Last modified: 11 May 2000
Join TRIO - Awareness, Support, Education, Advocacy
TOPIC: HEART TRANSPLANTATION
Speaker: DR. Stephen Boyce
Heart Transplant Surgeon
Washington Hospital Center
Dr. Boyce will show a movie of a heart transplant procedure.
Tuesday, May 16, 1995, 7:00 p.m.
The TRIO Meeting Notice is an official publication of The Nation's Capital Area Chapter of TRIO published monthly to provide members with notices of upcoming Chapter meetings, activities, minutes of Chapter meetings, TRIO news, and any late breaking news. This is YOUR publication. Articles and suggestions are welcomed and should be sent to Newsletter Editor, TRIO - Nation's Capital Area Chapter, P. O. Box 7633, Arlington, VA 22207.
In addition to the dedication at Shady Grove Adventist Hospital and the WRTC Ceremony, our members, separately and collectively, participated during National Organ & Tissue Donor Awareness Week. Many of us wearing Green Ribbon Pins were asked about them. This provided an opportunity to emphasize the need for organ and tissue donation and the importance of discussing your wishes with family members.
Brian Hartford was one of the speakers at the Washington Hospital Center ceremony on Monday, April 17. Claude Brady manned the TRIO display booth with help from Dora Hartford (and Brian), Chick Abeles, and Brian Rothermel. At Walter Reed Army Medical Center, Tuesday, April 18th, Claude Brady & volunteers Earthia Dorsey, Benno Duykers, and Florence Rollwagen were on hand to discuss with the public issues associated with organ & tissue donation.
Jim Dueppen (liver transplant recipient) sent letters to his colleagues at his place of employment. In part, Jim wrote: "Many activities are scheduled throughout the country [during NOTDAW] to thank organ and tissue donors and their families for their generosity for the GIFT OF LIFE, and to heighten public awareness of the tremendous shortage of donor organs for transplantation.
"Six people died yesterday, will die today, and will die tomorrow, because there are not enough organ donors. Three other men and I are alive today because of the generosity of just one organ donor....Our donor provided his heart, liver, kidneys and pancreas; 5 organs to 4 recipients.
"The Nation's Capital Area Chapter of TRIO is sponsoring a donor registration drive this week. TRIO (Transplant Recipients International Organization) promotes awareness, support, education, and advocacy of transplantation issues. I am taking this opportunity to ask you to plan ahead. You really don't need your organs and tissues when you are dead, and the need for them is so great. IF the organs were made available 39,000 people would receive transplants today. They are available, they are just not being donated because family members don't know what to do, and they are in such stress, they can't make such a decision. Discuss this with your families, so all of you are aware of each other's wishes. There is no better gift you can make than to give the Gift of Life to someone who is staring at his own imminent death.
"Sign the attached Donor Card today, carry it with you, and most important, tell your next of kin." ....
On Sunday afternoon, April 23, I attended a service at the Capitol Hill United Methodist Church, arranged by WRTC to honor and thank donor families. I had been uncertain about attending for a number of reasons, but when I learned that my sister (my kidney donor) would be visiting, we both decided that we couldn't miss the opportunity. It was a moving and emotional experience. Over 600 members of donor families were present, as well as a number of recipients. As the service commenced, we were welcomed by Lori Brigham, WRTC Executive Director. The Reverend Jay Morgan Hodges, a donor family member, led us in prayer, and we were addressed by several recipients and other donor family members. Throughout the service, three quilts were on display. Each patch of each quilt had been contributed by a donor family member, and the quilts were assembled and finished by other members. The project will be ongoing as the number of donor families increases.
Toward the end of the service, donor families were called forward one by one to be thanked and given a memento of the occasion. As names were called ("the family of...") an entire row of people would stand, move silently to the middle aisle, and march deliberately to the altar. During this seg- ment, the church remained totally silent except for the calling of family names, which reminded me of the slow tolling of a church bell.
Following the service, a reception was held at which participants could unwind a bit from their emotional afternoon. It has been suggested that next year the Nation's Capital Area Chapter host a reception for donor families on the day or evening preceding the church service. We will be discussing this among ourselves and with WRTC.
