Last modified: 11 May 2000
This month's ORGANized has a slightly different look, as we experiment with new ways to keep you informed and interested.
One innovation is the prominent placement of the upcoming chapter meeting notice. That's because although membership continues to rise, meeting attendance has actually dropped off. We want to make sure it isn't because you don't know the date. Other upcoming events will continue to be reported in other areas of the newsletter, so don't forget to look for them.
We also want to report on a recent membership survey we took. We were encouraged by the positive feedback we received, almost across the board. We got some good suggestions for topics you would like to have covered at a chapter meeting, and have taken those suggestions into account when planning our current schedule. The bad news is that we didn't hear from the majority of our membership. There was a computer glitch that month that meant that not everyone received the survey, and maybe that accounts for the poor return. But keep in mind that the officers and directors of the chapter want to hear from you, whether it is in response to a survey or an unsolicited phone call or note. That's the only way we can be responsive to your needs.
Read on to get up-to-date on the latest events in the chapter.
Last year, I was elected vice president of TRIO New England. I was excited to become an officer of the largest TRIO chapter and to have the opportunity to work with Jim Brown, president, and Marty Smith, director, to move TRIO New England forward.
In late January, Jim Brown resigned as president for personal reasons; it was with extreme regret that the chapter accepted his resignation. Jim's contributions to TRIO have been significant, and he will continue to be an active member. As a result of his resignation, I was elevated to the office of president.
These have been tough times for the chapter as we recently lost John Cederstrom, treasurer and core member of our organization. John's wit and dedication will be sorely missed at our chapter meetings and in our office. Jim Tynan, assistant treasurer, was named to complete the term of treasurer. Jim, an active member since 1992, has always been willing to step in when needed.
As your president, I pledge to work hard to achieve our immediate goals of continuing our outreach in the areas of awareness, support, education, and advocacy through our office in Wakefield. I also pledge to work with Marty, the officers, and members to take our chapter to the next level. Much has been accomplished in the last five years, but much work needs to be done.
TRIO New England wants to work closely and actively with all the transplant-related organizations in New England to ensure all those waiting for a life-saving or sustaining transplant get their chance in an equitable manner. We want more donor families and living donors to become members and work hand-in-hand with transplant recipients to promote organ and tissue donor awareness. We want to make sure that transplant candidates get the support and information they need to make it through the transplant experience. TRIO New England joins with TRIO chapters around the country, through our international headquarters, to work toward the goal of ensuring that individuals who are in the greatest need of a lifesaving or sustaining organ or tissue transplant receive it in an equitable manner, no matter which transplant center or what part of the country they are in and no matter what their ethnicity is.
To achieve these goals, we need a stable funding base and group of volunteers to make it happen. We are actively working on planning. We need your help.
Volunteers are needed to assist in many areas, such as working on or initiating new donor awareness, support, and education projects and helping raise vitally needed funds to keep our office and projects functioning. There is much work to be done. For example, National Organ and Tissue Donor Awareness Week is coming up fast in April. We are working on some job descriptions that will outline specific needs that volunteers can fill. If you want more information, please call Marty in the office.
Finally, if you have not been to a chapter meeting recently, please come on out and reacquaint yourself with TRIO New England. We are adding a business section to the meeting format which will provide you with an update on chapter activities and news from TRIO headquarters in Washington. If you are not in the Boston area, call our office and ask about meeting locations in our 5-state area. I look forward to talking with you at our next meeting.
February 27
Richard Freeman, M.D., transplant surgeon at New England Medical Center and member of UNOS' Liver and Intestinal Organ Transplantation Committee, will discuss new policies for liver allocation as established by UNOS. This has been a hot topic over the last several months, and there has been a lot of miscom-munication about the changes, both proposed and implemented. Dr. Freeman will fill you in on the real story, and its likely impact on patients.
March 20
Peggy Huddleston, author of the book Prepare for Surgery, Heal Faster, will explain how to use mind-body techniques to enhance healing as you prepare for and go through surgery. While of obvious interest to transplant patients, this topic applies to any and all types of surgery, so feel free to invite anyone you know who may be facing some kind of surgery.
