ORGANized

Vol. 5, No. 1, January 1996 . . . A publication of the New England chapter of TRIO

Happy new year!

We hope you've all had a pleasant holiday season and are ready for the challenges of the new year. 1996 promises to be an exciting one for TRIO New England. For starters, check out the schedule for the first six months; you'll see that it includes some truly interesting topics for members of the transplant community.

In addition, we officially roll out the mentor program this year, and we will be introducing the second edition of the Resource Guide, which will again be distributed free to patients and other interested parties.

We now have two satellite groups, one that meets in Boston on the second Sunday of each month and one that meets in Portland, Maine, on the first Wednesday of each month. And if things go to according to plan, there will soon be a third satellite in Rhode Island, which would give even more members an opportunity to give and receive the support and friendship that is such a vital part of TRIO membership.

The chapter hopes to jump start its speaker's bureau this year by offering new training to interested members and by aggressively seeking speaking engagements with local civic and religious organizations. The newsletter will continue to be issued 11 times a year.

Details of many of these projects can be found in this newsletter. Call the office for more info.

In memoriam

We are sorry to report the recent deaths of three of our members: Shih Wang, Susan MacLaughlin, and Renee Miceli.

We extend our sincerest sympathy to their families and friends.

Xenotransplants

The extreme shortage of donor organs has caused some researchers to take a close look at species-to-species transplantation as a possible solution. This process, called "xenotransplantation" or "xenografting," has been under investigation for decades. Over the last few years there have been occasional headlines about a human receiving a baboon organ-- most recently there have been news stories about an AIDS patient receiving a bone marrow transplant from a baboon. But to most of us, the concept of xenotransplants is a mysterious topic. Nobody is more sensitive to the crisis of the donor shortage, but how viable a solution is this?

TRIO New England is pleased to announce that David H. Sachs, M.D., Director of the Transplantation Biology Research Center at Massachusetts General Hospital and Professor of Surgery at Harvard Medical School, will be our guest speaker at the February chapter meeting. Dr. Sachs has been involved in transplantation research for years, and was formerly Chief of the Immunology Branch of the National Cancer Institute. He is a member of the editorial board of several journals in his field, and is editor in chief of Xenotransplantation.

Dr. Sachs will give us some insight into what is actually happening in the field of xenographs, what the future might hold, and what some of the ethical issues are. This should be a fascinating evening for members, and we hope you'll make a special effort to be there.

News from Maine

The Maine satellite group of TRIO New England had a successful first organizing meeting on December 6 at Maine Medical Center. The turnout was very encouraging, with 27 individuals in attendance. Those attending included recipients, candidates and family members. Also present were representatives from the Maine Kidney Foundation, the Maine Lung Association, and the Maine Eye Bank. The group decided to meet on the first Wednesday of each month, with meetings to begin at 7:00 p.m. and to end no later than 9:00 p.m.

We want to thank Maine Medical Center for letting us use space in the Dana Education Center and Bruce White, Transplant Coordinator, for his help in arranging for the space and refreshments.

The group will meet next on February 7 at the Dana Education Center, Classroom #3, Maine Medical Center, 22 Bramhall St, Portland, at 7:00 p.m. The tentative topic for the evening is the Transplant Games, which will be presented by Wayne Clark, transplant games representative for the Maine Kidney Foundation. We hope anyone interested--from Maine or elsewhere--will join us for the evening.

In the event of snow, the Maine Kidney Foundation has allowed us to access their phone message system to leave a cancellation message. Call the Kidney Foundation at 207-772-7270 or 800-639-7220 if the weather is questionable. So think nice weather and we hope to see you all there!

Rhode Islanders, unite!

Massachusetts has been the center of TRIO New England activities to date, but that is changing. Jim Brown has successfully launched a Maine satellite group and now Florence Browning is exploring the possibilities of starting one in Rhode Island.

Anyone interested in joining such a satellite should contact Florence at 110 Woody Hill Road, Hope Valley, RI 02832 or call 401-539-7606. If there is enough interest, Florence hopes to start a local group that will enable Rhode Islanders (as well as members from bordering states) to become active TRIO members and reap the benefits of giving and receiving support without trekking to the Boston area to do it.

