The History of the St. Louis chapter of
Second Wind Lung Transplant Association

 

Our Roots

Second Wind St. Louis began in 1995 during the early days of lung transplantation. With the gift of renewed life, our founders sought to reach out to patients and families experiencing the ups and downs of transplantation with fellowship and guidance. Lung transplantation then was fraught with even greater perils than today, and most of the original founders have passed. But their legacy lives on more brightly than ever.

This section highlights the history of Second Wind St. Louis. The first four parts summarize the history from inception to approximately 13 years ago. Future segments will bring the history up to the present with highlights of key events plus photos.

We welcome your contributions. Please send your recollections (photos too!) in whatever ways are convenient: email, letter, or even scribbles on an old napkin or scrap of table cloth.

Part I

Our history began on April 17, 1995 when a small group of dedicated individuals formed The Second Wind Lung Transplant Association, Inc. in St. Louis. They sought to supply information about lung transplantation to others and adopted both the slogan “Support through Service” and the mission statement you will find on their comprehensive web site at www.2ndwind.org. Second Wind relocated to Florida to become the national organization it is today. We will leave the story of the national organization for another time, and focus on the birth of its only surviving branch chapter, our own Second Wind of St. Louis, MO.

The relocation of the national organization left a void in St. Louis until 1998 when Larry Kaufmann gathered a small cadre of recent lung transplant recipients to explore the possibility of creating a self-help organization. Who better to tell the story than the founders themselves in our very first newsletter mailed in February 1999:

The St. Louis Chapter of SECOND WIND had its first meeting on Sunday, January 10, 1999. Despite the recent ice and snow, ten members met at Pirone’s Restaurant in South St. Louis at 2:30 in the afternoon. The purpose and goals of the St. Louis Chapter of Second Wind were an initial topic of discussion. It is recognized that there are more active pre-transplant support programs than post-transplant ones. Therefore, our first priority is the support, guidance and education of lung transplant recipients and their families. The importance of support for lung transplant candidates is acknowledged, and the idea of a mentoring program will be explored. A monthly newsletter will be a major way of communicating with members, and those in attendance put forth several ideas for the newsletter. You will see an evolution of the newsletter as we learn about what our members need and want in this format. Another goal for this chapter is one of advocacy, in which the power of group membership can be used to persuade our legislatures to consider laws of importance to the transplant community.

Because this was the first official meeting, election of officers was the first order of business. Those members present voted unanimously to retain, as permanent ones, the acting officers: President Larry Kaufmann, Vice President-Treasurer Ted Tunison and Secretary Stephanie Parkin. Many thanks were offered for the instrumental roles these folks had in initiating this chapter of Second Wind. Linda Brandenburger offered to do the newsletter; she was therefore accepted unanimously as an officer.

Larry, our president, emphasized the importance of an upcoming event that the St. Louis Chapter has to look forward: the opportunity and responsibility of the Second Wind National Convention. St. Louis Chapter will host this activity in September 1999.

Ted, our treasurer, personally sponsored our meal for this initial meeting. After everyone finished pizzas, salads, and pasta dinners we participated in a sharing session which served to highlight the things we all shared, as well as help us see differences of which we might not have been aware. It was this activity that seemed to unite the members as a group rather than the individual participants that met in the beginning.

The tiny organization began with only 11 members (transplant recipients indicated in bold):Clementine Birmingham (double lung 5/24/94); Linda and Gary Brandenburger (heart & lungs 7/27/96); Larry and Linda Kaufmann (single lung 11/18/97); Evelyn and Jim LaChance (single lung 11/16/95); Stephanie and Cassie Parkin (caregivers); and Ted Tunison and Carol Bland (double lung 2/19/98).

The newly elected officers decided to meet on weekends, initially at Gingham’s Restaurant. They agreed on annual dues of $10. Second Wind St. Louis did indeed successfully host the national Second Wind Convention that September – but that is the subject for another chapter of our history.

