STAND.

                                                                           STAND

"You feel like a candle in a hurricane, just like a picture with a broken frame

alone and helpless, like you've lost your fight

but you'll be alright...you'll be alright

Because when push comes to shove, you taste what your made of

You might bend till you break, cause it's all you can take

On your knees you look up, decide you've had enough

you get made, you get strong, wipe your hands, then you stand"

A recent trip to Chicago brought many different emotions.  Time with old friends in one of our favorite cities, was slightly clouded by a less than desired outcome at a doctors visit.  I hadn't seen Dr. McShane in about a year, so upon seeing her smiling face, we embraced in a huge hug.  She then took me on a tour of the new hospital where she spends a lot of her time.  I then was able to finally see the Nasal Nitrous Oxide (NNO) machine that we were able to help Dr. McShane get, by holding a couple of fundraisers last year.  Oddly enough that day was the first "live day" where Dr. McShane could test patients.  I met one of her patients as he finished his test, ultimately indicating that he does not have PCD.  This was what those fundraisers were all about.  Helping others to determine what it is, they've been dealing with for their entire life.  Dr. McShane having the machine, will enable her to test many patients and hopefully bring some clarity to what they are dealing with, PCD or not.  I can't tell you how special it was to see Dr. McShane and her staff, so enthusiastic and appreciative.  It was one of my favorite and happiest parts of our trip.  I also got tested by this machine, and without much surprise my NNO levels were critically low, as they always have been.  The clinical coordinator was fascinated by my numbers, as she was amazed at how low they were, a very significant indicator in PCD.

(This is me and Dr. McShane, with the NNO machine in the background...the grey/white machine)

Unfortunately, I blew an all time low of only 25% at my pulmonary function test.  This is by far the lowest it's ever been, and to say it scared me is a complete understatement.  I was disappointed, frightened, angered.  I'm "running" on fumes, or so it seems.  I don't think Dr. McShane knew what to say, as we always expect that my numbers won't change from my usual 30%.  Well, they have and we sat in silence for a couple of minutes, both of us not really knowing what to say or do next.

I returned to our hotel and was a complete mess.  I curled up in bed and when Bob met me, I completely lost it.  I quickly became a sobbing, red-faced, hot-mess of a wife.  Comforted by my husband's loving concern and warm hug, we took some time to just take it all in.  We cancelled our dinner plans and went out for an evening by ourselves. The pain and fear was dulled slightly by a few adult beverages, but those feelings quickly resurfaced the next morning.

Earlier this week, I decided it was time to take the first step... I needed to get the ball rolling on interviewing at a local lung transplant center.   So I mustered up the courage and with a click of a button, I sent an email to my Houston doctor, an email that I never actually imagined I would have to send.  Proud of myself for doing so, I went on about my business.  It was only a couple hours later that my emotions took another drastic turn as I learned one of my "transplant" buddies who I spoke with over Facebook, passed away suddenly.  The day I get the courage to start the transplant process, I learn of this girls passing.  She had received a double lung transplant two years earlier.  I can't imagine what her family is going through.

After a few rough and emotional days, the clouds are starting to part and I am slowly gaining back that fight, that I know is always there.  No matter what, I will continue to fight the fight.  There is nothing more in my life that I want than to have as much time as possible with my husband, my family and friends, and my puppies.  It might not always be easy but this is the life I have been given and I will live it to the fullest, even on the toughest of days.  Many thanks to our friends and family who continue to support us and encourage us.  I know I could never do this alone, and those emails, calls and texts mean so much.  And, I have to thank my husband, as he is my rock when I am weak.  I am constantly reminded of the love I have for you, something so special and unique.  Thank you for always knowing how to make me feel loved, thank you for being strong even when I know you're hurting just as much.  I love you.