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alan911

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What are the facts about organ and blood donations by someone with ALS?
My neuro said "No." A Google search is not helpful. Is a definitive answer possible?
There are serious emotional issues involved, but they may have no medical or scientific basis: Would YOU choose organs for your loved one if you knew the donor had a terminal illness? Is there any proof that ALS can be passed to an organ recipient? Are some organs susceptible and others not?
Is there any danger in me donating blood, and do I have a responsibility to inform the blood bank that I have ALS? What about all the blood I donated before the final diagnosis --- is that somehow tainted and did I put the recipients of that blood in jeopardy?
Is this a problem I should be concerned with and worry about?

My worst nightmare would be passing this "disorder" on to anyone else.

Alan
 

liz

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Alan,

If you want to donate but don't think organ donation to a living person is appropriate, an option is to donate your body to a medical college for research. I'd think they'd love an opportunity to study someone with ALS.

The medical college in my area returns the person's ashes to the family after about a year and they hold a special memorial service attended by the families/friends of those who donated their bodies. I've seen it televised - looks like a very nice event.

Liz
 

COlisa

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What great questions!

Regarding blood donation, this appears on the American Red Cross site:

http://www.redcross.org/services/biomed/0,1082,0_557_,00.html

BLOOD DONATION ELIGIBILITY GUIDELINES

Note to users: This list is not complete. Medical professionals are available at each blood collection center and details of each donor's health and activities are discussed in a confidential setting prior to blood donation. The final determination of eligibility is made at that time. Some donor eligibility rules are specified by the Food and Drug Administration for every blood bank in the country. Other rules are determined by the particular blood bank and may differ between programs. Donor eligibility rules are intended to protect the health and safety of the donor as well as the patient who will receive the transfusion. The criteria listed below are provided as guidelines to assist you in determining whether you may be eligible to be a blood donor. The guidelines listed below were last revised on 3/21/05. There may have been some changes to these criteria since the last revision date. The most up to date eligibility information can be obtained by contacting the American Red Cross blood center nearest you.

GENERAL GUIDELINES
To give blood for transfusion to another person, you must be healthy, be at least 17 years old or 16 years old if allowed by state law, weigh at least 110 pounds, and not have donated blood in the last 8 weeks (56 days). "Healthy" means that you feel well and can perform normal activities. If you have a chronic condition such as diabetes or high blood pressure, "healthy" also means that you are being treated and the condition is under control.
Other aspects of each potential donor's health history are discussed as part of the donation process before any blood is collected. Each donor receives a brief examination during which temperature, pulse, blood pressure and blood count (hemoglobin or hematocrit) are measured. Making donations for your own use during surgery (autologous blood donation) is considered a medical procedure and the rules for eligibility are less strict than for regular volunteer donations. Acupuncture
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lunarruna

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We inquired about donating my husbands organs for transplants and they said no here in Montana, because the cause of ALS is unknown. Now recently, when Stephen Heywood passed away in Massachusetts, USA, he ended up donating his kidneys. This surprised us, .Some of us on another forum discussed it, they had all been told that their organs would not be accepted for transplants. So, it is worth checking into some more I think.
If I were waiting for a transplant I would want the chance to have a PALS organs--people die every day because they cant get transplants.

Beth (CALS to Shannon, diagnoseded 8/04 at age 40)
 

Meg1

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The military and Sloan Kettering Hospital refuse blood donations from PALS under the theory that the cause is not known so why take chances. The Red Cross does not have a policy regarding blood donations from people with ALS but I have been told that PALS have been turned away at donation sites under a general "donee must be in good general health" requirement. Dr. McCarty at the als-tdf site called the Red Cross and was told that donations from PALS were accepted but while that may be policy, it's not necessarily practice. I've never seen an organ donation site that specifically excludes PALS from donating but I've also read that PALS's organs are not eligible for donation.

All that said, it sort of appalls me that a PALS would even consider donating organs or blood to healthy people. Why would anyone want to take a chance on passing on this horrible illness? I know I'd be pretty upset to find out that a loved one of mine had received blood or organs from a person with a fatal neurological illness of unknown origin.
 

paula B

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I know i asked my doctor if i could give a kidney to a friend who is on a waiting list for one and i was told no that i would never survive the surgery because of the stage i am at.

Paula
 

Al

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If I was going to die without a transplant I think I'd take an organ from just about anybody. If I lived longer then they might find a way of reversing whatever I might get from a suspect organ. Once again they don't even really know if the rest of our organs are bad. It's just an educated guess on the Doc's part. AL.
 

alan911

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I like the idea of donating what's left over to ALS research. On the down side, my drivers license (issued a few years ago and valid for a long time) says I'm an organ donor. Which was fine then. Not now. I can conjur a number of circumstances where my organs might be harvested (God, I hate that word). After all, the only way anyone can prove I have ALS is through a spinal tap or an autopsy. (Or so I'm told.)

I very much appreciate the thoughtful answers to the questions I posed. Thank you all.
Alan
 

Meg1

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Al said:
If I was going to die without a transplant I think I'd take an organ from just about anybody. If I lived longer then they might find a way of reversing whatever I might get from a suspect organ. Once again they don't even really know if the rest of our organs are bad. It's just an educated guess on the Doc's part. AL.

Of course you would take an organ from a PALS if you were about to die and there was nothing else available. Who wouldn't? You'd take one from a person with AIDS or Hep C, I'd assume, and would also be willing to accept an organ procurred without the donor's permission. I would.

And that's why recipients aren't allowed to make the rules.
 

Mike27

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alan911 said:
What are the facts about organ and blood donations by someone with ALS?
My neuro said "No." A Google search is not helpful. Is a definitive answer possible?
There are serious emotional issues involved, but they may have no medical or scientific basis: Would YOU choose organs for your loved one if you knew the donor had a terminal illness? Is there any proof that ALS can be passed to an organ recipient? Are some organs susceptible and others not?
Is there any danger in me donating blood, and do I have a responsibility to inform the blood bank that I have ALS? What about all the blood I donated before the final diagnosis --- is that somehow tainted and did I put the recipients of that blood in jeopardy?
Is this a problem I should be concerned with and worry about?

My worst nightmare would be passing this "disorder" on to anyone else.

Alan

This is a great question, I wondered that as well.
I think the problem is not that there is no proof of passing ALS thru organ transplant, it's more that they can't absolutely say that it won't happen. Same with blood donations, unfortunately. This is what happens with a 'no known cause' disease.

I'm doing what Liz suggests. My directives say that my body can go for medical research. (If they want it!:-D )
 

hboyajian

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Just surfing around, and I came across this thread. When my dad died and we were figuring out arrangements, my mom was wondering about organ donation. I didn't ask the hospital at the time (probably should have), but assumed that with ALS and his being 84, nobody would take any organs. I wish I had thought of giving his body for medical research. He would have supported that idea 100%, as when he was alive he hated wasting anything that could be used in some way. He was a man who cut up cereal boxes into index card size, re-used the tape that is wrapped around vegetables, requested that people bring him their used grocery sacks to use in his store, etc. This past Sunday, my family had a little reunion to scatter some of his ashes around a tree he had planted in my yard. He would like the idea of being fertilizer.
 

Jamiet

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If someone had lukemia, but had a cure for ALS in their organ, how many of you would take that organ that would cure your ALS, but have a possibility of giving you lukemia?

I would.

I think anybody, fixing to die of a heart, kidney, liver or whatever issue, would take an organ from anyone, except maybe a terminally infected organ, like cancer. yes, i know lukemia is cancer.. JMO.

rgds,

Jamie
 
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