Number 37

On Thursday, June 13, Lisa Kory, Executive Director of TRIO, presented John Butorac, President of TRIO Chicago, and the Board of Directors with our official CHapter Charter at a grand celebration. We are the 37th official chapter. And for those of you who care about such things, we chartered as the third largest chapter in the United States! From our first meeting on January 31 we've come a long way. But we've still got so much to do...

The evening was filled with food and drink and music, meeting old friends, making new ones, sharing stories, hopes, and dreams. It was a celebration of TRIO Chicago, and all of us. The phrase may seem over-worked, but it truly was a "celebration of life".

We received official congratulations from George Ryan, Mayor Daley, Congressmen Phil Crane, Dick Durbin, and John Lipinski, and Senator Paul Simon, although their schedules prevented them from attending. While we missed them, it didn't matter, because, as John said in his welcoming address, "we were the honored guests." Representatives from the Secretary of State's Office, ROBI, OTS, the Barbara Ann DeBoer Foundation, and several transplant centers were there.

While the evening was intended to be a celebration rather than a ceremony, we, of course, had to have some speakers. Dick Cygan, our original Vice President, now retired, acted as master of ceremonies. John Butorac gave the welcoming address. Board members Terry Costello, Christine Duda, and Moira Lydon spoke as transplant recipients. Mary Palanchar, Secretary/Treasurer, spoke about being a family member. Kiki Gonsiorek spoke of her experience as a donor mother. Lisa Kory wrapped up the program with her talk culminating in the actual presentation of the charter. (Editor's Note: By popular demand, Mary's talk and Kiki's poem are reprinted in other areas of this newsletter.)

There was an electricity in the room that is hard to describe. I'd like to think of it as "the spirit of TRIO Chicago". And a portent of things to come. Lisa Kory quoted Margaret Mead, with a quotation we should all take to heart: "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has".

The room had been decorated with white and green balloons, with the phrase "Recycle Yourself -- Be an Organ Donor." At the conclusion of the evening, we set them free. Who knows where the wind would take them. Who knows who just might be inspired by their message.

One of the most amazing things about the evening, was the weather. At last. You couldn't have asked for a better day.

Congratulations to, Todd Mitchell of the Barbara Ann DeBoer Foundation, the winner of the door prize, two tickets to a Bears preseason game and lunch or dinner at Butch McGuire's. Unfortunately, Tim wasn't there for the drawing; he was trying to retrieve his car, which had been towed!. But Tim was an even bigger winner. New to the DeBoer Foundation, this was his first chance to meet some real live transplant recipients. I'm sure it was an experience he won't soon forget.

Our undying gratitude to Butch McGuire for providing most of the food, a bartender, and along with River North Distributors, the liquid refreshments. And to Mike Lamoureux, for volunteering nearly all of his family to provide the music, help with decorating, preparing food, serving, cleaning up, and anything else we could think of for them to do. He did let a few of them relax and enjoy themselves, but special thanks to wife Cindy for all of her kitchen management duties. And again to Mike and Butch for the fabulous door prize. And, of course, to the Chapter Chartering Committee (i.e., our Board of Directors), also known as the Prom Committee.

Now that the festivities are over, we can concentrate on the work at hand. There are still over 46,000 people waiting for organ transplants. There are still lots of recipients who are struggling with their incredible journey. There are still lots of medical professionals, legislative officials, and the general public, who need to be educated in the finer points of organ donation and transplantation. And there's a whole world that needs to be reminded that "Transplantation Works!"

Health Warning

As we go to press… The Center for Disease Control is warning of outbreaks of an intestinal illness caused by a parasite, cyclospora. (NO, NOT CYCLOSPORINE!) The illness resembles the flu and can be particularly dangerous to persons with weakened immune systems. The parasite apparently is found on some fresh fruits. Details are not firm at this point.

But this is a good time to remind everyone to wash your fruits and vegetables. A couple drops of dish washing liquid in a sink of water does wonders. And a water filter is a must. Don't forget, even if you are going to peel the fruit or vegetable, wash it first. Parasites, bacteria, pesticides on the skin can get on your hands or knife and contaminate the inside.

