David and Teresa Sawyer Establish Patient Advocacy Group TVTNO.org
May 31, 2012 ~ David and Teresa Sawyer from Curtice, Ohio faced a traumatic introduction to a medical device that would change their lives. When Teresa was implanted with a transvaginal tape (TVT) bladder lift in February 2010 she had an almost immediate reaction.
Teresa explains “my whole body went nuts.” She says, “I couldn’t walk, do dishes. We went to the ER when my right leg was swollen double its size, nobody had an explanation. I was what they called a “high responder to the chemicals” referring to the polypropylene components which makes up petroleum-based surgical mesh used to treat the condition of incontinence. She had laryngitis or three months, developed mono and vertigo. Every week she says she was going to an emergency room.
“I was afraid to fall asleep thinking I might die. I told my sons ‘I love you’ so often because I was afraid I wouldn’t wake up. We’d sleep in shifts,” she says of the support she received from husband, David.
The downturn in his wife’s health had a big impact on David too. He was diagnosed with diverticulitis which he says is caused by stress.
“I believe it was totally because of mesh. I couldn’t sleep; I’d wake up at 4 a.m. researching. There wasn’t anything out there to read so you had to dig deep. I put in hundreds of hours reading, trying to save Teresa’s life.”
The family went into survival mode and David, a carpenter by trade, even sold his tools and all of the family possessions to keep the lights on. As David’s health improved and they began to patient advocates who helped the couple find much needed medical care.
Teresa has had four partial removal surgeries which left mesh behind, including one where the doctor pulled the mesh out of her without anesthesia while she was on the table and in the stirrups. David says he watched his wife lift off the table in pain. She has more removal surgeries ahead.Out of the Dark
They liken those dark days to coming back from war with post traumatic stress disorder and realized there were few resources for the thousands of other women and their families facing the same thing. No one else should have to experience this, the couple thought. And they heard from others with similar stories and realized mesh complications were destroying families, husbands in the dark about what was happening were leaving their wives, and some people disabled by mesh and unable to work were scrounging for the basic necessities of life.
The idea for a nonprofit was formed.
The Sawyers met Michael Monheit, a Philadelphia attorney who is deeply involved in nonprofit causes. With no strings attached, Monheit has arranged for the couple to have their nonprofit status filed. He’s funding the web designer who is creating the TVTNO.org site, while a friend designed the purple logo. They chose purple because mesh is often blue.
TVT No will be a ‘comfortable place to learn, not a scary place full of big words that are intimidating. We want to make this comfortable and gentle,” Teresa says.
“There is no men’s voice in this” David says.
Besides forums for women to discuss their symptoms and to share information on surgical and legal remedies, men will have a place to go. “One of the things that makes me angry is when I hear ‘he doesn’t understand or he doesn’t care,’ says David who insists that mesh complications can destroy couples who are suffering their own individual traumas.
“I know how blessed I am,” says Teresa referring to her husband’s constant support.
Fundraising will be goal one with a request to American Airlines for donation miles so women can travel to seek medical help.
“I’m starting with them and Angel Flight. When a woman wants to get to a doctor she shouldn’t worry about the transportation part, it’s a huge issue. There are always miracles that can happen to get them where they need to go.”
The couple plans a couple of local radio interviews in the next few days and on Friday, June 1 will be interviewed by Danielle Nunez of Consumers Union. They will be creating bumper stickers, wristbands with the logo to raise funds. Donations will be welcome at the site TVTNo.org through Paypal and even gift cards, gas cards, retail sore cards. One woman was able to get subflooring to help her stay in her home through someone’s donation of a Home Depo card. Some funding will go simply to keep the lights on. Most mesh injured women find they cannot hold a job. Many cannot even stand.
Teresa says people often throw away gift cards but they are needed, “to help stabilize these women’s lives so they can get a meal. They are really, really important. People don’t use them, they expire we want those!”
Besides transportation and the immediate needs of living, the long-term goal is to help fund insurance to pay for mesh removal surgery which can run upward of $70,000. Readers will hear from other women who have found doctors to help remove mesh. “There are other doctors out there besides Dr. Raz, (UCLA surgeon) and we want to know who they are,” Teresa says.
Though cognizant they cannot give legal or medical advice, the Sawyers have a team approach which will include a nutritionist, a lawyer, a professional business manager, and media adviser (your editor has been asked to join in that capacity).
“We’re trying to put together the best team to be a one stop resource for women,” says Teresa. #