Last modified: 11 May 2000
About reORGANized!
reORGANized is the official monthly newsletter of TRIO Chicago. reORGANized is published monthly and contains stories and articles of interest to the general transplant community, book reviews, an events calendar and information relating to TRIO Chicago activities. reORGANized is free with TRIO Chicago membership. Non-members may subscribe by sending a request to TRIO Chicago, including your name and address. Non-member subscriptions are $12 annually, but the fee will be waved for those in financial hardship.
Inaugural Smash!
What a day for a meeting! It started with an air temperature of -11. It was terribly cold outside and definitely a rotten day to hold almost anything - especially a meeting of a new group with only a few semi-committed members. Then the phone calls started later that morning - all from people wanting to attend but due to health, circumstances or the weather couldn't make it. I felt their pain.
The bad news continued throughout the day. The weather didn't improve and the phone calls kept coming. By the time 5PM came around, I was thoroughly depressed. I was certain that only three people would attend - but I was also afraid to call the other two to confirm. So I loaded the car with pop, juice. cookies, chips, napkins, cups, buttons, brochures and all the other things we needed and headed to ROBI. The show must go on.
But what a night! In spite of -35 wind chills, thirty-four people showed up! Some of them were cold, a few of them got lost, but all of them had a dedication that couldn't be denied. TRIO Chicago was born!
John Butorac, President, talked about TRIO - the who, what, when, where and why or the organization and what it meant to him. Jerry Anderson then delivered a presentation on the Regional Organ Bank of Illinois (ROBI) and filled us in on the operations of an organization that has played a critical role in all our lives. Jerry did a great job! John talked again about some plans for TRIO Chicago and, most importantly, about the need to make it YOUR organization. TRIO Chicago is all of you - without the members, TRIO doesn't exist.
And don't forget the challenge to bring another interested person to the next meeting. The more members we have, the more we can accomplish as an organization. Randy Heyn-Lamb ended the meeting with guided tours of the ROBI facilities. Everyone enjoyed the opportunity to see the workings of ROBI.
Finally, the meeting ended on a social note, with the chance for everyone to meet some new friends. As I said, what a day for a meeting!
Record Year for Organ Donation
In 1995, the Regional Organ Bank of Illinois (ROBI) recovered a record number of organs from Illinois and Northwest Indiana donors and more organs than any other similar organization in the country. 1,038 organs were recovered last year, an increase of 18% over 1994, resulting in 774 life-saving transplants. Our heartfelt thanks to ROBI personnel for their hard work and dedication to this critical effort.
The bad news is that even with an 18% increase, there were only 250 donors.
Nationwide, 10 people die each day waiting for transplant. You may have known some of them. As recipients, it is our duty to promote donor awareness. We have reaped the benefits and we owe our help to those who will come after us.
No one can make a better case for the importance of organ donation than a living recipient. However, candidates can make a good try. After all, they face serious illness and maybe death until organ supply matches demand. As a candidate, you have the best reason to try to register as many potential donors as possible.
This leads us to…
Donor Awareness Week.
This year's National Organ and Tissue Donor Awareness Week (NOTDAW) will be from April 21-27. We've got plans, but boy, do we need help!
We have lobby space reserved for donor awareness tables in the State of Illinois building, the Daley Center, City Hall and we're working on Navy Pier. Our goal is to sign up at least 1,000 new donors for the state donor registry from each location.
Over the next two months, we'll need help preparing, getting, and assembling materials - tables, chairs, signs, banners, buttons, pins, balloons, brochures, donor cards, etc. and we'll need to get volunteers trained to man the tables. During NOTDAW, we'll need transportation, moral support and lots of volunteers.
This is what TRIO is all about. Figure out what you can do and GET INVOLVED! No effort is too small - we need all the help we can get. Be a part of making NOTDAW a great success in Chicago - who knows? Maybe we can even get you on TV!
Please let us know ASAP if you can help. Call the office or see one of the officers to volunteer.
Media Watch
You've probably noticed how attuned you are to any mention of organ transplants in the news, in magazines, or in TV shows. I know my ears pick up whenever I hear one of the magic words. Of course, that means I sometimes rush to hear a story about restoring old pipe organs! Sometimes the stories are intelligent and insightful, and a great help in promoting organ donation and in understanding transplants. Sometimes they're inaccurate and confused. Sometimes they're controversial. Sometimes they're hilarious (like on Chicago Hope, the world's foremost transplant center!). And sometimes they're all of the above.
On the premise that all publicity, ultimately, is good publicity, we will try to keep you up to date on what we've seen and heard, without passing judgment. (Your input is welcome. We can't spend all of our time watching the tube.) Sometimes, when a story is so outstandingly bad and potentially damaging, we encourage you to write, call, fax, e-mail the individual, news department, studio to set the record straight.
Chicago Hope (CBS)
Husband of 'brain dead' pregnant woman offers her heart to a heart patient after the baby is delivered, much to the horror of the on-looking doctors.