Driver Service Facilities Display Photos of Recipients

Jan Grimes, Organ Donor Program Manager for the Secretary of State (and newly crowned Ace TRIO Chicago reporter) reports:

Recently, the Secretary of State's office began placing photographs and short stories of transplant recipients in Driver Service facilities statewide.

We want to thank (TRIO members) Amy Thom and Dick Cygan for participating in this program.

Many times, we hear from people who believe that transplants are only experimental or donated organs only go to the rich and famous. These photos help us show that transplants do work and have saved the lives of people in every part of the state.

The photos are also an inspiration to staff at the facilities. These people are vital to our donor program as they ask each person about participation in the Donor Registry. The photos help staff to realize how important the registry is and that recipients are real people with families, hopes and dreams.

Without help from recipients willing to share their personal stories, our program would not be the success it is. At this point, we have a good number of photos from the Chicagoland area - but are looking for organ recipients who live in other parts of the state. We would appreciate any leads that will help us identify recipients outside of the greater Chicago area. You may contact our office at 217-782-6258.

(Editor's note - I believe everything that's written here except the part about getting a short story from Dick Cygan!)

Free Drugs!

OK, don't take the headline wrong. I'm talking legal (by prescription) drugs here, nothing else.

But for those of you with deep drug costs and shallow pocketbooks, I've got a good 32 cent investment for you. The Pharmaceutical Research and Manufacturers of America publish a booklet entitled the "1996 Directory of Prescription Drug Patient Assistance Programs". This booklet details programs that provide free drugs to physicians for those patients who could not otherwise afford them. These programs are not limited to transplant-related medication, but cover a wide range of prescription medicines. Applications for these programs must be made through your physician. For a free copy of the booklet, send a request to: PHRMA, 1100 Fifteenth Street NW, Washington, DC 20005.

Ancient Chinese Secret…

Most of you who were able to join us at the Chapter Chartering Celebration were able to partake in the delightful surprises of fortune cookies, courtesy of Cindy Lamoureux. Most of the fortunes were the standard, garden variety predictions, but one was quite unusual. Cindy's husband, Mike Lamoureux opened a cookie to reveal the message "You will have a change of heart".

That's not so unusual, you say! But, did I mention that Mike's a heart candidate?????

About Caregivers…

(Ed. Note - The following is excerpted from the talk given by Mary Palanchar at the chapter chartering ceremony. It is reprinted by request of many and says quite a lot about the transplant experience. We should all remember to thank our caregivers each and every day.)

John asked me to speak tonight as a family member. Like everything related to transplants, for the family, every situation is unique, but we all share many common experiences and emotions. I can't speak for all family members, I can only tell you what I have experienced and why I'm here.

Sixteen and a half months ago, John was in intensive care waiting for a new liver. This was only about three months after he was listed. While still in reasonably good health at that time, we were told that he probably had a good 2 to 5 years. 2 to 5 years seemed like a long time, once you had gotten past the initial message of terminal condition. So we had not yet gotten to the point of feeling like we were "waiting". But suddenly the term "end-stage" took on more immediate meaning.

So at the time, I didn't really think about my role in all this. I just did what had to be done. It's only now with some perspective of time, that I can think about what being a family member, specifically a spouse, means.

You're the one who has to be supportive of the patient, make concessions for what your spouse is unable to do anymore, find ways to make up for the ego-shattering that a debilitating illness brings on. To put up with the memory loss, the mood swings, the depression. And in my case, just to put up with John. You're the one who has to explain to family and friends what's happening, to present the right balance of just how serious this really is with "we're doing just fine" and "everything's going to be okay". You may have children who don't know how to deal with the changes in their lives. You're the one to keep the home fires burning, maybe keep the income coming in, keep a business running, keep life as near to normal as possible. You organize meds and change dressings. You're the one who does the research on just what this disease is, what the treatments are and so on. You read and ask questions, to try to understand. And you're the one, somehow, no one seems to pay much attention to,

And all the while, you're having to deal with the fact that your world has come apart.

But you do it. You do what you have to do.

The transplant psychiatrist asked me what I was most afraid of. It wasn't how we would pay for all this. Or even the possibility that John would die! What I was most afraid of was what was coming next. Would it be the final straw? Would I just not be able to deal with it anymore? Every day when I would go to the hospital, or the phone would ring, it would be something new. Just one damn thing after another. I didn't know how I would get through it all.