Part II: 1999 The First Year

The year 1999 marked the beginning of our fledgling organization. Under Larry Kaufmann’s leadership, we grew from just 11 members (3 individuals and 4 couples) in February to 27 couples and 23 individuals by the end of December. We met at various locations, from Pirone’s and Ginghams restaurants in S. County, and SOUPER SALAD in N. County to The Salad Bowl in the “West End”.

Our chapter advocated for proposed legislation to make organ-donor education a mandatory part of the curricula in the Missouri schools. The sponsoring representatives believed it would pass without problems. Unfortunately, Missouri House Bill 994 never made it to the floor of the House and despite the efforts of many, it failed to come to a vote in 1999. It later died after being attached to another bill that failed. “NICOLE’S BILL” was named for Nicole Parkin, a double lung recipient in 1998 who died after a year with her new organs. Her mother Stephanie and sister Cassie were active Second Wind members and worked with other supporters to honor Nicole’s memory by advocating for education of young people about organ donation and the need to tell their families about their desire to donate. Today, the state has a fledgling office devoted to organ donor awareness, and organizations such as Mid-America Transplant Services, Second Wind, and their many volunteers, do extensive community outreach work to spread the message. I have spoken with donor families in St. Louis and elsewhere who stated that the expressed desire of their children to be organ donors played a pivotal role in their decision to consent to the donation of their children’s organs. One family confided that they would have declined to donate if their child had not made his intention to donate clear. They felt grateful to their son for making the decision for them while thereby making the gift of life possible for others.

During Donor Awareness Month, many of our members participated in the Candlelight March for organ donation on April 22. Festivities for transplant recipients, donor families and transplant candidates started at 6 PM at Union Station in St. Louis, followed by a walk to Kiener Plaza and a final ceremony beneath the arch. Members met for an early dinner at Houlihan’s at Union Station. I felt deeply humbled to observe our organization’s lung recipients walk almost a mile, unassisted to the arch, including Clem Birmingham, Larry Kaufmann, Linda Brandenburger and Ted Tunison. Tom and Jenny O’Brien joined us at Union Station but stayed behind as Tom’s transplant was still a dream, not to be realized until November. Larry Kaufmann felt ill during the Candlelight March and was admitted to BJC the next day with a heart attack. Fortunately, Larry recuperated and fully resumed his Second Wind activities within a couple of months.

Our meetings in 1999 featured presentations and discussions on donor awareness, transplant medications and the fears surrounding transplant. We worked at meetings, too. We assembled “Newcomer Packets” to distribute, we placed green ribbon pins on magnetic business cards to sell and we planned the Second Wind Cookbook and our own t-shirts to sell. Most importantly we used these precious moments together to welcome new friends, chat with one another and share our respective hopes, fears and dreams.

We began raising funds beyond donations, starting with selling green ribbon pins and donated items at venues such as the Jefferson County Days and the Affton Days Celebration. Later we graduated to selling our own t- shirts and cookbooks. Coordinators Jenny O’Brien and Clem Birmingham created our $7 Second Wind cookbook from the donations of many dozens of recipes from our members. The officers and members created the first of our many custom-designed t-shirts, beginning with the clever “Recycle Yourself” design. Mid-America Transplant Services (MTS) began graciously extending invitations to us to have a table at MTS-sponsored functions to sell ribbons, cookbooks and t-shirts, an important opportunity MTS continues to this day. Under the careful stewardship of treasurer Ted Tunison, our treasury grew to over $1000.

The newsletter grew to provide more than just a notice of coming events and highlights of the previous month. Linda B. used her background in nursing and advocacy to create useful transplant news and medical summaries plus notices and analyses of relevant pending legislation and changes in organ allocation rules. Linda worked with the officers to write features that highlight trends and opportunities that assisted our members with advocacy for causes related to transplant and donor awareness.

Second Wind national hosted its annual meeting in St. Louis in 1999. After resolving initial ambiguities over roles and responsibilities, the national organization largely organized and ran the annual meeting, while our chapter hosted a picnic for our members, BJC lung transplant alumni and participants of the annual meeting. The picnic began at Noon in Sylvan Springs park near Jefferson Barracks and featured catered barbecue, attendance prizes consisting of donated crafts and purchased items. Perfect weather and a large showing of families, pre- and post-transplant patients and friends from around the country made this a memorable event.

