Last modified: 11 May 2000
Donor Awareness Week
Well it's almost here. National Organ and Tissue Donor Awareness Week (NOTDAW) is scheduled for April 21-27, 1996. And, boy, have we got a deal for you! All you folks - yeah, you guys who "want to give back" for what you have received - and all you candidates - who need to do everything you can to promote donor awareness - and anybody else who want to contribute - here's you chance!
During NOTDAW, TRIO Chicago will have displays in the Daley Center, City Hall, the State of Illinois building and the Harold Washington Library. Display materials and handouts have been provided by the Illinois Secretary of State's donor awareness program and ROBI. And WE NEED VOLUNTEERS!!
We need to have enough volunteers to staff the displays, hand out materials and answer questions about organ and tissue donation. Lorraine Wilmot of ROBI has generously volunteered to train those interested in volunteering on some of those most frequently asked questions. Lorraine will be the feature at the April 3 TRIO meeting. If you can volunteer, please come to the meeting. If you want to volunteer but can't make the meeting, call TRIO and we'll make alternate arrangements for you.
But, here's your chance to make a difference. You can volunteer for an hour or two, a half day, a full day or the entire week! Don't be shy or afraid. No one will be at a display alone and everyone will have training and "cheat sheets" to help you answer questions. Here's a chance to register real donors for the Illinois donor registry and make a real difference. Please sign up now - we need you!
We're working on some surprises, but the details are not yet final.
UNOS/DOT
The combined Third Annual UNOS Members Forum and Division of Transplantation (U.S. Department of Health and Human Services, Health Resources and Services Administration) 1996 Annual Meeting was held in Washington, DC, February 21 through 23. The theme of UNOS was "Stewardship of Scarce Resources in Transplantation" and included sessions covering the criteria for the waiting list, equitable distribution of organs, ethics, public education, and xenotransplants. DOT's theme was "Toward the Year 2000: Concepts and Considerations in the Consent process" and focused on the donation process with sessions that included education, donor registration, family consent, incentives, public awareness, and the impact of media coverage and celebrity transplants.
The meetings involved, of course, primarily doctors and other medical professionals. There was one session oriented to patients, moderated by the UNOS Director of Patient Affairs. It was attended only by patients and their families, no medical professionals. Throughout the meetings, it was clear that patients, donor, and their families are seriously under-represented.
There are increasing efforts to get us a much needed voice in matters that are for us literally a matter of life and death. In addition to the sessions, there were exhibits and informational materials relating to various aspects of transplantation. For more information about these meetings, call the TRIO Chicago office.
Meeting Change
PLEASE NOTE. Our normal Wednesday meeting falls on the first day of Passover, so we have rescheduled the April meeting. For April only, we will be meeting on Tuesday, April 2. Same time (7:00 PM), same place (ROBI). Our normal 1st Wednesday of the month will return with the May 1 meeting.
Media
Maybe we should just devote this column exclusively to Chicago Hope. The top transplant center in the world raised a few eyebrows, and quite a bit of ire, when the latest heart recipient started exhibiting characteristics of his donor, much to the horror of the donor's husband and the on-looking doctors. It turned out okay, and ended on a positive note. But not without producing a ton of protest letters to the show's producer.
Sisters produced an even greater outcry when one of the characters bought her way to the top of 'the list' with large donations, including television sets, to the hospital's transplant center.
Some of the shows use consultants to make sure their depictions of transplants are accurate. Effective, aren't they? In their own defense, they say that they are in the business of entertaining, not educating. Dramatic license necessarily means that some of the finer details get lost. Transplants in the media (along with celebrity transplants) was a hot topic at the recent UNOS Annual Meeting. If you want to protest any show, comment, offer suggestions, and don't know who to direct it to, or where, contact the TRIO Chicago office. We know who they are and where they live!
Celebrity Transplants
The March 10 issue of Parade Magazine published an article by astronomer Carl Sagan entitled Through the Valley of the Shadow. It relates his experience with a second chance at life through a bone marrow transplant. After receiving the six months to live verdict, Carl was fortunate enough to have a sister who was a perfect match. He eloquently writes of the events and the emotions before and after, and makes an appeal for bone marrow donors.
Father Reunites With Daughter To Give Her His Kidney
From a news story as we go to press, a California man, long estranged from his family, and living in prison, offered his kidney to his daughter. The girl was born with only one kidney, and had been on dialysis for many years due to its failure. In a very emotional gesture of love lost but not forgotten, he is giving his daughter a new life, and by his gift, renewing his own.
Sometimes the triumphs and celebrations in our lives center on specific events. Sometimes they are about our whole lives, as the following, by Lynn Levy.
As a child, you are taught many lessons by your parents. They teach you to respect one another, to always say "please" and "thank you" and be kind to others. My parents taught me many lessons as I was growing up. To say a simple "thank you" to my Mom for donating her kidney to me is just not enough. I figure one of the best ways to let my Mom know how much her gift means to me is by being here to educate people about organ donation.
My Mom not only gave me life once, but twice. Both of my parents have stood by my side since the beginning of all my surgeries at the age of two. Each time I was called back to the hospital I could count on my parents being right there with me. Three days after my 27th birthday, my Mom gave me the best present ever, a new kidney. I'm happy to report that my Mom is doing great! For myself, I'm currently teaching at Lake Shore Prep and getting married this fall. I make it my special mission to visit schools and educate people about the importance of organ donation.