But I learned. It doesn't matter that you don't know how you'll get through it. You don't need to know how. You will. That's all you need to know.

You have the strength. You need to reach deep inside you. And you need to reach outside you. There is strength and energy that you only have to reach for. But you have to reach for it. There is a spirit, a life force, and energy that is all around us, is in us, is all of us.

It may be impossible to get through the transplant experience without some component of religion or spirituality. I experienced it in a very tangible way. I didn't know where it came from, but I felt a peace and calm and energy in the midst of total chaos. In the waiting room, I felt a connection with the family of the young boy with a brain tumor, with the woman whose husband had suffered an incredibly tragic accident at work. Curiously, I felt a strength that seemed to come from them. One day I idly paged through a copy of the Catholic Digest in the waiting room. I don't remember what I read. But it was as if I was struck by lightning. So that's what they mean by the Holy Spirit!

I don't feel this all so intensely now, like I did last year. I don't need to now.

But I know now, when the need is there, the strength is there too. You just need to know it. To reach for it. To ask for it.

Some transplant organizations use the slogan "No one should go through this alone." That's true. But I truly believe that no one does go through this alone.

That's why I'm here. That's why we're all here.

Apologies

I'm sorry. Truly sorry. I'm embarrassed that I'm so sorry. But it's not my fault. It's Lamoureux's fault! He had the schedule! They worked for HIM!

Special thanks, heretofore unmentioned (but it wasn't my fault, it was Mike Lamoureux's fault!), to the forgotten volunteers during NOTDAW:

Wesley Huggins

Jeannie Kozlewski

Steve Moore

Sandra Nawracaj

Apologies in advance if any of the names are spelled wrong - but guess who gave me the list? So I take the responsibility, but blame HIM!

Untitled…

by Kiki Gonsiorek

We are familiar strangers

I look into your eyes knowing

what I need to see,

Seeing glimmers and wisps of…

It was a gift God gave to me…

I pass it on to you.

His silenced life continues

breath by breath, beat by beat.

And one life becomes

the miracle of many.

One gift given again multiplies

with each recipient.

And my gift is shared high and low,

east and west,

everywhere the need has grown.

For a gift from the heart has no goals.

I look into your eyes knowing

what I need to see -

Seeing … life!

Around the Town

Organ donation materials were distributed at the Printers Row Book Fair, thanks to Mary Palanchar. Although we were not permitted to have our own table, we were able to get our materials displayed at the information booth. We are in the process of getting officially "hooked up" with various neighborhood festivals and fairs. In the meantime, look around your neighborhood to see if there are any opportunities to promote organ donation.

Christine Duda, working with the OTS/Barbara Ann DeBoer Foundation Donor Awareness Tour, spoke about organ donation and transplantation at an area high school in May. We are in the process of establishing our own speaker's bureau, which will also work with ROBI, the Secretary of State's Office, NKF, Barbara Ann DeBoer, etc. We know more of you are out there speaking. Let us know what you're doing.

Sharon Golz, who markets reverse mortgages, sends out organ donor materials with her mailings to her clients.

Louis Harrington, representing the transplant center, was featured in the book for the (fund-raising) Campaign for Northwestern Memorial Hospital. Lou will also be featured in the Secretary of State's publication targeted at increasing organ and tissue donor awareness among minorities in Illinois.

John Keegan is going to Europe this summer and will visit the European Transplant Association and various TRIO chapters. We're looking forward to John's report on "What I Did on My Summer Vacation".

The NKF has a booth at Taste of Chicago. They've invited members of the Transplant Games Team Illinois to appear at the booth. At least 6 TRIO Chicago members are on this year's team going to the Games.

Media Watch

E.R. (NBC) ended the season with John Carter missing his med school graduation to sit with a young girl waiting for a liver transplant. It was all very low-key, but expressed the fear and unknowing and the need for a hand to hold that are so important.

20/20 (ABC) featured a new surgical technique which may eliminate the need for many heart transplants. Developed by surgeon in Brazil, the technique involves removing a part of the heart tissue in patients with enlarged hearts. It was developed in an area where the feasibility of heart transplants is low, but the need of heart patients is still great. The technique is now being studied by a number of medical centers in the U.S. and around the world.

