4 years waiting for lung transplant and running out of time
Discussion
Not me, but my time will come as I'm in the same genetically challenged boat! I can't begin to explain what a truly horrific time she is having. I've seen many others there, the vast majority have died waiting.
Please have a read and if it encourages you to register that'd be great. If it's not your bag don't tell me, or whine about it being an inhuman thing to do, just go and read something else.
Cheers
Six Fiend
http://www.communitynewswire.press.net/article.jsp...
This is what it says...
Celebrities have backed an online campaign to save a critically-ill woman waiting for a double lung transplant.
The stars, which include TV presenters Vernon Kay and Ben Shephard, singer Beverley Knight, comedian Bill Bailey and Prime Minister's wife Sarah Brown have all sent links out on their Twitter pages encouraging people to sign the organ donor register to help Jessica Wales.
Jessica, 20, from Thanet in Kent, has end stage cystic fibrosis and has been waiting for a double lung transplant for four years.
Having defied doctors by staying alive beyond the two years they predicted when she was first listed for transplant, Jessica is now critically ill in hospital and being kept alive by a ventilator that is supporting her breathing.
As concern about Jess's condition mounted over the weekend, her friends turned to social networking website Twitter.
They spent the weekend urging celebrities to highlight Jess's plight by "re-tweeting" messages, posting links to the Organ Donor Register and using a specially created "hashtag", a way of grouping "tweets" on a particular topic.
The aim is to spread the message about organ donation as far and wide as possible, in the shortest amount of time.
The friends, led by Sarah Milne and Holly Shaw, are all advocates and supporters of the national organ donor awareness charity Live Life Then Give Life (LLTGL) and most have received transplants themselves.
Emily Thackray, chair of LLTGL, and herself a double lung transplant recipient, said: "Jess and I have been friends for a long time. We supported each other through life on the transplant waiting list.
"Two years ago, I was lucky enough to receive mine and have watched Jess fight to stay alive. The fact that she is still here is testament to her determination and feisty character, but she is not superhuman.
"It is galling to know that a whole new life could lie ahead of her but that people's apathy towards organ donation might mean she never gets to experience it.
"That is why we are so desperate to get the message out there and get people talking about it and signing up right now.
"Twitter is a fast and effective way of doing this and it has to be fast. Jess is running out of time."
More then 8,000 people are currently waiting for an organ transplant in the UK and 1,000 of those will die this year, according to LLTGL.
LLTGL is a charity dedicated to promoting organ donation and transplantation in the UK, improving the outlook for transplant patients and highlighting the generosity of those who give the Gift of Life.
To find out more about organ donation or sign the organ donor register visit www.lltgl.org.uk
www.organdonation.nhs.uk
or call 0300 123 23 23.
Please have a read and if it encourages you to register that'd be great. If it's not your bag don't tell me, or whine about it being an inhuman thing to do, just go and read something else.
Cheers
Six Fiend
http://www.communitynewswire.press.net/article.jsp...
This is what it says...
Celebrities have backed an online campaign to save a critically-ill woman waiting for a double lung transplant.
The stars, which include TV presenters Vernon Kay and Ben Shephard, singer Beverley Knight, comedian Bill Bailey and Prime Minister's wife Sarah Brown have all sent links out on their Twitter pages encouraging people to sign the organ donor register to help Jessica Wales.
Jessica, 20, from Thanet in Kent, has end stage cystic fibrosis and has been waiting for a double lung transplant for four years.
Having defied doctors by staying alive beyond the two years they predicted when she was first listed for transplant, Jessica is now critically ill in hospital and being kept alive by a ventilator that is supporting her breathing.
As concern about Jess's condition mounted over the weekend, her friends turned to social networking website Twitter.
They spent the weekend urging celebrities to highlight Jess's plight by "re-tweeting" messages, posting links to the Organ Donor Register and using a specially created "hashtag", a way of grouping "tweets" on a particular topic.
The aim is to spread the message about organ donation as far and wide as possible, in the shortest amount of time.
The friends, led by Sarah Milne and Holly Shaw, are all advocates and supporters of the national organ donor awareness charity Live Life Then Give Life (LLTGL) and most have received transplants themselves.
Emily Thackray, chair of LLTGL, and herself a double lung transplant recipient, said: "Jess and I have been friends for a long time. We supported each other through life on the transplant waiting list.
"Two years ago, I was lucky enough to receive mine and have watched Jess fight to stay alive. The fact that she is still here is testament to her determination and feisty character, but she is not superhuman.
"It is galling to know that a whole new life could lie ahead of her but that people's apathy towards organ donation might mean she never gets to experience it.