To my Mom, I'll never be able to say it enough, but Thanks!
Book Review
Transplants: Unwrapping the Second Gift of Life, by Pat Stave Helmberger, 1992. Subtitled The Inside Story of Transplants as Told by Recipients and Their Families, Donor Families, and Health Professionals.
This book differs from Transplant Success Stories, reviewed in the last issue of reORGANized! in that its stories go into a more detail. The author is the sister of a heart recipient, and relates her sister's and her family's story as well as thirteen others. The stories cover "the joys of renewed life as well as the psychological, emotional, and ethical prices involved." The author supplements the stories with discussions of some of the complicated issues. She frankly addresses topics that even today are seldom spoken about out loud, such as sex after transplant, depression when everyone expects you to be so grateful, the stresses on the care-givers, communication.
The book does not go into depth on any of the issues, focusing more on the personal stories. Anyone who has gone through the transplant experience will find many familiar things to relate to. Anyone just starting the journey will find this a helpful guide along the way.
The book is available from CHRONIMED Publishing, P.O. Box 47945, Department 861, Minneapolis, MN 55447-9727, (800) 848-2793. The cost is $9.95 plus $4.00 for shipping and handling. It is also available in the TRIO Chicago library.
The List
OK, ok. Everybody always wants to know about the list. Where am I? How does it work? When will I get called? Here's the story.
Surprise! There is no list. It's merely a metaphor for the candidate selection process. Here's how it works:
All patients accepted into a transplant center are registered with the United Network for Organ Sharing (UNOS). UNOS maintains a medical profile of those patients in a national candidate data base. When an organ becomes available for transplant, the UNOS computer generates a ranked list of patients who match the available organ. Matching criteria may include tissue match, blood type, immune status and organ size. Ranking criteria include geographic location (organs are first offered locally, then regionally, then nationally), seriousness of illness and time "on the waiting list", i.e., time since registration with UNOS.
Then, in order to receive the organ, the top patient must be available, healthy enough to endure the surgery and willing to be transplanted immediately. Lab tests may also be required to ensure compatibility or determine if current patient antibody levels are too high for successful transplantation. If all of the above points to you, you get the organ.
This is a complex process that defies a simple explanation. I'm sure that this brief explanation will raise a lot of questions. So you can see, it is easier to talk about "the list" than try to explain the combination of events that must occur before you get the call.
New Director
Please join me in congratulating Michael Lamoureux to the TRIO Chicago Board of Directors. Mike is currently waiting for a heart transplant at Rush and has been waiting on and off for over three years. He has been an enthusiastic supporter of our activities since day one and is responsible for coordinating our green pin sales activities - and is doing great job! Congratulations again and welcome aboard (pun intended)!
Toxoplasmosis Warning
The University of new Mexico warns people with compromised immune systems to wash after handling dogs. Playing with dogs carries twice the risk of toxoplasmosis as playing with cats. It seems that many dogs (about one in four) have a propensity for rolling around in cat poop. So while they don't have the parasite the way cats do, they physically carry it.
Donor Appreciation Day
TRIO member Kiki Gonsiorek, a donor mother, will be in Washington, DC in April to participate in Donor Appreciation Day. She and her son's heart? recipient exchanged several (anonymous) letters, and finally agreed that they should meet. Their meeting will take place during the Washington activities. We wish them well.
Cyber Corner
Eleanor, gee I think you're swell… Just a word of thanks to Eleanor Jones, Transweb webmistress. Eleanor maintains the TRIO information on the internet as well as the wealth of other Transweb materials. You haven't been online until you've been on Transweb. Eleanor, we couldn't do it without you - Thanks!
Library
The TRIO Chicago library is growing. We have books, tapes, videos, brochures, magazine and newspaper articles. Do you have an interest or information need? Call us. Do you have a good book to recommend? Call us. Did you read a good article? Send it to us.
1996 Olympic Games
Kim Brown, kidney recipient (twice), medalist in the winter transplant games (downhill skiing) and an active member of TRIO in Washington, DC has been selected to carry the olympic torch through Washington, DC on its way to Atlanta this summer. Congratulations, Kim! And, can you tell us couch potatos what else you're taking besides cyclosporine?
Anniversaries
Congratulations to:
Tom Bradley - Heart 2/01/92
Lynn Levy - Kidney 2/24/94
Jim Staros - Kidney/Pancreas 3/24/94
TRIO Members in Action
TRIO Chicago member Mike Reed participated on a panel discussing organ donation and transplantation. Mike, representing the recipient community, joined two surgeons and a representative from ROBI March 17 on the WJJD program "Your Health Matters".
St. Patrick's Day
Bet you didn't realize that St. Patrick was the patron saint of organ donation and transplants! TRIO Chicago members helped Butch McGuire (heart 1995) celebrate his first post transplant St. Pat's Day by distributing green donor awareness pins at his Division Street establishment during the St. Pat's weekend. The wearin' o' the green (pin) was almost as popular as the drinkin' o' the green (beer). Thanks to Butch, donor awareness is real high in the Division Street area.
Attitude
"When you step into the unknown, you step into the field of all possibilities." Deepak Chopra