Living withPCD

Morning all! Hope everyone is as well as can be expected!

I’m 33 with PCD. Unfortunately for me, it was a late diagnosis and as a result I have bronchiectasis. When I was growing up my symptoms were always mistaken for asthma. I suffer with sinus problems too.

I was wondering what everyone does to keep healthy as part of their daily routine?

I’m a teacher (possibly the worst job for the condition 🙈) so do a lot to keep myself as healthy as possible.

I do the active breathing cycle as well as postural drainage on a night. I also clean out my sinuses twice a day using a sinus rinse which I think helps my chest as it reduces the post nasal drip.

I would love to hear what everyone else does or even some tips.

Best wishes

Danni

5 Replies

oldestnewest
  • Hi Danni. I'm the same as you. Late diagnosis PCD and have bronchiectasis. For me the best way I've found is just to keep active. Which causes all the deep down stuff to work loose and then it can be coughed up. So basically cough it up and on the days where it's not working - make a better effort to find where it's stuck (using the huffing / breathing techniques) and get it moving. Drink lots of water too. I've just had a barrage of tests at the brompton & my results are almost identical to 12 years ago when I was in my twenties. So I'm quite happy with that.

  • Hey! Thanks for the reply! I also keep active and that definitely helps!

    Thanks for the reply!

  • Hi Danni,

    I was diagnosed from birth and think lifestyle definitely plays an important factor in keeping well.

    For me personally being tired of stressed instantly affects my chest and suffer with tightness or the opposite where it goes really loose

    I’m generally active and go to the gym. But the biggest difference I found was cutting down on dairy and avoiding wheat where possible. I found I produce more mucus when I eat these- which isn’t as easy when I’m a self confessed, not fussy chocoholic! But have made general swaps eg cows milk for almond milk

    I do a Detox Program every 3 months or so for a week just to reset my system and always feel less mucusy after that and my ears are also better.

    I think everyone will have slightly different triggers but hope you can find the right thing for you

    Frankie

  • Hi Danni,

    sorry about the late diagnosis, but that's the case with almost all of us that are 30+ years old. Doctors just didn't know any better back then. I'm 33 years old as well, and what I do and what has helped me more than any possible medicine is strength traning and jogging combined with high-intensity sprints.

    The strength training consists mainly of heavy sets of squats, deadlifts, bench press and military press which helps the body function and get as strong as possible. The more muscle you have, the stronger you will be. One quote that I adhere to is: "Strong people are harder to kill than weak people, and more useful in general." To me it makes sense. If you are interested in this, I could elaborate more.

    Jogging and high intensity sprints help with conditioning and really get your heart racing, leaving you out of breath, which in return loosens the phlegm and allows me to cough more of it up. As a bonus, you feel really good after the session. Tired, but good.

    Doing the above really allows me to live fully. I conditioned my body to go hiking and mountain climbing with my wife, and can keep pace with most of my athletic friends, despite my spirometry and x-ray results by which I should be nowhere near as strong and conditioned as I currently am.

    To recap, for me physical activity is key, and not just any physical activity like walking the dog or gardening, which pretty much most people our age can do. Such activities should be considered a minimum to your physical capabilities, and if able to should push yourself bit by bit to performing more and more vigorous tasks, that will somewhat push your body's limits. When you reach a new milestone in terms of physical capabilities, what before seemed vigorous and hard will become easier for you.

    On the other hand, after writing all of this, I must add that I completely respect that many of us are just not capable of pushing our bodies beyond a certain comfort zone because of this debilitating disease. I didn't really know what my own body was capable of, and started out jogging for 30 seconds before getting completely winded. Now I jog at a steady pace for over 15 minutes, followed by 6 100m sprints. I started doing deadlifts 6 years ago with a 45lb empty barbell which seemed really heavy at the time. Now I can lift nearly 400lbs off the ground. My goal is to maintain my current level of strength and conditioning, and hopefully gradually add to it over my lifetime, despite any health setbacks I may encounter.

    Whatever you do, be cautious, listen to your body, listen to your doctors, and listen to your gut feelings. Good luck.

  • Hello Danni

    Sounds like you are doing everything you can to keep well. Twice daily physio therapy is the mainstay of treatment, plus healthy eating and exercise. You are doing all those things, so apart from avoiding, where possible, people who have colds, flu and other bugs and having your yearly flu jab, I can't offer any more advice.

    I was diagnosed with PCD at the age of 36, many years ago, after a lifetime of knowing I had bronchiectasis. I worked at one time as a Special Needs Teaching Assistant in a primary school for 12 years, with ages, from nursery to year 3. After a nasty bout of illness, my consultant at the Royal Brompton advised me, that it was really not a suitable setting for me to be working in, so I left that job.

    Wishing you all the best, keep well.

You may also like...