closest to home) is that it controls our ability to breathe.

To test for BSD there are a number of comprehensive tests carried out at two separate times by two separate doctors. Both must have more than five years medical experience, one must be a consultant. Neither can have anything to do with a transplant team. One of the tests they do is they unhook the ventilator for 10 minutes and monitor the blood gases awaiting a reflex breath when the Carbon dioxide level gets to the stage where it would trigger a breath in any living person.

“As a result, people are declared dead while their heart is still beating unassisted and blood is still circulating round the body.”

If she’d read any of the medical documents floating around (which I assume she must have and just chose to ignore this) the heart will stop even if the person remains on life support within hours to days of BSD occurring.

“Some give ‘brain stem dead’ patients a general anaesthetic before removing their organs. But whoever heard of anaesthetising a corpse?”

First of all I couldn’t find any reference of a GA being administered. This doesn’t mean however that it isn’t as I might have been reading all the wrong articles. However she goes on to explain that the reason a GA is administered is due to the abnormal rise in blood pressure. What is supposed to control blood pressure? The brainstem.

“Doctors are discovering that, among patients in a persistent vegetative state whose brains are presumed to have stopped functioning, there is in fact a large amount of brain activity.”

Completely different scenario and I feel she is deliberately playing on people’s misconceptions and fears here, as PVS is not BSD therefore has nothing to do with the tests done before organ donation.

‘Since the patient is not truly dead until his or her organs are removed, it is the process of organ donation itself that causes the donor’s death.’

This just made me want to cry. Imagine all those wonderful donor families out there who have up until now been taking some comfort from the fact they saved lives with their decision and are suddenly panicking that their decision was the thing that killed their loved one. To anyone reading this in that position, as I said on the radio, if you had said no, all that would have happened is they would have turned off the machines and your loved one’s heart would have stopped. They would have died and no other lives would have been saved through organ donation. They were already gone.

“A system the public believes embodies the highest form of altruism rests instead on deception and unlawful killing.”

Again I merely view this as scaremongering – using highly emotive language which she has not been able to back up in her article. Interestingly when asked if she would donate her organs she totally avoided the question. I also wish I could have asked her if she would accept an organ if she were to need one, or if a loved one of hers needed a new heart how she’d feel...mind you I’m sure she would have an answer for that too. Shame she was too cowardly to voice it which would have made me a tiny bit more respectful of her viewpoint if she'd said at least that she'd refuse an organ should it come to that.

OK rant over. But boy was it tough live on air. I hope I came across ok. Oh and before I get told off for not telling people, you can listen to it here (click on listen again).

The one thing the whole debate did make me think twice about is the presumed consent idea removing the gift element. I need to do some more pondering on that one before I come to a conclusion. I also believe that with all the huge misconceptions and myths floating around, months and months of education and reassurance would be needed before any kind of switch if one was to happen. And in the meantime the government has pledged £11 million to help fulfil the ODTF’s 14 point plan (readable here) so let’s just wait and see if they honour that...

Monday, January 14, 2008

I'm sure you've all seen the news over the last 24 hours regarding Gordon Brown's announcement that he is in favour of changing our system to one of opt-out (where it would be presumed that you wanted to be an organ donor unless you registered your wishes that you didn't or unless your family knew of any key reason you did not want to be one at the time of death).

You may have even seen/heard me either yesterday or this morning (Sky, Channel 4 and 2 radio stations).

Anyway what I would really really like (please) is to hear some of your opinions. I am genuinely curious, and contrary to most other areas of organ donation don't hold a strong opinion one way or another when it comes to opt-out. Some people's misconceptions are concerning but I am hoping ongoing publicity will help iron those out.

So please, annonymously or with your name, whoever you are, tell me. What do you think. Opt in or opt out? And more importantly why....please be brave, I could do with hearing what others think.

Then I shall cheat and construct a post in a few days using all of your genius comments. Or something.

Wednesday, January 09, 2008

I've been trying to think how to explain Friday but I have decided that actually that balloon picture says all I need to say really. We released them with little messsages tied to them for my donor. It's hard to know what to say, there aren't really the words.

It was a beautiful day, tinged with sadness, filled with happiness and gratitude. I wanted to do something that morning that I hadn't yet done, and that would've been impossible to do prior to I attended an aqua aerobics class.

I absolutely loved it. It is however the most amusingly unattractive form of exercise I think I've ever participated in. Made even more amusing by the stylish sleek instructure standing on the side calmly demonstrating "and push through the water, in circles, now faster...keep those knees up!" whilst those of us in the water flounder about, panting and splashing in a pathetic attempt to look half as glamorous as she does.

It really was fabulous though and I kept up much better than I thought I would, so I'm going to try and make it a regular thing.

It's been a bit strange since Friday, as I have now crossed that monumentous threshold, I am no longer in my 1st year of Transplant. As far as I know some meds may now change and certain restrictions lifted (although I may have already both travelled abroad and flown - oops) as the team recognises that things between my lungs and I are going rather well.

This time last year I was, well, pretty unconscious really. This year I am trying to be as active as I possibly can to make it as different as Mr different from different land (as my mother would say).

The prospect of the new year stretching out ahead is so exciting; and this time hopefully I will get to experience a full 12 months, rather than be stuck in hospital for vast quantities of it.

Here's to a happy and healthy one for all, yay!

Sunday, January 06, 2008

4th January 2008. More to follow soon.

Thursday, January 03, 2008

Happy New Year all!

What a fantastic New Year it was. We danced the night away, and it's only as I was on my way home that I realised for the first time in years... I didn't cry. It surprised me as I genuinely expected the usual tears to flow, as it has been a year and a half to say the least.

I am full of mixed emotions as tomorrow draws nearer. I didn't sleep last night, although I wasn't aware of anything being on my mind. I have been running round like a headless chicken for the last 24 hours; I think it's something to do with me trying to prove to myself that I am making the most of this amazing gift that I was given almost a year ago. I worked really hard at the gym both yesterday and today - I want to show myself how much life has changed.

Hundreds of emotions seem to be flooding through, many of which are taking me totally by surprise. The below letter is a result of some of these feelings, it's a bit strange I know, and as I say I didn't expect to miss them, but there you go, the human brain is a weird and wonderful thing...

To my old lungs…

It’s been almost a year since you and I went our separate ways. As the anniversary draws near I am finding the most unexpected feelings and emotions are welling up – ones I didn’t even know I had.

It’s almost a feeling of grief that you have gone. I mean I don’t miss your terribly naughty attention seeking antics or life-threatening stunts, but you were quite literally a part of me, and we spent 22 years together, and during that time you worked damn hard.

I guess what drove me to write this is the feeling that you never get thanked. You are always painted as the bad guys and are the sole things which were merely disposed of as soon as the opportunity arose. And yes you definitely well and truly needed replacing but you exceeded all expectations in your capabilities of getting me through things. When breathing seemed so hard as to almost be impossible you kept on going, working hard to keep me alive till I got the call for your replacement, for new lungs.

You overcame the greatest atrocities that CF brought your way – surpassed obstacles that no one thought you could. I remember more than once hearing “This is too much for even Emily to bounce back from” and fearing they might be right, but even when things got so bleak my family were rushed to my bedside in the early hours, you carried on working, out of stubbornness if nothing else. You were a part of me, went through everything with me for 22 years, cried, laughed, sung, shouted with me, and fought back against everything that CF threw your way.

Nearly a year since you became superfluous – thank you for 22 years of magnificent service.