Many of us participated in the Fourth Annual Donor Sabbath Weekend in November. This remarkable year ended with the 1st annual Holiday Party on December 19th hosted by our chapter of Second Wind at the wonderful home of Ted Tunison and Carol Bland. We celebrated the gift of new lungs that year for members including Val Gregory, Janet Walin, Tom O’Brien.

Part III

January 2000 marked the first anniversary of our organization, but everyone was too busy building Second Wind to take time for celebration. We met at the Salad Bowl on Lindell and continued the tradition of holding a business meeting, followed by a formal program and then socialization if time permitted. Olivia Wyatt joined our meeting while her husband Dick recovered from his recent double lung transplant at BJC. We grieved the loss of member Maxine Boedecker.

January became the membership renewal month and Treasurer Ted Tunison collected $10 dues for full and associate memberships. Newsletters were mailed to all members, with approximately 50 copies going out each month. Newsletter Editor Linda B. did the writing, printing, folding and stamping. Today, most members read the electronic version authored by Tom Archer. Member Jacque Jewett does all the printing and snail- mailing to those without the Internet.

We hatched a plan to have a tree planting ceremony for donor awareness week. A committee of Second Wind members [Clem Birmingham, Ted Tunison, Cassie Parkin and Twi Cotter] and MTS representatives [Kim Yurkovich and others] worked to plan the event. A tree was to be planted (maybe in Forest Park) in honor of donor families from the past year. Each family was to be given a green ribbon to place on the tree as a representation of their loved one. A lunch and presentation of a medallion to the family by a randomly- assigned recipient were to conclude the ceremony. Logistics precluded this, but the idea eventually evolved into the collaboration between Second Wind and MTS to co-host the annual Donor Sabbath. Second Wind designed and paid for the Christmas ornaments, handed to donors and families by lung transplant recipients at the ceremony. The seminal idea originated at our meetings and the tradition continues to this day. MTS noted that this was the first effort by recipients to recognize donors. Even today, lack of recognition by recipients causes anonymous donors and donor families distress and sadness.

The Second Wind Cookbook went to the publisher in December of 1999, based on pre-sales of 130 cookbooks. Over the next few years we sold every copy of the $7 cookbooks, which today are collector’s items. I still use our dog-eared and stained copy although the front cover has become faceless after a disastrous affair with the top of the toaster oven.

The January 2000 newsletter featured encouragement and an article on exercise and fitness for the transplant recipient. Linda B. strongly supported exercise and positive health habits in the newsletter and in her interactions with transplant recipients nation-wide. She also featured articles and perspectives regarding immunosuppression, medications, Medicare and other reimbursement issues, and advice regarding careers and working while on disability. The tradition of health and fitness features in our newsletter continues to this day.

Larry Kaufmann continued his work lobbying and advocating for transplant and organ donor awareness. Member Ron Petersen became a strong anti-smoking advocate and provided information and relevant legislative alerts for the newsletter. The pending Missouri tobacco lawsuit settlement occupied the news prominently then.

Planning began for participation in the 2000 Transplant Games. More about that in the next installment.

Part IV

The year 2000 started with enthusiasm and $1,416 in the bank! One hundred thirty of the yet to be published Second Wind Cookbooks had been pre-sold. The newsletter encouraged our members to participate in a career fair now that the 1999 Federal “work incentive improvement act” had been enacted into law, permitting, at last, Medicare recipients to work part time without jeopardizing their benefits. Our chapter celebrated its first anniversary with the name “Second Wind Lung Transplant Association.” Of course, the organization sprung from its early origin, the “Lung Transplant Care Givers” which we will explore in a later installment of this column.

The free Second Wind “Welcome Packets” had become an important service of our organization, providing information about lung transplant, plus information to assist patients visiting or temporarily relocating to St. Louis such as local apartment and restaurant listings and area maps. After our meetings, members often stayed to form an assembly line to stuff the blue plastic envelopes. Members placed these in strategic locations where the patients and families might find them. BJC allowed us to stock the pulmonary clinic, rehab and other locations, and the transplant social workers also gave packets to new patients.