At noon on Monday, April 17, the beginning of NOTDAW, a donor garden was dedicated in a very visible and lovely spot in front of the Shady Grove Adventist Hospital. Attendees were welcomed by Mr. Cory Chambers, CEO and then led in prayer by Chaplain Penny Shell. Al Leon welcomed Shady Grove to the family of local transplant centers and presented information about TRIO, WRTC and the need for donors. Then Mr. and Mrs. Arthur King, whose daughter was a donor 11 years ago, related their moving story. A donor remembrance was presented by Suzanne Quesada, kidney- pancreas recipient, followed by the tree dedication and plaque unveiling by Jane Leon. Many thanks to Rick Kolovich, transplant coordinator, for a well-organized and thoughtful ceremony.
On April 2, 1995, I met my donor's parents, Linda and Leonard. Before the meeting, we had exchanged two letters and four telephone calls. Still, I was as nervous as I had ever been. I wanted to be worthy of their generous and courageous act. And, I felt guilty that I was alive and their 16 year old son Travis was dead. It didn't seem fair. I know intellectually that I did not cause their son's death. Nevertheless, I remembered my feelings when the nurse told me there was a heart for me. I was overcome by relief, ecstasy, and deep sorrow at the same time. Relief and ecstasy that I would live, sorrow at the loss a family had suffered. But, my strongest feeling was gratitude to those who had been able to be so generous at the time of what must have been the most awful loss a parent could ever suffer. I wondered if I would be able to do the same were I in their circumstances.
Travis' parents had come to DC from Tennessee for the donor recognition ceremony and we arranged to meet at 5:00 pm on the mezzanine of the Mayflower Hotel. A representative of the Tennessee OPO and WRTC were present. I was accompanied by my wife, three of my four daughters, my two sons-in-law and my 8 month old grandchild. The grandchild I would never have seen but for my donor family's gift of life. It is one of those strange quirks of destiny that my donor's parents had also become first time grandparents last summer and their grandson had been named Zachary, which is the name of my grandson.
Although I felt awkward and anxious, the initial meeting turned out well. My donor's parents were genuinely glad to meet me. They were happy I was doing well. We talked about our lives and even about Travis. My donor's parents spent a long time talking to my daughters and playing and taking videos of Zachary.
After our meeting, we attended a reception for donor families put on by the Division of Transplantation, and then we went to dinner with a group of donor and recipient families. During the dinner, we went around the room and everyone introduced themselves and said a few words about their experience. My daughter Wendy gave a toast with tears streaming down her face thanking Leonard and Linda for saving my life. It was a very emotional time.
Many of us felt as if we had discovered lost members of our families. I think we all realized how precious and how tenuous life is, and how important it is to support each other. I couldn't help feeling that if more people were like the donor families, the world would not be suffering from so many problems caused by petty jealousy, envy, and mindless hatred.
I learned how important it was for donor families to hear from recipients. They have a strong need to know that their gift has indeed helped another. As my donor's parents wrote in one of their letters: "We like to believe that a little bit of Travis lives on in you." I responded: "Not only does a little bit of Travis live on in me, it is what enables me to live." One of my biggest surprises was when a member of another donor family made a special point of coming up to me to thank me for being there and meeting my donor family. I felt that this was the least I could do, but I realized then that donation is a two-way street. The donor family gives life and the recipient helps in some small way to bring some sense to the loss. At least, through the child's or sibling's or spouse's or parent's death another person was saved.
The next day my family and I attended the donor recognition ceremony. We spent the rest of that day and the next with my donor's parents. We will keep in touch. They called me last week to see how I was doing after my hip replacement. We are planning to visit them in Tennessee. Whatever happens next, I will remain in awe of the goodness of spirit and selfless love that allowed these wonderful people to give the gift of life in the midst of their suffering.
The Fairfax County Commission on Tissue Donation and Transplantation, a volunteer commission, has been created to promote awareness of the organ and tissue donation, educate the public about the process, coordinate resources in the community and increase the number of Fairfax County donors. It is believed that this is the first such local Government body dedicated to transplantation awareness and increasing donation consent rates in the nation.
