Jean's hope for recovery
Organized by: Linnea VanTassel
One week until surgery!
May 08, 2016
Jeanine Harsen is a dear friend, and a loving generous woman. After years of suffering, she has finally discovered the cause of her illness, and more importantly, she has found a doctor who can put her on the road to recovery. The flight from upstate New York to UCLA medical center, plus the many nights of accommodations will be very expensive. Upon returning to NY, Jeanine will require in home care, which will be financially draining. Help us, Jeanine's friends, help Jeanine and her husband Ed with this financial burden. Below is Jean's story in her own words.
I've been battling baffling, sometimes rare auto-immune diseases for over a decade, with increasingly debilitating symptoms. I've been diagnosed with Hashimoto's thyroid disorder, Celiac disease and RA, with very little medical intervention. My hearing and balance have been damaged by Mennierre's. Sjogren's has badly damaged my teeth. In 2011 we learned I had Lupus (SLE); by 2014 vasculitis had so badly damaged my right eye it required surgery - and my symptoms are back, in both eyes this time. The nerves in my spine and groin have become inexplicably damaged. My ability to walk, hear and complete basic tasks has been eroded to the point where we are considering assisted living arrangements. Pain limits my ability to think, remember or carry on conversations on a daily basis. It's only been during the last six months that we've learned these are all the symptoms of Foreign Body Rejection response (FBR). In 2001 I had a partial hysterectomy and was implanted with transvaginal polypropylene mesh for rectal / bladder repair, involving tissue fasteners and bone posts. As the body tries to break down the plastic webbing, it releases a host of carcinogens and toxic substances that get carried everywhere, which in turn make the body's immune system attacks even more extreme. Micronized mesh particles can end up going everywhere. No testing was ever done to determine the efficacy or safety in the use of TV mesh, I was an unwitting test subject of the FDA and medical device manufacturers under the FDA's 501(K) rule. We consulted with local doctors last fall and Dr. Schlomo Raz at UCLA Medical Center in December. He immediately diagnosed a prolapsed intestine, which is rubbing against the mesh that's eroded through the never-healed incision from 2001. Dr. Raz scheduled my removal surgery for his first available appointment, May 13, 2016. He is one of the few surgeons who completely remove mesh implants, and one of two in the country who is skilled enough to attempt a removal of rectal mesh. We hope the surgery will stop the ongoing poisoning and help me heal. The team at UCLA will completely remove the mesh, fasteners and even dig out the posts from the bone. Dr. Raz is confident that no matter what complications arise, we are one of the rare cases he sees that's absolutely guaranteed 100% improvement. It's possible, even probable, that I'll need extensive reconstructive abdominal surgeries in the future. This is the important first step. If you know anyone who has had polypropylene mesh implanted, please encourage them to see a medical professional who is familiar with and can diagnose and treat FBR. If possible, have them see someone who is competent to completely remove the mesh implant or implants. And if you or someone you love are being told to have a mesh implantation, using your own tissue has no rejection risk and, with a competent surgeon, a high success rate.