To the attention of:
Barack Obama, US President;
Tom Corbett, Governor of Pennsylvania;
US Senators from Pennsylvania: Patrick J. Toomey, Robert P. Jr. Casey;
US Representatives from Pennsylvania: Allyson Y. Schwartz, Bill Shuster, Chaka Fattah, Charles W. Dent, Christopher P. Carney, Glenn Thompson, Jason Altmire, Jim Gerlach, Joseph R. Pitts, Kathleen A. Dahlkemper, Lou Barletta, Mark S. Critz, Michael F. Doyle, Michael G. Fitzpatrick, Patrick Meehan, Robert A. Brady, Tim Holden, Tim Murphy, Todd Russell Platts;
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I am a 46 year old, female registered nurse. I have been a nurse since 1993, when I graduated from nursing school at the age of 28. I originally graduated with a BA in Psychology, & then I went back to school and graduated with a BS in Nursing. I knew from the moment I set foot into my first class in nursing school that I wanted to work in the specialty of critical/intensive care. I loved being a nurse. I started working in the cardiac intensive care unit upon graduation from nursing school in 1993. I loved caring for people who were extremely ill, for it afforded me the opportunity to make a difference in the lives of my patients & their families in a very special, fast-paced environment. I never had a patient whom I could not make smile, regardless of their condition. Little did I know that my nursing career would be cut short so quickly.
On August 31, 1995, I went to work just like any other day. I had no idea when I awoke that morning that this was going to be my last day working as a bedside nurse. I was getting my patient out of bed so she could sit in a chair for a while. My patient was on a ventilator and she was not fully conscious, so I had to use a machine called a Hoyer Lift to help me get her to the chair. The Hoyer Lift is something like a hammock on wheels. I had another nurse helping me out. We got my patient into the hammock and then we began to hoist her into the air so that she could be wheeled over to the chair. I had my arms underneath the hammock that was holding her, just in case she should fall out of the hammock, while the other nurse was maneuvering the wheels of the lift toward the chair. The wheels became stuck on the side of the chair, and the other nurse was trying to separate the lift from the chair. While she was doing this, the hammock began to sway back and forth, and, in a twist of fate, my patient started to slip out of the hammock and toward the cold hard floor. I caught her, preventing her fall. Since she was semi-conscious and on a ventilator, so she was “dead weight”, and she weighed in at 250 pounds. I had previously undergone back surgery (which was a success), and when I caught my falling patient, two of my vertebrae smashed down onto each other, squeezing the disk between them out. This left the nerve in between the two vertebrae being crushed by the vertebrae. I also tore my rotator cuff in my shoulder. My nurse manager told me that I should have let my patient fall to the cold hard floor instead of catching her and thus injuring myself. I was appalled by her response and felt completely unappreciated.
My injuries necessitated two subsequent surgeries – a spinal fusion and a shoulder surgery to repair my rotator cuff. The spinal fusion was in my lower back, and it involved opening up my back and my stomach in order to get to my spine from the front and the back. It also involved harvesting some bone from my own hip to use in the fusion. It was a very involved surgery, and the recovery was extremely painful and complicated. I have never been the same since that back surgery. I live in constant chronic pain. I was subsequently diagnosed with Fibromyalgia, and then RSD/CRPS. I was forced to go on workman’s comp (to collect workman’s compensation insurance). I was on workman’s comp for 12 years, during which time I was videotaped at my home and followed and videotaped every time I left my home, which was quite infrequently and usually involved a doctor’s appointment. I was shown these videotapes in an attempt to stop my workman’s compensation insurance which, of course, failed, since my case was 100% legitimate. My point in telling you all of this is that, from the moment of my accident, I was disrespected – first by my nurse manager and then by the workman’s comp insurance company. This disrespect led to a severe decrease in my self-confidence and inner strength. After 12 years of being videotaped, followed and harassed, I finally made the decision to end my workman’s comp case. I could no longer stand to be treated like a criminal when, in fact, I was legitimately injured while putting my own safety on hold in order to save my patient from further harm. It is because of this that I was forced to begin coverage by/under my husband’s health insurance company.
