if you know me you probably already know my cystic fibrosis story. you probably already know why i’m writing this post. what you probably don’t know is how incredibly uncomfortable i feel writing it.do you want to know what the hardest part about having cystic fibrosis is?

it’s not the hospitalizations. it’s not the dozens of medications or the airway clearance treatments. it’s not the doctor appointments or the lung function tests or the infections. it’s not the fact that because of cystic fibrosis i also have to deal with other things like kidney stones, osteoporosis, diabetes and anxiety attacks.

no, the hardest part for me is why it’s taken me this long to write this. the hardest part is asking for help.

“i need help.” three little words that are much easier to utter than it is to deal with all of the things i listed above, but there you have it, i hate asking for help.

i think (ok i know) it’s a control thing. there are so many things about cystic fibrosis that i can’t control. i can and do spend hours every single day taking care of myself and things are still going to happen. lung infections will continue. all the other crap will continue.

cystic fibrosis never goes away. 

taking care of myself, by myself, makes me feel like i’m in control. it’s as close as i can get to feeling like i’m winning the battle. a battle that, technically speaking, can’t be won. yet. because there’s no cure.i need help.

my sister, emma, is spearheading an enormous fundraising campaign to support cystic fibrosis research.

there are tons of new treatments in the cystic fibrosis research pipeline. treatments that i hope to be able to take some day in the future. but i have to get there first. that’s why i need your help.

as i write leann’s legion of cf supporters have raised a little over $18,000!

you’ll probably see that $18,000 and think that’s awesome (because it is) and assume that’s good enough.

wrong.

guess what happens when we hit the $20,000.

did you guess a $20,000 match from an anonymous donor? BOOM!

if we hit that $20,000 mark, our efforts will be doubled. that’s at least $40,000 towards the very research that’s going to keep me kicking and screaming and breathing and feeling uncomfortable about asking you for money for many, many years to come.

if that doesn’t compel you to make a donation, consider this:

there are over 1,800 different genotype mutations in the cystic fibrosis gene. you know how no two snowflakes are alike? sort of the same with cystic fibrosis. each person may carry a different combination or set of genetic mutations. each combination could potentially require a different treatment plan. that is to say, if a new miracle drug comes out and it’s not targeted at my specific genetic mutations, i can’t take it. it won’t do me any good.

i have to wait until the research finds the magic treatments for my specific mutations – W1282X and Delta508. the cystic fibrosis foundation will not stop the research until 100% of cf patients can be treated and ultimately cured.

the only way cystic fibrosis is going to go away is if the research keeps moving forward. the only way to keep the research moving forward is to fund it. simple as that.

i need your help. click HERE to make your donation. you are going to save my life.

donate

11.01.12

xanax me, baby

below is the final draft of a fundraising speech i gave a few weeks ago. i talked about that one time i passed out the kitchen floor with a knife in my hand and then asked the audience if they had any xanax.

and – i’m on the tail end of a lung exacerbation, which has been pretty awesome to deal with. just starting WEEK FIVE of antibiotics. in fact, i have to go sleep fast so that i can actually wake up on time to plug myself into my 6am iv dose. god bless the port-a-cath.

more soon… in the meantime, enjoy the speech! 

When I woke up on the first morning of winter break in my senior year of college I had only one thing on my mind. A grilled cheese sandwich.

So I got out of bed and shuffled to the kitchen to make one.

I must have had a full loaf of bread that needed to be sliced, because I was holding an enormous knife in my hand when I felt a tingle creep alllll the way up my spine.

I thought, This must be what it feels like before you’re about to faint.

And, really need to let go of this knife.

And then like magic, my whole entire body went numb and I landed on the floor with a thunk.

I don’t really know a better way to explain what happened over the next 20 minutes except to say that there was a complete, 100% disconnect between my brain and my body. I was moving – crawling on the floor, standing up, sitting down, kicking and punching the air – but I could’t stop.

Mid-convulsion, I tried to diagnose myself and decided I was having a seizure or stroke, because, you know, I like to watch medical TV dramas which is basically the same thing as being a real doctor.

I’m screaming for help but nobody comes and I realize I’m just going to have to stay on the floor until this thing passes or my roommate comes home from work, whichever comes first.

And then it stops.

I stand up, grab my cell phone, call my parents. We’re all bewildered. My friend Denali comes over, and together we go to the ER, where after a battery of tests they determine I’m perfectly fine and send me home. End of story.

A few days later, I’m re-capping the episode to a childhood friend of mine and she says, “You know, Leann, that sounds exactly like what happens to me when I have anxiety attacks.”

And I laughed, because, what the hell do I have to be anxious about?!

