I was born on August 20th, 1975. I was a seemingly healthy baby, born into a family with no known history of Cystic Fibrosis. I thrived for my first year of life. It was the second year that became more challenging. I was in the hospital most of my second year of life fighting pneumonia. However, I was not "failure to thrive", so they did not even think to test me for Cystic Fibrosis. Back in the 1970's, CF was not seen as a disease with varying levels of severity. If you had it, you had all of the symptoms and were doomed to a very short life-span.
Upon the absolute insistence of my mother, who refused to take me home from the hospital until the cause of my repeated illnesses was discovered, the medical team finally did a sweat test. My number was through the roof. At the age of two I was diagnosed with Cystic Fibrosis. The prognosis was extremely grim. My mother was told that I would continue getting lung infections until my lungs were too scarred to work properly. I would be lucky to live to see my 12th birthday.
Funny thing is...doctors don't ALWAYS have it right. Since my diagnosis there have been many medical breakthroughs, and I have been blessed enough to keep much of my lung function. The life expectancy had jumped to 37.4 years! During my entire childhood I had to have my parents pound on my back twice a day to help clear my lungs, along with doing nebulizer treatments. As I aged, new forms of airway clearance were developed to give patients, like myself, more independence. I will write about these in an upcoming blog post.
So the details about my case are CF are that I have the Delta F508 and R117H gene mutation. I am pancreatic sufficient and have not yet needed to take enzymes in order to digest my food. I am wondering if that time is nearing, though. So far I do not have evidence of CF related diabetes.
After being a very ill toddler and having a sinus surgery at the age of 6, my health improved. I was a pretty normal elementary school child. I would always require antibiotics after an illness, but I never had to have a tune-up with IV's. In high school I got a very serious case of mono that required me to miss a few months of school. That was the sickest I had been since I was a wee little tot, but I made it through. That illness actually helped me get my priorities straight and led me to the realization that I wanted to got to college to be a health care social worker. It's funny how sometimes good can come from bad... I was a very active girl in my early 20's. I got a raging case of C diff in 2000 that landed me in the hospital for a week, but, again, I recovered. I ran/walked the Mardi Gras marathon in 2002 and was very committed to staying fit.
I also got married and got pregnant with my daughter (in that order) in 2002. I had another child, my son, in 2006. You can read more about my family on the "My Family" page. I never, ever ignore the fact that I am truly blessed for all that I have and all that I have been given. My lungs did take a bit of a hit after each child, but I was able to gain back the lung function with time and oral antibiotics. In 2007 I bid farewell to my gall bladder and appendix, after 9 days in the hospital trying to figure out my belly pain. I had no gall stones, the silly little organ just decided to stop draining altogether. Pain doesn't even begin to describe what I felt for that nine days. I thank the heavens for Dilaudid every day!
In 2006 I started working out regularly, doing a 1 hour aerobics class 4-6 times per week. I never felt better. I was working full time, my family was complete and my lungs felt...well...not horrible. So, that led to me "forgetting" about going to CF clinic...for 3 years. It was not hard to do. I was super busy. I figured if I was going to have a decline in my health I would know it and I would immediately make an appointment. I had no acute lung issues during these years. Although, during these years, I was frequently clearing my throat (which was new) and I had a bit of a junky cough (which was also new). These symptoms just seemed more annoying than anything else.
What a surprise when I finally made it to clinic in May of 2009 to discover that my lung function had decreased by 30%! I felt deflated. I felt like I was newly diagnosed all over again. For a few years I was able to forget. Those days were over. After a year on oral antibiotics that only helped me recover 6% of my lung functioning, we decided that it was time for my first "tune-up" (round of IV antibiotics) in June of 2010. I was frustrated when there seemed to be no improvement from the IV's. However, it was during this treatment that we discovered that I have a new infection growing in my lungs called Mycobacterium Abssessus. This is a nasty bacteria that is similar to Tuburculosis, but is not contagious. It takes over a year of intensive multiple antibiotic treatment to eradicate. During my treatment for the m. abscessus, I was also diagnosed with Mycobacterium Avium Complex. This one has proven more difficult to suppress. Both can be suppressed, but not cured. If they were allowed to fester in my lungs they could cause devastating, irreversible damage.
That brings me to today. I am still crazy, busy. I continue to work full-time, parent my 2 (sometimes 3) children, work out 4-5 times per week, and manage my health. Some days I feel fabulous, some days not so much. I started this blog to allow me to rant about MY life with CF. It's really hard and really sad at times. The treatment that I am going through right now is intense and it is difficult. My blog is an outlet, that also allows me to update family and friends on my progress without me having to repeat myself over and over. Even though I know my blog is not for everyone, the support I do get from my blog readers is invaluable! I have no doubt that I will recover, I will eradicate this m. abscessus and MAC and I will get back to the point where I only need to worry about maintaining my CF lungs!
