ORGANized

Vol. 4, No. 6, June 1995 . . . A publication of the New England chapter of TRIO

TRIO goes to the library

by Suzi Holmes

During National Organ and Tissue Donor Awareness Week, my mother, who teaches mathematics at the high school I attended, spoke to teachers and students about my successful transplant and encouraged everyone to discuss organ donation with their families. In the days following that assembly, many people showed support for her having shared our story, and several students requested brochures with information and donor cards.

Then one day, as I sat at home reading a book on transplantation, it occurred to me that I could give a gift to my high school library of some books on the subject. By having these books available, older kids can do their own research and make their own decisions about donation. They can gain an appreciation for the medical miracle transplantation is, and learn of its fast-improving history. Transplantation could be a fascinating term paper subject, or a hot topic for those famous high school debates. Librarians could also use the books to create a display for NOTDAW, along with brochures and donor cards from the New England Organ Bank (if they call 1-800-446-NEOB).

I have given some books, and if you can afford it, you can do the same. If you don't have a high school library that would welcome the gift, then how about your local town library? Local librarians could also set up a display during NOTDAW.

Here are some titles I recommend:

Defying the Gods by Scott McCartney
Many Sleepless Nights by Lee Gutkind
We Have a Donor by Mark Dowie
The Puzzle People by Thomas Starzl (copies available from TRIO New England)
Organ Transplants: A Patient's Guide by the MGH Organ Transplant Team and H.F. Pizer

A gift of these books not only increases donor awareness, but it could also be beneficial to someone who suddenly becomes listed and wants to find out more about transplantation while embarking on the wait or the journey of recovery. Before purchasing any books, you may want to make sure that the library you plan to give to does not already have the titles you have in mind. If you wish to, you can give the books with copies of any newspaper articles you may have been in or with a letter from you taped inside the front piece of the book to personalize it for the reader, and to, once again, let them know that TRANSPLANTATION WORKS! As recipients, we may not be able to give the gift of life . . . but we can educate future donors and recipients by giving the gift of books! Have any other ideas? Please share them with me, Suzi Holmes, 617-894-3221.

In memoriam

TRIO New England lost two more valuable members recently. William Nelson of Rhode Island died while awaiting a second liver transplant and Kathleen Giannone of New York died while awaiting a lung transplant. Our deepest sympathy goes out to their families and friends.

Transplant ethics

We are pleased to announce that Michael Shapiro, M.D., member of the UNOS Ethics Committee, will be our guest speaker at the August chapter meeting. Dr. Shapiro is Chief of Transplantation at Beth Israel Hospital, Assistant Professor of Surgery at Harvard University, and member of Beth Israel's trauma team. His topic will be the ethical issues involved in transplantation. As members of the transplant community, you need to be as informed as possible--you never know when or where you will be asked questions about things that are happening in the world of transplantation. And you are often the only link co-workers and friends have to this medical field. Dr. Shapiro's lecture will give you some valuable insights and make you better prepared to respond to questions you might be asked. We recommend that you make an extra effort to attend this meeting: August 24, 7:30 p.m., Lahey Clinic. See you there!

Member profile

by Marcia Bujan

This month's profile is about two very busy members of TRIO New England. They are Harry and Ruth I'Anson. Ruth established and continues to be the superb editor of our TRIO newsletter ORGANized. And Harry is her strong right arm. Their home is in Chelmsford and they have been married for 12 years. Harry has two children from a previous marriage and is the proud grandfather of 4-year-old Chelsea. Harry received a liver transplant six years ago at New England Medical Center, after an illness of one year. He had been suffering from hepatitis. He retired from NYNEX after working many years there as an engineer, and is still a member of Telephone Pioneers of America. Harry also is an active member of Rotary International, and is a past president of the Chelmsfod chapter. Ruth works in the software industry writing user documentation. In addition to establishing ORGANized, Ruth was instrumental in setting up the TRIO chapter library and TRIO NE's first resource guide has a spectacular look thanks to Ruth's editing talents. Harry and Ruth are founding members of TRIO/NE. They joined TRIO originally to become better informed about transplantation and now actively work to share what information they've acquired wherever it's needed. Our chapter is fortunate to have the I'Anson's on our team.

Volunteers needed

The New England Organ Bank is looking to the ranks of TRIO New England to help them with a couple of upcoming projects. The first one is the national conference for transplant coordinators which is being held at the Westin Hotel in Boston from Saturday, July 29 through Wednesday, August 2. If you have a few hours to spare during that time and want to help, call Posy Durning, Assistant Director of Donation Services for NEOB at 617-244-8000. (Posy could also use a few volunteers before the meeting to help prepare conference materials.) As a bonus, volunteers will be treated to a party and also receive a discount admission for conference events. The next project NEOB needs some recruits for is the Big E in Springfield. NEOB and NEOPO will jointly sponsor a booth at this fair, which runs from September 25 through October 1 from 10 a.m. to 10 p.m. They'll need lots of manpower for this one, so don't be shy. While we're recruiting, don't forget that TRIO New England is planning to have booths at the Hyannis Waterfront Festival (July 20 and 21), the Gloucester Waterfront Festival (August 19-20), and the Newburyport Waterfront Festival (September 2, 3, and 4). With over 300 members now, we should be able to spread the workload around.

