Tomorrow will be my first Christmas with my new lungs. I've been feeling very emotional in the run-up because of course at Christmas time, you reflect on the lows as well as the highs of the year. I'm only slowly realising quite how ill I was while waiting for transplant. Having to be so frank about my mortality is something that I know will change my outlook on life for the rest of the time I have left on this earth.
And of course I am thinking a lot of those that didn't make it. My wonderful friends that I found via twitter who were going through the same things as me, but unlike me weren't able to get their transplants in time. I can't imagine how this week will feel for their families, as all around people are full of joy while they are full of sorrow. But each person I know who died, lived their life on fast-forward - filling it full of achievements, thoughtfulness and love and it serves as a reminder to me, that however long my new lungs last, that life will always remain purposeful if it can be lived in a similar manner.
And then there is my donor. Only in the last month or so have I felt mentally and physically strong enough following my transplant to truly realise everything my donor has given to me. She was a woman who died young, and yet even in her short life she made the phenomenally generous decision to help a stranger live if the worst was to happen to her. I only hope that as her family face this Christmas without her that they have received some comfort knowing that their daughter saved the lives of others. In my eyes she'll always be an extraordinary woman.
In the last month I've often found my eyes filling with tears when the Slade song 'Merry Christmas everyone' comes on the radio - a strange reaction considering it is so jolly. But I think its because of the line:
"Look to the future now, It's only just begun"
My donor has given me back my future and it is the most incredible and joyous of gifts. My gratitude is immeasurable.
If you believe in organ donation and haven't yet signed up then please do. And do tell your family of your wishes. https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/consent.asp
Showing posts with label organ donation. Show all posts
Showing posts with label organ donation. Show all posts
Tuesday, 24 December 2013
Wednesday, 13 November 2013
There but for the grace of my donor go I.....
Today Emma Jane Kingston should be celebrating her 21st birthday but she died earlier this summer from Cystic Fibrosis (CF). She needed a lung transplant but, like a staggering one in three CF people on the lung transplant waiting list, she didn't get one in time.
One of the frustrating elements of my illness, Cystic Fibrosis (CF), is that due to cross-infection risks I can never mix with people who also have CF. So as my health worsened last year and I started considering trying for a lung transplant I sought out people on twitter in the same scenario as me. And that’s where I met the indomitable Emma Jane Kingston or, in the world of twitter, @betseybunny.
We were both being assessed for a transplant simultaneously and we met for the first time at Harefield hospital's outpatient department - we both had our first assessment day on January 16th 2013. But whereas I could barely talk about it –hiding the deterioration of my health away from the majority of my friends for most of the six-month assessment process - she tweeted about it to all and sundry. I’d send her private messages on twitter saying I wasn’t ready to talk about it publicly and she’d berate me asking how could I cope with the stress in secret.
I’d say to my husband in private, sounding like every one of my 32 years, that young people talk about their life too openly on the internet. But I’ll concede that perhaps I was the one in the wrong. Using the web, Emma opened people’s eyes to the pain that people with invisible illnesses can suffer. She made people rethink their perceptions about what it is to be seriously ill, as despite her deteriorating lung function, she was outgoing, made the most of life, kissed boys, went to festivals, dyed her hair seemingly every month and did I mention she was absolutely stunning?
But then when she died, and when other online friends of mine have died, how do you grieve? You can tell your friends but it somehow doesn’t seem as serious to them as Emma wasn’t a physical presence in my life, she never popped over for a cup of tea or glass of wine in the sunshine.
Her family will never know the hundreds of people in the UK and around the world that have mourned her death. She may have been only an online presence in my life, but her death has been felt deeply by all those that followed her blog, read her tweets, messaged her on Facebook. So on behalf of all the tweeters who mourned your loss: Emma, you were respected, you were admired, you were loved.
I finally received my double lung transplant on 30th August this year. When I think of Emma, I'm overwhelmed with the thought that there, but for the grace of my donor, go I . Emma spent her last few months trying to raise awareness of organ donation, so please consider signing the donor register: www.organdonation.nhs.uk
Emma Jane Kingston
One of the frustrating elements of my illness, Cystic Fibrosis (CF), is that due to cross-infection risks I can never mix with people who also have CF. So as my health worsened last year and I started considering trying for a lung transplant I sought out people on twitter in the same scenario as me. And that’s where I met the indomitable Emma Jane Kingston or, in the world of twitter, @betseybunny.
