Estelle at UCLA
Estelle Tasz calls her home “organized chaos.”
The 37-year old mother of four is home now after more than one month in Los Angeles where she went one night in a desperate bid to find medical help. Estelle thought it was necessary to travel 2,400 miles to get help after four hospitals in her home city refused her help, even though Estelle says she had an elevated temperature and a raging infection.
Estelle should know, she worked in the medical field in her career. She was septic from a urinary tract infection, and unable to void (urinate) or to defecate.
Tasz has plans to return to the urology department at the University of California Los Angeles (UCLA) for further medical treatment but a chronic bacterial infection has her grounded. The infection has caused spots all over her body so Estelle was prescribed penicillin. Such an infection is believed to be associated with transvaginal mesh. See research here.
“It’s rare. It’s seen in cattle” she tells Mesh News Desk, “and commonly affects the face and neck.”
What would drive this young mother with four children across the country for medical help?
In the Beginning
Plastic polypropylene mesh has been her life following childbirth in 2004 when her bladder dropped. She had transvaginal tape, a form of pelvic mesh used to treat prolapse, and was told it was the “gold standard” of treatment.
When interviewed in April 2014 by WTAE television, Estelle told investigative reporter Paul Van Osdol that this “gold standard” felt like knives inside of her. See the interview here.
Estelle and Audrey
The mesh has also damaged her love life. Estelle remarried in 2012. Because of the surgeries, she cannot have any more children. Wanting a child together, she and her new husband adopted a daughter Audrey.
They took Audrey home when she was only three days old and are still in touch with the birth mother.
Estelle says she never knew it was a polypropylene mesh inside her until it was found migrating and degrading in her body during surgery to remove what was thought to be “sutures” to relieve her pain.
Mesh was retrieved during one surgery that took more than ten-hours. It was one of eight she's had over the years. Only this time Estelle says she died on the table twice. Four doctors treated her during the first surgery, with them only referring to the mesh as “sutures” and never going into more detail.
By early April 2014, Estelle was experiencing bleeding, pain, what she believed was a kidney infection and overall flu-like symptoms. “Mesh Flu,” Estelle calls it; every mesh victim knows the feeling she says.
The young mother returned to the leading mid-west Women’s Hospital to see the female surgeon who had done four of her eight surgeries, including what she called a “removal” surgery. The doctor agreed to order a cystoscopy.
“I was lied to until 2011. I was never told I had mesh and where it was in my pelvis” she says.
During an evaluation by two doctors, one doctor told her to seek psychiatric care. “She gave me a prescription for a vibrator to order from Dr. Oz.” Estelle says remembering she was told this was to be an alternative to her husband.
At the same time another doctor said, “Did you know your cystoscopy showed you have mesh? It needs to come out,” Estelle remembered. Same hospital, same department and two surgeons with two extremely different results. Estelle was confused.
The in-depth WTAE report aired April 30, 2014.
Estelle and CAN campaign at J&J headquarter
Estelle joined Corporate Action Network, a consumer group that holds corporations accountable, and appeared with other mesh injured women at a Johnson & Johnson shareholders meeting this past year. She spoke to Huffington Post and was quoted by Associated Press and other media.
See Huff Post here.
But upon returning home, Estelle knew an infection was raging out of control. She visited altogether four local hospital emergency rooms seeking help. In every case, she was turned away.
First Visit –
Estelle hadn’t voided in several days and knew she had a problem. She went to the local hospital reporting her problems and the doctor there tried to get a Foley catheter in but couldn’t. The doctor said he would call a specialist, someone from urology.
“I said, Thank God!” she says.”I was screaming in pain.” Instead the doctor came back with discharge papers saying urology declined to treat her. Nurses told Estelle to seek treatment somewhere else as she was sick but this hospital was not going to help her.
At that point a sick Estelle returned home. Her sister, a nurse, got a catheter in and white puss and particles and urine were coming out. Estelle called everyone she knew including the reporter who had done a story featuring her the week before. She called a PR professional she knew; she called a patient advocate; she called her attorney – begging for help.
Second Visit –
By 9:00 the next morning the president of the ER she had left a few hours earlier called and apologized, inviting Estelle back for treatment. Estelle says her return to the hospital she got the red carpet treatment. A catheter removed 800 ccs of urine in her bladder, almost double what the typical bladder holds. A temporary relief which Estelle predicted would fail. It did the next day.
