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  • Posted November 17, 2012 by
    jadams68
    Location
    Cumming, Georgia
    Assignment
    Assignment
    This iReport is part of an assignment:
    CNN Fit Nation: 2013 Triathlon Challenge

    I Get To Keep My Lung!!!!

     
    My life has always been quite charmed. I am a wife, a mother of three wonderful sons and have a great career as a registered nurse. We moved to Atlanta, sight unseen, in Dec 2004 in order to give our children a more enriched and fulfilling life. Our new lives were progressing well and we started building our first dream home together in mid 2009. The home went up without any lengthy setbacks and we moved into our new home in Aug 2009. Then in Sept 2009 I had a sudden onset of severe chest pain and was rushed to the ER. A CT scan of my chest revealed multiple masses in my left lung. As a registered nurse I had quite a few friends, one of which was a pulmonologist who worked me in to see him the very next morning. The pulmonologist advised me that I had carcinoid tumors and did the first of what would be 12 bronchoscopies. He was not able to fully visualize my airways because quite a few of the tumors were in my bronchus and I was promptly referred to a Cardio Thoracic Surgeon who told me that in his 20 plus years he had never seen a case like mine. He also said I needed to have a L-sided pneumonectomy. As a nurse, I always told my patient's to first and foremost advocate for themselves. I followed my own advise and refused to have my lung removed until they could tell me, with certainty, what my diagnosis was. The Cardio Thoracic Surgeon was not very pleased with me but kept me under his care and performed 7 bronchoscopies under general anesthesia so that he could use a rigid scope. My case was presented before a tumor board and the consensus was that I should have, at a minimum, a lobectomy, which I also refused. There was something in me, a gut feeling, that said that wasn't the answer. At that time the surgeon wrote down his cell number and told me he knew I'd eventually call him when doctors needed to do emergency surgery. I left his office scared but somehow hopeful During that time, and from what I can only call divine intervention, I was offered a position in an Infectious Disease office as an infusion nurse. I accepted the position as it gave me day-to-day contact with a physician that specialized in infections and still left me with the opportunity to support my patients. The infectious disease doctors put me on antibiotics and antifungals in hope that something would help. Each CT scan remained basically unchanged but still I held to my resolve that I was not going to let anyone remove my lung. During my time working in the infusion center I had many patients but one of them changed the course of my life. I had taken care of him for several months during which time we had gotten to know a bit about each other. One day he came in for his infusion and he was very withdrawn and quiet. I had to do a PICC dressing change and I told him that he had a captive audience if he wanted to talk. And talk he did. He told me that his wife was very ill and that she had been diagnosed with carcinoid tumors and was scheduled to have a pneumonectomy. My ears perked up and I in turn revealed my story and told him I had been floundering in the medical system and felt pressured to have the same procedure. He gave me the name of his wife's pulmonologist at Emory Hospital, Midtown Campus and I scheduled myself for the first available appointment they had. When I walked in the pulmonologist, with his presence alone, put me at ease and he asked me to tell him about my health from as far back as I could recall. As I told my story he nodded repeatedly as if he checking off a mental list and finally a big smile came across his face. Then he told me words that I would never forget - "You do not have carcinoids, you do not have cancer, and nobody is going to take your lung. You have Allergic Bronchopulmonary Aspergillosis (ABPA) !!!". He told me I had inhaled fungal spores and my body was having an extreme allergic reaction. I was so relieved to put a name to my tormentor. The pulmonologist told me that he needed to draw some labs and I needed to get some allergy testing to confirm this. He didn't wait for the results and started me on what would be an 11 month course of high dose steroids. Several days later all tests confirmed the ABPA. My new pulmonologist did his first bronchoscopy to get an idea of what the extent of my condition was and to clear my airways. I started to improve while on the steroids but ended up with Cushing's Syndrome and gained about 50 pounds. My face swelled severely and my eyes were slits. I was happy to complete the steroids but still had a couple of relapses and had to take several short doses of steroids. I ultimately had 2 additional bronchoscopies. The first revealed that I had Mycobacterium Avium Complex (MAC) which the pulmonologist felt did not need to be treated. The cultures from my last and final bronchoscopy came back in May 2012 and they had isolated extreme colony counts of Nocardia and I was diagnosed with Nocardiosis. Nocardia typically takes root in the lung but also tends to cause abscesses in the brain. Luckily the MRI of my brain was negative. My pulmonologist consulted with the CDC for treatment protocol and I was started on the recommended 6-12 month course of antibiotics. I am happy to say that as of yesterday, November 16, 2012 I completed six months of the antibiotics and have follow-up appointments with my Infectious Disease doctor and pulmonologist next week. I have to say that through it all I have championed through all the pain and surprisingly my pulmonary function tests were better than most healthy people. I have lost all the weight I gained, however, thin does not mean "fit" and I feel like I still have a long way to get back to my prior level of activity. What I feel is the most important aspect of my recovery was my mindset. I truly never gave up and continued to work every single day, with the exception of days where I had procedures that required sedation or general anesthesia. I left bedside nursing and was devastated but felt I really needed to be a little selfish and put myself first, for once. I now work for an insurance company and have the great fortune to work from home. Although working at home has its positives, I feel like it allowed me to retreat from life. I let myself down, but never my children. I am proud to say I have never missed a soccer game, a karate tournament, a chorus concert , award ceremony or anything that was in support of my children. I am very blessed to have a supportive husband and children and I would love nothing more to build my stamina to play soccer with my son or to take daily runs with my youngest son. During the time I was ill my mother unfortunately went into the hospital and 16 days later passed away from primary peritoneal cancer. That was a true low in my life but it also served to remind me how precious life really is. Regardless, and in spite of it all, I feel truly blessed. Through it all I knew there were people with conditions much worse than my own. I look at Amy Copeland as my most recent example. My final example, though, has to myself. As a nurse I always helped patients and now it's my turn. My mantra is and always will be - ASK QUESTIONS. My question is can I please take part of Fit Nation to champion your cause and help me regain my health. KNOW YOUR OPTIONS. My options are limited. I can either continue to be complacent or I can take the challenge with you to become the best and healthiest person I can be both physically and mentally. And lastly, GET A SECOND OPINION. Well I did more than that, I have my husband and sons telling me to go for it. I truly feel that I heard about CNN Fit Nation for a reason and I would absolutely love to prove to you, to myself and all of your viewing audience that I am up for the challenge. This opportunity would be life altering and allow me to run, swim and cycle my way back to living a full and meaningful life....Hope to hear from you, Joanne
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