Tuesday, June 12, 2007

It seems to be another quite tough week for the CF community. I follow the blog of a girl in America who received a double lung transplant, rejected, then went onto receive a single lung transplant, then sadly rejected again. She died a few days ago, and messages of condolence have been pouring onto her site. She was incredibly brave and would talk candidly and openly about death and her feelings towards it. Reading other people’s experiences is helpful and useful as it allows you to feel you are not the only one going through these things. It also makes your experiences seem more normal and less frightening when you hear other people have been through the same and made it out the other side. However the bitter side of that is you watch people in a similar situation to yourself not do so well, and sometimes sadly die. It’s frightening yes, but I am sure it is frightening when anything that focuses your attention on your own mortality happens.

I received an email from a friend of mine today who has been waiting for transplant for some time. She informed me in a calm and dignified manner that she is now too ill to undergo the operation so is making the most of the time she has left.

It makes me sad and it makes me angry. It shouldn’t be this way. Even worse the friend in question had several false alarms, none of which ever came to anything. Thanks to the CF Trust and our Laughter for Life! gig, a new donor coordinator is being employed by Harefield to try and cut down on the number of false alarms caused by non viable organs. But why is this being self funded? And why is it not nationwide? As far as I am aware, in America they have these coordinators in all hospitals with ICUs, and when this was introduced the number of transplants went up threefold. I just feel disappointed for her and her family that this chance has been missed. She is as I said extremely level headed and I am sure she would not want any pity. Instead she is focusing on putting as much quality as possible into the time she has left.

Things with me are absolutely fine, I am happy and content and living a fantastic life. All this is only thanks to the gift of a stranger. It’s just another reminder to me really that I am just so incredibly lucky. Just because it happened for me does not change the fact that for 50% people waiting for double lung transplants it will never happen. National Transplant Week is coming up soon, hopefully there will be lots of media attention on the issue around that time. What about your work place? Could you do anything? Perhaps order a free box of UK Transplant stuff and have it in the foyer of your offices or something? Have a think…

(my that's a lot of weblinks. Check out who thinks she has mastered it)


Zoe"s Mum said...

Hi Pink and Smiley,
I've been reading your weblog bemoaning the fact that so many people have the wrong idea they can't be organ donors because they think they are too old, or unable to because of some medical condition. I am delighted to say that help is at hand. Do you remember Jacqueline Gold promising to print 50,000 copies of 'Transforming Lives'our inspiring book of personal stories from donor families, recipients of all kinds of transplants and medical professionals, on the Million Pound Giveaway this February? Well Jacqueline's promise has been fulfilled and we took delivery of all the books this week. I can send you lots to distribute to surgeries, libraries, schools, colleges, universities and wherever else they may do good. They are available to anyone who would like a copies and are free of charge although donations of £10 are appreciated to cover postage and enable more copies to be printed. Check out our website: www.legacyoflife.org.uk for more information and how to order copies.

I am delighted your transplant has gone so well. As the mother of a donor, I know it will be a great comfort to your donor family to know that.
Sue Cansdale, Project Leader, Legacy of Life xx

Anonymous said...

I'm so sorry to hear about your friend, Em. It's just not fair that some people don't get the chance they deserve. I hope she can enjoy, and make the most of, the time she has left.
I too follow Steph's blog, and was so sad to read that her time had come to an end. She was a very strong and inspirational person :)

If there's anything I can do for NTW just yell (well, emailing might be a slightly more sensible option), and if I think of anthing specific I can do I'll be sure to contact you!

Love always xxx

suzie said...

Yep, you sure managed to master the link thingy. I've never thought about putting info on reception at the workplace before, what a good idea, will get something organised for hubby's place of work pronto.

Take care chuck
Sue x

Anonymous said...

Hi Emily,

I've been following your blog for some time, both because I am enormously impressed with the mature and inspirational way you have dealt with your illness, but also because of the quality of your writing - a pleasure to read whatever the subject.

Is there any chance of posting a link to the blog of your American friend? I too would like to post my condolence - a life lost is a tragedy. I shall also hold your other friend in mind - how brave she must be to face the world knowing what she does.

Tinypoppet said...

hi anon - weblink to her page now added in yesterdays blog. She was a very open and skilled writer.