just call me shameless

My CF Statistics

Because I am a shameless copycat and because it gives me something to write about, here you go!

I'm Shannon.

I will be 32 in July.

I have two children ages 9 and 2.5

I was diagnosed at 6 weeks with failure to thrive. Apparently I spent most of my first six weeks screaming and very angry, due mainly to starvation. I developed a fissure by one eye from lack of some nutrient. My great grandfather was visiting from South Africa and as soon as he saw me he said, "something is not right with that baby." My paretns REALLY did not want to see things. My mother says I had to have a blood transfusion and afterwards she did not even reocgnize me because I was all pink and glowy and healthy looking rather than gaunt and pale.

I took enzymes in applesauce, but I think by age three I was swallowing my own pills.

After kindergarten my mother no longer gave the school nurse my meds, instead she just put them in my lunch box. We learned early on involving the school in med taking was pointless - I remember in daycare arguing with the daycare teacher that yes, I had to have more enzymes to eat again, it did not matter that I had taken some an hour before....like talking to a brick wall.

My parents did CPT on me until I was about 8 at which point I was strong enough to fight them off. I HATED it. They would have to chase me down, sometimes there was some spanking involved, other times some bribing.

At age 9 my dad put me on a competitive swim team (USS swimming, like the kind of team Olympians usually start on, and in fact I competed against Lindsay Benko who won a gold in 2004 - she kicked my butt though.) His reasoning was that the exercize would shake up the mucous and clean me out and there did not have to be anymore wrestling matches at home. It worked very well.

On off swimming days, my dad often made us go on what he called "ranger runs" - all under the pretense of "keeping Shannon's lungs clear." If it was raining, we did 500jumping jacks in the basement. He also gave is "karate lessons" and made my brothers and sister and I spar with one another. I HATED all of this. Often when we ran I would try to just sit down and refure to run, in which case my dad would drag me or swat me in the back of the legs with a switch.

Despite all this, I won the Presidential Physical Fitness Award several times in school - I was the only kid who could climb the ropes to the rafters! I played basketball (I sucked, I was so little!) and volleyball, I ran track (but quit) and I also was the captain of the swim team in high school and went to state as an alternate on a relay (which means I did not swim, but was chosen to be a replacement if someone should not be able to).

I never went to Cf cmap. I would have rather DIED than gone to Cf camp. Looking back now I don't think it would have been such a bad thing for me, but I really tried to hide all things Cf related.

I have never been hospitalized for CF.

I had my first PICC and first IVs last February.

This is not to say I would not have benefitted from IVs years earlier, but that's just how the cookie rolled.

I am scheduled to see an ENT on Monday for the first time despite a lifetime of sinus torubles. I have never had polyps though.

My lowest recorded PFTS were 46% when I was about 11, the highest 96% at age 15. For years I thought I hovered in the 70s but it turns out that until recently the last time I saw the 70s was when I was 18. I was in the 50s-60s all through my twenties. I am now back into the 70s and plan on staying there as long as I can.

I am now swimming again after a 14 year hiatus. I swim 1/2 mile 3x a week. I think I should do more though and am looking into this "Couch Potato to 5k" thing I have heard about.

I pee my pants when I cough or laugh, so I hate exercizing in front of poeple like at a gym - because you have the coughing thing, and then you have the grab your crotch so you don't pee your pants thing. I blame this on CF, genetics, and 2 vaginal births.

I had my genetic typing done when I was pregnant with my son. I signed up to do a study on gestational diabetes and Cf women. I am a horrible patient and I did not finish the study (sorry O CF world). I found out I am df508 and s549n.

I do not have CFRD, not yet anyway. I did not have gestational diabetes either.

I was underweight as a child until puberty when I plumped right up. From age 14-27 I weighed between 100-110, at 27 I plumped up to the 118-120 region. I am now at 133ish and not very happy with it. It has been a real battle to have not had to worry about what I ate or wrestle with body image for som any years and to now have this sagging belly and cellulite. I am working on both toning up and accepting my new figure, but it has been very hard for me.

My maternal uncle has CF. My maternal grandparents lost their first child to CF as well in 1948 at 8 weeks old. No one else we know of in our family has CF though there are a few suspicious deaths of infants on my paternal grandma's side though she denies it could have been CF. I think she is positive that the Cf genes all came form my grandfathers side. None of my cousins or siblings have been tested to see if they are carriers.


When my son was born he got sick with meningitis at 10 days old. I had to repeatedly convince his doctors I had CF (they were not sure what was wrong with him at first and while Cf did not seem likley, it was in interesting pice of info on my end). They kept telling me I may have been misdiagnosed, etc. Finally I spouted off my mutations and they shut up.

Cf has not kept me from living a "normal" life at all and for that I am thankful. I am much more prepared to handle CF at age 31 than I was at 21 so I am glad I got the chance to grow a bit before it really started showing itself and that I was wise enough when it did to start taking care of myself and not continuing to rely on good luck as I was able to regain almost 20% of my lung function and I now remember again what it feels like to feel pretty good.

I get afraid for my kids, for leaving them without a mom, and I think I can say having kids was a pretty selfish choice, but they are my heaven and earth and the reason I strap into the vest each night and swim in the mornings.

your turn!