I'm writing this entry so you can get an idea of who I am and where I came from. I intend the rest of my blog entries to focus on my new exercise regimen. Without further adieu, my introduction:
I've been consumed by Cystic Fibrosis. I mean, literally I think about it all the time because it takes up all my time. In the last five years, my daily treatments have increased from a half hour twice a day to a whole hour three times a day. That's a lot of commitment for something I never signed up for. But I did sign up to get married and to have children and for them I will do anything to just keep breathing.
I was diagnosed with Cystic Fibrosis when I was 3 months old. I have a box full of all my baby pictures. In it you will find not one single roll of film developed in April 1976. That was the month I spent in the hospital, nearly dying from this disease my parents didn't even know I had. How devastating to find out your newborn baby has a genetic defect that will likely kill her before she finishes grade school. Children with Cystic Fibrosis rarely celebrated a 12th birthday in those days. But times have changed, now half of us live to see our 37th birthday!
When I was 8 years old I started going to a Cystic Fibrosis summer camp in Northern California sponsored by the ever so generous Cystic Fibrosis Research Inc. Camp became the single most important week of my life from the age of 8 through 18. Even when cross infection became a hot topic and most CF summer camps closed their doors I didn't bat an eye. Before the age of 18, I would have rather catch an awful bacteria in my lungs that could kill me than stay home from summer camp. I was going to die anyway, so why not have fun and enjoy living? But after I turned 18, there was college and I suddenly got too busy to return to the place that brought so much excitement and anticipation year after year.
Fast forward to today, where I am 32 years old, married, two kids and a dog in Sacramento suburbia. I don't take risks with my health anymore. I am vigilant with all my treatments and medications. This is not different from the way I grew up, thank god my parents were spared the rebellious teenager syndrome with me, but it's different today because the number of treatments has grown to the point of consuming my day. I can no longer hold a full time job. I am a disabled adult. I drive with a handicap placard in my car. I take over 20 different medications every single day, multiple times a day.
A few days ago I was reunited, albeit online, with an old camp friend. Before sending her a note, I browsed through the pictures she had in her Facebook album. I saw that she had one picture with the caption, "on my way to Stanford to get evaluated for transplant." I immediately thought well this is typical for a cystic our age. I wonder if she has been saved by a double lung transplant yet. Or maybe she's still waiting for one. Regardless, being thirty something and living with this disease you kinda have to expect this kind of hurdle. I have to admit, I was a little jealous. She was either already sick enough to get a transplant or maybe she'd already recovered from one.
A lifesaving double lung transplant is definitely something I want to explore when the time comes. But I'm not sick enough yet. I want to use up these old lungs as much as possible but at the same time, the life post transplant can look glamorous to someone in my condition. That is of course if you don't end up six feet under first. Transplants are not fool proof yet. They are not a guarantee to a better quality of life, just a chance at one.
I consider myself a fairly high functioning cystic, even as much as my lungs have deteriorated over the years. I keep close tabs on how well I am fighting this terrible disease by measuring my FEV1 at my doctor visits. I can usually tell you exactly what it's going to be before I finish the test. For the last year or so I've maintained a baseline of 1.50 Liters. However, at my last "well checkup" appointment two weeks ago my FEV1 was 1.38 Liters, and I wasn't even sick. In fact my doctor commented on how clear my airways sounded. I was doing great!... for me.
A healthy female at my age and height should have an FEV1 of about 3.0 Liters. In laymen's terms I like to describe the FEV1 as "lung capacity." As you can see I'm falling below the 50% marker even though I consider myself hyper-compliant with treatments. The typical threshold to start considering a double lung transplant is when your baseline FEV1 starts to teeter below 30%. It's much more complicated than that, but you get the idea.
I decided to get in touch with my old friend and find out how she was doing. The response I got was very surprising. It seems she did get evaluated for a double lung transplant but was deemed too healthy with an FEV1 of 40%. She'd been stuck at that level for years. She changed doctors and her new doctor told her she was too young to be this sick (any thirty-something cystic would find this statement shocking). In the next year her FEV1 rose from 40% to 71%! Her CT of the lungs showed minimal permanent damage. Oh what I could do with 70% lung capacity!
I had to find out what her secret was. I think I already knew, so I was a bit disappointed when she wrote me back and told me it was exercise! Now this friend of mine has inspired me to run for my life. It is possible I have far too much permanent damage, after all, every cystic is different. This disease can be ruthless. But I'll never know that unless I try. So last Sunday I embarked on a 6 month journey to see if this running thing can get me out of my lung slump. The rest of this blog will be about my running adventures. I have no idea what the next six months holds, but it's sure to be an interesting experiment!