It's been 28 days since I was put on the transplant list. In that time, I've spent the last 14 days being pumped full of IV medications to get my lungs back to their whopping 22% functioning. I've spent about 8 hrs a day hooked up, which includes late nights, early mornings and middle of the night infusions, so sleep has not been plentiful. I'm tired, I'm bruised. Yes, I feel quite a bit better, but lets remember that my "better" is probably comparable to a healthy persons worst day of having the gnarliest head and chest cold in your life, the only difference is that you get better, I don't ... in fact, I only get worse. I still spend most of my days coughing, struggling to do the everyday tasks that once were easy, like cooking, cleaning, working out, shopping, walking the dogs...and it is because of this rare disease, Primary Ciliary Dyskinesia. It is because of this disease, that I need a double lung transplant to survive. PCD doesn't care what your dreams are, what you want to do, who you want to spend your time with, if you're married and want kids or where you want to go in life. It interjects itself, and one simply must manage.
PCD is severely understood and often misdiagnosed. Heck, I went 29 years of my life misdiagnosed. It is crucial that awareness for this disease, and funds for research are raised. We have come a long ways since the beginning of the PCD Foundation was launched nearly 15 years ago. Started from scratch some amazing people (Michelle Manion and Lynn Ehrne amongst many others) have grown the PCD Foundation to what it is today. Today we have a Clinical Centers Network for research and PCD care,we have a diagnostic and treatment consensus statement, we have genetics panels, we have a registry on the horizon, we have scientific meetings to teach & train medical professionals, we have the first North American PCD DRUG STUDY(!!!) and we have CARE days for PCD families. Today there are 29 clinical and research affiliate centers here in the US and Canada. This is up by 6 centers compared to just one year ago!! My point is that we are making progress, but we still have SOOOOOO much more to do. So, so much more to do.
So, I ask of you, if you are so willing, would you please make a contribution on this day to the PCD Foundation? Your contribution is tax-exempt and will be used to accelerate programs designed to improve the lives and healthcare outcomes of those with primary ciliary dyskinesia (PCD), like myself.On this Halloween day, could you spare $31, for October 31st? Or, maybe a calendar to go in your stockings this year? Or, maybe you want a cozy t-shirt or sweatshirt showcasing PCD for this winter? Thank you in advance to anyone who can donate, it means so very much to me!!! Below are the links to the calendar, the apparel (and other merchandise) and of course the PCD Foundation Donation page if you simply would like to donate. All of these methods, funds will go to the PCDF!!
PCD DONATION PAGE - https://pcdfoundation.squarespace.com/donate-now/
PCD APPAREL - https://shop.spreadshirt.com/breatheforpcd/
PCD APPAREL - https://shop.spreadshirt.com/RunningOnAir
PCD CALENDAR - https://www.yearbox.com/calendarsforgood/breathe-for-pcd-calendar/