Since my diagnosis, my RSD/CRPS has become quite complex in nature. I suffer from severe chronic pain all over my body, but in my lower back and both legs in particular. My entire body is swollen with fluid – my legs are so swollen that I can hardly walk without the assistance of a cane now. I can no longer stand for more than a few minutes without having to sit down due to the horrific pain. Even driving is difficult, because it involves having to lift my leg up and down, from the pedal to the brake and back again. I can no longer go shopping or marketing for food. I cannot even go to my doctors’ appointments without having a member of the office staff come downstairs and get me with a wheelchair and wheel me up to the office. I also experience severe sweating from my RSD/CRPS. The sweating is so bad that I can hardly go outside during the summer months, and, even in the winter months, sweat literally pours down my body and my face when I am in a store where it’s warm inside. I suffer from rashes all over my body, temperature changes in both of my legs and frequent infections. Last year I was hospitalized three times for cellulitis and staph infections. I am currently on an antibiotic due to another infection in both of my feet. The burning pain is almost constant now. I get sharp shooting pains in my back and legs that feel like someone is sticking me with sharp needles. When I take a shower, the water feels like thousands of needles hitting my skin at once. I am awakened from sleep by the pain. As a result of some of the pain medication I had to take, I developed such severe dry mouth that I ended up losing all of my natural teeth. I wore upper and lower dentures for over a year, during my thirties. Then I finally had dental implants placed on top and on the bottom. However, due to my compromised immune system from the RSD/CRPS, I developed a severe infection in my lower jaw. This eventually went into the bone of my lower jaw, necessitating more surgery to remove the lower dental implants and place a drain in my lower jaw. I spent that entire summer inside of a hyperbaric oxygen chamber in order to facilitate the healing. My knee joints have been so badly damaged that I now need two knee replacements. I have developed degenerative disk disease and permanent nerve damage in my lower back – I will have to live with this for the rest of my life. I am a complete physical mess, and I live with more physical and emotional pain than any person should ever have to deal with in one lifetime.
Being diagnosed with Fibromyalgia and then with RSD/CRPS was devastating. Nobody believed that Fibromyalgia even existed, and still, to this day, some doctors still don’t believe. And the RSD/CRPS is so highly misunderstood by so many doctors that it was very difficult to receive the treatment that I so desperately needed and so honestly deserved. Finally, after many misdiagnosed years, I was lucky enough to discover Dr. Robert Schwartzman of Philadelphia Pennsylvania. He is a leader in the field of RSD/CRPS and I am truly blessed to be his patient. People literally come from all over the world to see him – from many different countries. He was involved in RSD/CRPS research and in providing the “Ketamine Coma” treatment in Germany. Now he provides RSD/CRPS patients with both in and out patient ketamine infusions. I initially began receiving ketamine infusions through Dr. Schwartzman as an outpatient. I would get three infusions a week for 2 weeks whenever my symptoms would flare up. Then, about 6 years ago, my legs and feet swelled so severely that I could not wear shoes. I had to sleep in a chair, for I could not stand to lie down without severe pain. It was then that Dr. Schwartzman admitted me to the hospital to receive ketamine intravenously around the clock, as an inpatient. For five days I was in the ICU receiving a constant drip of ketamine, and the swelling in my legs and feet went away. So did the majority of my pain. In fact, with the ketamine drip I felt like my old self again, just like I did before my accident in 1995. I did not necessitate an inpatient stay after that, but did require some outpatient booster ketamine infusions.