A new movie is in the works Spares, based on a book by Michael Mansfield Smith. The movie involves the cultivation of clones to provide organs for transplantation. Controversial? You bet. There's been some lively discourse over the Internet about it. While "it's only a story", it has the potential to reinforce misconceptions and myths about organ transplants.

Another movie is in the works, based on a book Change of Heart by Claire Silvia. Ms. Sylvia, a heart/lung recipient, has gained a reputation for her public insistence that she has taken on the characteristics of her donor. While this is an interesting premise for a book or movie, it is hardly the experience of the vast majority of transplant recipients. And it is one of the major myths and negative misconceptions working against organ donation and transplantation.

Today (NBC), probably among other news/features shows, publicized the story of a nine month old girl in need of a bone marrow transplant to fight her cancer. The family was not looking for a match, there is already one in the family. Their issue was that their insurance refused to pay for it. Thanks to the publicity, the insurer reconsidered. No word yet on when the transplant will take place.

Bob Casey, Former Pennsylvania Governor and TRIO president, and a heart/liver recipient, has just published his memoirs Fighting For Life.

Recognition

Several members of the U.S. Congress sent their congratulations on our chapter chartering. Copies of the letters are available on request. Space limits us from reproducing the letters in their entirety, so we have excerpted them for your perusal. (OK, so I got a thesaurus as a chartering present!)

Dear TRIO Chicago,

I am pleased to congratulate you on receiving the certification to establish a TRIO chapter in Chicago. This occasion is certainly worthy of special recognition.

I commend the tremendous work of TRIO Chicago. I hope that TRIO Chicago will celebrate many more successes in the years to come.

William O. Lipinski

Member of Congress

Dear Friends,

I want to welcome TRIO to Chicago and to express my strong support for the important work you will be doing for the citizens of Illinois.

As a member of the Senate Labor and Human Resources Committee, I serve with Senator (Bill) Frist (Tennessee), a heart surgeon who has done many transplants and has helped inform our committee about organ transplant issues. I have become very familiar with the hopes of the more than 45,000 individuals, and their families, who wait for word that they will be among the 18,000 fortunate ones each year who receive a life-saving organ. I have also had an opportunity to see the tremendous contribution TRIO makes, particularly in the area of increasing public awareness. Senator Frist and I have handed TRIO information and donor cards to each of our fellow Senators, and I am pleased to say that we have gotten the majority of our colleagues to sign on as potential donors.

The family support and public education TRIO provides through this Chicago chapter will improve the lives - and save the lives - of many of our citizens. I congratulate you on the chartering of this chapter and am grateful for your dedication to these vital services.

Paul Simon

U.S. Senator

Dear Mr. Butorac,

It is with great anticipation that I welcome a new chapter of TRIO to the Chicago area.

The work of TRIO has been instrumental in raising the level of donor awareness across the United States through community activities and public service campaigns. TRIO also has done much to improve the quality of the lives of transplant candidates, recipients, their families and donor families through support groups and other activities. I am confident that this new chapter will provide quality care to the residents of Illinois.

Once again, let me welcome the members of the new chapter of TRIO Chicago.

Phil Crane, M.C.

Dear Mr. Butorac,

I would like to extend my congratulations and encouragement to you in your work in the field of organ and tissue donation.

TRIO has advised me of TRIO Chicago's certification to establish a chapter in Chicago. With more than 2,000 Illinois citizens on the waiting list for transplants, your local effort to increase public awareness of the important issue of organ and tissue donation is an important part of the overall effort to save lives. And with a growing number of successful transplant recipients as well as a growing number of people on the waiting list, your support for transplant recipients, candidates and their families can provide an important boost to many people who have been touched by the need for a transplant.

I have appreciated TRIO's support of my efforts to enact legislation to encourage organ donation and family discussion by inserting organ donation information in income tax refund check mailings. I look forward to working with you and the other members of the new Chicago chapter of TRIO in our mutual desire to increase donation.

Richard J. Durbin

Member of Congress

Celebrity Transplants

These are a little old - we ran out of room last month. But in case you missed the stories elsewhere…

Rod Carew's daughter, after a long wait for a bone marrow transplant, finally received a stem-cell transplant. Unfortunately, it was not enough, and she lost her battle. In her name, her father waged a very successful campaign to raise awareness of the need for bone marrow donors and to sign up more people for the registry. The drive came to Chicago shortly after Michele's death, and signed up about 500 new people. If you are interested in registering as a bone marrow donor, contact our office, or call 1-800-MARROW2.

