• Our Mission

    Our Mission

    Our mission at PCD Smiles is to bring smiles to hospitalized primary ciliary dyskinesia, no mater their age; through the gift of a cheer package. Currently serving only The United States and Canada.
  • Request Cheer Package

    Request Cheer Package

    Know of a hospitalized primary ciliary dyskinesia patient? Please visit our “Request a Cheer Package” link and fill out our secured form to submit them for a cheer package today!
  • Donations

    Donations

    Our cheer package program runs on donations. To see how you can help PCD Smiles, visit our donations section today!
  • The PCD Artist Project is a collaborative effort by artist to raise awareness for PCD & support the PCD Smiles cheer package program. Visit our exhibits today!
  • ACT Series, 7: Postural Drainage & Percussion (PD&P)

    ACT Series, 7: Postural Drainage & Percussion (PD&P)

    As we continue our deep dive into airway clearance when percussion is added to postural drainage it is known as postural drainage and percussion or PD&P in the United States. PD&P is also known by...
  • ACT Series, 6: Postural Drainage

    ACT Series, 6: Postural Drainage

    As we continue our deep dive into airway clearance the first technique for airway clearance was postural drainage (PD). This technique was first seen in a 1934 paper by H.P. Nelson. It operated on...
  • ACT Series, 5; Autogenic Drainage

    ACT Series, 5; Autogenic Drainage

    As we continue our deep dive into airway clearance our second breathing technique for airway clearance is autogenic drainage (AD). This technique was developed in 1967 by Jean Chevaillier and was...
  • ACT Series, 4; Active Cycle Breathing

    ACT Series, 4; Active Cycle Breathing

    As we continue our deep dive into airway clearance our second, most basic, and next easiest airway clearance technique (ACT) is breathing. Breathing is another important part to all other airway...

Did I ever tell you about the time that PCD (primary ciliary dyskinesia) saved my life and my family’s life? It was the of winter 1995-1996 we were renting one side of a duplex, the other side was our landlord and they were snowbirds currently (at that time) in Florida for the winter. My folks had us babysit their cat, my cat from childhood, the week or so before that weekend. That dang cat stayed under our bed for ten days, making messes and all. He hissed every time we tried to get him out. Eventually I gave up and decided that was where he was going to stay, so we even put his water and food just under the bed with him. He was acting the craziest ever. I chalked it up to being fifteen years old and pissed he wasn’t home.

I was so glad that Friday when my mom had us bring him home. I felt terrible, so did the Mister. Saturday morning we woke to the worst cold ever. I remember barely being able to get moving. We had a church play that night so I remember we were pushing ourselves at the time to get going for the day. The Mister drove us to the pharmacy in the next town, where he went in and grabbed every cold medication and sore throat spray that he could. I remember us just sitting in the parking lot trying to get our bearings for what seemed like hours. The fresh winter air felt somewhat better. The longer we sat the better my Mister felt. We eventually went home to get moving for the day and ended up taking a nap. Showers and getting ready for the church play took forever. We didn’t eat much if I recall. We’d eat at the church dinner play. Maybe we’d feel better by the dinner before the play. The Mister and I were in charge of the sound system and mics for the play that night, there was no backing out. No matter how tough we felt.

I was exhausted by the evening and laid on the stage sucking in air, I felt terrible. Chris let me lay down for most of the set up. We discussed going to the emergency room for a check as I started having some chest discomfort. Chris at that point had a huge headache, but we pressed on. By the end of the evening I don’t remember much, I was so uncomfortable. We packed up the sound equipment from the auditorium, I mean the Mister did most of the work. I just laid on the stage napping. Once we got to our car he asked me if I wanted the emergency room. I begged to just go home for the night. I needed a good sleep, I’d be fine in the morning I assured him. When we got to our house I collapsed walking up the three stairs to the porch. The Mister carried me inside, laid me down on the bed, and picked up the phone to call 911. The next thing I knew someone was smacking my face and calling my name telling me to wake up. Things were a blur at that point, mask getting thrown on my face, being loaded up, having my face covered by the blanket because it was a really cold night outside.

My in-laws just happened by our street on their way home from the play, saw the commotion, and turned down the road towards our house. My mother-in-law says she will never forget the sight of seeing the fire department carry a stretcher out of our house with the sheet draped over the entire patient. Her heart dropped, and my father in-law ran for the house. They were quickly relieved to see my feet move. After they got me in the squad, the funniest thing happened. I swear I heard them giving the Mister the third degree. How do you feel Chris? Are you Dizzy? Chest pain? Headache? Nausea? Who was the president? Tell us your full name Chris? I was laying there thinking I was dreaming because they were all about the Mister but yet someone was putting an IV in me. When the blood started coming out of the IV my blood was pure black. Hummm, I’m definitely dreaming I thought as the ambulance sped down the road; full lights and sirens. Just let me sleep, I’ll be fine in the morning I kept saying. I drifted off to sleep in my bed, or so I thought. A few hours later I awoke in our hospital room.

It turns out that the minute the fire department stepped into our place, responding to the Mister’s call for help, they smelled an odor. It appeared that our furnace had a small leak. Overtime carbon monoxide was building up in our hose. The reading they took was extremely high. They say had we gone to sleep like I had wanted, we never would have woken up. With as far gone as I was it was a miracle that I wasn’t dead already. It was a miracle we even woke up that Saturday morning at all, thankfully we had commitments to attend to or we might have opted to stay in bed with our supposed colds. And my crazy childhood cat had known too, it was probably why he hid away from us. So how did we survive?

PCD patients have extraordinarily long airway clearance times compared to the general population. It’s why sometimes after surgery we struggle a bit with gas exchanges while adjusting to being taken off the ventilator after the surgery is over. The general population can clear things that they breathe in, in as little as twenty four hours. People with PCD struggle to clear what they breathe in for seven days or more. My mister’s airways where able to purge the build up of carbon monoxide, or was well on the way to purging it since we had gone out for the day. I continued to struggle with the build up from days of exposure to the carbon monoxide and by Saturday evening collapsed outside our door. My airways couldn’t clear the carbon monoxide quick enough, and I succumbed to the effects of poor gas exchange and collapsed leading to the call for help. PCD actually kept us, a young couple in their early twenties, from just going home and trying to sleep off what we thought was a simple cold. If I hadn’t of had PCD and we had just gone to bed that night, we would have never woken up...

Check your furnaces yearly, get a carbon monoxide detector, and make sure your house intakes and exhausts are not covered by snow after every single snow. The life you may save is your family’s life! 

Be sure to join us next week for another Topic Thursday.

Join our Facebook group Turtle Talk Café today, click here.

We have several ways that you can donate to PCD Smiles;

- Visit Smile E. Turtle's Amazon Wishlist

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies.

- Or sponsor a PCD Smiles cheer package today!

- To shop for your “Official” turtle care ribbon gear today, visit PCD Style or Smile E. Cove

Thank you for your consideration!

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