Hope Pagano: Hope for the New Year Despite Lupus Following Transvaginal Mesh
December 31, 2012 ~ “I had originally had my surgery scheduled December 2010. I cancelled it because on the internet I saw 1,900 mesh complication complaints”~ Hope Pagano.
Hope Pagano, 49, got scared when she saw those reports. The Long Island mortgage broker with a thick New York accent was not going to have her incontinence treated without knowing more. The problem had developed after the birth of her second child.
Whenever she coughed or sneezed she would experience an escape of urine. When it got to the point she had to wear a pad daily she sought help.
Acting as her own medical advocate, she checked with her NY State healthcare system provider to find the best doctor in her area of Huntington, New York. The doctor she went to consult was the ob-gyn who had delivered her second child.
He told Pagano she would need a sling to hold up her urethra to treat her stress urinary incontinence (SUI).
On his desk was a thick, clear acrylic paper weight. Suspended inside was a small piece of blue Gynecare Abbrevo mesh (Johnson & Johnson), a small ribbon of a sling minus the harpoon like anchors which would be necessary to attach it permanently to her muscles and ligaments. Pagano was told the small mesh could be easily adjusted or removed if there were any complications. It looked like Velcro so she thought it could be easily adjusted if it caused discomfort during sex or trouble urinating.
He went on to explain any complications she saw on the internet such as ruining you sex life were due to a different mesh which he identified as made by the C.R. Bard company and caused by doctors who did not know how to implant it.
What she wasn’t told was that the polypropylene petroleum-based mesh sling product would be permanently affixed using steel hooks to pull the sling tape through her vagina. See Abbrevo brochure here.
So far the U.S. Food and Drug Administration (FDA) has reported (here) from January 1, 2008 to December 31, 2010 1,503 reports of complications associated with mesh used to reinforce the pelvic floor to prevent prolapse and 1,371 complications associated with stress urinary incontinence repairs with mesh. The FDA database is thought to represent anywhere from 1-10 percent of real life complications.
Behind her ob-gyn on a shelf was a caricature drawing showing a doctor in scrubs and a surgical mesh holding up what looked like a tennis net in a congratulatory way. Beneath was written “Dr. Mesh” referring to her doctor’s practice partner.
“I got the real deal,” she thought.
It was never disclosed her doctor might be on the payroll of the mesh maker. She didn’t think to ask. Besides the outdated Burch procedure was never done anymore she was told and neither was a sling or hammock made of pig intestines and implanted through the abdomen. That was more invasive and would lead to more down time while the mesh procedure was “minimally invasive” meaning she could be on her feet within a day.
A second opinion from a doctor in Stony Brook, Long Island confirmed the Burch procedure is outdated (using stitches only) and no one does the Burch procedure anymore; the mesh is the gold standard. The doctor even gave her back her co-pay.
The Stony Brook doctor confirmed her ob-gyn was such an expert in mesh implants that he was called by industry to train other doctors. Pretty good credentials she thought but still, there were those 1,900 mesh-injured patients on the internet.
“He said to me you think about one million people who have had the mesh and only 1,900 have had complications. That’s a very small number.”
Resigned to Mesh
“I remember sitting at a light at Route 25 and crying and saying I guess I have to suck it up and do this mesh.”
Hope Pagano had the mesh implant on Friday, May 13, 2011 at Huntington Hospital on Long Island. At the same time she got the Abbrevo TVT, she had a balloon ablation procedure to stop having periods which were irregular and accompanied by painful cramping.
Pagano says she was handed two folder brochures, one for each procedure. She says she was not made aware of anything she should be concerned about.
“I got what I thought was the flu three weeks after my surgery and it never seemed to go away,” she says today. A return to the doctor and she was told the mesh was fine. Pagano would have to come home from work in the afternoon to take a nap. She had headaches and a pain in the abdomen. The doctor said he would give her collagen shots to “beef up” her vagina to put it back in its place. He kept checking the mesh and blamed the internal exams on her ongoing pain. It would get better she was told.
Finally, during one internal exam Hope describes as the “internal from hell,” something hard and plastic began coming out of her body. Hope began to panic and upon leaving his office she and headed to the North Shore Hospital Emergency Room with her husband. Her doctor called the cell phone and ordered her to turn around and come to his office. Pagano says this time he was very gentle when he did the exam and pulled out a piece of plastic.
“We looked at each other and said what the F** is that? The doctor said he would take it to the hospital. My husband said, ‘Take a picture. It belongs to us.’ ”
“The doctor has never to this day indicated he knew where it came from; he insinuated I put it there myself,” says Pagano, who later saw the same plastic that looked like a Chapstick top image contained in the patent for the balloon ablation machine. Three other doctors also confirmed her suspicion that it was a non-injectable catheter cap.
She filed a claim against the doctor with the New York State Health Department.
Instead of an apology, Pagano says she received a letter from the doctor October 2, firing her as his patient.
“I never saw him or spoke to him again.”
The Pain Continued
But even the removal of the catheter cap didn’t stop the pain. Her hips hurt all the time even though she had them adjusted by a chiropractor. Pagano had an elevated fever and her fingers turned blue. And she still had the flu-like symptoms. Despite a prescription for Zithromax (Z-Pac), and Tamiflu Pagano says she was not getting any better. Every day around 3 p.m. she would begin to get tired and feel a debilitating headache coming on. Lights and sounds started to bother her and make her very irritable.