"That is why we are so desperate to get the message out there and get people talking about it and signing up right now.
"Twitter is a fast and effective way of doing this and it has to be fast. Jess is running out of time."
More then 8,000 people are currently waiting for an organ transplant in the UK and 1,000 of those will die this year, according to LLTGL.
LLTGL is a charity dedicated to promoting organ donation and transplantation in the UK, improving the outlook for transplant patients and highlighting the generosity of those who give the Gift of Life.
To find out more about organ donation or sign the organ donor register visit www.lltgl.org.uk
www.organdonation.nhs.uk
or call 0300 123 23 23.
Edited by Six Fiend on Monday 21st September 17:51
This appeal is going big - Jonathan Ross has now re-tweeted to all 414,000 people who read his tweets.
UPDATED: Jenson Button is supporting too!
Added to the previous celebrity support this appeal is reaching a huge audience.
Except on here!
UPDATED: Jenson Button is supporting too!
Added to the previous celebrity support this appeal is reaching a huge audience.
Except on here! Edited by Six Fiend on Tuesday 22 September 19:00
Edited by Six Fiend on Tuesday 22 September 19:09
A friend of mine received a double lung transplant. I think he is on PH. He has lived more than half his life with the transplanted organs. Everyone should carry a donor card and/or sign up to the organ donors register. Just by ticking a box and signing a form you could literally be saving someones life.
Tis a really tricky issue this one. She has now been on the waiting list for an operation with a mean survival less than the time she has already waited.
I would hate to make these decisions as they are about quality of life, but had someone give her a new lung four years ago, there is a good chance she wouldn't be here now.
If a whole bunch of celebrities increase the numbers of donor's I'm all for that, but if a big group of celebrities are putting pressure on who gets the supply of lungs then that is bad IMHO.
Terrible disease, and I agree it should be an opt-out. I see a lot of families struggle because their son/daughter didn't leave an opinion either way, and the natural inclination of a parent is to preserve their child intact in some way.
I would hate to make these decisions as they are about quality of life, but had someone give her a new lung four years ago, there is a good chance she wouldn't be here now.
If a whole bunch of celebrities increase the numbers of donor's I'm all for that, but if a big group of celebrities are putting pressure on who gets the supply of lungs then that is bad IMHO.
Terrible disease, and I agree it should be an opt-out. I see a lot of families struggle because their son/daughter didn't leave an opinion either way, and the natural inclination of a parent is to preserve their child intact in some way.
Julian64, valid points but with regards to the 4 years comment you're a touch off the mark given advances in treatment...
Currently I have friends who have lived a further 13, 11, 8, 6 and 5 years still going. The 5 year chap is a regular triathlon competitor. Although 13 is sadly on his way out and needs another pair of lungs. This is truly sad as he has been working constantly since the first op and has a young lad.
The more recent recipients are all in the 2-4 year stage and doing exceptionally well, back at work and living active lives.
All contribute back to society and have a huge lust for life. Once you're over the first time hurdles (days, weeks, months, year, 2 years) things do look better.
Yes some will fall by the wayside soon after, but giving them a chance is what matters.
The celebs cannot influence who gets the organs as they have to be a correct match for the patient who has to undergo a serious of tests at the time immediately before a transplant can take place. If there is any doubt about that patient being infection free etc then a back-up patient is wheeled in. What they are doing is increasing donor rates.
When there are so few sets of organs around it is quite unnerving to find two friends being called on the same night for the same new lungs - one as a back-up. One had 7 calls before she had some that she was either well enough to receive or were good enough to be used.
I have my reservations about opt out, even as a future likely recipient. What the govt should do is ban families from over ruling their loved ones wish to donate. Currently being on the register is not enough, your family must know and respect your decision.
Currently I have friends who have lived a further 13, 11, 8, 6 and 5 years still going. The 5 year chap is a regular triathlon competitor. Although 13 is sadly on his way out and needs another pair of lungs. This is truly sad as he has been working constantly since the first op and has a young lad.
The more recent recipients are all in the 2-4 year stage and doing exceptionally well, back at work and living active lives.
All contribute back to society and have a huge lust for life. Once you're over the first time hurdles (days, weeks, months, year, 2 years) things do look better.
Yes some will fall by the wayside soon after, but giving them a chance is what matters.
The celebs cannot influence who gets the organs as they have to be a correct match for the patient who has to undergo a serious of tests at the time immediately before a transplant can take place. If there is any doubt about that patient being infection free etc then a back-up patient is wheeled in. What they are doing is increasing donor rates.
