Thursday, August 31, 2006

How is it that at a time when I am supposedly in hospital therefore stereotypically should be bored and isolated, locked away from the world, the world seems to find me and keep me rather busy? This is by no means a complaint, it is fantastic stuff for my mental state, and I am loving every minute. Giant mummyhand has disappeared by the way, and been replaced with new line in right arm, so typing is much easier. Although it was still my main feature when I went on day release, sorry day leave (sounds less Prisoner cell block H like) and some friends and I came up with the idea that I could make a few quid if we propped me up on the roadside with a bucket of soapy water, and hey presto a ready made window cleaning device.

So yes, had a lovely 24 hours at home, including a fabulous celebratory lunch for Lucy’s birthday and a wonderful concert performed by A’s choir, and returned to the hospital yesterday afternoon, tired but very smiley. Whilst resting and absorbing something culturally stimulating on TV, I got a phone call from gmtv, asking if I could appear on the programme the following morning (today). The reason is as follows (bit of current affairs education for you now) The human tissue act is bringing about key changes in the law tomorrow, several will have strong implications for organ donation. I attempted to write a clean, brief and concise summary of the changes, failed spectacularly, and have decided to copy and paste the following which was written by Emma:

1. Relatives will no longer have the legal right to overrule a loved one's wishes to donate organs and tissue. So if someone during their lifetime has made a specific effort to declare their wish to be an organ donor after their death (by having signed the NHS Organ Donor Register or carrying a Donor Card), then their wish to do so will be protected in law and fulfilling those wishes will be a priority for NHS staff. However this certainly does NOT mean that organs will be removed from a person who has chosen to be an organ donor without their family's knowledge. The family will be fully informed of everything all the way along and if they object strongly to the person's wishes being carried out, healthcare professionals will discuss the matter with them sensitively and attempt to encourage them to fulfill the deceased person's wishes.

2. Live organ donation will be allowed to take place between strangers, providing that full consent is given. This mainly relates to live kidney donation and will allow someone to donate a kidney to another person to whom they are not genetically linked (parent/child) or emotionally linked (husband/wife). One particular option that this opens up is called "paired donation". Under current legislation, a wife can donate to her husband, but only if her tissue type matches his. However from tomorrow this couple could be paired with another couple in the same situation, where wife A donates to husband B and wife B donates to husband A.

Sciencey bit over…I was thrilled to be contacted by gmtv but explained I definitely didn’t have the energy to make the journey to the studios to be interviewed. However much to my surprise they were very keen to feature me anyway so set the wheels in motion to gain permission from the hospital to film here. Thus at 5am I woke up, washed my hair (when you are going to be on TV there’s no time for groggy half asleep lungs) and sat back on my bed with a fetching towel turban, feeling smug that I was in plenty of time. Sadly this was premature smugness as the next minute the crew burst in and started setting up to go asap. In a panic I frantically tugged the towel off and began blow-drying hair with visions of manic sonic the hedgehog style backcombed wet look being splashed across the nation’s screens. Luckily my hair is so thin and whispy it dries in less than 1 minute, so somewhat puffed but with suitably tamed hair I sat down and we did the first interview.

I did two for gmtv, 2 for ITV news, one for southern counties radio and apparently was on channel 4 and capital radio as well, which came as a bit of a surprise, but a pleasing one as they had simply used extracts of the above interviews and the more awareness raised the better so I’m not complaining! One of the interviews can be seen at then click on “A transplant patient’s plea” on the right hand side. My lungs were utterly exhausted by the end of the first set (although to be honest frantic and silly hair washing first thing may well have contributed - the price of vanity) but I slept in between the interviews and then all afternoon, and so feel very much refreshed and smiley this evening. It has been a fantastic day awareness wise and lots of people have been using today to raise awareness so well done all! The interviewers and the crews were lovely, and I received a phone call from Andrew Castle from gmtv, to say well done and that he has been wearing his T-shirt out and about (yay!) which I thought was very sweet of him.

I am even more chuffed that I still managed to get a training session in, and the physio said my breathlessness was pretty good considering I hadn’t shut up since 5am (she worded it far more politely). Apparently when she was first sent out to visit me she was warned by my other physio “now when you are working with Emily she will keep talking. Do ask her to stop and concentrate on walking but she wont. Keep asking, but you will soon see she just can’t help herself so then give up”. Anyone who knows me will surely agree this counts as character assassination or similar.


Anonymous said...

hi emily
just wanted to say i am keeping everything crossed for you xx you where brill on itn news :0),have a great day on sunday.hugs and kisses xxx daisy and murphy send sloppy kisses and pinkness cuddles xxx:0)

inga and family xxx

Nicola said...

Ok,that image of your hair like Sonic The Hedgehog literally had me rolling about on my bed with laughter :)(I think i might have a vivid imagination).

Glad it all went so well today sweetie,i saw you on GMTV and ITN,your such a star.Andrew Castle-phoning you!!!Now that is Showbiz :)

Muchly hugs xxx.

Emmie said...

Glad I have my uses when it comes to sciency descriptiveness ;o) And that physio has you so sussed its unbelievable! I gave up trying to keep you quiet long just can't do it heeheee! xxx

Anonymous said...

glad interviews went well, and well done :D keepign fingers crossed that you either get discharged soon or get lungs soon or even both!!!

Anonymous said...

Yey for raising awareness! I clicked on the link you put in your blog but your story didn't come up on the ITN page, and it wouldn't find it for me when I searched either! I shall keep trying :) Glad to hear you're feeling ok, and seem to have a fair amount of energy! Lots of love xxx

Anonymous said...

big woo! for the awareness raising ness!! (or something similar that makes a little more sense and is actually correct english..)
am still laughing at the thought of you with the mummyhand as a roadside window cleaner! beautiful.
every time i read your updates i think to myself - how does she manage all this? and then, every time, i remember - yep, this is em. silly question.
best of luck for sunday & lots of love xxx

Anonymous said...

Can I have your autograph please?

Unknown said...

Well done Emily and all the best for sunday. GOOD LUCK.


Anonymous said...


you are so brave and an absolute inspiration to others. my fingers are firmly crossed that you get your much needed transplant very very soon. if anyone deserves it, it is you. you have always been a fighter, as i know you have from birth, so keep fighting!!!!!good luck for sunday, with love DT

Anonymous said...

OMG! That is wonderful news hun! Thinking of you and praying!