"Whenever you find yourself doubting how far you can go, just remember how far you've come. Remember everything you have faced, all the battles you have won, and all the fears you have overcome"
This past week has been a challenging week for me, mentally and physically. Despite committing to working out daily for the last month, going to pulmonary rehab 3 times a week and focusing on trying to do everything right - my numbers continue to drop, my lungs continue to fail me. Prior to my thyroid surgery, I sat at about 25% lung function. This week, I was at 21%. To most people this 4% change probably doesn't seem significant, but for me this is entirely disappointing and most of all frightening. My best number this week was 23%.
PCD is relentless. It simply doesn't care who you are, how old you are, if you have a family, if you're weak or how hard you work to stay strong, it fights back with a vengeance. It doesn't care if you have plans, if you have dreams. It's absolutely terrifying to know that no matter what you do, ultimately it will "win", and by "win" I mean it will progress and my only option is a life saving double lung transplant. No matter how many times one is told this, no matter how long or how little you think about it, you NEVER become "comfortable" with the idea that your only option is a transplant, and that transplant certainly isn't a guarantee and most definitely doesn't come without it's own challenges. It's unnerving on so many levels and the "what if's" are endless. What if the transplant never happens? What if my lungs don't last me until transplant? What if something goes wrong during the 12 hour surgery? What about all the potential complications? What if I get infection and/or rejection? What about that person that had to pass away in order for me to live, and their loved ones? What if?
I express my vulnerability here because it is my reality. I'd like to think most of the time I remain upbeat, positive and look forward headstrong - but I am human and I have my good days and my bad days, and I am the first to admit it on my bad days...and, well, it's a little hard to hide when you're at pulmonary rehab and you start bawling that ugly, snot-nosed, red-faced cry in front of people you barely know. Yeh, that happened.
People are always asking what they can do to help? I'll tell you what will help. Help an organization that's sole purpose is to make the lives of those affected by PCD better. An organization striving to gain speed for research and advancement of care for this awful disease. October is PCD awareness month. Learn a fact or two about PCD and share it. Did you know that less than 1,000 people have a confirmed diagnosis of PCD, but it is estimated that about 25,000 people, just in the US, are living with it? The only way we can make progress is through funding and any amount of donation can help us. We can help find specific therapies and treatments for PCD, as currently there are none. There is no cure. If you are feeling like lending a helping hand please visit the PCDF website where you can get involved in any way you'd like, or make a donation. And, in the meantime, please send some positive vibes to those of us who battle every single day, for each and every breath we take.
So very well written by your heart and I know it was because my heart is hurting and now I have that "snot-nose, red face" right now from crying after reading this. Your story amazes and inspires me each time you tell a new part of it. Don't ever be scared of being scared that's what makes us human, your incredible determination to come back and fight after each battle and win, is proof of your faith, your love of life and your determination to never, ever give up! Love you Rebecca!
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