Party time

Getting bored by the abrupt slow-down in your social life now that the holidays are over? The New England Chapter of the American Liver Foundation has the answer: its annual Gift of Life celebration will take place on Sunday, February 11, at 2:00 p.m. at the Sheraton Tara Hotel in Newton.

This celebration brings together and honors transplant recipients, their families, physicians, nurses, support staff, and friends of the American Liver Foundation. The Foundation has extended an invitation to all members of TRIO New England, not just liver recipients.

It is free and open to all, but advance registration is required. For more information or to register, call the American Liver Foundation at 617-527-5600.

Marcia's corner

by Marcia Bujan

Wishing everyone a very happy and healthy new year!!!

American Health Magazine states that 20% of all migraine sufferers are sensitive to specific foods. If you suffer from migraine headaches, keep a food diary and contact your physician. Below is a list of some food groups that can trigger migraines:
- Alcohol
- Sourdough and freshly baked yeast breads
- Caffeine
- Yogurt, ice cream and aged cheese
- Salted, pickled, or cured foods
- MSG, soy sauce, and meat tenderizers
- Peanuts and peanut butter
- Citrus and dried fruits

If you have questions concerning diet, nutrition, and cancer, registered nurses at the American Institute for Cancer Research's Nutrition Hot Line can provide answers. Call 800-843-8114, Monday-Thursday, 9 a.m. to 10 p.m. or Friday, 9 a.m. to 5 p.m.

Glaucoma Patient Resource, a 22-page pamphlet, is available from Prevent Blindness America. For a free copy, call 800-331-2020 between 8 a.m. and 5 p.m. central time.
Dr. Michael Shapiro, Chief of Transplantation at Beth Israel Hospital, will be featured speaker at our March meeting. Dr. Shapiro spoke at the August meeting and was so well received that he has agreed to return and captivate us with his commentary again. Put it on your calendars!

Member news

Congratulations to Peggy Goosely who received a double-lung transplant at Brigham and Women's in October and to Paul Cameron who had a liver transplant at New England Medical Center this month. Both are doing well.

Get well wishes to Patty Savella, who recently underwent surgery, and to Dick Ficociello, who has encountered a few bumps on his road to recovery. We hope you are both feeling better soon.

Milestones

We're starting the new year with a long list of transplant anniversaries, and some of them are real show-stoppers. For example, Holly White received a kidney transplant at Children's Hospital fifteen years ago this month! Randy Stafford is not too far behind: he had a kidney transplant twelve years ago at University of California Hospital in San Francisco. Another major milestone is being celebrated by Constance Kelley who is celebrating the tenth anniversary of her liver transplant (NEMC).

Other milestones include Florence Browning (kidney, NEDH) and Vincent Parrazzo (heart, B&W) who are both celebrating 6-year anniversaries. Close on their heels are Rosalie Katchen (liver, NEDH), Graig May (kidney, NEDH), and Janet Reardon (lung, MGH) who had their transplants five years ago. And Elizabeth Weisberg (kidney, Lahey), Gerald McCarthy (kidney, NEDH), and Scott Frank (heart, Loyola University Medical Center) are all celebrating 3-year anniversaries.

Two-year honorees are Judith Bartlett (liver, NEDH), Edward Chapman (kidney, MGH), Rodney Eriksen (heart, MGH), and Cynthia Sheridan (kidney, NEDH). And the freshman members, who received transplants one year ago this month, are Marilyn Cabral (liver, NEMC), Elizabeth Cahill (heart, B&W), Paul Cox, M.D. (liver, NEMC), and Neil Raymond (kidney, MMC).

As always, we extend our heartiest congratulations to all of you and best wishes for good health throughout the new year.

Mentor program kickoff

A small "pilot" group of transplant recipients met recently at New England Deaconess Hospital for the first mentor training session. Because the program is new to New England, coordinator Suzi Holmes wants to proceed slowly and cautiously. Therefore, the program, which pairs a transplant recipient with a transplant candidate, is being introduced in one hospital (Deaconess) to one group of patients (liver patients). "Once we have some experience under our belts, and have had some time to evaluate and modify our training and follow-up plans," says Suzi, "we hope to expand the program to include other patient groups and other transplant centers." There are dozens of members who have expressed an interest in becoming a mentor, and they will be contacted as the roll-out continues. But success breeds success. By starting small and conquering the inevitable hurdles of any new endeavor, we hope to avoid problems that would occur by trying to accomplish too much too quickly.