We were both being assessed for a transplant simultaneously and we met for the first time at Harefield hospital's outpatient department - we both had our first assessment day on January 16th 2013. But whereas I could barely talk about it –hiding the deterioration of my health away from the majority of my friends for most of the six-month assessment process - she tweeted about it to all and sundry. I’d send her private messages on twitter saying I wasn’t ready to talk about it publicly and she’d berate me asking how could I cope with the stress in secret.
I’d say to my husband in private, sounding like every one of my 32 years, that young people talk about their life too openly on the internet. But I’ll concede that perhaps I was the one in the wrong. Using the web, Emma opened people’s eyes to the pain that people with invisible illnesses can suffer. She made people rethink their perceptions about what it is to be seriously ill, as despite her deteriorating lung function, she was outgoing, made the most of life, kissed boys, went to festivals, dyed her hair seemingly every month and did I mention she was absolutely stunning?
But then when she died, and when other online friends of mine have died, how do you grieve? You can tell your friends but it somehow doesn’t seem as serious to them as Emma wasn’t a physical presence in my life, she never popped over for a cup of tea or glass of wine in the sunshine.
Her family will never know the hundreds of people in the UK and around the world that have mourned her death. She may have been only an online presence in my life, but her death has been felt deeply by all those that followed her blog, read her tweets, messaged her on Facebook. So on behalf of all the tweeters who mourned your loss: Emma, you were respected, you were admired, you were loved.
I finally received my double lung transplant on 30th August this year. When I think of Emma, I'm overwhelmed with the thought that there, but for the grace of my donor, go I . Emma spent her last few months trying to raise awareness of organ donation, so please consider signing the donor register: www.organdonation.nhs.uk
Thursday, 8 July 2010
Beautiful summer days are all too fleeting for some...
It's a really warm night and it's late. It's meant to be 30 degrees tomorrow and it reminds me of a summer in my early teenage years when the grass was burnt yellow during the whole school holidays, pricking the soles of your feet if you walked barefoot.
Long days of afternoon headaches brought on from drinking beers in the park with good mates, itching skin from too much sunshine with only a cloying smell to prove you bothered with suntan lotion at all.
Summer full of possibilities.
And yet at the back of your mind, as you pack your days full of heat, rarely indoors outside of work hours, you know it'll end. The English summer is so fleeting, days darken, the breeze picks up, the sandals go to the back of the wardrobe.
It's National Transplant week this week. There are currently about 8,000 people waiting on the transplant list. Three people die each day as they couldn't wait any longer.
For the rest, who are waiting for the phone to ring and literally fighting to stay alive so they are still here to answer it, they may have just one final, dark winter stretching ahead of them. Possibilities gone.
Its not nice to think about being an organ donor, it might mean contemplating your own mortality for the first time. But believe me, from someone who's future will at some point depend on a transplant, you couldn't give a better gift.
You can sign up here. It doesn't take long. If its something you've always intended to do but never got round to it, then do it now. Or tomorrow at work instead of making a cup of tea. But make sure you do it.
Long days of afternoon headaches brought on from drinking beers in the park with good mates, itching skin from too much sunshine with only a cloying smell to prove you bothered with suntan lotion at all.
Summer full of possibilities.
And yet at the back of your mind, as you pack your days full of heat, rarely indoors outside of work hours, you know it'll end. The English summer is so fleeting, days darken, the breeze picks up, the sandals go to the back of the wardrobe.
It's National Transplant week this week. There are currently about 8,000 people waiting on the transplant list. Three people die each day as they couldn't wait any longer.
For the rest, who are waiting for the phone to ring and literally fighting to stay alive so they are still here to answer it, they may have just one final, dark winter stretching ahead of them. Possibilities gone.
Its not nice to think about being an organ donor, it might mean contemplating your own mortality for the first time. But believe me, from someone who's future will at some point depend on a transplant, you couldn't give a better gift.
You can sign up here. It doesn't take long. If its something you've always intended to do but never got round to it, then do it now. Or tomorrow at work instead of making a cup of tea. But make sure you do it.
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