Erma Bombeck, after a long wait, got a new kidney. But complications following surgery took her life. While she was waiting, a large number of her readers offered their own kidneys..

Paul Tsongas, former senator and presidential candidate, received a bone marrow transplant from his twin sister. He was reported in good spirits but tired following the transplant.

Carroll Shelby, noted automotive designer (Ford GT500), received a kidney in March from his son.

Membership

The transplant community faces continual challenges. Candidates face severe illness and the ever-increasing shortage of organs. Recipients face lifelong expenses and the substantial barriers to employment. We all face significant issues regarding medical expenses, insurance and the need for support services. Individually, we cannot hope to overcome these challenges. Only through one, united voice can we hope to address our collective concerns.

We want TRIO to provide that one, united voice. As an organization, TRIO is well past 3,000 members. We hope to attain our goal of 5,000 members by the end of 1996. TRIO is already the recognized voice for transplant recipients in Washington, but as our membership grows, our voice becomes louder.

We can best expand our voice through your help in recruiting new members. If you know others interested in transplantation, encourage them to join TRIO. The next time you are in for tests, introduce yourself to others in the waiting room and tell them about TRIO. Have them give us a call (312-922-0142) and we'll mail them more information. Better yet, being them to the chapter chartering celebration on June 13 or to our next regular meeting.

Remember, there is no financial commitment for information or for membership. What we do need are commitments to be part of the one, unified voice that speaks for the transplant patient. We face many common issues. Divided, we stand alone. Together, we can change the world.

Anniversaries

Patrick Healy Liver 7/10/95

Don LaRocco Kidney/Pancreas 7/89

Moira Lydon Liver 7/07/95

Molly Meierhoff Kidney 7/31/95

Patricia Shephard Heart 7/08/95

Alison Taurel Kidney 6/18/91

Thank You

Some thank you's are in order, so thank you to Gilbert Lamoureux, Tina Weiss, Mary Wilson-Crocker, the Barbara Ann DeBoer Foundation, and the City of Des Plaines Emergency Services & Disaster Agency (thanks to George Weissman) for their generous contributions. Thanks to Bill Brandt and Sandoz for their contribution of $500. And special thanks to Butch McGuire and River North Distributors for their food and drink donations which helped make our Chartering Celebration a smashing success.

Also, belated thanks to Randy Heyn-Lamb, Brian Hain and Stuart Morris who have all won the 50/50 drawings at our monthly meeting and donated the prizes to our chapter.

And thanks to Dick and Mary Cygan, who solicited contributions from former Illinois Tool Works employees, and encouraged them to participate in their matching funds program. That netted us three times the amount of the individual contributions. Remember, all contributions to TRIO Chicago are tax deductible -- and eligible for matching funds programs.

Neoral

Many centers are now prescribing Neoral in place of Sandimmune as the primary immunosuppressant medication for new recipients and are migrating existing recipients to Neoral as well. Since both drugs are cyclosporine, but with a different mechanism for delivering the medication to the body, the transition is usually smooth.

However, it is important to have your cyclosporine level monitored by your transplant center during the transition to Neoral. We have heard stories of pharmacies converting patients to Neoral automatically when they renew Sandimmune prescriptions. This is not good! If you are converted to Neoral by your pharmacy, call your transplant center immediately. While the dosages of Neoral and Sandimmune are usually the same, they may not always have the same effect.

For more on this subject, come to our July 11 meeting, where Bill Brandt of Sandoz will talk about Neoral and Sandimmune and Dr. Eva Vasquez of the University of Illinois pharmacies will talk about transplant medications.

UNOS Statistics

The list just keeps growing and growing and growing and …

On June 12, 1996 there were registrations for:

32,568	kidney transplants
6,505	liver transplants
285	pancreas transplants
40	pancreas islet cell transplants
1,386	kidney-pancreas transplants
76	intestine transplants
3,625	heart transplants
222	heart-lung transplants
2,060	lung transplants
46,618	total transplants

Last modified: 11 May 2000