Presently I am in desperate need of hospitalization for 5 days, in the ICU again, for an around-the-clock, intravenous ketamine infusion, as ordered by Dr. Schwartzman. As I previously described to you, I can hardly walk, cannot sleep, can hardly drive and live in constant, severe chronic pain. I have infections, swelling of my entire body, temperature changes, etc. I am currently a patient at a wound care center for my infections in my feet, cannot stand from a sitting position without horrific pain in my knees, etc. I could go on and on, but I will stop explaining my symptoms now. The REAL problem now is that I am no longer receiving workman’s compensation insurance, so I am currently covered by my husband’s health insurance company, which happens to be AETNA. The plan we have is called AETNA CHOICE POS II. It is a high end plan that is supposed to cover the majority of our health care needs. My husband’s job takes a good portion of his salary from each of his paychecks to cover the cost of our health insurance with AETNA. We don’t have a choice when it comes to choosing which insurance company to go with, for his job only provides one insurance company to its employees – AETNA. The problem is that AETNA DOES NOT COVER INPATIENT OR EVEN OUTPATIENT KETAMINE INFUSIONS FOR THE TREATMENT OF RSD/CRPS. Even though it has been proven, via numerous studies, that Ketamine can not only successfully treat the symptoms of RSD/CRPS, but that it can also, in some cases, actually prevent the RSD/CRPS from advancing or getting worse, AETNA still refuses to cover it. I was told by Dr. Schwartzman’s office staff that it would cost between $30,000 – $50,000 for a 5 day inpatient stay in the ICU, receiving intravenous Ketamine around the clock, which is what I was told by Dr. Schwartzman that I need. My husband and I cannot afford this, despite how desperate I am to have the treatment that I feel that I deserve and that I know from past experience will bring me relief. I read somewhere on the internet that AETNA IS THE ONLY INSURANCE COMPANY TO DENY IV KETAMINE INFUSIONS FOR THE TREATMENT OF RSD/CRPS.
Despite my worsening physical and emotional state, AND despite my diagnosis of RSD/CRPS by Dr. Robert J. Schwartzman, MD., a leader in the diagnosis and treatment of RSD/CRPS, AND despite the fact that inpatient, intravenous, round-the-clock Ketamine infusions have helped me tremendously in the past, AND despite the fact that intravenous Ketamine infusions have been proven to successfully treat RSD/CRPS , AETNA STILL WILL NOT PAY FOR INTRAVENOUS KETAMINE FOR THE TREATMENT OF RSD/CRPS. I am in desperate need of this treatment. My husband and I are not wealthy by any means, but he still makes too much money for me to qualify for any medical aid from the state. Ironically though, he doesn’t make enough to pay for me to receive the Ketamine treatment. I’m stuck in the middle of these two extremes, and I am falling through the cracks of the system. I have not been able to work since August 31, 1995, the date of my accident. I did have one part-time job in 2007, which lasted for several months. It was a sedentary job that involved phone work, which was all I could physically accomplish. Now, however, even that type of work is too physically demanding for me, given my current deteriorating condition. Because of my inability to work since my accident, I have not earned enough work credits to qualify for unemployment insurance either.
I fear ending up in a wheelchair permanently if I do not receive the Ketamine treatment that I both need and deserve. I was a great nurse, always being an advocate for my patients and “going to bat” for them whenever the situation called for such actions. I cared deeply about my patients, so much so that I ended up placing their health and welfare ahead of my own. I loved caring for my patients and their families during their hour of need. But now that I am the patient, it seems that nobody is “going to bat” for me. Nobody is placing my health and welfare first. I know what is wrong with me and I know how to treat it. I even know which doctor to go to for help. The only missing piece in this puzzle of horrors known as RSD/CRPS is getting my health insurance company to pay for my proven treatment. If there is some way – any way – that you can be of assistance in getting AETNA to do their job and pay for this proven treatment for RSD/CRPS, I would be eternally grateful. I am willing to go to any extreme to receive the treatment that I deserve. I will do interviews with anybody you want and/or tell my story to the public if that is what it will take to make this problem of nonpayment by AETNA cease.
Thank you so very much for taking the time to read my “novel” of a letter. I look forward to hearing from you in the not-so-distant future!
Sincerely,
Allycat, RN
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