T-shirt design continued as part of an experiment to test the value of t-shirt selling. We sold t-shirts at booths (tables really) at various venues including the PULMONARY REHABILITATION DAY at St. Luke’s Hospital, St. Louis Family Expo 2000 at the America’s Center and the St. Louis Science Center.

After much success selling t-shirts, the officers felt that this one-time exercise had run its course. Nothing could have been further from the truth! We reordered t-shirts and in subsequent years created various new designs. Every design netted money for the treasury, and a few designs (such as the red shirt) continued to be made and sold for years. We also began selling the green transplant ribbon pins.

2000 was the most prolific year for guest speakers, which included representatives from BJC Social Work, BJC Exercise Physiology, the Second Wind National organization and multiple speakers from Mid-America Transplant Services (MTS).

The original “Arbor Day” celebration of donors evolved into a tree planting where donors would place a green ribbon on the newly planted tree. Later, in consultation with MTS, we transformed the concept into the Donor Sabbath celebration in November. The giving of ornaments designed and paid for by Second Wind eventually replaced the original tree planting and ribbon placement concept. Over time, MTS took more responsibility for staging the event until now the donor Sabbath is run by MTS with participation by Second Wind. The grand dream of our modest little organization is now an annual event drawing hundreds of participants.

In March of 2000, Second Wind sent a team of emissaries to participate in the Missouri Governors Organ Donations Advisory Committee meeting in Jefferson City. Our members spoke briefly at the start of the meeting and were invited to stay and participate in the entire meeting.

The 2000 Transplant Games to be held in Orlando in June became a prominent topic of interest. The local chapter of the National Kidney Foundation organized the team from the St. Louis area. A few Second Wind members participated that year, although not as many as will participate this year in the 2004 Transplant Games. More on this later!

May 2000 brought the dedication of the Second Wind Gift of Life Garden! This dream of our former President Ted Tunison became reality on a corner patch of ground near the BJC medical center. More on this and the last half of 2000 in the next installment.

Part V

During a planning and brainstorming meeting in January 2000, the membership and officers declared the priorities for the year. Providing “personal mutual support” to members and those just beginning the transplant experience ranked highest. Officers and members stayed with the transplant patients and their families in the anxious hours after “getting the call” as they waited for the surgery to begin; and stayed with the family as they awaited news from the surgery team about the progress of the transplant. Betty Luster (Donna Kohl’s mother) continued to take responsibility for having balloons delivered to new lung transplant recipients as soon as they were well enough to receive and enjoy them.

In March, the Arbor Day Ceremony finally evolved into the Donor Sabbath and remained one of our highest high priorities. The assembling and distribution of welcome packets continued to be a vitally important activity. We sold the new cookbooks ($10 each, not the $7 originally planned) and green transplant pins where and whenever possible.

Fund raising began to help support the lung transplant members who chose to compete in the 2000 Transplant Games (“Olympics”) in Orlando in June. Linda B. led the effort for Second Wind and sold the $10 raffle tickets. No one in Second Wind held the raffle ticket that won the Corvette. But sufficient funds were raised to provide generous support for the athletes and help assure the participation of the St. Louis region in this and future games.

Second Wind Officers and members volunteered to staff tables and booths at numerous venues throughout the St. Louis area in order to carry the message of the importance of organ donation. We sold T-shirts, cookbooks and pins too, of course. We learned first hand how great a challenge the transplant community faced. Few people visited our booth at the ST. LOUIS FAMILY EXPO 2000 at the America’s Center. Some turned their heads away from us as they walked past our booth. One person looked straight at us and mouthed the words “No way!” The goodness of the human spirit shown even more brightly though than the nay-sayers. One young girl asked many questions and then decided to sign an organ donor card. After we explained that her parents would have to give their consent, she left and promptly returned with her family who gladly served as witnesses to her signing! This was particularly touching to Linda and me because Linda’s donor was a 12-year-old little girl. The many hours spent at booths and tables were rewarded by reaching out to people of all kinds to bring the message that organ donation truly gives the gift of life.

