As many of my friends and family know, my nightmare began in 2015 when I came down with the stomach flu. I had gone to the doctor and received the standard course of antibiotics for a stomach bug. What I didn’t realize at the time, was that the stomach pain, nausea, and diarrhea were going to haunt me for the rest of my life. After several months of suffering I decided to make a visit to the University of Kansas Gastroenterology office. I went through months and months of testing, which resulted in normal test results, so my GI doctor decided to look into my vasculature (arteries and veins).
After reviewing the vascular testing I was diagnosed with multiple vascular compression syndromes: Median Arcuate Ligament Syndrome (compression of your celiac artery which effects your upper abdominal organs),Nutcracker Syndrome (compression of your left renal vein which effects your left kidney), and the main condition Superior Mesenteric Artery Syndrome. Superior Mesenteric Artery Syndrome (SMAS) is a condition that occurs when the duodenum , the 1st part of the small intestine is compressed between the aorta, (main artery in your body) and the Superior Mesenteric Artery. The compression causes partial and/or complete blockage of your stomach causing immense pain and bloating after meals. SMAS is a very rare vascular compression syndrome affecting 0.013% of the population. It often goes undiagnosed until patients experience major organ damage and debilitating symptoms, at which point it is often too late for surgery. In October of 2016, I had surgery to correct this life threatening condition.
At my 6 week follow-up appointment, I received the devastating news that would change my life forever. I had a blood clot in my Superior Mesenteric Artery and I was rushed into emergency surgery. I had 3 minimally invasive surgeries that failed and after increasing pain, it was decided by my surgeon that an open procedure was necessary. When the surgeon opened me up, the first thing they noticed was that my entire bowel had turned brown, which indicated it was dying. My surgeon rushed to remove the clot and after removal my bowel pinked back up. However, my surgeon was not confident that this problem would not reoccur, so he installed a bypass graft from my Superior Mesenteric Artery to my Left Common Iliac Artery to provide adequate blood flow in the event the same area was to clot again.
Nine months later, after a grueling recovery, I am still experiencing the debilitating symptoms of pain after eating, nausea, diarrhea, and chronic fatigue. I contacted the surgeon who performed my original surgery, the SMA transposition, and was told he is no longer performing surgeries. Due to the rareness of these illnesses, there are very few doctors who treat these illnesses in the United States, let alone those who treat it successfully. That being said, I was referred to the only other surgeon in the world, that is known to have performed the same operation I had, whom is located in Germany. I immediately sent my records to him and was shocked by the results. He has identified that my Superior Mesenteric Artery and Bypass Graft are blocked and that I have a condition called Mesenteric Ischemia, which means I am receiving little to no blood flow to my stomach, which explains why I am having immense pain and debilitating symptoms. He stated that I am in dire need of surgery and that he cannot understand why American doctors have not offered to help me. On a positive note, he said he is willing and able to help provide the lifesaving surgery I need, which includes revascularization. He also plans to further investigate the original diagnoses of Median Arcuate Ligament Syndrome and Nutcracker Syndrome, as well as identify if I have any other vascular compression syndromes.. Due to the surgery being International, my insurance has refused to cover the procedure. The estimated cost of my surgery is $30,000 USD. I will also need to pay for transportation, lodging, and food for myself and one of my parents to accompany me on the trip. Any remaining funds after my trip to Germany will be saved and/or used for future medical expenses.
In the meantime I am a ticking time bomb. If I were to have a clot at any point, it is possible that I could lose my entire bowel and possibly die within as little as 12 to 24 hours. As one doctor put it, your Superior Mesenteric Artery is your lifeline and without it you will die. I have went from a determined and very active young female to a sickly individual who rarely leaves her home unless absolutely necessary. Time is running out and I need all the help I can get.
My current goal is to raise $50,000 by November 28th, which is the date of my first consultation in Germany.
I want to thank everyone in advance who has taken the time to read my story, share, and support my lifesaving surgery and journey to healing in Germany. Every penny counts, no amount is too little, and even if you are unable to contribute, please share this page with your friends, family, and coworkers.
You can follow my story and the latest updates on Facebook by searching: @UnitedBehindNicole
If you would like to make a private donation I can be reached at: firstname.lastname@example.org
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