ORGANized

Ooooo baby!

Suzi and Billy Holmes also became first-time parents recently. Colin David Holmes, 8.4 lbs, came into the world on April 9. Mom and baby are at home, and everyone is doing just fine.

What makes both these announcements extra special is that Alicia is a liver-kidney recipient and Suzi is a liver recipient. While they aren't the first post-transplant patients to become mothers, they are part of a very small group. Perhaps their happy stories will encourage others to discuss the possibilities with their doctors.

Congratulations to both families, and welcome to our newest (and youngest) members!

Members at work

Letter-Writing. Carolyn Fiore, liver recipient, coordinated a very aggressive awareness campaign that was directed at all the Catholic churches in the Archdiocese of Boston. Carolyn wrote a letter to the 393 pastors in the Archdiocese asking them to participate in the observance of NOTDAW by including an article she wrote in their church bulletins on April 21.

In the article, she outlines the purpose of NOTDAW and describes the steps involved in becoming a donor. She closes with a personal note in which she appeals to the public to normalize and demystify its view of transplantation, and then adds a reminder that the Catholic Church joins the other major religious traditions in endorsing organ donation as the ultimate way of loving one's neighbor.

Since she was in a letter-writing mood, Carolyn next decided to go for more national exposure. She sent both a letter and a TRIO t-shirt to Willard Scott asking him to mention NOTDAW during his segment on the TODAY show.

(Ed. Note: If your church bulletin published information about organ donation, please let us know; if you can, forward a copy to the office so Carolyn can see the results of her efforts.)

Waking Up Wakefield. Laurie Biel, a transplant nurse at MGH, organized the Organ Donor Awareness Committee of Wakefield and chaired them through a very ambitious agenda.

From speaking to local civic groups to contacting the local media and church groups, this committee made sure everyone knew what was going on--and there was plenty happening during the week of April 21-27.

Green ribbons on the lamp posts in downtown Wakefield, a book display at the library, window displays in the local drug stores, posters in the post office and other locations throughout town, booths where committee members distributed donor cards and green ribbons and answered questions . . . By the end of the week, Wakefield and surrounding towns were pretty aware.

Fundraising

Dorothy Lourie, kidney recipient, is organizing an auction to benefit the National Kidney Foundation of Massachusetts and Rhode Island. Proceeds will help send needy children on dialysis to summer camp and will also help fund Team Massachusetts and Rhode Island's trip to the Transplant Olympics this summer. Guest auctioneers are Natalie Jacobson, Chet Curtis, and Tommy Heinsohn, who will definitely turn this fundraiser into a special event.

According to Dorothy, auction items will be in all price ranges, from under $10 to over a $1000, so there is something for everyone. Sports memorabilia, gift certificates to restaurants, week-end getaways, and a cruise to Bermuda are among the donated it ems up for auction.

Scheduled for May 10 at Lombardi's in Randolph, MA, the evening will start with a silent auction from 6:30-7:30. Hot and cold hors d'oeuvres will be served throughout the evening.

Food, celebrities, the chance for a bargain, and the opportunity to contribute to a good cause, all for the low ticket price of $15 in advance, $18 at the door. For ticket information, call Dorothy Lourie at 617-444-5177.

Lights, camera, action

David and Marcia Bujan recently taped an interview at Anna Jaques Hospital in Newburyport, MA, in conjunction with the Manchester, NH, office of the New England Organ Bank. The interview focused on Marcia's kidney-pancreas transplant, David's life as a significant other, and how organ donation has changed their lives. It was aired on Newburyport's local cable channel the week of April 15.

Local cable stations are usually very amenable to this type of programming, and it's a wonderful way to educate the people living in your area.

Meanwhile, back at the ranch

In March, we moved into a new office and asked for volunteers to help organize and staff the place. Stepping up to the plate in a big way are Sally Johnson (liver recipient), Gordon Estes (heart recipient), Michael O'Rourke (liver recipient), and Frannie Cartier. And of course chapter treasurer John Cederstrom (liver recipient) continues to make at least a weekly trip from western Mass to eastern Mass to keep the books straight, answer phones, and generally help manage TRIO NE. (We can still use you, though, especially if you want to help answer the phones for a shift.)

We also asked for help furnishing the office, and we are very grateful to the New England Organ Bank for almost single-handedly solving that problem. Bookcases, file cabinets, a desk, partitions . . . and they even delivered! We really appreciate the support.

Small changes . . . large returns

According to a recent study by The Partnership for Organ Donation at 69 hospitals in four geographic regions, organ donation occurred among only 33 percent of potential donors. In 10% of the reviewed cases, potential donors were not identified. In 17% of the cases, families were not asked about donation, while 36% of the families denied consent.

This study indicates that there are two poorly performing process areas that are wholly contained within the hospital setting: (1) asking potential donors to donate and (2) identifying and appropriately declaring potential donors as brain dead. Perhaps the "biggest bang for the buck" in increasing the size of the donor pool can be found by improving those two areas, which are smaller in scope, more self-contained, and cross the fewest boundaries.

Assuming only a 50% success rate in addressing these two issues, we would realize an increase of 1000 organ donors (based on 1994 donor pool size of 5100).

We can have all the signed donor cards in the world, but if we can't appropriately identify or declare potential donors as being brain dead, or we don't even ask potential donor families to donate, the process will never yield the potential number of recovered organs. Concentrating on these two process areas should be seen as the first effort in a series. Each effort is focused, measurable, and achievable.

The next steps are to:

1. Identify a single point of focus to manage, coordinate, facilitate, and monitor the design, development, and implementation of the two process areas.
2. Identify potential institutions to be participants in the project.
3. Develop a project plan and initial budget.
4. Acquire funding for the project.

