REBECCA'S PERSONAL STORY

February 11, 2016 Gastroparesis
Country : USA Satate : California 

My story begins and ends with a plea to lawmakers. Our Declaration of Independence lists our "inalienable rights" of "life, liberty and the pursuit of happiness". I ask you to give me and my fellow sufferers with gastroparesis those rights. There are numerous medications and treatments for gastroparesis in other countries that have not been allowed in the USA. These are approved by the World Health Organization using the same strict standards as our own FDA. Why are these treatment options not available to us? I can only surmise it is because the powerful drug companies here in the USA are keeping them out. Patents held by companies in other countries are a threat to profits. I implore you to write legislation to open up these medications and treatments to those of us that suffer. I have a right to life, and a medication outside of our country is the only thing that sustains my health and life. I have the right of liberty. Give me that legal right to obtain my medication abroad and still live in this country. I have the right to pursue happiness, which can only be if I am healthy. On my medication I am healthy, happy and a productive contributor to society. My story: I was a totally healthy person until the summer of 2006. I experienced a sudden onset of nausea and pain upon eating. Six months of testing revealed I had idiopathic gastroparesis. I was put on Reglan for four weeks. It did nothing for me so my gastroenterologist stopped it. Then I began to have uncontrollable movements: tics, shaking, fasiculations, muscle cramps, Dystonia.The neurologist diagnosed me with Tardive Dyskinesia from Reglan. It was permanent neurological damage. The next medication for gastroparesis I was given was Zelnorm. This worked great. I was able to eat without pain, nausea nor the chronic constipation that accompanies gastroparesis. I was on this over four months before it was FDA banned. I then had a pacemaker surgically placed on my stomach. This also did nothing to help me so I had it removed in November 2007. I was 90 lbs, stomach flu like symptoms of vomiting and nausea all the time. I was offered a feeding tube, but refused it. It would do nothing for my nausea and I didn't want to be kept alive like that. Do you remember when you had the stomach flu? Would you want to live the rest of your life like that? So I went online to write my goodbyes to my G-pact friends. G-pact is an online support group: Gastroparesis Patient Association for Cures and Treatments. When I logged on someone had just written they got Zelnorm from an online pharmacy. I clicked the link and the website looked like a scam. I was dying anyway so I gave them my credit card number. Eight days later I I got my medicine, Zelnorm, and lived a happy, productive life for over four years. Then the supply ran out. The company had purchased Novartis's stock of Zelnorm and it was gone. My doctor put me on erythromycin, which didn't help, but it was my only option, or so I thought. I lived miserably for a year or two until August 2014. I began to have severe pain and couldn't keep any food down. I got down to 90 lbs again then went into starvation ketosis in December 2014. My brain was stealing from my muscles and vital organs to die last A CT Scan on December 12 showed the surgeon left a looping wire lead attached to a stomach nerve from my 2007 removal surgery. That was the source of my pain. My hospital stay was good at first in that the cardiologist saved my heart.But then she and another doctor thought I was anorexic instead of having gastroparesis. They filled me with massive doses of benzodiazapines and had me eat 5 trays of food that was all indigestible for a person with gastroparesis. I passed the psychiatric exams with flying colors and the doctor told me to leave. I couldn't digest the food they made me eat. My primary care doctor read the reports and was angry. He took me off all medication since I was now unintentionally addicted to benzodiazapines. I detoxed at my mom's house. 3 days of Hell, then a half-life of 3 weeks of half-Hell. Now it will be 2 years if occasional reoccurring insomnia, hallucinations, nervousness, ringing in my ears and other horrible symptoms. I had to take harsh laxatives to rid myself of the indigestible food, which came out as identifiable as it went in. On December 27, 2014 I was 85 lbs, dehydrated and hearing dead family members and friends talking to me. My husband and my mom awaited my inevitable death.I slept 2 hours and woke up Sunday, December 28 at midnight and I felt stronger and better. I ate some gastroparesis safe soft foods. I was skin and bones. My muscles were gone. It took all my strength to use a walker and get out of bed to walk 15 steps to the toilet. My doctor ran tests and was surprised that the starvation ketosis only gave me severe muscle loss but did no damage to my internal organs. My gastroenterologist was shocked that I didn't die, and had never seen anyone recover from what I went through. So now I am rebuilding my muscles through physical therapy.This is hugely difficult work, but I am doing it. It is no surprise that I lost my job. I am still at my mom's house and cannot return to my home because it is at 8,000 ft and the doctors say I'm not strong enough for that yet. I am on Marinol for nausea and pain. I am on Linzess for chronic constipation. Palative Care. Neither of these help the real problem. I need a prokinetic. I found Zelnorm online again. Novartis's Mexico company is making it under a different name. I also found Gasmotin, Japan's prokinetic, used safely in 33 countries since 2006. I have ordered both of these, but they may get confiscated at the border. If that is the case I will have to leave this country and live abroad. I find this reality intolerable. Are we not the "land of the free"? Where is my "inalienable right" to life? Where is my liberty to medicines approved by the World Health Organization? Why can't I, and others like me, pursue happiness? We suffer when answers lay outside our borders because USA drug companies keep a monopoly. It is up to lawmakers to fix this problem and legislate our "unalienable rights" here in this country. Until then I must do what I need to do to stay alive. That is my right as an American, as I see it. If it is not my right to get the medicine I need, I must change citizenship to a free country. If so, I suggest we all do that too.

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