The commission is composed of a representative from all districts in the county, WRTC, UNOS, the Clergy, Virginia Heart Association, a member of the health care community and one at-large representative.
The first monthly meeting of the commission was held on April 25, 1995. Although not all members have been appointed yet, there were a great blend of people in attendance. The commission includes heart, kidney, and kidney/pancreas recipients, a patient on the kidney waiting list, as well as donor and recipient family members.
TRIO is represented with five members. So far the commission also includes two African Americans and two Latino Americans which will give it a good minority perspective.
The Commission's first activity will be to have an information booth at the Fairfax Co. Fair on June 10 and 11. The fair attracts over 100,000 people and will be a great opportunity to increase awareness. If interested in helping out, contact Louis Larkin at WRTC (703) 641-0100. A few appointments to the commission have yet to be made. If you live in Fairfax county and would like to participate, contact your district supervisor.
The 1995 ART SHOW & AUCTION will be held on Thursday, June 1, 1995 at the Georgetown University Conference Center. TRIO - The Nation's Capital Area Chapter and The Transplant Foundation are co-sponsoring this event to benefit our organizations.
Proceeds from this event will support our Chapter activities:
Join us for a fun social evening beginning with a Preview and Hors d'oeuvres at 6:30 p.m. The Heisman Fine Arts Gallery, based in Pennsylvania, will be conducting the live auction starting at 7:30 with original oils, lithographs, serigraphs and graphics by both nationally-known artists, and newer up-and-coming talent. The art is of the highest quality, affordable and includes beautiful custom framing and matting.
Patrons will receive the designated number of tickets to attend the auction as well as prominent recognition in the program. You can support our organizations by:
Your Invitation with Reservation Form is included in this newsletter. For more information, call TRIO at 703-920-TRIO or The Transplant Foundation at 202-298-8384.
We need your support. Plan to attend -- and bring your family and friends.
Medic Alert is a nonprofit organization that sells bracelets and necklaces and offers a 24 hour hot line number that people can call and get information on you based on the ID number they read off of your bracelet. You can enroll in Medic Alert by phone: 1-800-432-5378. You need to give them a credit card number; medical information -- name, telephone number, and address of person or physician to contact in emergency; and bracelet size. You can get a bracelet or a necklace. They cost 35$ for stainless steel, and up to 115$ for silver. For medical information most people specify the organ that was transplanted, any major diseases like diabetes, and any severe allergies. The advantage of the medicalert system is that more information can be given by the hot line than can be engraved on the emblem.
George Washington University Hospital -- Transplant Support Group
Judy
Dietrich
202-676-3838
George Washington University
Kidney/Pancreas/Heart
Support Group
Blair Bartlett - 202-784-3700
Lee Goldman - 202-784-4206
Heart Transplant Foundation
Johns Hopkins University Hospital
Baltimore, MD 703-534-7029
Helping Ourselves to Live (H.OS.T.L.)
Kidney patients also struggling
with the
disease of
alcoholism and substance abuse.
Debbie Hawkins 301-808-0164
Howard University Hospital
Curtis Yeager 202-865-1411
National Capital Friends of the Polycystic
Kidney Disease Foundation
Mary Lamm 703-532-5266
(TRIO) Transplant Recipient International Organization
1735 I St., NW
Wash., DC 20006
202-293-0980 / fax: 202-293-0973
(TRIO) Transplant Recipient International Organization
The Nation's Capital Area Chapter
P.O. Box 7633
Arlington, VA 22207
703-920-TRIO
Walter Reed Army Medical Center
Kidney, Jonni Burke 202-782-6462
Washington Hospital Center
Kidney Transplant Support Group
202-877-6058
WHC Heart Support Group
202-877-6286
Washington Regional Transplant
Consortium
703-641-0100
American Liver Foundation
800-223-0179
Burroughs Wellcome
(Imuran/Zavorax) 1-800-722-9294
National Resources Directory
1-800-238-7828
National Kidney Foundation (NKF)
National Capital Area
202-244-7900
NKF Maryland Division
301-921-7870
N.O.R.D
Sandoz Drug Share Program
1-800-447-6673
The Transplant Foundation
Debbe Hopkins, Executive Director
8002 Discovery Drive, Suite 310
Richmond, VA 23211, 804-285-5115
National, non-profit volunteer
organization providing grants to
post-transplant recipients to offset the costs of immunosuppressive
medication.
