Save Jess



‘Em’s on GMTV’ a text from Stepson Two and Gorgeous Girlf tells us. Em is Gorgeous Girlf’s eldest sister. Blonde, bright, articulate and vivacious, Em, sitting on the sofa chatting to Penny Smith might be there to promote her latest film or talk about her current book. But Em’s story is far more remarkable. Three years ago the damage to Em’s lungs caused by Cystic Fibrosis was such that only a lung transplant could save her life. The family, as Em’s other sister writes so movingly in her blog, were sat down by doctors and told to say their goodbyes.

Em’s story ended happily because in January 2007, the lungs became available that enabled her to have a transplant, become well and lead a full, happy life. Oh, hang on, ‘the lungs became available’- yes, another family put aside their own grief and turmoil so that a stranger could live. Lots of heartache and difficult decisions. Em and others have worked hard to address those issues and give a voice to those affected by transplant through ‘Live Life Then Give Life’, a registered charity set up to raise awareness of organ donation and the chronic shortage of organ donors in the UK. Today, Em is talking about what the shortage of people on the Organ Donor Register means to one person in particular, her friend Jess. Jess is currently in hospital, her lungs are failing and only a vital transplant can save her life. Until more people are prepared to consider organ donation, the clock is ticking for Jess and others like her.

Since last week we’ve caught up with my cousin and his family, we’ve had Ma to stay (I’ve been very brave and given her FTT to read, complete, unexpurgated and including the bit with the Vigorous Horizontal Romp –eeek!), we’ve helped Rose and Si move into their lovely new home, we’ve seen my sister and her family, Tom’s brother and his family, visited Stepson One in his flat, been to the beach with Stepson Two and Gorgeous Girlf, stayed with Mil and Dil (and brought them back with us on a kind of return-one-bring-two-back basis) and had tea with Lily on the way down and on the way home. We didn’t get to see friends in the south but, hey, everything being equal there’s always another weekend when I can catch up with them. For Jess, in her hospital bed, that may not be true.

Cardiff Half Marathon
Runner’s World SmartCoach Programme week 12 – 14 miles. 4 miles lost due to travelling and bad back combo.

Comments

Flowerpot said…
my god what a week Chris! And what an incredible story about Em and that poor Jess. Oh I do so feel for her. By the way - what did your mum think of FTT??!!
JJ Beattie said…
Good grief, you've been busy. Have you had any time to write during all these shenanigans?

Husband and I have agreed that they can have whatever they want from our bodies. (Will they want anything?) We've agreed it while not distraught in the hope that we remember, you know, should we need to...
pinkfairygran said…
As someone who has also received 'the gift of life' - that's a transplant for those who have been living on another planet for the last three decades or so! - I heartily endorse everything that was said on GMTV about the need for more donors. All too often people have the glib attitude about donating their organs - 'well, after all the drinking/smoking etc., I've done, mine won't be much use to anyone.' Maybe this hides a fear of the subject, certainly isn't a positive attitude to DO SOMETHING ABOUT IT!!! People are generous with words, sadly not so when it comes to actions. It seems it's too much bother to leave a gift of life... let's hope none of them ever need one themselves then?
Sorry, as you can tell, this is one of my soapbox rants too, and I have worked also, quietly, behind the scenes, to get things changed about the system of organ donation.. and despite the generosity of words from MPs and the likes, it's still in a mess.
Frances said…
Chris,

As always, you've written a fine post.

This one has a wonderful theme, as does PFG's comment.

I've got some thinking to do now.

xo
Elizabethd said…
A very thought provoking post Chris, and one that , as Frances says, leaves you thinking. We do take good health for granted at times.
Preseli Mags said…
As Frances says, a fine post. I interviewed the family of a young boy once. He died in a car accident and his organs helped seven different people. It was some comfort for his parents at such an awful time, and it's nice to hear of people, like Em, having a new lease of life.
Sorry to hear about your bad back - mine too. Very annoying. I watched a bit of the GNR at the weekend, but had to switch off. Too scary!
Miss Write said…
Hi Chris, what a great blog - can't believe I've only just discovered it. I am the other sister of Gorgeous Girlf/Em - it would be wonderful if you could follow mine too! www.misswrite.blogspot.com
her at home said…
Do they still have donor cards in the UK that people can carry with them ? I had no idea they could even transplant lungs! Well done EM and her family for coming to terms with the situation and going on to try and help so many others in the same situation.
Debs said…
So sad to hear of someone so young being that ill. I've twittered the blog you linked to.

