“I wanted to get the word out,” she tells Mesh News Desk today.
And that she has.
Urban created thousands of graphics which she’s launched on many platforms of social media – Facebook, Twitter, and Instagram.
Urban has figured the intricacies of social media such as using a dozen hash tags, #MeshKills, #MeshMaims, #LiveLifeMeshFree, @jnjcares, #jnj, @jnjnews. Social media levels the playing field and puts her up front on the many platforms. Her efforts have generated thousands of followers.
One of the original campaigners online, Jan Urban, aka Janis Hietala, (maiden name) was implanted with an Ethicon TVT Exact, a one-half inch by 18-inch polypropylene strip of mesh placed under the urethra for support. Exact is still on the market, one of four slings made by Ethicon, a division of J&J, that remain on the market.
She had reason to be concerned. Years earlier, a general surgeon, Dr. Dean Borth, told her to never put mesh in your body. Jan remembered what he said and when she was wheeled into the operating room she reiterated “no mesh.”
“All of a sudden my urologist decided to fix me up with mesh. It was December 15, 2011. He never explained it to me. The nurse came in and said you have to sign the permit to operate form and she checked the box. I said, ‘I won’t sign this, he never explained.’ The nurse said he will come in and explain.”
So before surgery, Jan checked the notes. It said retropubic sling. “Is he putting this in me?” she asked. He said yes. “I said, ‘No Mesh. I said I don’t want that shit in my body’.”
He said nonsense I’ve been doing this for years and had no problems.
As Jan was wheeled into the operating room, she says she was yelling, “I don’t want no mesh! I was telling them as I was put under.”
Urban says eight hours after she woke up she was in sheer agony. She couldn’t walk or stand.
“I feel the same pain after that surgery. My legs swelled up, they felt like numb and dragging 10-thousand pounds around. It’s one thing after another. I’ve never gotten well.”
During post-care the surgeon told Jan he didn’t see any problems. The mesh was in the right place.
Jan was undeterred.
“What the F*** did you do to my body,” she says she got right in his face. After that he stopped calling her back. Jan found herself unable to stand up, instead leaning over the back of the couch to relieve pressure in the pelvic region.
Four years later in March 2015, Urban had the Exact mesh removed by Dr. Rooney, noting he was an Irish doctor and the removal took place on St. Patrick’s Day.
“I always find humor in everything.”
But a painful surgical open wound infection landed her in the hospital for five days. Flushed with antibiotics and 10 days of open wound care put her in a state of mental shock, traumatized by the entire episode. Ultimately five types of wound care, including a wound vac, were needed to heal the exposed area.
Over the years she’s had a steady decline in her health including going into heart and organ failure twice. And that’s not all.
Since the removal, she’s also experienced, eye issues and skin issues. Her teeth turned black at the gum line. Psoriasis flared up; her toenails were gone. Jan’s legs would swell from edema resembling an elephant’s legs. Her stomach swells too. It’s a mesh belly that many women experience after their implant. Her left leg drags like she is paralyzed. Bowel and urinary incontinence issues continue and she is on oxygen 24/7.
“It’s the body trying to release toxins,” Jan says. “It’s very common among the mesh community,” she says, as are gall bladder removal. Some women gain women some lose weight. Doctors aren’t following the adverse events. The doctors don’t think it’s the mesh.”
Even Dr. Rooney was skeptical that the polypropylene mesh was creating all of these problems. There’s nothing wrong with the mesh, she heard him tell her husband, Jack. Her doctors continue to deny it’s the mesh even though the issues began after the implant.
Interestingly, her wound care doctor said he sees mesh infections all the time, referring to hernia mesh patients.
“They made up lifetime warns of the medical system- everybody is making money off of me because of my health issues now.”
Jan says she stays away from sugars and carbs to keep well but since she can’t move, her weight is now over 200. Before mesh Jan weighed 162.She says she was solid muscle from work with a flat stomach. Jan looks at her healthy twin sister, who does not experience any health problems, to see how far she’s fallen.
“I used to look great in jeans. I was a 58-year-old with a nice ass. People would say I’d give anything to have an ass like yours.”
Jack empties her pee bucket, Jan tells MND. They laugh together, but that’s about it. A horticulturalist, Jan was a Master Gardener who had the small lot in her urban backyard. “I would incorporate my vegetable garden with perennial and annual flowers, herbs, perennials, trees, shrubs, ornamentals.”
For years she worked for the state of Ohio where she was known as the “Gardening Guru of Greater Canton.” Jan visited schools to inspire and educate people on gardening. In additional to teaching children about gardening, she taught science in an after-school enrichment program, which she loved.
“Now I can’t do anything.”
By the end of the day, the nerve pain radiates down her lower hip and left leg, sometimes her lower back and buttocks. “It’s on fire pain where you want to scream. I take deep breaths, drift away, watch a tv program. It’s a mindset. I have to push through it.”
Now, despite having three bedrooms upstairs, Jan spends her time living on the living room couch where she can sit up. It hurts too much to sit at the computer. Jack takes care of the gardens.
“He does the best he can.”
“I work hard on a mindset. I don’t get depressed. I try to find joy and push through with a positive attitude.”
The push is for others. It’s always been to let other mesh-injured patients know they are not alone.
“To push forward and let them know they are loved. Push strength for another day. Life is too precious for me.”
In her heyday, Jan hosted Twitter parties globally every Friday night and others joined in. She would suggest hashtags to Sling the Mesh, Scottish Women’s, New Zealand, Australia, Mesh Me Now, Mesh Problems, MAM. With years of experience, Jan knows somebody out there needs their support. She even hosted tutorials on how to use Twitter so others could learn what a hashtag means, and why use Twitter as a platform.
She felt patients traumatized by their implant, the pain, and the denial from the medical establishment would have somewhere to go.
It doesn’t stop with patient support. Lately Jan has addressed the U.S. Food and Drug Administration and its lax clearance of the majority of medical devices, including polypropylene mesh, considered a Class II or moderate risk device.
“I advocate for safety and redressing implantable medical devices, the failure to redress 1975 510(k) submission policy. I campaign for that. One of my posters on janiskurbanpage says patients have become lab rats. I like the way they are tweeted. I have the right as a citizen that allows medical devices to go onto the market untested. I have a right to tell people where they can get support and doctors. I have a right to a trial also.”
But Jan feels her outreach is experiencing diminishing returns.
“I got warned by Twitter, someone reported me for calling the medical device industry a cartel. It wasn’t within the Twitter rules and they suspended me and I had to appeal it.”
And as one Tweet used to generated 60,000 impressions.
For some reason, the Google algorithms are down to where 5,000 impressions are what she calls “spectacular.”
“Our impressions are down as well as our engagement. We’re just talking to ourselves.”
Jana adds her advocacy is not about herself, in fact, she rarely talks about herself.
“They’ve used us as human experimentation without our informed consent. Women are being gaslighted and told it’s not the mesh, but we see heart disease, liver disfunction, bowels screw up, peeing yourself. They need help, to be cared for. It’s not okay. We have serious problems. There is nobody taking care of the systemic issues and very few to take care of complications from mesh. Women are developing multiple diseases, liver, thyroid, heart issues, why? That’s not normal for people in their 30’s, 40’s,50’s and 60’s.”
“I try to Tweet every day to show people they still have a voice. I can’t give up on them.”