Transplant Support Group Directory -- Chronimed Pharmacy
1391Ridgedale Drive
Minnesota, MN 55305
1-800-753-5583
United Network for Organ Sharing (UNOS)
PO Box 13770
Richmond, VA
23225-8700, 1-800-292-9548
Offers resources for transplant patients and recipients regarding financing
transplantation,
organ allocation and immunosuppression, as well as a patient newsletter,
statistical reports on
transplant survival rates and brochures promoting organ donation.
June 1, 1995 Thursday, 6:30 pm
Art Auction co-sponsored by
TRIO-NCAC
The Transplant Foundation
Georgetown University Conference Center
June 11-17, 1995
ONE LAP RACE
Drivers:
Mike Garrett/Linda Cheatham
June 20, 1995
Tuesday 7:00 p.m.
Chapter General Meeting
Walter Reed Army Med Center
Eisenhower Suite
Speaker: Dr. John Swanson
Topic: Kidney Disease
July 15, 1995
Saturday 11:00 a.m.
Annual Chapter Picnic
Fort Hunt Park, Alexandria
August 14-20, 1995
1995 World Transplant Games
Manchester, England
Team USA now being formed.
Registration Deadline: June 15
Call 800-622-9010 for packets.
September 7-9, 1995
TRIO Annual Conference
Boston, Massachusetts
September 28, 1995
Thursday, 7:00 p.m.
Chapter Annual Meeting
Fairfax Hospital
October 17 , 1995
Tuesday, 7:00 p.m.
Chapter General Meeting
Washington Hospital Center
November 11, Saturday
3rd Annual Chartering
Anniversary Dinner
Best Western
Arlington, VA
December 10, 1995
Sunday
5th Annual Holiday Social
Place TBA
Karen Brown moved the group with her talk about consenting to donation when her 19 year old daughter Kristi died in an auto accident in 1987. Don Seeley, who has had two kidney and one pancreas transplants, talked about his experiences and what a tremendous difference transplantation has made on his life.
Other speakers on the panel were Blair Bartlett RN, BSN, CCTC, senior clinical transplant coordinator at Georgetown University Hospital and P.J. Geraghty organ recovery coordinator with WRTC.
The speeches were followed by very good questions from the students and it was a great forum for making them aware of the nonclinical aspects of donation and transplantation.
Cherry Whitney in memory of Hershel Kanovski.
Al and Jane Leon wishing Heather Coxon a rapid recovery.
Margaret Kuh and Judy Harrison each bought a packet of cards.
Congratulations to all TRIO members and friends who celebrate their transplant anniversaries in May.
Brian Rothermel, heart, Fairfax Hospital, 1994
Krista Imhoff, kidney/pancreas, Washington Hospital Center, 1993
Lawrence DeLuca, kidney, Washington Hospital Center, 1992
Douglas Norland, kidney, Washington Hospital Center, 1987
Daryl Hollis, kidney, Hershey Medical Center, 1992
Christine Wilson, kidney/pancreas, Washington Hospital Center, 1993
Adrienne Gibbs, kidney, Washington Hospital Center, 1990
Dwight R. Johnson, heart, Johns Hospkins Hospital, 1992
Russell Queen, kidney, Washington Hospital Center, 1993
If we missed your anniversary or to be sure we have your anniversary, please contact Claude Brady at 703-534-7029.
Organ & Tissue Donation -- Share Your Life. Share Your Decision.
The Nation's Capital Area Chapter
Transplant Recipients International Organization
P.O. Box 7633, Arlington, VA 22207
(703) 920-TRIO
Last modified:
11 May 2000