Milestones

This month we start off with belated congratulations to Joseph Ferreria, who celebrated the sixth anniversary of his heart transplant (MGH) last month. Sorry we missed it, Joseph, but thanks for sharing your news with us. Turning our attention to June anniversaries, we are pleased to present another long list. Senior honors go to Matt MacKenzie, who celebrates his sixth transplant anniversary this month; Matt had a liver transplant at MGH when he was 11 years old. Laurence Riley (heart, B&W) and Maureen Dacey (kidney-pancreas, Beth Israel) are celebrating fifth anniversaries. Four-year honors go to Haemi Kahan (heart, B&W) and Clair Smith (kidney, Hartford Hospital). Pat Harrington (kidney-pancreas, NEDH) hit the 3-year mark, while Carolyn Fiore (liver, Baylor University Medical Center), Brenda Hamlett (heart, B&W), Susan Leone (heart, B&W), and Joyce Nadeau (liver, NEMC) are all enjoying their second transplant anniversary. Last, but far from least, we congratulate Rachel Holm (liver, MGH) who was only 14 months old when she had her transplant, and Marianne McGown (liver, NEMC) on the occasion of their first anniversary. We wish you all a happy, healthy summer.

Formerly HTA

by Linda Fall & Karen Ferreira

The Heart Transplant Association of New England was founded by Bob Jellison, recipient of a heart transplant. At the time, Bob had difficulty trying to find someone else in his situation to talk with, someone other than medical professionals, someone who knew what he was going through, someone who also had been transplanted. He realized that there was a desperate need for a group to be started for others like him who could get together and express their feelings and experiences. He worked endlessly in educating the public about organ donation and showing people that transplants do work. He was living proof of it. Those of us who were fortunate enough to know Bob, know just how dedicated he was, and how he put all of his heart and soul into this group. Bob passed away one year ago this June. Mike Weldon, another very active member of our group, took over for Bob. Mike was just as energetic and worked just as hard as Bob did. Mike also was always willing to do anything that he could possibly do for organ awareness and supporting those waiting for transplants. It was not unusual to see Mike or Bob visiting people in the hospital or calling someone that they heard of that was waiting for a transplant. Their work never ended. This past December, just before Christmas, Mike also passed away. They have been sorely missed. The Heart Transplant Association of New England (HTA) is now merging now with TRIO New England. One of the immediate benefits of this merger is that all members will now have access to two monthly meetings: one at 7:30 p.m. on the fourth Thursday of the month at Lahey Clinic in Burlington and one on the second Sunday of the month at 12:00 noon in the Walcott Room at MGH. As we schedule speakers and plan meeting topics, we will report on them here. Meanwhile, remember that we are all one large group now, with common goals and interests. We are there for each other to support and to love. We truly know where you have been and wish to walk with you along the pathway into the future. Please come and share your hopes, concerns, fears, and challenges. Let us applaud your accomplishments and successes. Allow us to be inspired by your individual story. Grant us the opportunity to encourage you and be encouraged by you. Above all, let us share the faith, love of family and friends, and sense of humor which have brought us this far. We must never lose these gifts. For more information, please contact Joe Ferreira at 617-491-0819 or Linda Fall at 508-256-3297.

Marcia's corner

by Marcia Bujan

* There is a 12-year-old boy who lives in Argentina named Freddy Bell. He has been ill most of his life with kidney disease. His dad will be donating a kidney to him soon. The family does not know anyone who has ever had a transplant and feel somewhat isolated because of this. Freddy would love to receive cards or letters from us. Please respond to this youngster's request. Mail may be sent directly to Freddy at:

Estancia La Alameda
C.C. 69 Saladillo, 7260
Buenos Aires, Argentina

or to his aunt, who will forward mail to him:

Veronica Simonpietro
23 Sherman Street
Sandy Hook, CT 06482

Thank you!

* Two new studies by the American Lung Association show that taking vitamins C and E may have a beneficial effect on the lungs. Researchers speculate that such antioxidant vitamins may decrease airway inflammation.

* Dear Abby recently published an essay in her column that was written in 1976 by Robert N. Test who was one of the pioneers in promoting organ and tissue donations. It is reprinted below.

