ORGANized

Speak up!

A new slate of officers is looking ahead and formulating its plans. It won't be long before we'll be greeting a new year. So now is the time to share your thoughts with us. Enclosed is a questionnaire that asks some specific questions about you and about how TRIO New England is doing at meeting your needs. Don't feel you have to answer every question and don't limit yourself to the topics addressed in the questionnaire. Tell us what's on your mind and give us your ideas about how we can become a more effective organization.

And to the professionals who are reading this newsletter: we want to hear from you as well. How do you think we can serve the transplant community more effectively?

Once we have a chance to "tally" the results, we'll report back to you on what we learn.

National Donor Sabbath

The Division of Transplantation (DOT) and the Association of Organ Procurement Organizations have designated November 15-17 as the first National Donor Sabbath. DOT designated this weekend with the hope that it will become an annual event during the Thanksgiving season.

All religious communities throughout the country are encouraged to participate, and the three-day week-end should cover the Sabbath for most religions.

You can help make the Donor Sabbath a success by contacting your religious leaders (today!) and encouraging them to participate in one or more of the following ways:

• Deliver sermons on donation
• Invite a recipient, candidate or donor family member, or healthcare professional from within their congregation to speak during their services
• Include donation information in their bulletins
• Place donation information in vestibules
• Include donation information in education classes for adults and children

To make this project easier for you and for the clergy, the organizers have prepared a variety of materials. For starters, the TRIO New England office has sample letters you can use when writing to your clergyman: one from the perspective of a recipient, one from a donor family, and one from a candidate. (Special thanks to the California Transplant Donor Network for the sample letters.) These letters explain the National Donor Sabbath, the significance of organ donation to you, and the urgent need to increase organ donation rates. You can use these sample letters "as is" or edit them to make them more personal. For a copy of a sample letter, call the office and we'll mail or fax it to you right away.

For the clergy, DOT has prepared a packet of information, including a sample sermon, that is available through the New England Organ Bank. The NEOB will also provide bulletin inserts or informational brochures and answer any questions that arise. Contact Kenna Sullivan, LICSW, at the New England Organ Bank (617-244-8000) for this material.

Your participation in this project is important to its success. Please take an active role by contacting your clergyman and other religious leaders in your community no later than October 15. And remember, for the purpose of this program "clergy" can include chaplains for firefighters, military, police, hospitals and hospice programs; seminarians; campus ministry; parochial school teachers; parish nurses; hospice social workers, religious educators; clinical pastoral educators; religious publications; church publications; and clergy organizations.

Marcia's corner

• Sally Johnson, our recently elected chapter secretary, is also the Sunshine Fund chairperson. She'll be happy to send cards to celebrate a transplant, wish a hospitalized member a speedy recovery, offer condolences for a loss, or congratulations for an achievement. Contact her at the office if you know a member who needs some cheering up or a pat on the back for a job well done.
• Members and friends wishing to make a donation to TRIO in celebration of a special occasion or in memory of a loved one can also contact Sally Johnson at the TRIO New England office.
• Lifelines, the national TRIO newsletter, is asking members for recipient stories or articles by donor families to be published on a continuing basis. If you have a story you'd like to share, send it to TRIO/Lifelines, 100 16th Street, NW, Suite 102, Washington, D.C. 20036-5705.
• The National Kidney Foundation is establishing a TransAction Council. The new council will provide recipients and their supporters with the necessary information and resources to improve their quality of life through education, fitness, research, and programs. Membership is free and is open to anyone who has received any type of organ transplant. We're waiting for a package from the NKF and will pass on further information plus a telephone number and address soon.

Milestones

Hats off to Edmond Metro (kidney, B&W), who was transplanted sixteen years ago this month!

Others celebrating this month include: Sister Agnes Clare, S.P. (heart, MGH); Henry Tobyne (heart, MGH); Barbara Gardner (liver, MGH); and Jean Quinn (kidney, MGH) who are all celebrating seven-year anniversaries.

Phyllis Ware (kidney, Medical Center Hospital of Vermont) is celebrating her sixth anniversary and Dorothy Gambas (liver, NEDH) is celebrating her fifth.

Raymond Comtois (heart, MGH), Mary Lorente (liver, NEMC) and Sally Johnson (liver, MGH) are marking four-year anniversaries while Harold Johnson (kidney, Tampa), A. Peter Davis, DMD (kidney, B&W), Leo Smith (kidney, MMC), Bruce Heywood (double-lung, Barnes Hospital, St. Louis), and Margot Keiper (kidney, MGH) have reached their two-year anniversaries.

Best wishes and good health to all of you!

Reference corner

The Gift of LIFE by Edna Hoover. This is a mother's story about her son's kidney problems, dialysis treatments, and two kidney transplants. She wrote it to let others "look behind the curtains in the hospital, and see the frustrations and decisions" the family was faced with. (Order from Wilmer and Edna Hoover, 2862 Harvest Road, Elizabethtown, PA 17022. $5.95 plus $1.50 for shipping and handling.)

Liver Transplant: Life Renewed and Abundant by JoAnn Cirillo. This is the author's personal account of her transplant at the age of 43 and is written "primarily as encouragement for those waiting for or going through an organ transplant." (Order from Fairway Press, P.O. Box 4503, Lima, OH. $9.95 per copy plus $3.50 for shipping and handling.)

