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Organ Donation,raising awareness

(44 Posts)
nelliedeane Mon 23-Apr-12 16:34:21

I hope this thread dosent appear insensitive as it is a very emotive subject,the reason I am starting this thread is because my lovey D.I.L suffers from cystic fibrosis.This is a genetic degenerative condition and sufferers rarely live past 30,and usually if they live that long need a lung transplant from early to mid 20's as their lungs are so scarred and damaged they have to fight to get air into their bodies. Kerry has campaigned as much as she can to raise awareness for the need for donor organs,at 23 kerry's health has deteriorated rapidly and she has lost three CF friends in the last two months as donor organs could not be found,she lives with this sense that time is running out everyday instead of enjoying being a newlywed.

nightowl Mon 23-Apr-12 16:41:21

Oh nellie how tragic for such a young woman who should have all of her life ahead of her. I know I am guilty of not giving this enough thought, I used to carry a donor card but that disappeared some years ago, I don't even give blood any longer. I will take your words to heart and have some serious discussions with my family. I do hope your DIL receives the transplant she so needs (((hugs)))

greenmossgiel Mon 23-Apr-12 16:44:12

nelliedeane, I hope the organs soon become available for your daughter-in-law. That sounds awful the way I've put it, but people will die, as they do, and their organs may be used to help people like your DiL. I carry a donor card and am also on the National Organ Donor Register.
A friend of the family contracted Hep C after having received a contaminated blood transfusion after a motorcycle accident 50 years ago. He was near to death when the right liver became available for him, and 5 years down the line, he's still there to tell the story. smile

granjura Mon 23-Apr-12 16:49:06

I am so sorry to hear about your DIL nelliedeane.

I really believe that we should have an opt out rather than an opt in system in the UK, as in many other European countries.
We've always discussed this as a family, and we all agreed that should something terrible happen to any of us, the first thing we should do is to volunteer to the medical staff, thus avoiding delay.

Sadly here I am no longer allowed to give blood or organs, because I lived in the UK at the time of the CJD outbreak - and UK citizens are seen as a risk.
I have therefore made a will giving my body to science when the time comes. At least it won't be totally wasted.

Jacey Mon 23-Apr-12 17:04:13

I am sorry to hear this nelliedeane ...I also think we should have an opt out system in this country.

I know that I wasn't able to give blood for a certain period of time after visiting Mexico ...but hadn't realised granjura that other countries were concerned about the time we had CJD ...may I ask which country you are talking about? confused

Libradi Mon 23-Apr-12 18:25:15

So sorry to hear about your DIL nelliedeane. I also believe we should have an opt out system in this country. I carry a registered donor card (just checked that it is still in my purse) and my family know my wishes.
If anyone has been thinking of joining the Organ Donor register you can do it online www.organdonation.nhs.uk/ukt/Default.asp or by calling the NHS Donor Line on 0300 123 23 23

nelliedeane Mon 23-Apr-12 19:03:40

Thank you all so much for your comments I have always thought also that opting out a much better way of dealing with this as no one wants to consider their own demise .The pain of the donors family to enable your own loved one to live is something that you feel guilty wishing for,Kerry has started to be counselled for her transplant and it is something that will have to happen in the next year or so,for that reason I am trying to raise awareness where I can just to give people food for thought.

jeni Mon 23-Apr-12 19:08:55

I would agree my late dh and I had. 14 extra years together thanks to a kidney doner.
Needless to say I am registered and carry the card.

Anagram Mon 23-Apr-12 19:15:46

Sorry to hear about your DIL, nellie. I, too, think the opt-out system would be preferable in this country. The problem which arises whichever system you have is when close relatives refuse to give their consent, against the expressed wishes of the donor, especially if the deceased is a young person. It's a very difficult and sensitive issue and does need to be addressed properly.

granjura Mon 23-Apr-12 19:35:33

Now this may shock some people. but I do feel that if people who carry the card should get priority. Perhaps if some people want to opt out of the system or not carry a Donors Card, should also opt out of the system altogether?

jeni Mon 23-Apr-12 19:42:44

.?

Greatnan Mon 23-Apr-12 19:49:09

I can't donate in France, but I will be able to in New Zealand.
France has the opt out system, like Switzerland.
One of my employers never gave blood because 'he didn't like anything like that' - his wife had received a full transfusion after a bad miscarriage.
I agree that people who are not prepared to donate if they have heathy organs should be way down the list for transplants.
Some claim exemption on the grounds of religion, but still want an organ from someone else.

Sook Mon 23-Apr-12 20:24:47

I firmly believe we should have an opt out system in place and the sooner the better.

My very best wishes to your DIL nelliedean flowers

jeni Mon 23-Apr-12 20:32:37

My DH, who had a transplant still carried a card until he developed terminal Ca colon, as his corneas skin etc: could still have been used!

Anagram Mon 23-Apr-12 20:32:57

Greatnan, I don't understand how it can be that someone can claim exemption on religious grounds but still want a donor organ - wouldn't their religion forbid them from taking that organ? confused

nuttynorah Mon 23-Apr-12 20:39:25

Hi nelliedean
I used to work in a children's cystic fibrosis centre and have great sympathy for CF sufferers and their families.
flowers for Kerry and I hope everything goes well for her.
(I have registered via the website.)

nelliedeane Mon 23-Apr-12 20:56:17

thank you Nuttynorah it is a horrible condition isnt it she also has type1 diabetes and problems with her digestion which is often the case with CF every bodily function requires medication to enable it to do its job from taking tablets to produce enzymes to IV antibiotics and a Bipap machine for breathing the only function that dosent require medication is urination.

Greatnan Mon 23-Apr-12 22:25:53

Apparently not, Anagram - I heard one person say he needed his body to be complete at the resurrection but apparently the donor's body didn't matter. I wonder what they do if they need an amputation? (He was not a member of any of the two largest Christian sects).

glassortwo Mon 23-Apr-12 23:18:28

nellie I had a card in my purse for years but heavens knows where it is now, so I have been online and registered. Hope a transplant becomes available for you DIL flowers

Anagram Mon 23-Apr-12 23:23:19

Thanks for that info., Greatnan. It really doesn't make any rational sense, does it? hmm

nelliedeane Tue 24-Apr-12 10:06:59

Thank you all for the support kerry will be so pleased when I tell her about all the good wishes and the take up for the donor cards and register even if just those of you who have posted donate just think how many lives we could save and improve flowers for all of you on behalf of kerry.

nuttynorah Tue 24-Apr-12 10:37:12

Those of you who are on Facebook, the NHS Organ Donation Campaign has its own page. If you "like" it, your Facebook friends will see it on your page and might be prompted to register.

glassortwo Tue 24-Apr-12 13:23:00

nutty thanks,I have found it on Facebook and liked it.

Greatnan Tue 24-Apr-12 15:23:47

Will do, nutty.

Bags Tue 24-Apr-12 19:53:01

Good idea. I'll do that too. Thanks nutty.