A heart, about to be transplanted, is dropped in the operating room and kicked across the floor and under a cabinet, much to the horror of the on-looking doctors.
Brother of a patient patiently awaiting a heart demands, at gun point, that a newly available heart be given to his brother. When the doctors refuse, he shoots himself to provide a heart for his brother, much to the horror of the on-looking doctors.
Homicide: Life on the Street (NBC)
The parents of a 10-year-old shooting victim donate his organs, after agonizing over the decision. The father of one of the recipients tries to find out more about the donor, to express his gratitude.
Strange Luck (FOX)
Homeless people are 'treated' in hospital, only to be a source of organs for doctor's patients.
Primetime Live (ABC)
Jeff Getty, AIDS patient, baboon bone marrow recipient.
ABC News
Rod Carew and his campaign for bone marrow donors.
Today (NBC)
Reg and Maggie Green.
Celebrity Transplants
Jim Nabors (1994 liver) has recently announced a Nabors and Friends campaign promoting organ donation. Centered around Dallas, and potentially financially benefiting the Baylor programs, he has produced a series of public service announcements and other activities. He is expecting the 5 month campaign to bring in $1,000,000 and result in uncountable numbers of new donor registrants. Trading on his "Gomer Pyle" persona, he should be able to attract attention to the messages.
Hall of Famer Rod Carew has been promoting the cause of bone marrow donation. His 18 year old daughter suffers from leukemia, and a bone marrow transplant is her only hope of long-term survival. With her heritage being a mixture of Jamaican Black and Eastern European Jew, a good match is a long-shot. But her plight is shared by many others. So far, Rod's television and other public appearances and campaigns have signed up over 35,000 new people for the bone marrow donor registry.
Book Review
Transplant Success Stories 1993, by Paul I. Terasaki, Ph.D., Jane Schoenberg, Editors, UCLA Tissue Typing Laboratory, Los Angeles, CA, 1993. Subtitled, The True Triumph of Transplantation, Recipients Tell Their Stories
For years, the UCLA Tissue Typing Laboratory had published an annual account of the latest advances in organ transplantation. This book, a collection of personal stories of thirty-six people, represents their effort to present the human story of transplantation.
Don't be put off by the date of the book. Three years is a long time in the rapidly advancing field of transplantation! Some of the statistics in the back of the book, while interesting, are dated. But the stories are timeless.
Each story runs a brief two pages. What I like most was that each is accompanied by a picture. These are not clinical accounts; these are real people. Most of the people are transplant recipients, but three are donor families. Most are kidneys, but there are also hearts, livers, lungs, bone marrow, and a pancreas/kidney. One is a U.S. Congressman, one is the president and CEO of a large successful business, one is a concert pianist. But that's not what's important. (I have been particularly struck, since I became involved in transplantation, by the phenomenon that you usually have no idea what people did or do for a living; it's just not important!) What is important is that these people are alive (and doing well, thank you) because of an organ transplant. The stories are moving, filled with hope, and very inspirational.
Anyone who is facing a transplant, or has gone through one, would enjoy this book. Anyone who would appreciate some heart-warming stories would enjoy this book. I recently gave a copy to a woman who is a donor mother, to help her understand what her and her daughter's gift meant.
This book is available from the UCLA Tissue Typing Laboratory, 1000 Veteran Avenue, Los Angeles, CA 90024, for $5.00, or from the TRIO Chicago lending library.
Breakthroughs
An 11 day old baby girl received a liver transplant at the University of Chicago, setting a new world record for youngest transplant patient . The previous record holder was 12 days old and also transplanted at the U of C. The baby went home on December 21 to celebrate her first Christmas. Congratulations and best wishes to all!
L'Chaim
While this feature was intended to focus on TRIO Chicago members, an exception is being made this month to celebrate with Reg and Maggie Green, who are prime examples of the philosophy that "Life Goes On."
For those of you unfamiliar with their story, while on vacation in Italy in the fall of 1994 with their 7-year-old son, Nicholas, and 4-year-old daughter, Eleanor, Nicholas was murdered. In their tragic loss, Reg and Maggie heroically donated his organs. The murder itself caught the attention of the Italians. But their gift of life to seven dying people made even more of an impression. Italy had been near the bottom of the list for their rate of organ donation. But Reg and Maggie became (reluctant) celebrities as their story raised donor awareness throughout the country. Due in part to their efforts, the Italian government has recently passed implied consent legislation, which makes every Italian an organ donor unless he specifically states otherwise.
Their story is told through a very moving video called "The Nicholas Effect" (available through the TRIO Chicago office), and numerous magazine articles. The Greens are also the center of a new public service announcement by the National Kidney Foundation promoting donor awareness.
Reg and Maggie and Nicholas are a cause for celebration. But, in addition, they have just announced that they are expecting twins this fall. Life, indeed, does go on!
New Transplant Programs Approved
The UNOS board of directors has approved the following Chicago programs for UNOS membership: