ORGANized

Vol. 6, No. 4, April 1997 . . . A publication of the New England chapter of TRIO

In this month's issue, we are introducing a new column, "The Cheshire Cat." The author doesn't want to be identified, but she tells you something about herself in her inaugural column. Her style is light, and we're sure you will agree that her writing is a great addition to ORGANized. This is a good time to remind you that we welcome contributions from all of you. Don't be shy; just send us your input or your ideas.

A quick glance at the calendar points out that National Organ and Tissue Donor Awareness Week is upon us! We know that the biggest problem in the field of transplantation is the lack of donor organs. We also know that one of the keys to solving that problem is increased public awareness. Who better to work at solving the problem than TRIO members? Transplant candidates, recipients, and donor families are truly effective spokespeople for transplantation. In the eyes of the public, we have none of the ulterior motives often attributed to professionals speaking on behalf of organ donation. And yet we have so much more to gain! So get to work and then drop us a line telling us about how you celebrated NOTDAW. Send your cards or letters Harry I'Anson, 5 Gristone Road, Chelmsford, MA 01824. Then you can say that you contributed to promoting organ donation and to the newsletter!

Take note!

These meetings will take place at 7:30 p.m., Lahey Clinic, Burlington, MA, and are open to all.

April 24 This meeting will be an open forum. There will be no formal speaker, but you will have an opportunity to meet the officers, learn about upcoming activities, hear a treasurer's report. In addition, you are invited to share your thoughts and ideas and get acquainted with other members, so make a special effort to be there.

Early arrivers (6:30 p.m.) will have an opportunity to hear Michael Malone, M.D., transplant surgeon at Lahey-Hitchcock, speak on transplantation (part of Lahey's celebration of NOTDAW.)

May 22 Owen Surman, M.D., psychiatrist at Massachusetts General Hospital, will discuss the psychological impact of transplantation on patients and families. This is a subject many members have asked us to address, and a meeting we are sure you don't want to miss.

Preparing for surgery

At the March meeting, the featured speaker was Peggy Huddleston, MTS, author of the book Prepare for Surgery, Heal Faster. Ms. Huddleston is currently a co-principal investigator of the research project, Patient-Initiated Techniques to Enhance Surgical Outcomes and a facilitator at workshops for pre-surgical patients.

Her philosophy is that taking the fear away from surgery-by using simple mind-body techniques-reduces the amount of pain medication needed after surgery and shortens hospital stays. There are five steps involved is Ms. Huddleston's approach to preparing for surgery:

Get deeply relaxed. One way to do this is to spend some quiet time each day thinking of a person or pet who is easy to love and then recalling a specific time when you felt a great deal of love.
Visualize your healing. Think about the outcome you want and the activities you can enjoy after surgery.
Create a support group. Ask friends to think about you with love a half-hour before surgery. (Ms. Huddleston refers to this as "surrounding yourself in a blanket of love.")
Prepare healing statements. "Healing statements" are comments you want read to you during surgery. Although you may not remember them, your mind will hear them and respond to them.
Meet with your anesthesiologist. This is the person who will read your healing statements during surgery, so you need to explain your wishes.

There is medical evidence that relaxation can help surgical patients, and Ms. Huddleston related several "success" stories from those who used her techniques.

In fact, she brought with her a living testimonial to the value of her technique. Richard and Burchell Waring deserve an article of their own. Husband and wife, both have recently donated kidneys to their brothers. What are the odds of that happening?

Both Richard and Burchell are young and healthy. Both are thrilled that they were able to help their brothers in such a meaningful way. What they do not have in common is the same type of post-surgical experience.

Richard was the first donor. He reports that the first couple of weeks after surgery were not good. He spent them on the couch, feeling very ill. Burchell, on the other hand, breezed through the recovery. The difference, they believe, is that Burchell followed Ms. Huddleston's program (as did her brother, the recipient).

If you are expecting to need surgery in the future, you might want to find out more about this program. A copy of the book and the accompanying relaxation tape are available in the chapter library or you can purchase your own by contacting Angel River Press at 617-497-9431.

Member news

Jeff Wise is back at New England Deaconess Hospital, awaiting a second liver transplant. We bet he'd love to hear from you, so drop him a card.
Linda Fall, heart recipient, was recently honored by the Joslin Diabetes Center for successfully managing her diabetes for over 25 years. The honor, which was accompanied by a certificate and bronze medallion, was presented by Kenneth Quickel, M.D., President of the Center. That's the good news.
Now for the bad news. In what can only be described as a very eventful month, Linda ended up with her leg in a cast after falling and breaking her kneecap (ouch!). By the time you read this, Linda, it should only be three more weeks 'til the cast comes off.
Dick Ficociello is home again, and busily scurrying around trying to line things up for NOTDAW.
Bernard Hoar, liver recipient, was recently spotted running around the Billerica Health and Recreation Fair, which he helped to organize. He made time to stop by the TRIO table to lend his support.
The volunteers in the office are pleased to add Sandy McNaughton to their ranks. Welcome aboard, Sandy.
Several TRIO members from Rhode Island were among the honored guests at South County Hospital Foundation's eighth annual meeting. They included Judy Bartlett, Florence Browning, Russ Fontaine, Donna Freeman, and Ed Slater. The guest speaker was Jim Taricani, heart recipient and news reporter, whose topic was "Getting a Second Chance."

Milestones

April is a BIG anniversary month for the chapter, not only in quantity but in the number of years after transplant. Heading the list is Maryrose Mirick (kidney, NEMC), who is celebrating her 14th transplant anniversary. She is closely followed by William Molloy (kidney, B&W), who is celebrating his twelfth anniversary and Arnold Friedmann (liver, MGH), who is celebrating his eleventh anniversary. Then there are several 8-year anniversaries: Mary Robinson and Bob Kemp both had heart transplants at B&W in 1989, the same year Bill Gately (liver, NEDH) and Marc Dewey (bone marrow, Milwaukee) had their transplants.

Sid Cohen and Earl Cash had transplants (kidneys, University Hospital) five 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 four-year anniversaries.

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

And the freshman class includes Robin Silverman (liver, NEMC), Al Dinwoodie (kidney, NEDH) and Jeff Wise (liver, NEDH).

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

Marcia's corner

by Marcia Bujan

NOTDAW is a perfect time to stop and reflect on why we're part of the TRIO family. My husband David and I joined to find comfort and hope when we were very vulnerable. We found both and much more. We found a large group of people joined together by common threads, helping one another cope, truly caring about each other's welfare: patients, significant others, and those who have joined out of good will. Educating the public has had a tremendous impact on the New England community, as has the support that is offered to any and all who need it. We're a very large and diverse family, and we do not always agree on every issue, but as a family, we're always willing to work together for the greater good-to promote organ donation. David and I have been truly fortunate to discover our TRIO family and hope that each of you feels as we do.
If you're tired of telephone solicitors calling you at home, send your name, address, and phone number to the "Telephone Preference Service," c/o Direct Marketing Association, Box 9014, Farmingdale, NY 11735. The association will add you to its "no-call" list.
UNOS figures through March 31 show that over 50,000 are waiting for transplants. Even though some represent duplicate listings, the numbers are still staggering. We must keep working to educate the public on the worthiness of organ donation in every way possible. Our lives depend on it.
Did you know that the average American eats 23.6 quarts of ice cream, 11.2 pounds of chocolate, and 11 pounds of cookies each year. Apparently David and I were not included in the survey!!

An appearance from the Cheshire Cat

In Lewis Carroll's Alice in Wonderland, Alice finds herself pondering one of life's deepest questions. The story reads, "Alice was a little startled by seeing the Cheshire Cat sitting on a bough of a tree a few yards off.

The Cat only grinned when it saw Alice. It looked good-natured, she thought; still it had very long claws and a great many teeth, so she felt that it ought to be treated with respect.

'Cheshire-Puss,' Alice began, rather timidly, as she did not at all know whether it would like the name; however, it only grinned a little wider. 'Come, it's pleased so far,' thought Alice, and she went on. 'Would you tell me, please, which way I ought to go from here?'

'That depends a good deal on which way you go,' said the Cat.

'-so long as I get somewhere,' Alice added as an explanation.

'Oh, you're sure to do that,' said the Cat, 'if you only walk long enough.'"

My transplant cardiologist calls me the Cheshire Cat of his practice. We have entertained each other with the concept of heart transplantation twice in the last eight years. For some unknown reason, I suddenly have an upswing in my heart functioning and we start rehabilitating my body to see how strong I can get. Therefore, I am calling this column "The Cheshire Cat." I hope to enlighten myself as well as the members of TRIO with some practical ways to cope with the wait for transplantation, as well as cope after the surgery and get on with living.

As the Cat indicated to Alice, the choice is ours as to the path we wish to pursue. I have committed myself to living one day at a time, or if that is too difficult, one hour at a time. I allot myself 10 minutes to grieve, be depressed and sad-to release all of the negative feelings I need to experience to accept my situation. Then I choose the path of living with the confidence that every day and every experience are there for the taking. I choose to be an upbeat, happy person, and continue to plan for the future at a supersonic speed. My enthusiasm for life is accelerated because I realize how valuable it is.

I challenge you to live each day to the fullest and savor every accomplishment, no matter how small it may be. We are all blessed with HOPE!

News briefs

April is Liver Awareness Month. The New England Chapter of the American Liver Foundation has set up a series of walk-in information and screening sessions throughout the month. While we know the month is almost over, there is still time to take advantage of some of these programs. For more information, call them at 617-527-5600.
Tuesday, May 6, is Nurse's Day. Remember your favorite nurse(s) with a short note or a card. You can't tell them often enough how appreciated they are.
Florida Representative Charles Canady has introduced legislation to remove the time limit for immuno- suppressive medication coverage under Medicare. This coverage, which applies only to kidney recipients, is currently limited to three years. The bill is HR 1061, if you want to ask your reps to support it.
The Annual National Donor Recognition Ceremony was held on Sunday, April 13, in Washington, D.C.
The NEOB and Maine Transplant Program are sponsoring a donor family recognition ceremony in Rockport, Maine. Similar to the ceremonies held previously in Massachusetts and New Hampshire, the event honors families who have donated organs and tissues of deceased family members and provides an opportunity for recipients to say thank you.
A liver transplant program has been added to UMass Medical Center in Worcester, MA, bringing the number of such programs in New England to seven. William Meyers, M.D., will be the program director.
The annual conference, scheduled for Oct 22-25 in Chicago, is being co-chaired by John Butorac, president of the Chicago chapter, and Gary Rouse, president of the Southwest Michigan chapter. The theme has been established: Our Tenth Anniversary: A Decade of Change. Save those dates.
They say there is no such thing as bad publicity, but the April 13 story on 60 Minutes didn't do anything to promote organ donation. The story focused on the protocol of recovering organs from brain-damaged patients whose hearts had stopped rather than from brain-dead patients. (The controversial protocol is followed by a couple of hospitals in Wisconsin and Ohio.) The implications that this protocol may hasten death in patients played into the worst fears of the public. So even though Mike Wallace ended by assuring America that it didn't need to tear up its organ donor cards, that the chances of this happening to them were "almost nil," you can bet that at least the listeners who weren't sure about their position on organ donation were less inclined to sign up. Now you really have your work cut out for you during NOTDAW.

Upcoming events

CHAPTER MEETINGS
TRIO/New England sponsors an educational/support series at the following locations:
Lahey Clinic, Burlington, MA, 7:30 p.m. on the 4th Thursday of the month. (Note: March meeting will be held on 3rd Thursday.)
Maine Medical Center, Portland, Maine, 7:00 p.m. on the first Wednesday of the month in the Dana Education Center, Classroom 2, Maine Medical Center.
TRIO Office, Wakefield, MA, 10:00 am-12:00 pm every Friday. (Call in advance!)
For more information about the above meetings, call the office.
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.
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.
Northwest Medical Center, St. Albans, VT, 7:00 p.m. on the second Thursday of the month. For more information, call Nancy or Joe Bell at 802-524-7318.
Central Vermont Hospital, Montpelier, VT, 7:00 p.m. on the first Thursday of the month. Call Ed Rhodes at 802-524-7318 for more information.
OTHER EVENTS
April 20-26. National Organ and Tissue Donor Awareness Week
May 6. Nurse's Day
June 16. TRIO Golf Classic, South Shore Country Club
July 26. TRIO New England picnic. Two Lights State Park, Cape Elizabeth, ME
October 22-25. TRIO Conference, Chicago, IL

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

This text provided to TransWeb by Ruth I'Anson of TRIO. All rights reserved.
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Last modified: 11 May 2000