Organ Donation Goes to a New Level
May 13, 2008 by kfabrizio
I read an interesting article in “Momentum” this month, about donating my brain tissue to science. I’m already an organ donor and have both a living and end of life will. The hubby knows what I want and what I don’t want should something disastrous happen to me.
The other evening we discussed my newest interest – donating my brain tissue. It’s important not only for the hubby to be aware of my wishes, but also other close family members to be aware as well. God forbid, if he and I are injured together and he can’t speak for me, I need others to know what I desire. It takes time to locate my living will and my formal right of passing will and perhaps for family members to try to digest—and respect my true wishes.
With brain tissue donation, time is at a premium. Tissue must be donated within hours of death. There can’t be any debate, any arguments. It must be taken care of promptly for the donation to be of any benefit to science. There isn’t time to dig through Sunshine’s home office to read about her wishes in this instance.
So, my loved ones, here are my wishes. I’m officially signing up with the M.S. Tissue Repository at the University of Chicago. I’ll be sure I have my papers in order for you so they are easy to find. You just need to notify the doctors of my wishes immediately upon my death. No worries, I won’t suffer terrible disfiguration and my funeral won’t be delayed. And, in addition to regular organ donation, we can rest together knowing that maybe my damaged brain and tissue could help lead to an eventual cure for M.S.
For others interested in this option, you can also choose to donate your brain tissue to:
Rocky Mountain MS Center, Research Division
701 East Hampden Avenue, Suite 420
Englewood, CO 80110
Phone: (303) 788-4030
Web site: www.mscenter.org
Human Brain and Spinal Fluid Resource Center, Neurology Research
Building 212, Room 16 (127-A)
West Los Angeles Health Care Center
11301 Wilshire Boulevard
Los Angeles, CA 90073
Phone: (310) 268-3536
24-hour pager: (310) 636-5199
Web site: www.loni.ucla.edu/uclabrainbank
Multiple Sclerosis Tissue Repository at University of Illinois at Chicago
Shannon Hertzler, Interim Coordinator
835 South Wolcott Street, MC790
Chicago, IL 60612-7344
Phone number: (312) 996-5763
For more information on the process of brain tissue donation: Donating to Tissue Banks, published by NMSS.
Also, Kim, note that our attorney advised us that copies of our Advance Directives (Living Wills, etc.) should be carried in our car so that emergency personnel can find them in the case of an emergency.
I signed up with the Rocky Mountain MS Center 3 years ago — a year after being diagnosed. I carry a card they sent me in my wallet the identifies me as a brain tissue donor and ALL of my family and most of my friends know my wishes.
Rocky Mountain covers all of cost of harvesting AND they pay for delivery of my remains to ANY funeral facility my family chooses.
Gotcha, sis. I will add this to my to-do list just in case I am the designated family member.
1. Feed Obo
2. Hug Obo
3 Make sure Obo has any little thing he needs/wants
4. Take out the trash
5. Cry my eyes out
6. Take Kim’s brain to Chicago (fast)
Have I missed anything?
Hi Kim -
I’m a new reader here. I found you via the Health Talk blog and have been fascinated to read your story. When I start reading a new blog regularly I feel like I should check in and let the writer know - so it doesn’t feel like I’m “spying” on you.
Anyway your entry today motivated me to write. Donating your brain is a GREAT idea. It made me think you might also be interested in knowing about the Accelerated Cure Project. I went to Johns Hopkins for a medical consult last month and while I was there, signed up for the ACP and gave them a gallon or two of my blood. LOL. It felt like it! Anyway, if you are interested in it you can easily Google them. I think it’s a great opportunity!
And thanks for sharing your stories - I’m a Solumedrol Survivor too, and could really relate to your experiences. Now when I know I’m going to have to take it, I tell my boyfriend - “Be prepared. I know I’m going to wish I was dead and cry all the time, and even though we both know it is just the drugs talking, the feelings are still real at the time.” I’ts amazing the poor guy doesn’t run for the hills at the first sight of the IV!
Kim,
As you know, I went through the whole will/power of attorney process recently and have arranged for my brain to be given to the brain bank here and the rest of me to whomever can use the bits and pieces…..One less thing for family and the Wookie to deal with.
S.
By the way, I am at Archytech.wordpress.com. For some reason I thought WordPress would link me automatically but it didn’t.
Uh…Kim…I just got a call from the hospital regarding your “brain donation”….They said…”Thanks!..But we’re good”….