Ed Note: This article was condensed from a white paper prepared by Jeff Wise. For a copy of the complete paper, please contact the office.

Milestones

Sid Cohen and Earl Cash, Jr. had transplants (kidneys, University Hospital) four years ago this month, as did Valerie Cook (liver, Children's-Univ. Chicago). Judith Buckroth (kidney, UMMC), Robert Coyne (liver, NEMC), and David Keough (kidney, B&W) are all celebrating three-year anniversaries.

James Walsh (liver, NEDH), Paul Remy (kidney, NEDH), and Patricia St. Onge (heart, B&W) are two years post-transplant. Finally, one-year honors go to Courtney Ridd (liver, MGH), Dick Ficociello (lung, B&W), D. Keith Plaster (heart, B&W), Anna Devlin (lung, B&W), and Henry Yokel (liver, MGH).

Best wishes for a happy, healthy spring to all of you!

Marcia's corner

• Listed below are the top 10 complaints that patients have about doctors, borrowed from The Eagle Tribune. Do you agree?
  1. Patronizing attitudes
  2. Insensitivity
  3. Not listening
  4. Lack of time spent with patient
  5. Unclear explanations
  6. Arrogance
  7. Close-mindedness to untraditional approaches
  8. Lack of caring about the whole person
  9. Money orientation
  10. Discomfort relaying bad news
• Try this new cure for hiccups: pinch the back of your shoulder until it hurts. It works because the nerves in your shoulder and the nerves that control your diaphragm have the same roots.
• Greetings!! Americans send 2.7 billion Christmas cards each year, 1 billion Valentine's day cards, 160 million Easter cards, 150 million Mother's Day cards, and 101 million Father's Day cards.
• People who consume more than 1000 MG of calcium a day may reduce their risk of hypertension by 12% according to one study.
• In a lifetime, the average American spends $89,281 on food. $56,520 is spent eating at home and $32,761 is spent dining out.

News briefs

• People magazine recently ran an unusual and touching story about a living kidney donor and her recipient. The donor, Susan Benner, discovered while arranging a 33rd high school reunion that one of her former classmates, Bennett Scott, was dying of kidney disease. No one in his family was a suitable donor, and time was running out for him.

  Although Susan and Bennett were only acquaintances in school and had not stayed in touch since, Susan did know something about kidney disease, which had taken the life of a man she loved in 1990. To prevent such a tragedy for Bennett's family, Susan donated one of her kidneys to her former classmate. The surgery took place in December, and both are recovering nicely. An inspirational story.

• This year, TRIO's annual conference is scheduled to take place in Nashville, TN, from September 25-28. The theme of the conference will be "Developing Strength Through Common Goals." Mark your calendars now.

• In this month's column, Marcia Bujan mentions Americans' penchant for sending greeting cards. In case you aren't one of those that frequent Hallmark stores, you might not be aware that Monday, May 6, is Nurse's Day. Anyone who has had a transplant ( and many of those waiting for one), as well as their family members, know what important members of the transplant teams the nurses are. If you are in the clinic that day, be sure to acknowledge their contribution; if you aren't, how about writing a note or sending a card to that nurse who has gone out of her (or his) way to help you? It'll probably brighten their day a little.

• July 1996 is election time for TRIO New England. John Cederstrom is organizing a nominating committee for a new slate of officers, who will serve a 2-year term. If you are interested in running for office or have ideas about who would be good candidates, contact John at the office.

• Many of you contribute to the United Way through payroll deductions at work. Did you know that you can request that TRIO New England be the recipient of your donation? Check with your Human Resource office for more information about this option.

News from Maine

Maine members staffed a booth at the Maine Mall on April 20 to promote organ and tissue donation in recognition of NOTDAW. Bruce Heywood coordinated this event, with significant help from Bruce White of the Maine Kidney Transplant program and the New England Organ Bank.

The next meeting is scheduled for 7:00 on May 1. Guest speaker will be Tom Madden, a pharmacist from HMI Pharmaceutical Services, who will talk about transplant medications. Everyone is invited.

News from Rhode Island

The next meeting will be held on Wednesday, May 8, at 7 p.m. at the South County Hospital in Wakefield, RI. For further information, call Florence Browning at 401-539-7606.

News from Vermont

Upcoming events

May 23. NorthEast Organ Procurement Organization. Maria Sadlowski, transplant coordinator for Baystate Medical Center, will talk about ways TRIO members can help OPOs educate the public and advocate for transplantation.

June 27. Social Security Administration. Francine Kollias of SSA will discuss Medicare coverage, how to get it, and how to get off it.

OTHER MEETINGS/

In addition to the educational/support series held at the Lahey Clinic, TRIO New England sponsors meetings at the following locations:

• Massachusetts General Hospital. 12:00 noon on the second Sunday of each month in the Walcott Room of the Wang Ambulatory Care Center. For more information, call Joe Ferreira at 617-491-0819.
• Maine Medical Center, Portland, Maine. 7:00 p.m. on the first Wednesday of each month in the Dana Education Center. For more information, contact the office.
• South County Hospital, Wakefield, RI. 7:00 p.m., May 8 (see "News from Rhode Island" for more info).
• Northwestern Medical Center, St. Albans, VT. 7:00 p.m. May 9 (see "News from Vermont" for more info).

Nurse's Day, May 6.

Celebrity auction to benefit NKF. May 10, 6:30 p.m., Lombardi's, Randolph, MA. For ticket information, call Dorothy Lourie at 617-444-5177.

TRIO Golf Classic. June 17, South Shore Country Club, Hingham, MA.

More information

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

Last modified: 11 May 2000