Ed. Note: This profile originally appeared in the October '94 issue of ORGANized. We've updated it and are reprinting it in fond memory of John Cederstrom.
John Cederstrom, who was serving his second term as treasurer of TRIO New England when he died, grew up in Pittsfield, MA. As a young man, John was never ill and always full of energy. For over 30 years, he worked for the Boy Scouts of America as a district executive. His duties took him to Maine, the Finger Lakes region of New York, and all over Massachusetts until he retired in 1990.
In February 1991, John was diagnosed with a rare liver disease, primary biliary cirrhosis, and in July of that year he was placed on the waiting list for a new liver. Eighteen months later, John had a successful liver transplant at Massachusetts General Hospital. While recovering from surgery, he noticed a flyer from an international transplant organization that was starting a New England chapter. John called Marty Smith, and the rest is history.
In addition to being dedicated to TRIO, John was very involved with the Berkshire Council of Churches and the Transplant Support Group of Upstate New York. He was an active Mason, a deacon at his church, and the treasurer of his condo association.
A strong advocate of organ donation, he was a regular participant in health fairs and school workshops and a frequent speaker to blood donor and civic groups. John was also the brains behind our chapter's Thanksgiving cards to donor families, which we carry out in conjunction with the New England Organ Bank.
The chapter will miss John's efforts on our behalf, as we will miss his upbeat outlook on life.
The ideas are simple, flexible, and useful. Topics range from giving comfort to things you can bring to the hospital and activities you can plan to do with your ill loved one. There is even a chapter on taking care of yourself, a lesson that many caregivers need to learn.
The book was written by Linda Briener Milstein and is published by Penguin Books. It is available at major bookstores (ISBN 0 14 02.3538 8) for $6.95 or can be borrowed from the office.
Still in the single digits but getting up there are these members: Gordon Estes (heart, NEMC, 8 years); Jeannette Treworgy (liver, NEMC, 7 years); Deborah Hall (kidney, Maine Medical, 6 years); Allan Afrow (kidney, MGH, 5 years); Kenneth Hadley (liver, Children's, 3 years); Jerome Fishbein (kidney, MGH, 3 years); and Suzi Holmes (liver, NEDH, 3 years).
Congratulations to all!
It's a daunting task. What do you say to a stranger who has given you a new life? There are no adequate words, right? Actually, it isn't as hard as you think. No matter how much writer's block you are experiencing, all you really need to say is thanks. If you think a simply expressed thank you doesn't go far enough, go to the local card shop and look at their thank you notes for ideas on "dressing up" your message. Or buy one of those cards and add a personal thought to it. If you do no more than that, you will have done a good thing for a special person or family.
But suppose you want to say more? That's up to you, but here are some suggestions about the kind of information that might be of interest to the donor family.
Transplant professionals also recommend that you be sensitive about religious comments since you don't know the religious background of the donor family. Finally, keep your letter anonymous! Confidentiality is required. Sign your first name only and omit your address, phone number, or any other identifying information.
Once you've written your letter, what do you do next? Put it in an unsealed envelope. Then, on a separate piece of paper, write your full name, phone number, and the date of your transplant. Send both items to the Donor Family Services Representative at the organ procurement organization that handled your transplant. For most readers, that would be Pam Albert at the New England Organ Bank, One Gateway Center, Newton, MA 02158.
The OPO will review your card or letter to ensure that you kept yourself anonymous and will then notify the donor family that it has received a letter for them. From then on, what happens is up to the donor family. Some may not be ready to receive such mail, in which case the OPO will hold it for them. Others may be eager not only to receive it but to write a response. The majority fall somewhere in between.
Whatever happens with your letter, you will never regret writing it. Even if the family chooses not to read it, at least they will know that someone cared enough to write.
One last bit of advice: don't think it is too late just because you had your transplant a long time ago. We hope that dispenses with the last of your excuses. If you have never written to your donor family, do it now. If you have written, maybe it's time to give them an update.
If you still aren't sure what to say, you're making it too complicated. Keep it simple, keep it sincere, and get it done. Your donor family deserves it.
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