Member news

• Karen Couture, lung recipient, has decided to stay in Florida where she received her transplant. She continues to do wellÄin fact, has started a new job! We wish her the best.
• Dick Ficociello, lung recipient, underwent lung reduction surgery at Brigham and Women's Hospital early this month. Dick, who has put up a really tough fight against his illness, reports that the surgery was a success and he hopes to be home soon.
• Frannie Cartier was hospitalized recently, but we are happy to say she is now home and feeling much better.
• Spencer Bean, son of member Sharon Bearor, is home from the hospital. Spencer received a partial lung from both his mother, Sharon, and his aunt, Jean Bearor. Spencer came home from Mass General on Sept. 5. He is doing well, with bi-weekly visits back to Boston. He is off oxygen and we wish him a continued good recovery.
• David Boocock, kidney recipient, recently passed his boards, which means he is now a registered nurse. Congratulations, David, and best wishes for a successful nursing career.
• If you live in Massachusetts, it was hard to miss the highly publicized series of articles in The Boston Globe entitled "Rendevous with Death." Written by noted Globe columnist Jack Thomas, this series of articles tells the story of TRIO New England founder and director Marty Smith, from his horrific experiences in Vietnam, through the death-sentence of liver disease, to today where he celebrates life as a six-year survivor of a liver transplant. This is a truly moving story in which Marty bears his soul in a way that few of us would have the courage to do; I hope you all had a chance to read it.
• Jack Carlier, heart recipient, has been a travelin' man recently. He went to Salt Lake City to participate in the transplant games and then traveled to Washington, D.C. to speak with legislators about issues important to transplant patients.

Home from Utah

For Team Maine, Anne Knights (heart) won three gold medals and Paul Cox (liver) won a bronze medal. Ruth Clark, who has won 31 medals at previous games, was unable to compete but was the number one supporter of the Maine team.

For Team Massachusetts and Rhode Island, TRIO members brought home 23 medals. The medalists were:

• Judy Bartlett (gold medal, badminton)
• Valerie Cook (gold medal, 5K road race; gold medal 100 M track; silver, softball throw)
• Susan Drapeau (gold, racquetball; silver, golf)
• Jackie Dufresne (gold, golf)
• Bruce Jay (4 gold, swimming)
• Dottie Lessard (silver, long jump)
• Ken Lifton (bronze, race walking)
• Shawn Paul (2 silver, swimming)
• Dan Schaffer (bronze, cycling)
• Marty Smith (gold, race walking; bronze, swimming)
• Randy Safford (gold, race walking)
• Vanessa Underwood (silver, racquetball; bronze, swimming; gold, cycling)
• Jen Vellone (silver, badminton)

Transplant symposium

The symposium is free and open to all. To register, contact William Molloy, ACSW, c/o NKFMA/RI, Inc., 1865 Post Road, Suite 108, Warwick, RI 02886. For more information, call 401-738-4400.

News briefs

• Dr. Richard Freeman was supposed to address the September meeting at Lahey Clinic to enlighten us about the proposed changes in liver allocation procedures. Unfortunately, the UNOS committee that is proposing the changes called a meeting for the same day. We promise to reschedule Dr. Freeman for another meeting. (In related news, TRIO New England has submitted its comments about the proposed changes to UNOS, and director Marty Smith plans to attend the committee meeting this month too.)

• The New England chapter of the American Liver Foundation has announced its fall/spring educational series. For a copy of their schedule, call them at 617-527-5600 or 800-298-6766.

• In July, we had a little flurry of excitement on the status of the Donor Awareness postage stamp. There were reports that the committee was finally going to vote on it, and there was optimism that it would be approved. Thanks to the efforts of many, including some TRIO New England members, several members of congress contacted the Citizens Stamp Advisory Committee to show their support.

  But (you knew there was a "but" coming, didn't you?) it wasn't meant to be this time. It is not clear whether the committee actually voted on this particular stamp, but we do know that it has selected its subjects for 1997 and 1998 and Donor Awareness is not among them.

  Continue to show your supportÄ next year when the committee selects the subjects for 1999, we'll be there again. Sooner or later they'll figure out we're not giving up and they'll give in. (If you want more information about the stamp and how you can show your support, call the office.)

• Some of you may have heard the news that UMass Medical Center in Worcester has announced its desire to add liver and heart transplant programs to the list of services it offers. TRIO New England has urged the Massachusetts Department of Public Health, which must approve the additional services, to carefully consider all the ramifications of the proposed new programs. Jim Brown, chapter president, has been invited by the Commissioner of Public Health to attend an upcoming hearing on the matter. We'll keep you informed as the hearing process unfolds.

Upcoming events

Lahey Clinic
October 24. Richard Rohrer, MD, Chief of Transplant Surgery at New England Medical Center and UNOS Regional Councillor, will give an overview of UNOS, discuss regional issues, and answer questions.

Maine Medical Center
October 2. A representative of Blue Cross/Blue Shield will discuss health insurance and managed care.

OTHER MEETINGS

In addition to the educational/support series described above, TRIO New England sponsors meetings at the following locations:

Massachusetts General Hospital. 12:00 noon on the second Sunday of each month in the Harris Room of the Bigelow Building (10th floor, Room 1002). For more information, call Joe Ferreira at 617-491-0819.

South County Hospital, Wakefield, RI. 7:00 p.m. on the second Wednesday of the month. For more information, call Florence Browning at 401-539-7606.

Fanny Allen Hospital, Board Room, Colchester, VT October 3, 7:00 p.m. NOTE NEW LOCATION FOR THIS MEETING. For more information, call Nancy or Joe Bell at 802-524-7318.

OTHER EVENTS

Congressional Field Hearing on Organ Allocation, September 30, Harvard Medical School.

Transplant Symposium, October 5, Rhode Island Hospital

More information

Martin Smith
TRIO New England
Lakeside Office Park
607 North Avenue, Door 14
Wakefield, MA 01880
Phone: 617-224-1270
Fax: 617-224-1929
email: BYGJ31A@prodigy.com

 

Last modified: 11 May 2000