Organ Donor cards & WG

[Hammy8241]

I have held an organ donor card for many years. Last night, from out of the blue, (a 'Jack' moment?) my mind turned to the question of “should I remain on the donor card register as I now have WG?

In the UK the register is voluntary and you have to opt in. I believe other countries it is the other way around and you have to opt out.

I know no two WG sufferers are the same and some have much more serious problems with their organs whilst others have little or no involvement. Therefore, I’m presuming that this may not be a yes/no answer.

I have asked the question to the UK organ donor register and when/if they answer I will let you know.

My thought process suggests they will come back with something along the lines of “stay on the register and should/if the situation arises let the professionals make the decision”

Any thoughts?

[elephant]

My thought is that if your on medicines ( immunosuppresants) and have WG, I don't think we are donor material.

[Sangye]

Given that we've taken so many carcinogenic drugs and are full of toxins, I don't think sharing our organs with anyone is much of a gift.

In the US you have to "opt in" as well.

[Hammy8241]

I understand your thoughts, but some people are in drug free remission and potential recipients in very urgent need. An individual donation could just make a life saving difference to someone else.

As the cause of WG is unknown/clear is the thought that the disease could be passed on via any organ donated a concern?

[Sangye]

Being off the major drugs (eg chemo) doesn't mean they're out of your body. People who have had chemo 20 years ago must still do a detox with help from a skilled holistic physician, since the residual chemo is released from stored tissues (mostly the liver) and can do damage or even be deadly. I don't know if MDs acknowledge this or not, but it's quite well-known to holistic physicians.

[Jack]

I'm pretty sure that I'm not doner material, but I still carry my card just in case there are any bits that someone may want.

[pberggren1]

We want all of you.

[Kimbangu]

I have a rare blood group and I asked about this when I got diagnosed. I was told that my blood isn't suitable for donating.( NHS) .....I'd guess organs would be the same

I'm not doner material, I'm not even Doner kebab material!

[Nancy]

As far as I have known - since I was diagnosed 14+ years ago. I cannot donate blood, organs or even tissue ( skin, long bones, corneas, etc...) due to Wegener's. Without a specific target site or cause that can be "treated" the answer was clearly no. It has always made my heart hurt - since as a nurse I assisted with multiple "harvests" that I know made such a difference for so many people and allowed the person to give a gift that could not be manufactured, as well as allowed the family to understand that a part of their loved one continues in this world... There is no documented/known issue with transfer by donation - but just like trying to get treatment - if a drug is indicated - it may not be covered by insurance due to no specific treatment indication for Wegener's... My..sounding a bit cynical there... This subject does bother me... sorry... :-)

[Jack]

Because I am probably not acceptable as an organ doner, I have considered offering my body for medical research, but never really discussed this with anyone. I'm not sure what my family would think about having no funeral. What do you think of the idea? As a transplant recipient it would be nice to give something back when I no longer have a use for it.