The FAQ at www.lifesharers.org says one can still register for their lifesharer program even with a preexisting condition.
It's not too complicated and even I understand it. When you join Lifesavers, you agree to give other Lifesavers members first choice of your organs. You can still give your organs to your family if you want.
This organization believes most of the people who get organs would never give an organ before they got sick. Lifesavers believes only people willing to give organs, should get organs. So you join and, in the event you ever need an organ, you get on their list and you have a large group of people willing to donate to you. Go to www.lifesharers.org for a better explanation.
I just heard about this today and have no interest in it, financial or otherwise.
Posted by bettyg (Member # 6147) on :
Vitch, would YOU or any lymie want to give one of our organs to an INNOCENT person so they could get our lyme & suffer for years as we have?
NO WAY FOR ME! I sincerely hope others will think the same way.
We had a Des moiines ORGAN transplant person talk to our hospital group. Later she found out for me as a LYMIE, NO organ would be accepted except for eye corneas!
As extremely sensitive as my eyes are & were befoe doxy, I wouldn't wish that pain on to anyone.
Don't mean to rain on your/others parade, but that's how I feel.
I've had many blood transfers for my 12 surgeries & feel I was infected 2-3 times with BAD BLOOD too; can't prove it.
Posted by lymie tony z (Member # 5130) on :
I strongly agree with Betty on this one folks....
While I would donate my organs for lyme research and have told my family to do this upon my demise....
It would be uncontionable to give infected or even suspected organs or blood to any other individual...
This would include putting oneself on a list just to garner an organ...what would happen if the lymie died before letting someone know of the scheme....and the lymies organs were transplanted.
Yeah, I think I prob got some bad blood in my past surgeries....why else do the ducks make it a point to ask about it....hmmmm.....zman
Posted by sofy (Member # 5721) on :
Am I reading this right??? The reson to put our name on this list is so in the case we need an organ in the future we have a better chance.
This list allows all sort of sick people to sign up. Do you want to get an organ from a sick person or give a sick person additional risk by giving them an organ,.
I did not feel bad when I took "organ donor" off my drivers license. I felt relieved it was gone befor someone might have gotten one of my risky organs.
This sounds like a site for selfish people IMHO. I dont mean to be rude but I have to say what I feel when it comes to a matter conscious
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by bettyg: Vitch, would YOU or any lymie want to give one of our organs to an INNOCENT person so they could get our lyme & suffer for years as we have?
NO WAY FOR ME! I sincerely hope others will think the same way.
NO WAY here either!
Posted by Sue vG (Member # 3143) on :
Absolutely NO WAY would I subject an innocent and compromised person to the possibility of lyme, bartonella, and any other diseases I may unwittingly be harboring by donating my organs.
This is not selfish -- it is the ONLY responsible position on this issue.
I was buttonholed at a health fair by an organ donation center a few years ago. I told them I couldn't donate due to lyme and they said, "Oh, go ahead - by the time you donate your organs they'll have a cure for lyme". That's an awfully cavalier attitude - I wonder if they say the same thing to people with AIDS.
On this same topic, I posted a link a few years ago to a national news story in which 3 people contracted melanoma and 2 died from it after receiving various organs from a donor who had been treated "successfully" for melanoma 16 years prior to her death from a different cause. It astonished the medical community.
So many things are not understood, including lyme, but this one's a no-brainer.
Posted by vitch (Member # 8094) on :
Guess I should have given it more thought before I posted.
Posted by treepatrol (Member # 4117) on :
I wouldnt donate a finger nail now after having this disease I just couldnt inflict this on anyone ever.
Posted by prconn (Member # 7113) on :
I would say I have to disagree with most of the posts regarding this issue.
Having worked for many years at an organ procurement organization, I would have to say the need far outweighs any risks.
If one is weeks or days from death because of organ failure it should be a decision made by them and their physician. To be given a couple of more years or maybe more, knowing the risk involved it should be their choice.
Many organs are recovered with infections. They are soaked in saline and antibiotics to kill the bacteria. The ONLY reason an organ will be turned down today is because of cancer or HIV. Donors with Hepatitis are accepted. These conditions just must be treated prophylacticly.
Donors can be up 75 years old.
Giving the gift of life is a miracle I hope none of us have to endure, but it truly does bring comfort to many donor families. It gives them peace that their loved one lives on and did not die in vain.
Take care and peace.
Posted by sofy (Member # 5721) on :
prconn
Do you know if the person receiving the organ is given the info that their particular organ comes from a hepatitis donor?
I agree it up to the individual to make the decision but in order to make a decision they need all the info.
You cant discount the business end of this risk reward stuff either. 2 years of a miserable life at a very high $$$ cost just aint Kosher especially if you werent told you were getting a potentially diseased organ.
Those in charge of the telling get their income from transplants so their viewpoint could get colored. Ooops theirs my cynicism raising its ugly head.
Posted by vitch (Member # 8094) on :
prconn brought up a good point. If you're days or weeks away from dying, any organ, even ours, is better than death.
Another good point is the question about whether patients are informed about donors' preexisting conditions. Wish I could know more.
Posted by prconn (Member # 7113) on :
Yes all patients receiving organs get all the medical information regarding the donor. It is their choice to make with their doctor on wether or not they will accept the organs.
A lot of transplant surgeons will not risk patients well being and turn down organs never telling the patient they were available.
These are then offered down the waiting list to a doctor and a patient willing to assume the risk involved. There are usually docs regionally who do high risk transplant on regular basis. Their patients are usually very ill and willing to do anything.
It is truly a double-edged sword. In a lot of circumstances even when donor and recipient are perfect matches, i.e. family to family donation. Their lives are hobbled by the agony of the anti-rejection drugs. It is not an often seen side of donation. But many people do not return to full lives. They end up losing their homes and without insurance to pay for meds. They in the end will die because of this situation.
There are no guarantees and don't let any one tell you there are. We all know that all too well.
Hope this provides you with the information you were looking for.
Take care and peace.
Posted by sofy (Member # 5721) on :
prconn Thanks for your informative reply. Im glad to hear patients are informed. You are right it is a double edge sword.
For some the extra time her on earth would be worth all the cost, pain & suffering and for others they would think they paid for a direct trip to hell here on earth instead of taking the path originally in front of them.
I hope none of us will have to make that decision for ourselves or a loved one.
Posted by Lymetoo (Member # 743) on :