When there are so few sets of organs around it is quite unnerving to find two friends being called on the same night for the same new lungs - one as a back-up. One had 7 calls before she had some that she was either well enough to receive or were good enough to be used.
I have my reservations about opt out, even as a future likely recipient. What the govt should do is ban families from over ruling their loved ones wish to donate. Currently being on the register is not enough, your family must know and respect your decision.
Edited by Six Fiend on Monday 28th December 10:47
Like Six Fiend I know people who have had transplants for CF and have survivied many years, One girl I used to be close to had hers 6 months ago and is doing great. She had a few TV appearances / articles trying to raise awareness and money to get the TX paid for privatly abroad.
I don't need TX yet but will at some point thanks to CF.
I believe that it should be opt out rather than opt in.
I don't need TX yet but will at some point thanks to CF.
I believe that it should be opt out rather than opt in.
Six Fiend said:
I have my reservations about opt out, even as a future likely recipient. What the govt should do is ban families from over ruling their loved ones wish to donate. Currently being on the register is not enough, your family must know and respect your decision.
This is soo true, i have seen when people have passed away stating their intentions to be a doner to the Hospital and to Family, but after they passed away the family still overuled their decision.I lost my best friend a couple of years back from this horrible condition.
I still miss her terribly with not many days going by where I don't think of her, even though any exercise was hard for her she still managed to get a degree, ride her horse, get part way through her Masters and was the best friend I could have had.
There is no reason with the current laws on transplants not to be a donor, you will never be sacrificed if you have a chance of recovery just to donate organs, it is either silliness of not wanting to be cut about after death (which will happen anyway) or selfishness that dictates people not doing so. Yet not many of those who are anti organ donation would say no thanks if they or a loved one needed the transplant.
I still miss her terribly with not many days going by where I don't think of her, even though any exercise was hard for her she still managed to get a degree, ride her horse, get part way through her Masters and was the best friend I could have had.
There is no reason with the current laws on transplants not to be a donor, you will never be sacrificed if you have a chance of recovery just to donate organs, it is either silliness of not wanting to be cut about after death (which will happen anyway) or selfishness that dictates people not doing so. Yet not many of those who are anti organ donation would say no thanks if they or a loved one needed the transplant.
I think the loved ones over-ruling the decision is an important one. This happens quite a lot. A bereaved relative is no someone you can easily argue or even reason with and they do currently hold pretty much sway over what happens currently.
Its difficult because I can see both sides.
Its difficult because I can see both sides.
julian64 said:
I think the loved ones over-ruling the decision is an important one. This happens quite a lot. A bereaved relative is no someone you can easily argue or even reason with and they do currently hold pretty much sway over what happens currently.
Its difficult because I can see both sides.
I'm sure many people would see the whole thing in a different light if they were the father, brother, son, wife of a person desperately in need of an organ.Its difficult because I can see both sides.
I'm registered as a donor, and I think my wife is too. And I would allow my young daughter to donate organs too if ever the unthinkable happened. I'd like to think it would be comforting that even a small part of her lived on in another person, and helped them live too.
And now I'm all upset just thinking about it.
King Herald said:
julian64 said:
I think the loved ones over-ruling the decision is an important one. This happens quite a lot. A bereaved relative is no someone you can easily argue or even reason with and they do currently hold pretty much sway over what happens currently.
Its difficult because I can see both sides.
I'm sure many people would see the whole thing in a different light if they were the father, brother, son, wife of a person desperately in need of an organ.Its difficult because I can see both sides.
I'm registered as a donor, and I think my wife is too. And I would allow my young daughter to donate organs too if ever the unthinkable happened. I'd like to think it would be comforting that even a small part of her lived on in another person, and helped them live too.
And now I'm all upset just thinking about it.
I do know one chap who regularly visits the lady he donated his heart to. Much nicer when the doner lives though the proceedure
.julian64 said:
King Herald said:
julian64 said:
I think the loved ones over-ruling the decision is an important one. This happens quite a lot. A bereaved relative is no someone you can easily argue or even reason with and they do currently hold pretty much sway over what happens currently.
Its difficult because I can see both sides.
I'm sure many people would see the whole thing in a different light if they were the father, brother, son, wife of a person desperately in need of an organ.Its difficult because I can see both sides.
I'm registered as a donor, and I think my wife is too. And I would allow my young daughter to donate organs too if ever the unthinkable happened. I'd like to think it would be comforting that even a small part of her lived on in another person, and helped them live too.
And now I'm all upset just thinking about it.
I do know one chap who regularly visits the lady he donated his heart to. Much nicer when the doner lives though the proceedure
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