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.

[Hammy8241]

Jack, crossed my mind too but not looked into it as yet. Without going into detail, I believe that the body is just a shell when we die and to be honest, what happens to it is not important to me. However, I do think that disposal of the body is for those still living and would at least seek their opinion.

[Jack]

Agreed. I would want to clear it with all my family members first. They would be the ones affected most.

[Kimbangu]

I'd need to think very carefully about this..... I'd hate to end up on stage with Lady Gaga......

Lady GaGa to display dead bodies on stage | The Sun |Showbiz|Bizarre (http://www.thesun.co.uk/sol/homepage/showbiz/bizarre/3025924/Lady-GaGa-to-display-dead-bodies-on-stage.html)

[Sangye]

That Body World exhibition came to Arizona when I lived there. I didn't go, needless to say.

[Lightwarrior]

That Body World exhibition came to Arizona when I lived there. I didn't go, needless to say.

I went, but it was before I had Wegs, it would be interesting to compare a healthy body to ours. I wouldn't mind donating my body to science, If I get serious about it I'll have some work to do with my oldest daughter to make sure she is comfortable

[Sangye]

How are you feeling these days, Lightwarrior?

[Lightwarrior]

How are you feeling these days, Lightwarrior?

My WBC's are down to 2.1 this week so I'm confined to my office until they get at or above 3.5. My work family still insists I work only 1/2 a day. I was worried that sleeping on cots in Dominics hospital room might take it's toil and perhaps that is why my numbers dropped. The good news is that I am now at 15 mg as of today (did three weeks on 17.5 of pred). My energy level (spirit wise anyway) is higher and my mind less foggy. I am normally very curious about everything to the point of even driving myself crazy and I noticed that this is back, I felt so bad for so long I didn't even realize that I had lost it. I think getting below 20mg on pred after being at 60 for all those months is helping. Another curious pattern I am noticing, when the cytoxan start dumping my counts and I start having weird rbc morphology is that I start craving fish, shellfish, freshwater fish, basically any type of fish. Maybe I'm needing Omega 3??

We don't have genetic results back for Dominic and his blood clot, I'm trying not to freak out and do the nursing thing of being sure he has Wegner's or some other auto immune disease.

I am so happy that even though you are feeling bad, there seems to be some direction and hope. I'm also happy Jack got a shower (lol).

I'm taking it real easy and not pushing my luck now that Dominic and I are home. His friends have been supportive of doing calmer things than his 18 year old self is used to., like not bouncing around the desert on an atv.

[Sangye]

I'm so glad to hear you're taking care of yourself after Dominic's hospital stay. Weird about the fish-- I have no idea. I take 2,000mg of Omega 3 (fish oil) each day. It really helped me decrease the pred as far as Wegs symptoms.

I'm really glad Jack got a shower, too. England ain't THAT far away. :D

[Jack]

Hey, come on now! There is no need to get personal. ;)

(I kept asking her and my wife assured me that I did not stink, but I now seem to be shedding huge amounts of dead skin. Euch!)

[pberggren1]

Those bodies are a 2 hour drive from me right now.

[Deanne Hull]

Hi Jack, my dad and step mother are going to donate their bodies to science and have put that in their wills. I am not exactly thrilled with the idea but it is their wishes and I respect that. I have spoken to other members of the family and they all agree that it is a good idea and I have a son who is studying lab medicine and you need to have bodies to learn with. So they can go on and perhaps find a cure for something and help other people. Maybe find a cure for Wegs!

[Jack]

It is a thought isn't it?
I've spoken to my wife and she is OK with the idea so I think I'll raise it with the rest of the family.
I've looked into it a little and it seems that you have to arrange it first with your local medical school to see if they want you. There is then a form to be filled in and witnessed.

[Hammy8241]

Ok guys, I got an answer to my question today.


Dear Paul

Thank you for your recent email to the NHS Organ Donor Register.

Having an existing medical condition does not necessarily prevent a person from becoming an organ or tissue donor. In the event of your death, a decision about whether some or all organs or tissue you have chosen to donate are suitable for transplant or not will be made by specialist healthcare professionals, taking account of your medical history. Usually, but not always, it is possible for some organs or tissues to be donated. You have made your wishes clear and this is the most appropriate action that you can take at this time.

Being HIV positive and having or being at risk of having CJD are the only automatic exclusions to donation.

With this in mind I see no reason why your name should not remain on the NHS Organ Donor Register.

It is very kind of you to consider the needs of others in the event of your own death and the benefits which organ donation brings to those waiting for a life-saving or life-enhancing transplant.