Because of the blue fingers, her new doctor ran a series of blood tests just to “rule out things.” Blue fingers and toes and reduced circulation can be a symptom for Raynaud’s disease which is also a common problem for people with the autoimmune disease, Systemic Lupus Erythematosus (SLE).
With lupus, the body’s immune system turns on healthy organs and tissues resulting in chronic inflammation of the brain, kidneys, blood, skin, heart and lungs. While the cause is unknown it can be triggered by something in the environment, through genetics, or certain medications.
Both she and her new doctor were surprised when the ANA test came back positive for an autoimmune reaction, possibly lupus, going on in her body.
Pagano was now referred to a rheumatologist.
“I started reading about lupus on the web and was scared to death. I went to the rheumatologist to have more extensive blood test run, and again told not to worry that the likelihood that I had lupus was very slim. The next day I woke up with a painful rash on my chest and neck and was prescribed cream by my primary physician and told to stop reading about lupus on the web. Later that week, I got the news that my blood work came back and I had no vitamin D in my system and that I had tested positive for lupus.”
Systemic Lupus Erythematosus (SLE) is a long-term autoimmune disease that usually takes years before it is diagnosed, often mistaken for other maladies.
Pagano was prescribed a medication normally used to treat malaria that is known to affect the way a patient sees the colors of green and red but has been successful in putting lupus in remission. Instead of improving she continued to get worse suffering ocular migraines, joint pain and fevers, all within eight months after surgery.
“I was supersensitive to sound and light and my doctors thought I was having a nervous breakdown. I had no short-term memory so thought I had dementia or Alzheimer’s disease. There was a reverse echo, my brain had become so raw that I was having a paranormal experience; it was scary. I was getting psychic; people think you’re nuts. I’d hear the lines before they said it on television shows. Finally I was in the depths of despair asking God for help.”
Pagano says it was her sister who connected the dots and pointed out how sick she had been since her mesh implant. Even though she was on the medication the lupus symptoms continued to progress. The medication wasn’t working. Pagano told the doctor she felt her symptoms wouldn’t improve with the mesh in her body. He concurred there was only one way to find out whether the mesh had anything to do with lupus and that was to get it out.
Since lupus usually takes years to manifest why did Pagano think it may be linked to mesh?
“All I can tell you and other doctors have said if I didn’t have lupus before the mesh surgery and I got it afterward the mesh had to be implicated. I have a thyroid issue so every six months my blood was tested. No one ever found lupus.”
“I’ve got nothing to lose, I cannot even think, I’m getting worse and the lupus textbook symptoms were coming on like gangbusters. I knew I would be dead it was so fast. My sister said you’ve got to get this out,” says Pagano today.
More research followed and she found that despite what her mesh implant doctor had told her about the ease of removal, mesh was a permanent implant and not easily removed.
“I had to be extra careful to make sure the doctor I chose to perform the removal of the mesh was skilled in this area, which was not easy to find out.” A patient advocate gave Pagano the name of Dr. C. Y. Liu who was working out of Lenox Hill Hospital in New York City, though he also practices in Chattanooga, TN. More on Dr. Liu here.
The mesh remains in the New York hospital vault.
Pagano recounts Dr. Liu removed the mesh on September 4th, 2012, “And within one week I was able to think again. My 12-yr-old daughter said ‘Mommy I forgot what you were really like.’ I could speak to her without that sharp edge from the thorn in my head.”
Pagano says feels much improved from before. Her headache went away within one week. The rash went away and she doesn’t run a fever anymore, but there is the residual pain like an ice pick in her pelvic region. The surgeon said there was a lot of scar tissue left in the area after the mesh removal.
She still has incontinence, but what’s worse is she still has SLE Lupus and Raynaud’s disease as confirmed by a positive ANA and Anti-DNA tests.
Doctors will monitor Pagano’s blood work and progress over the next year or so to see if she’s able to get the lupus under control. In the meantime her sister has found on the FDA’s adverse event database at least six other mesh-injured women also developed lupus. Men with hernia implants also using polypropylene mesh have also reported autoimmune disease followed.
Together she and her sister are researching the components of mesh and what chemicals it contained which may have triggered the lupus in the first place.
Chemical exposure has been reported to trigger lupus such as TCE, the toxic industrial solvent, used to degrease airplanes at one time. They’ve found evidence trichloroethylene (TCE) was used to clean mesh in at least one study.
Looking for Others
“Hopefully telling my story, describing my symptoms, and sharing my progress will help other people suffering to be diagnosed sooner rather than later. It seems the medical community loves to tell sick people they are crazy!”
Pagano is starting a website www.GetTheMeshOut.com which she hopes to register as a nonprofit organization to help raise funds for people who cannot afford surgery to remove mesh. She hopes to hear from others suffering from autoimmune disease after their mesh implant surgery.
“Big Pharma refuses to do the testing necessary to link the Mesh to auto-immune diseases like lupus, so it is up to us Meshie’s suffering with auto-immune issues to band together as a quorum of common suffers who cannot be ignored.”
Pagano’s Topix page is Prolene Mesh = Autoimmune Disease