To Remember Me

At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped. When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don't call this my "deathbed.''
Call it my "bed of life,'' and let my body be taken from it to help others lead fuller lives.
Give my sight to a man who has never seen a sunrise, a baby's face or love in the eyes of a woman. Give my heart to a person whose own heart has caused nothing but endless days pain.
Give my blood to the teenager who has been pulled from the wreckage of his car, so that he might live to see his grandchildren play.
Give my kidneys to one who depends on a machine to exist from week to week. Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.
Explore every corner of my brain, take my cells, if necessary, and let them them grow so that someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her windows.
Burn what is left of me and scatter the ashes to the winds to help the flowers grow.
If you must bury something, let it be my faults, my weaknesses, and all my prejudice against my fellow man.
Give my sins to the devil. Give my soul to God. If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever.

Mr. Test died last fall, but he left behind a wonderful legacy.

Mentors in our midst

by Suzi Holmes

As you may remember from the last issue of ORGANized, I am investigating the possibility of setting up a mentor program in New England. This program will train recipients to give one-on-one support to transplant candidates. After meeting with Martin Smith, director of TRIO NE and Theresa Hartel, transplant coordinator at NEDH, the realization of this program is picking up steam.

Before this program becomes a reality, however, we need to identify recipients who are interested in becoming mentors. Many of you may have already indicated such by checking the box in the long form of the TRIO application. If you have, we appreciate your interest, and we will be contacting you in the near future. If you are interested in learning more about the mentor program, and would like to offer your invaluable friendship to a transplant candidate, please contact me, Suzi Holmes, at 617-894-3221 or Martin Smith in the TRIO office.

As part of the mentor program, a booklet with words of advice and encouragement for candidates and recent recipients is in the works. The response to the questionnaire last month has been very positive. A big thanks to those who have replied! If you haven't had the chance to reply yet, please take the time to do so now, using the form enclosed with this newsletter. Your response doesn't have to be too lengthy (unless you have lots to say!), and it is very important for us to gather a diverse group of useful tips from "those who have been there''--YOU!! Please take a moment to fill it out, before everyday life sweeps you away--a transplant patient may silently thank you someday!

News briefs

* TRIO International will be awarding several $1,000 scholarships to transplant recipients who qualify. Applications must be submitted by July 15, 1995. For an application and more information, contact the office.

* As of July 1, the University of Massachusetts Medical Center will once again be affiliated with the New England Organ Bank. Meanwhile, UNOS continues to work on plans to implement regional allocation of organs, a plan strongly endorsed by TRIO New England.

* TRIO International recently sent us a copy of a bulletin from the U.S. Environmental Protection Agency and Centers for Disease Control and Prevention advising people with severely weakened immune systems about a parasite called cryptosporidium that is commonly found in lakes and rivers and find its way into some drinking water supplies. It causes gastrointestinal illness, and people with weakened immune systems (like transplant patients) are likely to have more severe and persistent symptoms.

Although the EPA and CDC do not have enough data to recommend that all immunocompromised persons take extra precautions with regard to their drinking water, they offer the following measures for those who wish to: (1) boil your water; (2) install a point-of-use filter that removes particles of one micrometer or less; or (3) use bottled water. For a complete copy of this report, call the TRIO NE office.

* The initial printing of the Resource Guide is almost depleted. If you have found any errors or have suggestions for future editions, please get your comments to Martin Smith as soon as possible.

Member news

* Dick Ficociello is home, recovering from his long-awaited lung transplant. With the help of his daughter Marcie he even made it to the June chapter meeting.

* Helen Hamilton is making great progress after her recent lung reduction surgery. It's been a tough road for Helen, so it's great to report some good news about her condition.

* Michael O'Rourke is also home and feeling better. Let's keep it that way, Mike.

* Last month we reported on the recent transplant of one of our newer members. Most of our facts were correct, but we misspelled her last name. Apologies to Courtney Ridd.

Upcoming events

Unless otherwise noted, chapter meetings are held at 7:30 p.m. at the Lahey Clinic in Burlington, MA (Check at the front desk for meeting room.) July 27. HMI, Inc. A pharmacist will answer questions about medications and their side effects.

August 24. Transplant Ethics. Michael Shapiro, M.D., Chief of Transplantation at Beth Israel and member of the UNOS Ethics Committee, will discuss generic issues involved in transplantation.

September 7-9. TRIO International Conference, Boston Park Plaza Hotel. (Details in future newsletters.)

September 14. Tribute to Jess Cain. Boston Park Plaza Hotel.

September 30. Transplantation Seminar sponsored by the National Kidney Foundation. Rhode Island Hospital.

More information

If you want more information about TRIO (Transplant Recipients International Organization), contact:

Martin Smith
TRIO New England
172 Boston Street
Middleton, MA 01949
Phone: 508-777-6050
Fax: 508-777-0620
email: BYGJ31A@prodigy.com

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Last modified: 11 May 2000