Old 02-09-2019, 06:59 PM #1 (permalink)
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Default Organ Donation

I have always believed in organ donation and signed up when I turned 18. It was quite a fulfilling moment for me so many years ago...

So now with ALS making all my decisions for me, am I still able to make this decision? Or has this disease taken this choice away as well?

Does anyone have any experience or expertise to answer this question?

Cathy
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Old 02-09-2019, 07:04 PM #2 (permalink)
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Default Re: Organ Donation

See this thread. You will want to consult with your area's tissue bank, past donating to a research program if you so choose.

Best,
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Old 02-09-2019, 08:45 PM #3 (permalink)
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Default Re: Organ Donation

Thanks so much, Laurie. I thought perhaps you would be someone with an answer.

So it looks like just tissue, brain donations for ALS but most normal organ donations are not possible (liver, kidney, heart).
I was hoping the rest of my body would stay unaffected...but I know I have so much to understand. What lies ahead....

How can I make some kind of positive impact?

I have so much to ask but hands won't type anymore.

Cathy
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Old 02-10-2019, 01:59 AM #4 (permalink)
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Default Re: Organ Donation

It is not ALS itself that would keep you from donating, Cathy. Most deaths overall don't qualify, which is why there are such long waiting lists. Death has to be from causes like stroke, brain injury and brain aneurysm, that allow for continuous blood flow to keep the organs healthy. Most people don't die of those things, but least of all PALS, who typically die of respiratory failure.

Donating your brain and other parts that can be used in research can have a very big impact, by bringing the science closer to more effective treatments for all PALS. And tissue donations, which most people in the US are eligible to make, are desperately needed for everything from cancer surgery to burn victims. Corneas restore vision to the blind.

So anything you donate will have a very positive impact -- there's no doubt about that.

Best,
Laurie
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Old 02-10-2019, 04:31 AM #5 (permalink)
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Default Re: Organ Donation

Laurie I wasn't quite sure exactly what the reason was, thanks for explaining that, suddenly to me the impact on the organs makes sense. Not just for PALS but for organ donation in general.
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Old 02-10-2019, 10:27 AM #6 (permalink)
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Default Re: Organ Donation

About positive impact : my dad chose to donate his body to the surgery school and let the neuro team know about it so that may be he will be helping research that way.
I suppose that is also possible in the USA
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Old 02-10-2019, 10:39 AM #7 (permalink)
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Default Re: Organ Donation

We have a disease of unknown etiology. In Canada I can't even donate blood. I did however sign up for the 4th phase of a study I participated in. Assuming I die during regular business hours, they will take brain and spinal tissue for study.
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Old 02-10-2019, 11:06 AM #8 (permalink)
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Default Re: Organ Donation

This is about donating yourself for research. There is a link to US locations to contact too

Google advancing als research through organ donation. It should bring up a page at Mass General if you can’t find it and want the link thank this post or pm me and I will send it
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Old 02-10-2019, 11:09 AM #9 (permalink)
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Default Re: Organ Donation

This was a paper about this issue https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3569489/
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Old 02-11-2019, 05:59 PM #10 (permalink)
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Default Re: Organ Donation

OK it isn't quite as bad as having to die during business hours. But they don't do weekends and holidays. So needing to harvest within 24 hours there are times that the donation wouldn't harvested in time. I shudder to think of the headache of trying to get a cadaver across the border in time. Besides, my passport isn't up to date.....
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Old 02-18-2019, 11:13 AM #11 (permalink)
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Default Re: Organ Donation

Nikki,
Thank you for the article. It was helpful and informative. While helping another with organ donation is a nobel gift, the passing on this disease to another is most troubling to me.

I was able to find the other article regarding donations for research. It gave a link to the ALS document describing the process with donation centers. My only question, is how up to date are the donation centers list? I was surprised at how few exist-particularily none in Ohio.

Link can be found if you search as suggested in post 8

Cathy

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Old 02-18-2019, 12:51 PM #12 (permalink)
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Default Re: Organ Donation

I do not think it is complete at all as I know other places not on it though none in Ohio. I suggest asking your clinic to start. I asked several places as I was looking for options that might want to study siblings ( the answer was great idea and it would be interesting but we don’t do that specifically) and the replies from the RNs were either I know and this is how or let me find out and they followed up.

If you have no luck with your clinic i do see an email on the mgh site. The person listed is lovely and helpful and although it is probably mostly for mgh patients I think she would try to give you information if she could
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