Organ donations, can we? Should we?

[AussieNeil]

No doubt many of you have seen T shirts or bumper stickers with the catchy slogan:

"Don't Take Your Organs to Heaven... Heavens Knows We Need Them Here."

Prior to being diagnosed with SLL/CLL, I had opted to be an organ donor. When I followed up my suitability after diagnosis, I was informed that my organs would still be useful. That surprised me given how quickly my blood donations were no longer desired.

1) Given up to 10 people patiently waiting for a chance at a better life, or indeed life itself, benefit from each person donating their organs, how many of us have made a decision about this?

2) Is anyone aware of organ donations not being accepted from someone with leukaemia?

Neil

[Oleboyredw-uk]

This is a great question Neil,

I had wondered this having been a blood donor in the past. I had assumed that, blood being pervasive about the body organs would not be wanted. I hope my assumption was wrong.

Rob

[AussieNeil Partner Administrator]

This was exactly what I thought Rob; given my blood donations were no longer wanted, who would want my organs when blood (and even more relevant, leukaemic B-lymphocytes) would pervade any organ I donated? I was concerned enough that my past donations may have put someone at risk, though a subsequent investigation allayed that concern. It looks like the Red Cross are just being ultra cautious and besides, I now have a greater need for what my marrow is struggling to produce

Neil

[Mikey47]

Like others here, I was dropped like a stone from donating blood when I informed the service of my diagnosis. I am still, as far as I know, on the organ donor register.

Maybe I should make some enquiries!!

[AussieNeil Partner Administrator in reply to Mikey47]

Yes please do and let us know what happens! I very much suspect my enquiry (done over the phone) got a standard response without much thought given to it - with the aim to just keep me on the register, but perhaps I'm being a bit cynical? I must remember to ask my haematologist.

[Mikey47 in reply to AussieNeil]

This is the reply I received from the British Transplantation Society:

Dear Mr Potts

Thank you for your query.

Unfortunately, it would not be possible for someone with chronic lymphocytic leukaemia or lymphoma to donate their organs because of the small risk of transfer of the disease to the recipient who would then be immunosuppressed in order to prevent rejection.

Yours sincerely

Anthony Warrens

[AussieNeil Partner Administrator in reply to Mikey47]

Thanks for posting this. Good to see justification for the response, which actually makes excellent sense. It wouldn't be a good combination, having an immuno-suppressing blood cancer while also on immunosuppressing drugs...

[Hidden]

I was diagnosed as a result of a large node appearing on the nape of my neck just after I had given my blood donation. This coincided with the first night sweat I had, not the in and out of the bedclothes as I tried to cool down which was my normal thermostat breakdown. I spoke with the blood donation staff as I was worried I may have passed on weak lymphocytes that could affect someone. I was reassured that the nature of CLL was that bone marrow makes these immature cells and that I had done no harm. The reason I could no longer give blood was that doing so would have a detrimental effect on me. Be interested to find out if that was the real reason.

[tubbing in reply to Hidden]

We had a similar answer from the blood Transfusion service when my husband was diagnosed that he hadn't transmitted it to anyone else.

[Hidden]

Thank you from me too Mikey47. Now I have to find out how to remove myself from the list of people who have signed up to be a donor, just in case.

Bub

[MsLockYourPosts Passed Volunteer]

I have asked a couple of doctors about this and have seen others post the same information. The only thing we can donate, because there is no blood involved is our corneas. I put that on the back of my driver's license, as that's where you indicate that you are willing to be a donor in the US, and informed my family, as after an accident I'm sure they would be asked if they were around. It's also in my medical directive.