My Primary Ciliary Dyskinesia (PCD) Story 

Your comment actually inspired me to make my recent video! :) Feel free to check it out if you want. Thank you so much for your comment!!

You’re welcome! And sending good luck wishes to the both of you!

Of course, and you’re welcome! I wish both of you the best of luck on this journey. The fact he was able to be diagnosed so young makes me so happy to hear. I was in high school when I found out, and just being able to put a name to my condition helped me feel a lot better both mentally and physically.

How is your son now, which treatment are you using? Please reply

I appreciate your comment. You’re actually the first person I’ve “met” that has PCD as well. I have not heard of the hypertonic or tobi cycle, however, I used to wear a vest. Currently, I use a vapor like machine to breathe in my medication and I try to cough a few times daily in order to clear my best. I hope this clears up any confusion !!

​@@alexikari6507 Hi, nice to meet you. Well, I am trying to write it in English my best but hope you don't misunderstand. because of my english not good enough. I ask this because I have a daughter who is facing the same difficulties. You used to use the vest, but now you don't you use it? We're considering buying the vest, but we're worried because the price is too high and its performance. So is there a special reason why you stopped using it?

@@hanssong718 Your English is great! No need to apologize. The reason why I no longer use the vest is because I felt it was too awkward to use personally, and it did not work as well for me. However, that is not to say it does not work the best for everyone. I think for younger children it may be better to use the vest and/or mask. Currently I use “Philips InnoSpire Essence” for my medicine. This is basically a “pipe” you breathe in for your medicine, however, the mask may be preferable for younger children? I also use an Aerobika device which is similar to the vest in that is vibrates your chest. Again I think the vest may be better for kids. It all comes down to preference! In my more recent video I show both devices so feel free to check it out if u want. I hope this answers your question!

I also use the vest, with aerobika and a Acapella. I inhale Albuterol, hypertonic saline, Brovanna, and use tobramycin nebs 28d and then 28 d off. I am also on daily Prednisone and mycophenolate as well as azithromycin and bactrim. I am on oxygen 24/7. I qualify for a lung transplant now and am an example of how this disease can be very severe and life threatening as I have been on life-support many times. I have to go into the hospital multiple times a year for IV antibiotics. All of this is because no one knew what was wrong as a child and I didn't get proper care until my early 20's. My biggest advice is airway clearance, airway clearance, airway clearance. Do whatever you have to do to get it out. Take all your meds even if you don't think that you need them. Make sure you see a pulmonologist and get lung function studies on a regular basis so that if something changes they can adjust your therapy and meds before you have permanent lung damage. Everyone with PCD is different and may need different therapies, but we all have the potential to end up like me. So keep doing whatever works for you and do it as many times a day as you need to or your physicians ask you to do it. And keep active on a regular basis as exercise is natural airway clearance. Stay strong fellow dyskies!

@@devangel3614 I’m so sorry to hear how much you’ve had to go through. The idea of getting a lung transplant is such a scary thing, but I am wishing the best for you!! I hope you have the opportunity and that it all works out smoothly. I also started getting proper treatment at my early 20’s so I am much more thankful now than I was in the past about my scenario. Thank you for your comment and for being so strong. You got this!!