Tuesday, June 29, 2010

Confessions of a Cyster

I wanted to share with you a new blog to the CF community that I am very much enjoying. Stacey has quite a way with words and her posts (and pictures) are quite entertaining. She recently started a series detailing certain segments of her life and it's amazing how many of our experiences overlap. I encourage you to stop by her blog, become a follower and say hello.

Growing Up with CF in the 70's and 80's...

1977 ~ 1981

I'm not sure where to begin, so I'm going to begin at the beginning. I was a sick, sick little girl. I spent most of the second year of my life in the hospital. No answers were ever given to my parents about why I ALWAYS had pneumonia. My problem was that I was of normal weight. I couldn't possible have Cystic Fibrosis, because I was not failure to thrive. Therefore, they refused to even give me a sweat test. Back in 1977 you either had CF or you didn't. They didn't speak of variations in severity and symptoms. My digestion was adequate, so I must not have had the disease.

The medical team must have thought my mother was either crazy or a b%*ch.After a year of hospitalizations, she refused to take me home until someone found out what was wrong with her little girl. Thus, started many years of my mother being my #1 advocate! They finally caved and gave me a sweat test. They were shocked to discover that my sweat test levels were through the roof. I had Cystic Fibrosis. When I improved they referred me to an allergist for ongoing care (what was that about???) and sent us on our way. They gave my mother the facts, which were that I maybe had 10 more years of life ahead of me. Years filled with 2 hours of rigorous treatments each day, many pills, medical appointments, worry, anxiety, grief... I don't remember a time in my life where I didn't know that my life was going to be shorter than most others. My mother was very honest with me, which I appreciate now.

For those who don't know, CF is a progressive and terminal disease that effects the lungs and digestive system. For me, the digestive symptoms are very mild. I do get repeated lung infections. Each infection causes scarring in the lungs. The scarred areas of the lung no longer function, resulting in the need for a lung transplant. In the 1970's, when I was diagnosed, the life expectancy was 12 years. By the time I was 12, it had improved to 21 years. When I was 21 years old, it increased to 32 years. With recent medical advances and more frequent lung transplantation, about 50% of us are living to see the age of 37... I'm hoping I can keep staying ahead of the trends!

From what I remember, my parents divorced soon after my diagnosis. I think my mother grieved about my diagnosis, while my father felt an enormous amount of guilt. As a genetic disease, CF is passed to a child through the parents genes. I think my father felt somewhat responsile for his little girl being brought into this world with a death sentence. I have since discussed this period of time with both of my parents. I have let them know how much I admire the sacrifices they made to keep me alive. The sacrifices were MANY. I let them know that I have never once blamed them for my CF. I actually feel like my life may not have as much meaning if I didn't have this disease. Don't get me wrong...I HATE CF...I just sometimes can appreciate the opportunities and insight that this reality has provided me.

Many of my early memories revolve around treatments or hospitals.
  • I remember being locked in a glass box and screaming my head off. I think I was about 3 or 4 years old. I could see my father, but couldn't understand why he wouldn't rescue me. I remember the look in his eyes...the look of helplessness. It was very hot and I think they were trying to make me sweat. This was not the box they put you in for PFT's. I think it was an archaic way of doing sweat tests???
  • I remember my mother once bringing my nebulizer to pre-school and showing my teachers how to use it. I was sooooo humiliated!!! I remember hiding behind a book shelf in the classroom. I was NOT going to get a treatment in front of all of my little friends. The horror!!! Was my mother trying to ruin my social life or something???
  • I remember recovering from my sinus surgery when I was 5 years old. I was in a room with a little girl who got hit by a Greyhound bus. Her parents never visited. She cried out in pain all day and night. My mother ended up sitting with her as much as she sat with me. That was my first glimpse of suffering and the kindness of my mother.
  • I certainly remember the hour in the morning and hour at night of clapping treatments that I had every single day growing up!!! Not because of being "beaten" to keep my lungs clear, but becuase of the HORRIBLE television my mother made me watch during my treatments. I think I saw every single episode of Pete Rose's morning baseball program...seriously!!! What was with that stupid chicken??? I also had to sit through every Cleveland sports disaster...baseball, basketball, football...I mean seriously!!! I got a little break when my father did my treatment with a little bit of Solid Gold, Hee Haw and Donnie & Marie...whew!

So let's summarize...

1) My first few years of childhood were not quite as carefree as I would have liked.

2) My parents were/are my heroes!

3) I am not my disease, but my disease has helped shape who I am.

4) Advice for CF momma's out there ~ let your child watch what they want on TV during treatments or they may hold it against you forever!!!