Visit Three -
That’s when she called 9-1-1. About two days later, Estelle was having trouble breathing and pain.
She was taken by ambulance to a local hospital. She says her body was hard as a rock. She was given a shot of Adavan and Vicodin. She was unable to void or to have a bowel movement.
The nurse tried to catheterize Estelle to relieve the urine building up in her bladder but she was leaking all over the bed. Estelle recommended a different type of catheter and requested a urology consult, but that help never came. Instead, Estelle was given discharge papers she says.
Estelle knows the procedure. When you leave, you sign the discharge papers from any hospital, that is how they bill for their services. No one required her to sign but she knew she needed to urinate.
Fourth Hospital Visit-
Because they had shown some compassion, Estelle says the next day she went back to the original hospital where she had received great care just days before. The doctor “walked in and said ‘I have five minutes for you.’” Estelle recalls. She said the last catheter failed and she needed urine to come out. She asked for a gastrointestinal consult and urology consult.
The doctor said those are not Estelle’s rights but that that he would call urology.
Two hours later the doctor came back into the room and said that Estelle should call urology on Monday and that she did not need a catheter today. Estelle tried to explain to the doctor that she had a fever, could not urinate and that the doctor had not even examined her – she needed help. The doctor simply discharged her instead.
Upon being told she was being discharged instead of receiving the help Estelle needed, chaos erupted. Little Audrey was on her plastic phone, calling God, “Please help my mommy.” Estelle says her husband was on the floor overcome with grief, even her lawyer tried to help unsuccessfully.
Estelle was panicking. She had a fever, could not void (urinate) and was afraid her bladder would rupture. Her body was covered in black puss pockets and she was swollen – looking like she was seven months pregnant.
The doctor did not seem to care. Estelle was asked if she had an appointment at UCLA in two weeks. “That's the first time my husband got it in his head they didn’t care if I died,” Estelle said.
Estelle and her family eventually left this hospital too, her husband carrying her. Estelle says two nurses were crying and no one asked for her paperwork. “They just stood there and watched me walk out of there. They knew I was going to die,” Estelle recalls. The nurses told Estelle to try to get help somewhere else.
Estelle knew she had run out of options and decided to get on a plane to Los Angeles the next morning.
In the meantime, Estelle went home for the night. It was an act of kindness that kept her alive that night. She received much needed medical care of antibiotics and an IV. She says it saved her life. Ironically, she notes, that medical savior would his or her their job for that help, while the doctor who turned her away to die still has his.
By 5am Estelle and her sister were on a place to Los Angeles. In the tiny bathroom plane, her sister catheterized her. Some urine came out and Estelle says the puss pockets began improving. She arrived at UCLA for a much needed consult with Dr. Ja-Hong Kim at the Department of Urology.
For the next month, doctors would work to stabilize her infections, look for mesh with a translabial ultrasound and with a cystoscopy which looks inside the bladder and the urethra. Her June 10 surgery had to be postponed due to the infections. Her daughters had flown to California to be with her. She’s spent about $12,000 on airplane tickets alone.
Estelle talks about her meeting with Dr. Kim. “My head was down. She said what did you do Estelle that was wrong? I said I don’t know. I guess because I spoke out in New Jersey and on television so my life got worse.”
Estelle remembers that Dr. Kim told Estelle she was a brave woman who Dr. Kim respected. Dr. Kim also said she was ashamed to be a doctor in the same category as those who treated her in her home town.
Surgery is scheduled for July 7, to help remove mesh, take fascia from her own body and create a biologically compatible sling to put under her bladder. More surgery will be needed to reconstruct her pelvic floor and vaginal wall. Dr. Kim is unsure if all of the mesh could ever be removed.
Estelle says, “I realized when my dog broke his leg, he got better care than I did. We rushed him to the hospital. He had the best orthopedic surgeon.”
She worries about the other women she’s since heard from who received the same treatment in their hometowns. Did they have media connections, an outspoken lawyer, and a medical background to demand their rights? What about the women who simply follow the doctor’s instructions, leaving the woman to get worse?
What has happened to them? #
WTAE Television Interview featuring Tasz
Huffington Post Interview, April 2014, 10 min in or so here:
Estelle Tasz v. Ethicon Estelle Tasz complaint