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Slightly off topic - organ donation

12 REPLIES 12
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Re: Slightly off topic - organ donation

Dahlia.
When I said clear forever- I meant up until the point when we did eventually die. I realise it may come back- but surely if it had not returned and we had died from another cause other than cancer we could still donate???? I am still confused?
Katy

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Re: Slightly off topic - organ donation

Hi

I will have to excavate the information that said "corneas only". Someone people will have undergone heart damage from RT and CT without necessarily knowing it and other bodily changes may have occurred that haven't been, might never be, identified and I think that's why "corneas are the only fruit".

lilyO - clear forever? I think that might be the case for some early diagnosed DCIS cases but by and large breast cancer does not have a cure and therefore very few of us would be considered to be "clear forever" although very many will be in remission for a very long time we hope. I personally think the "all clear" is a myth and when I'd finished adjuvant treatment I told everyone this so that they didn't put their size 9s right in and ask "so, have you got the all clear then?", as soon as I'd finished radiotherapy.

D

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Re: Slightly off topic - organ donation

What an interesting topic - I have recently had to renew my passport as it only had 6 months left on it. The passport office actually wrote to me to say I could not use my current one! When the new passport arrived, there was a form with it suggesting I become an organ donor. I have never given blood (allthough I am grateful for the blood transfusions I have had) as in my early 20's I was underweight at 7 st 2 lbs, and mid 20's got Crohn's, which having no known cause, I thought disbarred me, but I have always carried a donor card. I rang the Organ Donor authority last week, told them I had breast cancer in 2003, still have Crohn's, and they were more than happy to register me. No mention was made of using any organs/tissue for research. My husband is fully aware of my decision and when the inevitable happens, I do hope some parts of my body can help someone - as far as I am aware, there is nothing wrong with my lungs, liver, kidneys or heart. I have been on immuno-suppressive drugs (azathioprine and methotrexate) for 8 years and never thought to mention this - does this disbarr me?

Liz.

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Re: Slightly off topic - organ donation

Yes please do encourage others to sign up for organ donation.My Oh had a double lung transpant 5yrs ago,it was getting to the end of his life as he was told he probably wouldn't last more than three weeks,I will never be able to thank the donor enough for giving my Oh a new lease of life.I had been his carer for 10years and it was so upsetting to see him get worse on a daily basis.At one stage i went through severe depression and was angry with him for getting ill,Not logicalI I know.
To see him getting ready which took him a good two hrs was so upsetting,we had oxygen pumped through the house.
The night the phone went I was so scared,he wasn't as he was more scared of choking to death and not being able to get his breath.The operation took nine hrs the worst time in my entire life,my daughter was hysterical as she had grown up with her dad being ill and she didn't want him to have it but at that stage she wasn't aware that his life was coming to a end and he would die with or without the transplant.
3mths after the transplant we went to the top of Scar fell in the lake distict,How the hell can I describe that feeling we planted a smallplant up at the top in memory of the donor and thanked him and his family for the most genorous gift that will be ever given The Gift Of Life
The saying that what doesn't kill us makes us stronger and we have found that to be true He has been so supportive through out my BC treatment and if it wasn't for the donors gift I would have been going through it without him.Sadly I can no longer be a donor but do go out canvasing for donors.There is so many different views to this and all I respect,I for one don't believe in signing out of donation as it brings tomany other issues but what I do ask is that if you would accept a organ for you or a member of your family please think about it and make your wishes known to your next of kin which is even more important than the card that you sign.I wish everybody well in your fight against this disease xxxx

mrsblue
Member

Re: Slightly off topic - organ donation

If you google "cancerhelp organ donation" there is some info and a link to the UK transplant site.
I'm sure none of us who have had bc would want to put any potential recipients at even the slightest risk, especially as breast cancer can recur many years after the original diagnosis.
I was a blood donor for many years, beginning in my student days. When I became unable to give blood (pre-bc, the haemoglobin level for donated blood is set quite high for the benefit of recipients) it was my hope that my three children would consider giving blood... two of them now do so regularly.
Maybe if we can't ourselves donate, we can encourage others to do so?

Guest user
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Re: Slightly off topic - organ donation

My oncologist told me that only corneas can be donated, and for research not transplant. And no more giving blood either - for ever, not just the immediate future. I have carried a donor card all my adult life and find this disappointing but completely understandable.

ForumMember
Member

Re: Slightly off topic - organ donation

I carry an organ donor card and rang them the other day to check if I can still be considered a donor now that I've got BC. The only exceptions to donation are if you have AIDS & CJD.

Guest user
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Re: Slightly off topic - organ donation

As I understand it, they can't be used for other patients, can be used for research purposes.
After all, if you're on immunosuppressive drugs, as transplant patients will be, an organ that potentially has micromets isn't your best bet...

I used to donate blood and plasma, and they won't have that either - though I'm told that's for my protection, so as not to stress the system.
Lyn

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Re: Slightly off topic - organ donation

How can it be that we can donate corneas and nothing else? Why wouldn't corneas be affected too?

What about if you've 'only' had DCIS?

Guest user
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Re: Slightly off topic - organ donation

Hi,
Dahlia- can we NEVER EVER donate our organs???? even if we are clear forever?
Katyx

cherub
Member

Re: Slightly off topic - organ donation

I'm one of GB's constituents and I'd prefer it if he was kept south of the border...................................

Guest user
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Re: Slightly off topic - organ donation

Hi

It's not really something that involves us exactly as all we are fit for, as donors, is our corneas.

Maybe someone could poke Gordon Brown's remaining eye out? Never liked the man and never wanted the Scots ruling the English and I'm sure the Scots feel the same way. Keep the bu**er north of the border I say!!!

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Slightly off topic - organ donation

I am surprised that Gordon Brown may push for 'presumed consent' for organ donation in spite of his own advisors deciding it is not the way forward. One thing I have wondered about is what will happen if his plans do go through.

Imagine if there are unlimited amounts of organs available to perform transplant operations. These operations cost a fortune and the patients have to be on anti-rejection drugs for the rest of their lives. I think I read somewhere that patients with heart transplants have to have them replaced about every ten years.

How will they find the money for these transplants if they can't even find the money for cancer drugs that are needed?

I find it very emotive of them to say that patients awaiting transplants will die without donated organs. People with cancer who are refused drugs will also die without the most advanced and expensive drugs. People with macular degeneration will go blind without quite cheap drugs. People's mental health will deteriorate and untold misery will be caused to the families of althzeimers disease sufferers. They don't seem to care enough about improving the quality of life. I just don't get how they can refuse drugs on the basis of cost for people who have these diseases yet they want to carry out more transplant operations.

What will happen when organs become available under 'presumed consent' when they don't have the budget to carry out all the transplant operations? Will they still keep to giving priority to the patient at the top of the list or will they start to discriminate on the basis of age?