This post is authored by Renee Dale, a fellow PCDer.
Primary Ciliary Dyskinesia (PCD) Awareness Month (October) is a necessary part of helping the PCD community find a cure. But mid-way through the month, every single year, it hits me and hits me hard. I look around and see all this effort by families and friends to help me and my fellow PCDers find and fund a cure for PCD. Out comes all these uplifting and inspiring stories of a variety of PCDers and their impact on life itself. I’m often left wondering if this is really a true picture into the life of a person with PCD. Don’t get me wrong; I love all the PCD stories of inspiration and perseverance. Though I’m often left wondering and contemplating during this month that PCD isn’t always inspirational and glamourous; it can be messy and it most definitely is cruel.
Maybe this month, this year, has just hit me hardest; because I’m struggling with my own internal conflict over PCD this year. See PCD isn’t just a genetic disorder that once cured will automatically make someone with long term damage free from all consequences of PCD. If a cure is found, there will still be lasting effects left behind in a PCDer’s body. The only way that won’t happen, is if there are simultaneous cures found for bronchiectasis, antibiotic resistant superbugs, nontuberculous mycobacterium, pseudomonas aeruginosa, congenital heart defects, and the list goes on.
Maybe this month is hard; because everywhere I look, I see the good side of the stories of PCDers. PCD isn’t always glamorous and inspiring, there is another side to PCD; one we PCDers and our families do not often show to the real world. However, perhaps we should show it. It’s often hard for others to understand the PCD struggle, when all they see is the good, the inspiring, and the uplifting.
Here are some of my random thoughts on PCD this month. (To my PCD Family please feel free to add to my “Sometimes List”!)
-Sometimes PCD is lying awake trying to figure out how to tell your family that your lungs are failing.
-Sometimes PCD is having one doctor’s appointment turn into fifty more appointments over the next two weeks.
-Sometimes PCD is having to skip your plans you’ve had for over a year and lay for hours in a machine for a CT-scan or MRI.
-Sometimes PCD is having to decide things based on your quality of life instead of your quantity of life.
-Sometimes PCD is having to make life changing decisions that there is no turning back on.
-Sometimes PCD is having to make decisions based on best guesses made by some of the top medical doctors and specialists in the country, because they have no definitive evidence or research for you to base your decisions on.
-Sometimes PCD is spending months in turmoil, agonizing over whether or not you feel a lung transplant is the right course of action for you and your beliefs.
-Sometimes PCD is agonizing over whether or not you should follow your specialists’ advice that it’s time to stop treatment with antibiotics, unless necessary to save your life.
-Sometimes PCD is reaching a crossroads in your care where things are no longer decided as they once were.
-Sometimes PCD is having to put on a brave face and pretend that everything is okay.
-Sometimes PCD is living month to month, decision by decision, test result by test result, and so on.
-Sometimes PCD is having to live with the lesser of two evils, while doing nothing but waiting.