My name is Amy Lee Murr. I am 33 years old. I am a blessed mom of two and a wife to a wonderful husband. In 2004, I began experiencing bone loss in my right ankle and foot resulting in me having surgery in 2005, 2006 and 2007. In these surgeries I had several blood clots removed, tendons operated on, fused 3 joints in my right foot, added a link to my ACL in order to fix it, took out depleted bones and replaced them with metal plates, put in 3 screws, put in a battery pack and a bone stimulator. I went through several months, in between surgeries, of therapy and re-learning to walk. The reason for the bone loss was never discovered and for many years could not be found. Still, my health continued to worsen, for unknown reasons at that time. In October of 2011 through January 2012, I had bone loss in my mouth and the roof of my mouth resulting in 8 more surgeries. Still doctors could not discover the reasoning for such bone loss and lack of health. July 30, 2013, I had to have an emergency gallbladder removal surgery.
In January of 2013, I was placed on SSI disability which then immediately placed me on Adult Medicaid. I began seeing my new PCP, An AMAZING doctor, April 29, 2013. He immediately began running normal to serious tests in desperate need to find out what was causing my body to wither away. June 7, 2013 it was discovered that I have Primary Hyperparathyroidism and though it is not definint, going off the damage in my body, it was stated that it quite possibly began when I was 15 (1995). Our parathyroid glands control the amount of calcium in our blood and bones. About 1 in 75 women OVER 50 develop a tumor on their parathyroid gland(s) resulting in Hyperparathyroidism. Notice I said women over 50. I am only 33. This very destructive disease causes serious health problems including early death. There are only a handful of people known to live 25 years with this disease; Most die in 20 years or less of having it. My time is running out. The good news is it can be cured in most patients in less than 16 to 20 mins with the parathyroid tumor removal surgery. Without this surgery, you have Hyperparathyroidism until it destroys your body and then kills you. Which leads me to the reason for this petition.
August 22, 2013, I began seeing the Endocrinologist, at the Jps clinic in Fort Worth, Texas. I was told in that appointment, due to my age and how rare it was to be so young with Hyperparathyroidism, I would be having the surgery to remove the tumor(s). Of course, I was ecstatic in this wonderful news. The doctor ordered a few tests and my new appointment was set for December 31, 2013. I was then told that would be the appointment where we would be discussing the date of this life saving surgery. Unfortunantely, when I came to this appointment is when I was then told I would NOT be getting the surgery. My heart was shattered. I asked him why he was denying my surgery only to be given no clear reason and a few excuses, none of which make any sense. The first reason he gave to me was that the surgery has risks. I could become mute (If a mistake were to be made. The parathyroid glands are very close to the vocal chords). I then stated I did not care. What point is a voice if you are dead for then it cannot be used anyway. I would rather be a mute and be alive to continue to be in my 11 and 12 year olds lives for as long as I can be. The next excuse I was given was that I do not have osteoporosis YET. I then asked, why he would wait for me to have Osteoporosis when it was a known fact that ALL people with Hyperparathyroidism develop SEVERE Osteoporosis, sometimes not repairable even after the surgery. He could not answer it. He only moved on to state that even after the surgery I may not be like brand new. This is something I am very aware of, but, I would be alive and the root of what is causing EVERYTHING in me to deplete would at least be stopped. It would not continue destroying me, or causing new problems. Again I was answered with, You should get a second opinion, and then finished it with I'm sorry but I don't have any good reason to do the surgery. (I, personally, can name many good reasons to do the surgery but the most important is to live.)
Many more tests have been ordered, with no understanding of why he is wasting time repeating tests he has already done, and with the diagnosis already given and proven by those test results to be Hyperparathyroidism. A healthy persons normal PTH is between 11-65. People with Hyperparathyroidism, has the PTH bounce from high to low. June 7, 2013 mine was 108.3. August 22, 2013 it went down to 70.9. Please do understand the ONLY cure for Hyperparathyroidism is for the surgery to take place. This is not a disease that is cured nor managed by medication.
I have contacted my insurance and was told my surgery would be covered as it is considered a medical necessity. Also, finding another doctor in such short timing and getting in is proving to be near impossible. If I have had this disease since the age of 15 I am looking at two years or less, but according to my PCP who is NOW retired, It would be shocking if I made it through this year.
I ask for you to support this for more then just my surgery. I ask for you to think of all those you may know now or once knew that also suffered from an illness that could not be seen physically right away. Think of their struggle and the struggle you may also of had within watching them slowly fade from existence, unable to help, but wanting to do so feeling as if the ones who cared could not help, knowing the ones who could....wouldn't.. My voice has not been silenced yet. I fight not only for my life but for all the lives that may have been silenced already, for the ones who are struggling now with this or something else just as equally depleting of life. I fight for the ones who may have this in the future. I, pray, that none are denied such, for even one life is a beautiful gift to have. I ask that you stand with me. Let us show that we are not statistics. We are people, with families, friends, and we are each worth saving. I may only be one person, but I stand on that which is right and I ask that you stand with me and maybe, just maybe our voices, as one, will be heard. Thank You and God Bless.
- JPS Medicine Specialty Endocrine
Dr. Azhar Afaq, MD
- MD Senior Medical Director, JPS Health and Wellness
Requesting a real reason for the denial of a Life Saving Surgery and wish to receive said Life Saving Surgery
Amy Murr started this petition with a single signature, and won with 32,176 supporters. Start a petition to change something you care about.