Other outreach opportunities included staffing the phones for a week in April when NewsChannel 5″s Volunteer Program featured MidAmerica Transplant Services (MTS) as their “volunteer of the week”. We actively participated in the 16TH ANNUAL CANDLELIGHT MARCH For Organ & Tissue Donation Awareness hosted by St. Louis University. During this event we proudly marched with our Second Wind banner and connected with the many transplant recipients and donors who came. Local television news broadcasts used coverage of the event to support donor awareness. The annual Pulmonary Rehabilitation Day at St. Luke’s Hospital offered us the opportunity to carry our messages of hope for lung patients and the importance of organ donation to the public and healthcare communities assembled there.

During The First Family Pledge Millennium Mayorathon in May, mayors from cities and towns in 22 states around the country raised awareness of the critical need for organ and tissue donation by taking part in a cross-country “Mayorathon” relay. We participated in the celebration at Kiener Plaza with St. Louis Mayor Clarence Harmon.

In March Ted Tunison, Larry Kaufmann, Linda Brandenburger, and Clem Birmingham attended the quarterly meeting of the Governor’s Organ Donation Advisory Committee in Columbia, MO. Despite the meeting’s long agenda, our members were given the opportunity to introduce themselves and talk about the history, goals and objectives, and accomplishments of Second Wind.

Merry Smith, RN, spoke at our February meeting and in March we celebrated her promotion to Community Affairs Coordinator at MTS. Merry has served as a vital resource for our Second Wind chapter and our principal link with MTS.

The MTS family services coordinator Rev. Marvin L. Holden, II spoke at our April meeting and helped us explore the spiritual experience of organ transplantation and donation.

This was a remarkably busy time for our fledgling chapter. Our hardworking members and officers worked diligently to create an organization that made a difference that truly mattered. The tradition continues today.

Part VI

We held the 7 May 2000 Second Wind meeting in the Central West End to dedicate the opening of our new Gift of Life Garden. Ted Tunison conceived the idea for a little garden-oasis only a few blocks from the Barnes-Jewish Hospital complex that would serve both to acknowledge the extraordinary gift of organ and tissue donation and to remind those who stroll by of the critical importance of becoming a donor. Ted and his wife, Carol Bland, provided funding to assist creation of the garden and led the effort to secure support from the Central West End Association plus the donation of a site at the corner of Laclede and Euclid from St. Louis Parking Company. Second Wind members, initially led by Linda Kaufmann, donated time to create and care for the garden, while Ted and Carol (who lived a few blocks away) looked after it and did watering. Occasionally a group of members would meet for a big planting, weeding, or mulching. Family members and caregivers often did much of the work since digging in soil, sweeping and mulching can pose a risk (from dust and fungus) to lung transplant recipients.

Countless people have passed the garden since its inception. Now and then some have lingered there. Others simply paused to reflect. Occasional revisions, a new sign and much work have kept our Garden an inviting island of peace in a bustling urban area.

Ted and the officers understood at the outset that the owners of the donated site (a corner of a commercial parking lot) might one day choose to sell the property or develop it. That day has arrived. The passing of our garden, like a loved one, reminds us that although life is finite, the positive ways we affect others creates a legacy that lives on long after each of us is gone.

Writing this History column gives me an opportunity to look back upon more than just the facts of our splendid organization’s past. Second Wind is the story of remarkable people. Although all of our original founders have passed, and I feel an inestimable sense of loss without them, I feel most humbly grateful for all that they have given us. The Second Wind they created more than survives. It thrives onward to continue its legacy of giving to its members and their families, while increasing donor awareness.

As the Garden becomes a fond memory, we shall soon witness the birth of a new milestone – The Second Wind Lung Walk in Forest Park on October 30th. This marks the ambitious beginning of a powerful new chapter in our history, as we begin building toward a fund to assist transplant patients with unreimbursed medical expenses.

While this column serves to recall, cherish and preserve the history of our organization and the stories of the people who create and nurture it, I felt it important to reflect on our Garden in the context of our evolution and to look positively toward our exciting future of giving.

– Gary Brandenburger
Second Wind photographer, historian and occasional columnist