But the truth was, and still is, I had a lot to be anxious about. I have a veritable treasure chest filled with things to be anxious about, to have nervous breakdowns over.

I was born with a chronic illness.
A chronic illness for which there’s no cure. 

Cystic fibrosis is a genetic disease that attacks the respiratory and digestive systems of the body by creating an insane amount of thick, sticky mucus. But the word ‘mucus’ actually makes me gag so from here on out I’m going to use ‘bubble gum’. Currently, there are only about 30,000 people in America who have cystic fibrosis. (To put that number in perspective, that’s roughly the number of students currently enrolled at USC.)

Every day, I will swallow about 25 pills, complete 4-5 breathing treatments, and at least an hour of airway clearance therapy. That’s what my regimen is, those are the things I have to do just to be able to breathe and digest food like a normal person. On the good, healthy days.

In the spring of 2006 (so about 6 months prior to the anxiety attack), I somehow went several weeks without noticing that my size 0 pants were falling off, that I was barely eating a bowl of cereal per day, or that I couldn’t walk two feet without gasping for air.

Still, I traveled to Washington D.C. to meet my Dad for a weekend. And when he saw me, all shrunken and not hungry and wheezing, we flew straight back to Boston and then hopped right into a cab to Mass. General Hospital, where my doctor’s practically met us at the door.

What was clear, like, in neon flashing lights clear, to everyone but me was that I had an acute exacerbation. Which is fancy talk for lung infection, CF style. And there’s nothing cute about it.

I can talk for miles about acute exacerbations because since that first one in the spring of 2006, I’ve had about a dozen of them. Each plays out more or less the same.

When I am diagnosed with an acute exacerbation, that means my lung function has decreased significantly. Breathing gets difficult.

My lungs are filled with bubble gum. My chest hurts, I get winded doing the simplest of tasks, I completely lose my appetite, my energy. And usually, not always but usually, I cough until I throw up because it’s the only things I can do to make myself stop coughing.

After the acute exacerbation diagnosis, there’s only one place to go, which is the hospital. I’m there for 3 weeks if I’m lucky, 4 weeks if I’m not so lucky.

Contrary to popular belief, there’s no rest for the weary in the hospital.

While there I’m pumped full of antibiotics, receive round-the-clock airway clearance therapies and I’m visited by what feels like every medical professional in the state. Usually the action starts at 6am, and doesn’t end until midnight.

Sometimes there are detours, like emergency surgeries to remove a blood clot from a major artery in your arm, or a 5-day stay in the ICU courtesy of the antibiotic you didn’t know you were allergic to.

Being sick and tired like that in the hospital for 3 weeks at a time several times per year is exhausting, yes, but it’s also really annoying.

It’s annoying that I can spend every. single. day. of my life swallowing the pills, inhaling the medications, consuming all the calories, coughing up the bubble gum… I can do everything right… and I can still wake up one morning and barely walk from my bed to the bathroom without needing to sit down.

After the first exacerbation I had another exacerbation, was diagnosed with cf-related diabetes, and suffered a massive bowel obstruction. Also, because of my cystic fibrosis, I had the distinct pleasure of passing a few kidney stones, going night blind, and I skipped right on into my 80s with an osteoporosis diagnosis.

I experienced all of those things.

In a span of six months.

And then I collapsed on the kitchen floor.

This is the life I live now, as an adult with cystic fibrosis.

The exacerbations have slowed down. I’ve gone from having three or four per year to maybe one per year.

I still have the anxiety that comes from knowing that I will never have total control over my disease. The anxiety that that comes from the constant wondering of when my next exacerbation will be.

The anxiety that comes from knowing that there is no cure for cystic fibrosis… yet.

The Cystic Fibrosis Foundation funds the research for the CF cure. At present, there are over 30 different treatments in the research pipeline. I’m not a scientist, not even close, but I do know that those treatments are my future.

And here is where you come in.

The cure is in your pockets. 

Ok maybe not the exact cure for CF (though, if that is in your pocket, please speak up immediately), but the cure nonetheless.

Last year, the CF Foundation poured over 100 million dollars into researching for the cure. That’s about $7000 for every person in this room. But don’t worry, I won’t ask you for $7000… directly.

But $50? $100? I have absolutely no problem asking you for that. Or for Xanax. But, if I’m being honest I’d rather have the money.

There is not a doubt in my mind that your donation tonight (91% of which goes directly into that treatment research pipeline) will cure CF. And my anxiety. And the anxiety of every. other. CF patient. doctor. family member. and friend.

You are our Xanax! But more importantly, you are our future.

Thank you.