• 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.
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    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!
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    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!

A few years during a family medical crisis involving my father I went a jumped on the first plane out of Minniapolis bound for my home state of Ohio. I wasn’t actively sick with and infection, but still in declining pulmonary status myself. I didn’t ask anyone, I just jumped on a plane bound for home as my father wasn’t expected to pull through. I did notice it took me extra time to get through the security and to the gate for my plane. But I did have two medical bags with me, on top of my carry on and personal item. My checked luggage was already taken care of. Due to my hearing I did request early boarding so I could get on the plane and not miss my announced times over the intercom. Those announcements I’m usually oblivious to, so the early boarding makes sure I’m not left behind.

My only thoughts as we taxied onto the runway was how weird it was to think that on my return flight I would no longer have a father. I was so distracted by what await me in a Ohio that much of the flight passed quickly and without thought. That is to say that I didn’t notice I was in trouble until I was. As we descended into the Cincinnati airport I noticed the air got thick. My head spun a bit. When we taxied to the gate and started to deplane I grabbed my stuff as usual. But the time I stepped onto the jetway my role went out from under me. I couldn’t find the walls to lean against and the jetway seemed to continuously grow and get longer, I couldn’t breathe, I couldn’t think straight let alone see straight. It took forever to make it up to the gate in the terminal from the jetway. By then my phone was ringing and it was my sister saying they were a few minutes out from the airport yet, I could barely speak. I still had to make the baggage claim to get my checked luggage.

Getting through the concourse to baggage claim I found I was walking at a turtle’s pace, thank goodness for the moving walkways or I would have never made the mile trek. I routinely was setting down my carry on bags on to the moving walkway and if I could have slumped over the rail I would have. I barely made it to the baggage claim as the baggage handlers were loading it onto a cart as unclaimed luggage. Everyone one else on my flight had come and gone fifteen minutes ago. The security lady say how ragged I was and offered to let me out the security door into the passenger pick up zone, so that I didn’t have to complete the trek around the construction area to get to passengers pickup the regular way. I was ever so grateful. She asked if I needed medical attention. To which I could barely answer her that my family was just outside and I just needed to get there. That’s when she offered the shortcut. I made it to my sister’s car and was met by my brother-in-law who took my bags. I collapsed into their backseat. The airport was an hour and a half from their house back into Ohio. I needed every bit of that time to regain my composure. I didn’t let on to them that I thought I was in trouble and I just let them talk while I recovered. About a half hour into the ride back to their house I remembered I had my pulse oximeter in my purse. The reading on my meter stated 78%. I left it on my finger and watched it slowly rise into the 80s and then hit 91% were it stayed. It never dawned on me to put it on when I was struggling at the airport. Hypoxia is such a weird thing. And I began to worry about how I was going to make the return flight. I knew I’d wear the monitor constantly during that trip to monitor myself. I also began to realize I should have called my team to get the okay to fly. Aging, and progression with PCD is and will continue to be a weird thing. My spouse and I talked later that week, and we decided that if I felt to bad over my trip then my spouse would drive into Ohio, pick me up, and I’d ride back with him to Minnesota. We did some research while I was in Ohio about how respiratory patients can fly by maintaining their energy and conserving their oxygen while in flight.

My father thankfully pulled through that summer. I decided to try to deploy the tactics I read about flying with respiratory disease and hopped the plane home. I wore my pulse ox the whole trip. My lowest number was 69% and my highest in the air was 79%. I’m lucky that my meter has a built in save and storage feature that allows me to keep logs for my team. My next pulmonary appointment I showed my team my pulse ox logs, and it was decided that I would have to fly on oxygen from now on. I was also told that there is a flight challenge test that they can give pulmonary patients to see if oxygen would be needed to fly. So we will take that test periodically to monitor my flight needs. I never knew there was such a thing. I vow to be much safer in the future. I just never knew I should have asked my team about flying with advanced PCD progression. I’ve flown many times in my life, and this is the first I’ve ever experienced a near emergency. Be safe, my flying PCD friends!

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- Visit Smile E. Turtle's Amazon Wishlist

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- Or sponsor a PCD Smiles cheer package today!

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Thank you for your consideration!

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