Your week sounds hectic, to say the least.
elizabethm said…
What a week! And a very thought provoking blog. I have been thinking about carrying an organ donor card for years now and, as PFG so rightly says, just not doing it. You have given me a kick up the pants, thank you.
patsy said…
Organ donation is such a difficult subject to discuss but so important to do it now while your loved ones are in good health. We carry organ donor cards and have made our feelings plain to relatives, should the worst case scenario happen. Just thinking about being the position to authorise donation of one of my family's organs makes me sob with grief but then I think of the mother on the other side of the equation. Her child is alive but failing..how could you not help?
bradan said…
Very thought provoking post Chris. My second son's best friend died at the age of 16 whilst waiting for a heart transplant. If only more people carried donor cards.

And how come you can fit so much into your days? Have you got elasticated time or something?!!
hello Mrs Frenetic traveller - gosh that was a whirlwind.
We all carry donor cards and are all aware of each other's wishes. With G now looking as though a cornea transplant is the only way to restore his sight we are acutely aware of the need for folk to make their wishes known.
Calico Kate said…
I so agree with you on the organ donation thingy - and am directly affected as my B has had two kidley transplants the first was a 'cadaver' transplant which lasted for 18 months the second was a live donor transplant from his brother, that lasted 16 years. Sadly transplants don't come with a life time gaurantee and so they are needed all the time. But it isn't just organs blood is desperately needed too. Sadly for various reasons I am unable to give blood or donate organs at the moment and find it very difficult not to be able to do so.
If anyone can carry a donor card please please do.
Great post Chris.
CKx
gaelikaa said…
Well, I hope and pray that Jess survives this and goes on to have a wonderful life. It is great that Em was able to survive and live her life so fully. I am glad I was able to read that story from such a personal perspective.

You have been busy with a lot of family stuff lately. You remind me of me! :)
muddyboots said…
that is one wee - everyone here at home are prepared to become donars on death, no question about it. simple really if only everyone else thought the same.
Edward said…
I simply don't understand what possible argument there could be against a system of organ donation where you have to opt OUT rather than opt IN. What are you going to do with those lungs after you're dead? Not that there are many bits of me after the Great North Run (1hr 32m since you asked!) that anyone in their right mind might want...
Cottage Garden said…
Oh my goodness Chris that's made me sit up. Poor Jess. As you say organ donation is a difficult if not downright impossible decision to make when just bereaved. I became a Donor Card holder when I was 21, shortly after my mum died. I'm happy for them to take anything that is required and I really urge anyone to think about becoming an organ donor. It can absolutely change lives and has done for PFG and CK's husband. I'll get off my soap-box now!

What a hectic week you've had Chris - it must be good to catch up with everyone though.

Jeanne x
LittleBrownDog said…
What a remarkable story, Chris, and one that really does put so many of our everyday worries and gripes into perspective. Something to really think about.

On a lighter note, can I just say how very much I'm looking forward to reading FTT - even more so now I know there's a vigorous horizontal romp episode (and not just so I can read it imagining your Ma's avid expression and eagerness to find out What Happens Next. So much looking forward to hearing about her feedback).

Hope bad back is now a thing of the past and you're up and running once more.

xx
ChrisH said…
Thanks all for your fantastic responses. I'll reply asap - a bit snowed under with visitors this week.
mountainear said…
What an exhausting week.

Em's story and Jess's too bring the reality of organ donation home - a thoroughly worthwhile and simple thing to do. I signed up a few weeks ago and my 'card' arrived this week. I suppose it's something that'll only be any good if I'm dead - which brought me down to earth with a bit of a thump. But then I'm not going to want any bits of me then am I?
ChrisH said…
Fp, still waiting the verdict from Ma - mind you she's quite racy and will probably complain that it's too tame.

