My Story
Everyone with CF has a different story - and was diagnosed a different way. Since I'm often asked, here's mine . . .
I was diagnosed with CF when I was 3 years old. I ate like a horse, but weighed only 20 lbs - the doctor just kept reminding my parents they weren't big people, and their daughter was likely just petite. No meconium problems, no respiratory problems. Finally, a different doctor was a bit suspicious and sent me for a sweat test. Honestly, I remember it. It's one of my first recollections. I think we remember big things like that.
Long story short, the sweat test came back positive. Since I was positive, my sister was also tested (she was six months old and very healthy) and she also was diagnosed with CF. A few years later, my cousin Jason was also diagnosed with CF. The gene runs rampant in my family!
I've never really struggled with my weight - once I was on enzymes I gained weight and grew. Even today, I'm able to keep my weight on - though I do eat more than most people and can out-eat my husband any day. I even gained 35 pounds with each of my pregnancies!
(Yes, I have three boys - all healthy, none with CF, but all, obviously, carriers. The ethics of that are for a different day. Let's just say I don't take no for an answer.)
But back to my CF - my CF manifests itself more in sinus problems for me. Oh I do Pulmazyme, but not TOBI (allergic to it in the inhaled version). I have the vest, but prefer to do the a capella breathing. I take oral antibiotics several times a year, but to date, knock wood, have never had IV antibiotics or been hospitalized for a tune up!!! And I take the typical handful of other medications every day. I'm very blessed, and very rare - and yes, I have been retested, and had genetic workups done to see if I really do have CF - I'm homozygous for the delta F mutation and my sweat test still comes back positive. But I don't take this stroke of luck for granted - I work out, try to get rest, take my medicines and really, really work hard at the postitive attitude.
My sister and cousin weren't so fortunate. My cousin died when he was 14, my sister when she was 23 - two years after receiving a bilateral lung transplant. I know the good and the bad that is CF - but I like to try to keep my mind focused on the good. Everyone's story, everyone's version of the disease is unique. So I focus on my own story . . .
I was diagnosed with CF when I was 3 years old. I ate like a horse, but weighed only 20 lbs - the doctor just kept reminding my parents they weren't big people, and their daughter was likely just petite. No meconium problems, no respiratory problems. Finally, a different doctor was a bit suspicious and sent me for a sweat test. Honestly, I remember it. It's one of my first recollections. I think we remember big things like that.
Long story short, the sweat test came back positive. Since I was positive, my sister was also tested (she was six months old and very healthy) and she also was diagnosed with CF. A few years later, my cousin Jason was also diagnosed with CF. The gene runs rampant in my family!
I've never really struggled with my weight - once I was on enzymes I gained weight and grew. Even today, I'm able to keep my weight on - though I do eat more than most people and can out-eat my husband any day. I even gained 35 pounds with each of my pregnancies!
(Yes, I have three boys - all healthy, none with CF, but all, obviously, carriers. The ethics of that are for a different day. Let's just say I don't take no for an answer.)
But back to my CF - my CF manifests itself more in sinus problems for me. Oh I do Pulmazyme, but not TOBI (allergic to it in the inhaled version). I have the vest, but prefer to do the a capella breathing. I take oral antibiotics several times a year, but to date, knock wood, have never had IV antibiotics or been hospitalized for a tune up!!! And I take the typical handful of other medications every day. I'm very blessed, and very rare - and yes, I have been retested, and had genetic workups done to see if I really do have CF - I'm homozygous for the delta F mutation and my sweat test still comes back positive. But I don't take this stroke of luck for granted - I work out, try to get rest, take my medicines and really, really work hard at the postitive attitude.
My sister and cousin weren't so fortunate. My cousin died when he was 14, my sister when she was 23 - two years after receiving a bilateral lung transplant. I know the good and the bad that is CF - but I like to try to keep my mind focused on the good. Everyone's story, everyone's version of the disease is unique. So I focus on my own story . . .
posted by Katie with a K | 2:03 PM
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