Kind Regards

Rebecca Evans
Organ Donor Register Assistant
ODR
Organ Donation and Transplantation

[Sangye]

Jack and Deanne, in Chiropractic school we have to do the same anatomy coursework as medical students, including a year of gross anatomy--cadavers. Each trimester a group of 6 students was assigned to one cadaver. I was very fortunate to have 3 cadavers to study who'd had major medical problems. One woman was completely packed with cancer. Another had had extensive lung and GI surgical interventions--everything was rerouted or missing. Anyway, it was very useful studying anatomy that had been altered because that's what we encounter in the real world. I'm grateful that they offered their bodies for science.

My understanding was that in the US cadavers are not used in the region of their origin. You wouldn't want to be dissecting someone you recognize.

[Jack]

My understanding was that in the US cadavers are not used in the region of their origin. You wouldn't want to be dissecting someone you recognize.
It seems to be the oposite here. They prefer a local medical school in order to minimise the time and cost involved in transfer.
If I take it that far, I'll probably start by asking at the hospital I attend.

[Carly Hedge]

When I spoke to my Rheuma when I was diagnosed, I inquired about the whole donor thing because I strongly believe in it and have organ donor on my driver's license plus have donated blood in the past. She told me no- I can't donate no longer because of my condition and the treatments my body has and will go through. Broke my heart but what can ya do? I wouldn't wish this on anyone.

[Jack]

I'm still pursuing the idea of donation to medical science. I've spoken to my family and they are all OK with it and I've been in touch with the local medical school who are sending information and a consent form to me. However, there seem to be quite a few conditions that have to be met before they will take you and each case is considered on an individual basis. Wegener's does not automatically rule you out, but an autopsy would so alternative arrangements may have to be made at the time.

[Carly Hedge]

I was thinking about doing that also. I know my father will be donating his body to science even though he doesn't have this condition. It's a nice alternative so we can help people currently and in the future. :)

[Jack]

Carly - your avatar makes me think you are over doing the medication! ;)

(sorry for breaking into a serious thread with that)

[Sangye]

LOL-- As someone having to go on temporary high-dose pred again, I was thinking the same thing. :D

But it is quite distinctive and has helped me recognize you quickly!

[Carly Hedge]

Lmao!! Too funny. Thanks! XD

[Carly Hedge]

Well I like halloween and I like black cats.. Couldn't find the other one I like using so I picked that one. I was always the kid that stood out. ;P

[Lola]

I absolutely LOVE your avatar, Carly. I've just started reading the posts after a long time away, and find that I am very fond of you, as well.

[Jack]

I'm still pursuing the idea of donation to medical science. I've spoken to my family and they are all OK with it and I've been in touch with the local medical school who are sending information and a consent form to me.
Change of plan: youngest daughter (14 yrs) is not really happy about it after all so I won't be taking it any further.

[Nancy]

Hello Jack -
I know that you began the idea of wondering about donation when the donor potential dropped due to Wegs. If they have not explained it to you or it may be different where you are in the UK there is usually both a burial and family time after donation. The people that I have known that donated their bodies signed an agreement that would allow people in the medical sciences to learn from their "medical/life experiences" for a period of 3 years. At that time the body is then cremated and returned to the family for burial or interment or as I always prefer, throw me to the 4 winds.... There is time for a memorial prior to the body being taken to the training center and then after for the family. I think that at age 14, many things did not make sense and were scary at first, especially losing a parent ( unthinkable really). The idea of you dying is probably the biggest reason for the strong reaction. I agree with Sangye, the cadavers ( people) that I worked with allowed deeper insight into how the body worked, what was really occurring with a body and a disease process that cannot be captured by books and flat photos. We have had so many discussions on this forum about heart disease, liver effects, kidney dysfunction as well as all the other autoimmune and medication changes that our WEG attacked bodies go through - more people that understand what, could potentially help others in the future.
I think your willingness to help others after you have vacated the body are great. Just understand from a "once" 14 yr old daughter - give her time to digest the potential that you can die and then approach the idea of wanting to help others as the reason for donating if that remains your motivation. Check to see if the hospital will return your cremated remains to the family when completed... It may help as well... You are a truly good and patient soul.... All the best!

[Jack]

Nancy,
Thanks so much for your post, this is indeed an area that I have not fully explored. I am also aware that 14 is still rather young to take such thoughts on board and I may well raise the subject again in a few years time. It is just that she would find my passing even more upsetting at the moment if my body was going to be explored by medical students and I feel that I have to do all I can to lessen the pain.