JJ... no writing at all. Fingers crossed I will start again soon.

PFG, hopefully you will have read my comment on yours. Thank you so much for sharing your experience and also your frustration with a system that clearly needs to be rethought.
ChrisH said…
Frances, yes, reading PFG's comment in addition to Em and Jess's stories really make you think.

Elizabethd - it's so easy to take it for granted until something comes to bite us.

Mags, that must have been a tough interview. Commiserations on the bad back... we'll be hobbling over the finishing line together at this rate.

Miss Write, Welcome and thanks for your very kind comments, but it's your post that really tells it like it is because of you direct experience. Consider the following done.

Debs, thanks - and you're having a busy time at the moment too with offspring off to university.

Elizabethm, hoping not to kick anyone - just make people think about the issue. Thanks for your comment.

Patsy, you've really pinpointed what makes it so tough on one hand and so easy on the other. Thank you.
ChrisH said…
Her At Home,yes,and yes - Em's transformation has been absolutely wonderful to see, but gosh, they've had some tough times.

Bradan - heartbreaking story and, it seems, tragically common. Elastic time? I wish - just race around alot.

SBS, G's story really moves me, not least because I'm so short-sighted, but his experience was terrible. Good luck to him for university - sounds as if he's got his mother's spirit.

Kate, thanks for sharing that; something else I've learned about transplants. It sounds as though both you and B fight ongoing battles.

gaelikaa, lets hope so. On the busy front - well, I think you do the family stuff with incredible diplomacy... which is more than I do sometimes!

Muddyboots- I puzzled at the first sentence until I saw a gremlin had got it! Well done to you and yours for coming to an agreement you are all happy with. It seems that more families should do the same.

Edward, that does seem to be the obvious solution. Well done on the GNR - I enjoyed reading the report too, but, phew, that was quite an expensive run!

Jeanne, it's interesting how a watershed in your own life can lead to a particular choice. Well done, you. Yes, lovely to catch up - tiring though.

LBD - I know, it does make you think your own troubles don't amount to a hill of beans. Btw, have you met my ma? You seem to have a very accurate picture of what she's like!

Mountainear - what a coincidence that your card turned up this week. Yes, it does make you think about your own mortality and that of your loved ones, clearly that's one of the issues that makes people think twice - you've got past that, well done.
Fennie said…
That's a moving story. I certainly hope parts of me will live on when I'm gone. Take whatever you fancy because I shall need it no more. Indeed rather fun to think that bits of you will still be acting up far into the future. My father died - of a similar sort of lung condition at the age of 82. A transplant was never proposed even though apart from his lungs, he was fit as a fiddle and sharp as a button. So glad the story had a happy ending.
Debs said…
I've tagged you for an award over at mine.
Tinypoppet said…
Hi Chris,

Got here in the end ;) Gorgeous girlf did point this blog out to me but I lost the link under pages of notes!

Thank you for your wonderful blog about Organ Donation; it's so interesting how few people have actually stopped and thought about it, despite the fact that statistically, you are more likely to need a transplant than ever to become a donor. And 1000 people die every year whose lives could have been saved by a transplant.

Jess is still battling on. She's tough...but she's not superman. I hope this call comes in time, I really do. Without mine, my blog would now have a sub-header reading "1984 - 2007" which says it all really.

Thanks again for highlighting such an important cause, and one so close to my heart.

best wishes :)

Em
ChrisH said…
Fennie, I like the idea of my parts acting up far into the future (oo-er!). Let's all hope that there's a brighter future for Jess.

Debs, an award? How exciting. Scampers off.

Em, hello Sweetheart, what a lovely family you are. I'm really touched you and Miss Write found the time to visit, but even more that you approved of the post - I'm very aware that I am only highlighting a subject that you know only too well. I've learned so much listening to Gorgeous Girlf about the cost to families caused by the agonising wait for a suitable transplant and it really brought home to me what Jess, and those close to her, must be going through. It's very sobering to think of what that sub-heading to your blog might have been - let's hope Jess gets the transplant that will save her life too. Cx

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