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Margo Akerman (seated right) with fellow puppeteers Becky Ferguson (top) and Elaine Vuyosevich.

The puppets in the photo: (standing) Melody James, organ donor sister, (seated left to right) Alex Landry, heart transplant recipient (note scar on his chest), and Michael Riley, curious and facilitating friend of Alex and Melody.

A career journalist and professor, Margo Akerman has always been an advocate. Yet she took her advocacy one step further when she became a transplant recipient, becoming a voice for wait list patients and recipients, and a proponent of organ donation.

Needing a Kidney

Margo Akerman was 39 when she learned she had a genetic disease that would lead to rapid kidney failure. Almost 20,000 people were on the organ wait list when she was first listed for a kidney transplant in late 1986.  Luckily, she was on dialysis for less than a year and received her first kidney transplant in 1987. This kidney lasted 13 years. She had begun experiencing chronic rejection more than two years before and then could no longer put off the inevitable-- going back on the wait list. Amazingly Akerman received her second kidney in less than two months, a zero mismatch local kidney.

"The wait was fast, very odd actually, the fact it was a local zero mismatch. The donor was older than I, but she wasn't an extended criteria donor, as I was told the donor was in her early 60's and her health condition was good," says Akerman.

Getting Involved

Akerman's wait for a kidney was not typical, as a patient may wait anywhere from three to five years. Though her first wait was long ago and for less than a year, in that time she realized how difficult life on dialysis and the wait list could be.

"When I went on dialysis for the first time in 1986, my daughter was 11 and my son was 9 years old. I was teaching journalism at the University of Tennessee and my husband and I owned a Victorian house; part of which was a bed and breakfast with five guest rooms. Having been running a bed and  breakfast, teaching, being involved in county government issues and my church, my life suddenly came to a screeching halt as I faced end stage kidney failure.  You can't even mother very well when you're on dialysis for five hours; three days a week," explained Akerman.

It was her experience first hand as a kidney recipient that piqued Akerman's interest in organ donation. Knowing how difficult life could be on the wait list, she wanted to help others who were still waiting. "I became involved in a local support group for transplant recipients, but was fully aware of the lack of support for those waiting," says Akerman. In 1989, Akerman's transplant center appointed her to the Tennessee Council of the CMS Network 8 to help educate wait list patients and recipients. The council elected Akerman as their patient member on the network's medical review board for Tennessee, Mississippi and Alabama.

"While serving on the review board, I became more aware of dialysis issues in these three state areas and subsequently expanded my knowledge about dialysis and transplantation issues as a whole," says Akerman. Her role with Network 8 led to her extensive involvement in the OPTN/UNOS Board of Directors beginning with her appointment to the Patient Affairs Committee in 1992.

Giving Back to the Transplant Community

Akerman has served in a variety of roles with the OPTN/UNOS. She served three terms on the OPTN/UNOS Board of Directors, two terms as board liaison to the Ethics Committee, and in her most recent involvement, she served on the Kidney Allocation Review Subcommittee (KARS) which is evaluating the quality of life issue in determining kidney allocation. "As a kidney recipient, my goal on the KARS Committee, which has now become part of the OPTN/UNOS Kidney Committee, is to see that all patients who are listed have a true hope of realizing a second chance at life with a deceased donor kidney transplant."

Understanding Organ Donation through Puppetry

Since Akerman's first kidney transplant almost 20 years ago, she has felt obligated to  pay back in some way the memory of her donors and the more than 64,000 patients waiting for kidneys.

"When my health had fully returned and our family life had become more normal within a year or so after my first transplant, I looked for volunteer opportunities to help educate young people about donation and started speaking to local high school health classes. Unfortunately, I felt like a medical specimen as I was asked to walk around the classroom and hold out my arm so they could feel my fistula 'buzz'."

About a year later, Akerman learned of a newly developed initiative in Tennessee under the local organ procurement organization, Tennessee Donor Services, and the University of Tennessee Medical Center, Knoxville (UT). The OPO had connected with a national organization called Kids on the Block, Inc, which provides programs for elementary school age children using puppets. The style of puppetry used is based on a Japanese style called Bunraku (boon-rah-koo). The puppets are 3 to 4 feet tall and some have a disability and use aids that make their character distinctive and realistic. The puppets fill the need of children with disabilities by educating their non-disabled peers to understand and accept them. In addition to the programs on disability awareness and medical and educational differences such as cerebral palsy and learning disabilities, they also offer social and safety programs such as child safety and organ donation.

"I was invited to see one of these programs when Tennessee Donor Services and UT Medical Center were developing this, and was enchanted as the children were drawn into the story and the life of these puppets. And the children were more open to ask questions to the puppets, since they tell the story from a child's point of view," says Akerman.

Akerman worked for 14 years as a volunteer for the Kids on the Block's organ donation and transplant program since its Tennessee premiere in 1991. She addressed more than 20,000 children of upper elementary school age until she retired as the local director a year and a half ago.

"The generation of kids who were third through fifth graders when I started is now about 25 years old. I feel that they may have experienced an organ donation or transplant situation by now and that their exposure to the program years ago will have had a huge effect," said Akerman.

Akerman explains how much of an impact the educational program could have on increasing the donation rate, "This program is already available for OPOs to educate young children and I am aware that it has helped increase the number of Tennessee Donor Services' family initiated donation requests."

The Importance of Change

Roles have changed for Akerman, who once taught at the University of Tennessee. She now sits in the classroom as a student in the philosophy and medical ethics program. "Serving on the OPTN/UNOS Ethics Committee sparked my interest in how decisions are made and why we make those decisions. The program has enriched my life by exploring my fundamental reasoning as well as my life experience," said Akerman.

Though she's not directly involved in the Breakthrough Collaborative initiative, knowing what has been presented to the Board of Directors has been impressive. "The Collaborative is a true success and team effort. It is the teamwork and interaction that is behind the change," says Akerman. "I'm for any program that increases donation."

It's people like Margo Akerman who greatly help the organ donation and transplant community. She is a true testament of how a transplant gives someone a second chance at life, and she has taken that second chance to help change the lives of others. 

Organ procurement organizations interested in offering The Kids on the Block's organ donation and transplant program in their area can call 1-800-368-KIDS or visit the Web site, www.kotb.com