I Outrun CF- My Story.

Today is my 36th birthday.
Today I decided to check on the median age of survival of a person with CF.

The info below is directly from the cff.org

Statistics

• About 1,000 new cases of cystic fibrosis are diagnosed each year.
• More than 70% of patients are diagnosed by age two.
• More than 45% of the CF patient population is age 18 or older.
• The predicted median age of survival for a person with CF is in the mid-30s.

I was diagnosed with CF on 9/1/2009.  I was 34.  My brother was diagnosed with CF on 9/19/1980 at the age of 14 weeks. 

What does this have to do with anything you ask?   It has everything to do with everything..  I was an elite runner. I ran 3:15 marathons. Won Olympic distance triathlon's, sprints and placed really well in 1/2 Ironman Distance triathlons... I played soccer from the age of 5 or 6 and played sports all year round. I became a runner 15 years ago or so and fell in love with it. I had chronic lung infections, upward of 5 a year. I had chronic sinusitis and a few surgeries to clear out the sinuses. 

I kept running.

In 2005, while training for Ironman Wisconsin I was clipped by a car on a training bike ride. My front brake punctured the structure of my right kidney.  I had 18 surgical procedures and eventually lost the kidney. You ask, what does this have to do with CF... I tell you-- Everything. For the first time in my life I was inactive. Between surgeries I'd get up to run again, only  to be sidelined from another surgery. After each procedure I got a lung infection. I had my kidney removed in November of 2008. I had 11 bacterial lung infections in the 9 months that followed. My nephrologist's partner sent me to a pulmonologist.

I saw Dr.C.  He asked me a lot of routine questions.. Do you smoke? NO.. Drink. Occasionally... etc etc. He went on to ask if anyone in my family had CF.. I thought it an out of the blue kind of odd question and old him my brother did, but I was CERTAIN I did not have it. He nodded his head and ordered a sweat test and labs. 

I went to UCONN for a sweat test and wrote it off as another routine test I'd have to go through after all this time and really-- I was so sick of doctors with the kidney charades... I walked out of UCONN, talked to N and my mom and said wondered what they'd do next when the CF test came back negative.

On 9/1/2009 Dr C called me and asked me to come to his office for a quick visit. I thought nothing of it. (DENIAL) I mentioned to N that Dr C called and she asked if I wanted her to come with me... I said no, she had meetings and I was sure it would be a quick visit to discuss my sputum or something.

I walked in and they were a lot nicer to me than they had been.. maybe nicer is not the right term.. they are and were always nice.. but perhaps more attentive.. did I want water or coffee... Dr C came in with 2 nurses and a pile of results. 

"I'm very sorry to tell you Tara that your Sweat Test was positive for CF, confirmed by your Ambry Genetics blood work." 

Stomach drops.. WHAT??? 

I can't have CF. Michael has CF. I do not have CF... but I do have CF.

Dr C brought Dr P (my current CF doc and ultra amazing best ever pulmonologist) in to meet me. They would start following me in the clinic and he would be my primary doc.

He went on to tell me that his theory on my specific late diagnosis is that I had spent 29 years doing my own CPT. At my peak (of at least  years) I was running 60+ miles a week. He told me that I was clearing my own lungs and that when I got in the accident all the mucus settled and I became more symptomatic.

Here we are, the 4 of us. I am the tall one with the white hat. I have CF.

I kept myself alive and healthy by outrunning cf every day. I keep myself alive and struggling to stay healthy by outrunning cf.

Every day I step on my treadmill. Yesterday was no different.

Yesterday I outran CF. N and I outran CF. We did our three miles (mine walk/run)... but it wasn't that moment (though I specifically logged my CF mileage yesterday morning for I Outrun CF)  that I realized what outrunning CF was truly about.

It was this one:

My beautiful sister and beautiful boy outrunning CF with laughter on my mother's front lawn.

It was this one:

Because I outrun CF, I can sit and enjoy my family.

And because I outrun CF, I can blow out birthday candles

with the help of this guy:

and I wake every morning to them:

and these folks

and I am blessed...and I have CF... and I outrun cf each day... which gives me another.