kedevlin23
Active member
- Joined
- Aug 18, 2009
- Messages
- 38
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- Loved one DX
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- PA
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- My Oasis
I wasn't sure what group was best to post this information in. I thought I would post it to help others determine what/how they should go about donating for research after they or a loved one passes away - if that is their wish.
We knew that Dad wanted to donate his brain/spine to research after he passed. In NY State they would not accept any other organs for transplant as there is no known cause for ALS.
There were lots of things that weren't discussed in detail about Dad's wishes as we didn't have time for all of that, but we got the basics and that was important information to have. Sometimes I wish that we had had more time to think about what/where the donation would go to, but how do you find that time when you don't know when the end is near?
Since we were in Upstate NY - our options were for somewhere on the east coast. Since Dad's clinic was in Burlington Vt - we went with the research facility they were most accustomed with as everything was rushed. Dad's donation went to Mass General. He had to be taken to Fletcher Allen in Burlington for the harvesting to occur and then they arranged for the organs to be sent to Mass General.
There is a fee involved for transport from the hospital in NY to Burlington and back - I was prepared to pay whatever it cost as this was one of Dad's biggest wishes - in the hopes that there would be some finding/contribution from the research that would help others in the future. However, we found out that there is grant money available to cover the costs - there is a cap on what the grant funds will cover. The funeral director did all the transportation (he was a personal friend of Dad's since childhood).
Also, there is only 24 hours to do the harvesting. So, plans need to be put into place quickly. Even though that is longer than other organ donations - there is transportation time, the hospital has to have time to do their thing before the body is transported and of course time to get the harvesting completed.
While some of what I post above is really raw - I thought it was important to share this experience as we struggled with getting the correct information and details to get this accomplished - it took an entire day and it was the day before a holiday weekend.
I wish that we could have had time to explore if any of the research facilities had one focus or another so that the study on his organs would be more beneficial at one than the other.
I guess my point is if this is an option you or a loved one wants to pursue, please try to talk about it sooner than later and figure out where you want to donate too and get any information you can in advance.
I hope for this disease to have a finding someday that will change everyone's lives. We were robbed of a beautiful live too soon. In our case Dad had a rapidly progressing case of ALS. I do know however that others live many many years with a fairly good quality of life. I just wish no one had to struggle with this disease.
We knew that Dad wanted to donate his brain/spine to research after he passed. In NY State they would not accept any other organs for transplant as there is no known cause for ALS.
There were lots of things that weren't discussed in detail about Dad's wishes as we didn't have time for all of that, but we got the basics and that was important information to have. Sometimes I wish that we had had more time to think about what/where the donation would go to, but how do you find that time when you don't know when the end is near?
Since we were in Upstate NY - our options were for somewhere on the east coast. Since Dad's clinic was in Burlington Vt - we went with the research facility they were most accustomed with as everything was rushed. Dad's donation went to Mass General. He had to be taken to Fletcher Allen in Burlington for the harvesting to occur and then they arranged for the organs to be sent to Mass General.
There is a fee involved for transport from the hospital in NY to Burlington and back - I was prepared to pay whatever it cost as this was one of Dad's biggest wishes - in the hopes that there would be some finding/contribution from the research that would help others in the future. However, we found out that there is grant money available to cover the costs - there is a cap on what the grant funds will cover. The funeral director did all the transportation (he was a personal friend of Dad's since childhood).
Also, there is only 24 hours to do the harvesting. So, plans need to be put into place quickly. Even though that is longer than other organ donations - there is transportation time, the hospital has to have time to do their thing before the body is transported and of course time to get the harvesting completed.
While some of what I post above is really raw - I thought it was important to share this experience as we struggled with getting the correct information and details to get this accomplished - it took an entire day and it was the day before a holiday weekend.
I wish that we could have had time to explore if any of the research facilities had one focus or another so that the study on his organs would be more beneficial at one than the other.
I guess my point is if this is an option you or a loved one wants to pursue, please try to talk about it sooner than later and figure out where you want to donate too and get any information you can in advance.
I hope for this disease to have a finding someday that will change everyone's lives. We were robbed of a beautiful live too soon. In our case Dad had a rapidly progressing case of ALS. I do know however that others live many many years with a fairly good quality of life. I just wish no one had to struggle with this disease.
