How do you feel about the donors?

[Andrew MacLean]

I think I can shed some light on the blood donation situation. The supervizing nurse at the session where you gave blood would have noted in one of the alpha-numeric boxes that you were graft recipients.

With or without a blood supply, infectd corneas seem to be a means of transmission for NFCJD. There is no test that can be carried out on the cornea that would indicate the prsence of NFCJD infection. The test for this would need an examination of the brain of the donor.

At one time, quite recently, Opticians were not allowd to re-use contact lenses because of the theoretical risk of transmission of NFCJD. I guess one of the Optometrists would be able to bring us up to speed on the current situation there.

Back to the blood: when the blood has been collected, it remains with the record made at the time; including the record of your having received a new cornea.

Normally this sort of donation is not used for a recipient. I'd go further: it is my understanding that, in Scotland, donations tagged in this way are never given to recipients.

Andrew

[GarethB]

The subject of blood and organ donation perhaps should be taken up by the comitee.

As we have conflicting information, given to differnet members of the forum, a letter from the support group comittee may get a response from the respective organisations medical specialist to give the final ruling which can then be posted here and sent out in a news letter.

In the meantime, on my medic alert application it mentions the grafts I have had and that I would like to donate my organs. At the end of the day, if they want them knowing I have had grafts they can have them. If not, I have atleast made the offer.

If it is clarified that I can not give blood or donate organs, then I will have the organ dontaion removed from the notes medic alert will hold.

[Andrew MacLean]

Gareth

I agree wholeheartedly about the principal of obtaining, in writing, a definitive ruling about donations of organs etc.

On the other point, I am encouraged by the fact that the medic alert registration includes the registration of existing transplants received by the potential donor.

This, too, would enable the clinical staff to reach an informed decision about the usability of any bits and bobs before they make an approach to a grieving family. For this reason, I am also going ahead with medic alert registration.

Andrew

[Louise Pembroke]

Good thinking Gareth, I agree, it would be best if the KC Committee formally wrote to them to get it confirmed in writing what our position is [and why], and also to point out that members have individually received conflicting information. This caused confusion and distress and shouldn't really happen.

I have the addresses from the websites John & Anne:

UK Transplant
Communications Directorate
Fox Den Road
Stoke Gifford
Bristol
BS34 8RR

and [the London office of the NBS, there are many regional offices though]

National Blood Transfusion Service
26 Margaret Street
London W1N 7LB

Oh well, this has done us a favour really because now we will get it in writing from the horses mouth and perhaps when we have that it might be a good idea to post it up as a permanent seperate item for anyone to access, in the main listing [donation/blood/medic alert products]

[Anne Klepacz]

I've only just caught up with this thread (been having access problems). We obviously do need to clear up this confusion, so I'll try and get a definitive answer - though it will probably take a little time to get a response in writing.
As Andrew said, the ban on blood was to do with the infinitesimal risk of NCJD. I'd been giving blood regularly for about 10 years after my grafts when I happened to hear something on the radio about the Blood Transfusion service no longer taking blood from corneal transplant recipients. I checked with the HQ and was told they didn't want my blood any more. But it makes no sense at all for there to be a ban on blood donations but not on organ donations! And of course knowledge about NCJD has moved on considerably since then, so it may be that the rules have changed. There was a lot of over-reaction at the beginning, with worries about surgical instruments and even contact lenses. Those have now been allayed, and in the question and answer session at last years conference one of the specialists said that only operations on the back of the eye now had to be done with disposable instruments - corneal operations were now known to be safe with reusable instruments. But I'll try to check out the latest line on blood and organ donation and let you know when I have an answer!
Anne

[Louise Pembroke]

Andrew regarding NFCJD, is it possible for veggies to contract it, is it only meat eaters who have been at risk?
That's a risk for all transplants then..sobering thought.

[Louise Pembroke]

Thanks Anne. It isn't good that we have individually been given conflicting info. It does seem more definate on the blood front.
Maybe it's different with organ donation because ANY donor could potentially have CJD.

[Andrew MacLean]

Louise

I'm afraid I do not know the answer to your question. What I can say with a degree of confidence is that New Form Creutzfeldt-Jakob Disease seems to have been identified at the time of the Bovine Spongiform Encephalopathy scare. It was widely believed, and may indeed be the case, that the primary source of infectivity was the consumption of contaminated carcas meat. This was refined to include the consumption of neural tissue from infected animals.

I think, at one time, there was a cornea recipient who went on to develop and die from CJD. i do not know whether the cornea itself was the route of infection, or whether it was (as they say in epidemeology) just background noise. That is to say, the cornea may have been coincidental to other risk factors.

Anyway, at that time the 'post hoc' association was strong enough for the government to prohibit the re-use of contact lenses, and for the Blood Transfusion Service to stop accepting (or at least stop using) donations from Cornea Transplant Patients.

Since then I know that the prohibition on the re-use of lenses has been relaxed a little.

Anne

thank you for agreeing to take up Gareth's suggestion.

All

Let me say, I do not go to bed at night and lie awake worried about Creutzfeldt-Jakob Disease, whether in its new or old form! Any hazard is extremely small, and it seems that I have a better chance of winning the National Lottery than I do of falling prey to this disease. Let me also say that I have never, in my life bought a national lottery ticket, so I am managing to keep my exposure to that particular risk at an absolute minimum, too!

Andrew

ps If anyone wants to read more about Creutzfeldt-Jakob Disease, Edinburgh University has the National Surveylance Unit. Go to http://www.cjd.ed.ac.uk/

A

[GarethB]

To the best of my knowledge, the incidents of CJD are still very rare and so nearly impossible to prove such a link conclusivly.

I think it is still hyperthetical, howvere I am prepared to be prooved wrong.

[Andrew MacLean]

Gareth is entirely right. My own feeling is that the Government decided that if it was going to err, it had better err on the side of caution.

I'd guess most people would agree that this was a wholly responsible position for them to take.

Andrew