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Sunday, May 1, 2011

31 days of May the Cystic Fibrosis Way--- Day 1: The Diagnosis

A large part of the beauty that spins the world 'round is the differences and similarities that make all of us and our experiences unique...  I have heard so many diagnosis stories, and witnessed my brothers at the age of 5, that I've come to realize that we are all different enough to be interesting. 

I was diagnosed with Cystic Fibrosis on 9/1/2009. 

I was hit by a car in 2005 while training for an Ironman Triathlon. I had ben extremely athletic and active until that point. I ran upward of 60 miles a week + other cardio vascular activities. On that fateful day in May of 2005, 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.
 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.
I'll never forget that afternoon. I picked Nitza up at work and she was steady. That's something I love tremendously about her... she is steady and predictable. We did not go right home, we went to the evergreen walk, which is an outside shopping area. We walked around and probably looked at gorgeous Mont Blanc Pens at Lux Bond and Green. We headed back to the car and she handed me a tiny white box. I was stunned because I hadn't seen her buy anything and there was certainly no occasion to celebrate.
I slowly opened the box and it was a diamond solitaire necklace. It was gorgeous and it really helped me see the beauty in the day... the truth in the diagnosis... the explanations I had been searching for for so long...
That was the beginning of this journey... a journey that has been troublesome and difficult, funny and heartfelt, honest and true... and it's only a quarter over :) I have 90 more years to go!






6 comments:

Stacey said...

This is such an interesting diagnosis story. It exemplifies how differently this disease effects each of us and how different all of our stories are. Thanks for sharing!

Tara said...

Thanks Stacey... It's so true that this disease effects each of us so differently and our stories are all so unique.... I love meeting people online and getting to know them and where CF fits...

Stacey said...

I hope you don't mind, I just linked to your blog in my latest post today...

Tara said...

I just read your post, and no I don't mind at all,... what a beautiful story you have....so much love in your family.. Like I said on your post, i believe it is so important that the stories get out there... Thank you for sharing yours

Keep Family said...

Thanks for sharing...I may want to use your "31 Days of May the Cystic Fibrosis Way" if you don't mind...

Tara said...

it is actually a facebook group... it is called 31 days of May the Cystic Fibrosis Way and it is open and public so you can join!!

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