We'll keep you posted as the program moves ahead.

News briefs

The New England Chapter of the American Liver Foundation recently published the agenda for its 1996 educational series. Held at a variety of locations, these meetings are open to the public and cover many topics of interest to those who want to learn more about liver diseases. For a copy of the schedule, contact them at 617-527-5600 or 800-298-6766.
As you hang your new calendars, why not reserve a few dates for TRIO New England? Last year we had a booth at four Waterfront Festivals, and we plan to do it again this year. We need volunteers to staff the booths in Hyannis (May 11 and 12), Salem (May 25, 26, 27), Gloucester (August 17 and 18), and Newburyport (September 1 and 2). These fairs (and others we attend throughout the year) are a good way to get the message that transplantation works to the general public--and they're a lot of fun too.
The Pitching Pennies for TRIO campaign continues into 1996. This is an affordable way for everyone to contribute to the chapter's support, and get family and friends involved too. Last year we raised about $1000 this way, which went a long way in helping us pay for office supplies.

Donor party planned

by Kenna Sullivan

Once again this April, the New England Organ Bank and TRIO New England will hold a reception to honor donor families. And once again TRIO is preparing a booklet to be presented to donor families--filled with messages expressing what it has meant to you and your families to have received the Gift of Life.

I need letters, poems, etc. from you, the recipients, in order to fill this booklet to capacity. Send your letters to me at the TRIO office. (Please do not use any identifying information, as it will be edited out.) Your contribution is valuable, so don't put it off. Thanks.

In memory of . . .

Making a contribution in someone's memory supports TRIO New England's mission to educate, support, and advocate for patients in New England. Memorial gifts are the highest tribute you can give to the memory of a deceased relative or friend. Knowing that your gift will help others can be a source of comfort and inspiration.

Memorial gifts have been made recently in memory of: Joseph Bagshaw, Priscilla Breckinridge, Susan MacLaughlin, Renee Miceli, and Richard Weber.

In honor of . . .

Donations may also be made in honor of an individual's birthday, wedding anniversary, or other special event. Your generous support ensures that the important work of TRIO New England can continue.

Gifts have recently been received in honor of the following individuals: Joan Abrams, Joyce Nadeau, and Michael Shapiro.

Upcoming events

Chapter meetings are held at 7:30 p.m. at the Lahey Clinic in Burlington, MA. (Check at the front desk for meeting room.)

January 25. "Advanced Directives." Brian Ahearn, Esq. will explain the benefits of living wills and durable powers of attorney.

February 22. "Xenotransplantation." David Sachs, M.D., Director of the Transplantation Biology Research Center at Massachusetts General Hospital, will discuss the latest developments in species-to-species transplantation.

March 28. "Transplant Ethics." Michael Shapiro, M.D., Chief of Transplantation at Beth Israel and a member of the UNOS Ethics Committee, will discuss the generic ethical issues involved in transplantation.

SATELLITE GROUPS:

The Boston group meets at 12:00 noon on the second Sunday of each month at Massachusetts General Hospital in the Walcott Room of the Wang Ambulatory Care Center. For more information, call Joe Ferreira at 617-491-0819.

The Maine group meets at 7:00 p.m. on the first Wednesday of each month at Maine Medical Center in the Dana Education Center. For more information, see the article on page 1.

OTHER EVENTS:

February 7. "Liver Transplantation." Sponsored by American Liver Foundation, this seminar will be conducted by Roger Jenkins, M.D., Deaconess Hospital. Sheraton Tara Hotel, Newton, MA 7:00 p.m.

February 11. "Gift of Life." Sponsored by the New England chapter of the American Liver Foundation, this annual celebration honors transplant recipients, their families, physicians, and support staff. It is open to all. Sheraton Tara Hotel, Newton, MA, 2:00 pm. To register, call 617-527-5600.

February 29. "Leap Year Comedy Party." Dinner and a night of comedy to support the National Kidney Foundation. Nick's Comedy Stop, Thursday, February 29, $15/person, $25/couple. For reservations, call Sandy Philips at 617-326-7225.

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