Adult in Disbelief: Part 1

I immediately questioned everything that happened to me from a medical standpoint. Recalling nearly every single horrible experience being dismissed as having another stomach virus. This was always the outcome when my very exhausted parents sat by my side for hours and then driving me home just in time for my dad to go to work. Eventually I tried hiding my pain so that I didn't have to see my parents worry about cost of ER trips with no insurance coverage.

My childhood

As a young child I didn't know what insurance was except that it was causing my parents to struggle paying bills. They were always worrying when the next time they would have to find an urgent babysitter for my younger sisters, and rush off to drive 50 minutes to a cold foul smelling place that always instructed to give me a "BRAT" diet. I also had to see a specialist for my sinus troubles. When I was growing up, every one smoked and smoked in the house around young innocent children breathing it in and causing a severe chronic sinus infection for me. The doctors related this ailment with allergies and the not so obvious facts about second hand smoke. I don't recall any medical professionals lecturing the adults about the harmful conditions they were exacerbating. I had great grades in school and I was proud of my eagerness to receive awards for perfect attendance year after year until I had to have my first sinus surgery at age 12. It was the absolute worst experience I had ever endured at that time of my life.

I kept getting recurring headaches and nauseous all the time. The medical professionals dismissed this issue to adolescent and puberty. I went through middle school as a very exceptional athlete. I ran long distance and sprints faster than some of the male athletes. I enjoyed running most of all but I was also great at playing basketball, field hockey, and was very interested in sports medicine and considered studying that in college. As I grew older and after many more different health issues that I fought to overcome, the same seriously painful abdominal experiences never resolved. I had been treated by another specialist doctor for pelvic pain, pressure and debilitating cramps. After a few years I agreed to exploratory laser surgery which showed evidence of endometriosis. No one in my family or closest friends had ever heard of this.

Adulthood

As a young adult woman who had experienced a little more medical troubles than anyone I ever knew, I was determined to stay focused on the good days and work hard to avoid all of the aches and pains that became a part of me and my way of life. The abdominal pain and gut disruption became too prominent and I was determined to figure it out now that I was a full-time hard working adult with insurance. But I was not getting any different explanations or advice on how to get better intestine or colon health. I started losing weight that I could not afford to lose. I refused to eat fast food thinking that every time I do eat that, I will regret it and it could take a week to recover. I began logging everything that I consumed. I was on my very own mission to improve my health.

Fast forward to just a few weeks after my 30th birthday, I became violently ill and that was dismissed as being over emotional after the news of a dear friend that died in war. I believed that I would start to feel better after grieving. Disappointed by the time two weeks went by, I could not eat or think about eating without excruciating pain in middle of my tummy and I was vomiting. I was told that I must be pregnant. That freaked me out because I was told that I had infertility and could never get pregnant. I was actually taking a very strong medication to help with the debilitating endometriosis pain at that time. If I was pregnant then it would be very dangerous and I would have to discontinue immediately. I was not pregnant. That ER trip treated me with antacids and advised me to stick with the all too familiar BRAT diet.

No explanations

I worked in the medical field after high school and actually had just started a nursing program at local technical community college and I was very excited for my promising future. One of the physicians that I worked for insisted that I agree for the staff to drive me across the street and check into the ER. That was the first and only time that I was finally evaluated and informed of what my poor body had been experiencing my entire life. It didn't make any sense and only caused more confusion and head scratching to process the news that I had severe chronic pancreatitis and would be admitted and would have to stay in the hospital for further testing and consultations with more specialists. No one could understand why I had such a chronic disease for this long. My first ER visit was when I was five and this ER visit was when I was 30. The irreversible damage was done and could not be reversed. But some general surgeon assured me that this was just because I had a diseased gallbladder and he would remove it and I could return to work and school in just three weeks. Well I was relieved.

Three weeks passed and my now husband rushed me to the ER because of horrific pain and vomiting. Well I was not better and had another stay in the hospital. This kept recurring over and over. I live in DE and I was transferred to a much larger university hospital in Philadelphia where I would continue a long distance commute every time I had to be evaluated for the same ole chronic pancreatitis. This hospital had the top gastrointestinal interventional physicians who took over my care. After more than two years of the same experiences, I had a delicate upper endoscopy procedure to help keep the biliary ducts open. I was approached by a nurse and asked if I had considered a second opinion. Well this was my second opinion. So could I technically seek a third professional opinion? One of the physicians who I worked for arranged for me to visit one of the very best pancreas experts at the University of Pittsburgh. She arranged my flights and hotel and the consultation visit. I have to admit I wasn't feeling hopeful after all of the other physicians agreed that I had idiopathic pancreatitis, in other words, they had no explanation for my progressive and incurable disease.

After two days of interviews and more testing and imaging studies, I felt that we were being thorough and would find answers to the mysterious illness. The doctor highly recommended genetic testing to be evaluated for cftr mutated gene. This was so technical and way beyond my little medical secretary knowledge. He explained everything and he felt so confident that I said I didn't need to return and my physicians in Philadelphia could have blood work processed and that would give us a definitive explanation. Shocked by the results a few months later, I had an explanation. I was born with this disease and it was absolutely not caused by anything that I did or didn't do. It was very hard to discuss with my parents because I learned around the age 11, that my dad was not my biological parent. My medical news that I was about to reveal could bring up issues that may never have been thought about and I loved my dad because he chose to be my parent. He met my mom when she was five months pregnant with me and had been with us ever since. So I was very uncomfortable addressing this. It brewed up more questions than answers because no one in my mom's family had this disease.

I was then counseled on genetics and being a carrier and the statistical probability was a factor, and not knowing half of my DNA began to weigh heavily on me. I couldn't learn if the paternal DNA had identified a similar issue. Well it took a long time for me to get the courage to make that dreadful call. I left my name and phone number and brief message stating that I only needed a very quick moment of his attention and requested a call back. I still hold my breath anytime I give details about the call. I never told my parents that I made that call. He had no family history of anything similar to what I explained in terms of my illness and recent discovery. That ended the one and only conversation I had.

Read Part 2 here.