Dear Ask Smile.,

Does living near the ocean help people with PCD? If not where would?

Signed,

Willing to Move for my PCDer

Dear Willing to Move for my PCDer,

Honestly there isn’t enough longterm data for PCD regarding climate, there isn’t even enough data for CF either. Some patients with PCD and some patients with CF report that coastal areas are great for them, due to salt content in the air. But researchers say the data doesn’t suggest if it’s a temporary thing that eventually wears off; like you tend to see in allergies when someone moves to a new area. The data also doesn’t tell researchers if in the long run certain climates help certain pulmonary diseases.

As far as where the best place to live when you have PCD, that is really a hard question to pin down. Some PCD patients report living near the ocean is best for them. Some patients report that a dry humid climates is best for them. Some patients report that a cold humid place works of them. And even some patients report they do better in hot and humid climates. This issue seems to be individually based per patient with no real scientific understanding to date.

Yours Truly,

Smile E. Turtle

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Dear Ask Smile E.,

I’ve currently been taking azithromycin Monday, Wednesday, and Friday but I’m still getting infections, why? Should I stop taking them since they aren’t working? I don’t want to end up with antibiotic resistance.

Signed,

Sick of Antibiotics

Dear Sick of Antibiotics,

Low dose prophylactic antibiotics are truly not meant to fight infections, nor are they meant to stop infections completely. First off, being low dose, the antibiotics are not powerful enough to be therapeutic to infections. Instead low dose prophylactic antibiotics, given to patients with respiratory diseases, are meant to target airway inflammation and reduce it. Airway inflammation in PCD is another way mucus can become stuck in the respiratory system. Stuck mucus is a breeding ground for additional airway infections. The thought behind low dose prophylactic antibiotics is to decrease airway inflammation. Which will help decrease the overall number of lung infections for a patient, delay the onset (start) of bronchiectasis, and delay or lessen the risks of developing infections like pseudomonas and even nontuberculosis mycobacteria.

As far as stopping your medication; I encourage you to speak to your doctor first before doing anything, including stopping any medication, as I am not a licensed physician. With that being said, your doctor may feel this treatment is actually effective for your particular situation. But only you and your doctor can determine that based on your unique goals of treatment. Also stopping and restarting antibiotics over short periods of time can actually lead to antibiotic resistance. As I said; this is a very important topic for you and your care team to discuss, so I urge you to reach out to your team for guidance. Remember you are an important part of your care team, so don’t be afraid to speak up when you have questions, concerns, or disagree with something.

Yours Truly,

Smile E. Turtle

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Dear Smile E.,

How often should your doctor do a culture and why?

Signed,

A Tissue Box a Day Habit

Dear A Tissue Box a Day Habit,

According to the PCD Foundation’s Consensus Statement, surveillance cultures of expectorated sputum are recommended two to four times annually for patients with PCD. These recommended cultures should be processed in the same manner as cystic fibrosis cultures. These cultures will help guide antibiotic therapy for future exacerbations. Additionally when the PCD patient’s infections aren’t responding to antibiotics that the infections are susceptible to then doctors should consider following up with NTM and fungal cultures, allergic bronchopulmonary aspergillosis testing, and bronchoscopy with lavage fluid cultures.

Surveillance cultures allow your doctor to track your overall lung ecosystem. This is important when deciding what tests to preform when you show signs of illness. It gives your doctor a starting ground to go off of. These cultures also help the doctor to decide what antibiotic therapy you might benefit from during an exacerbation. Knowing what organisms/ bacteria your lungs, sinuses, and or ears grow is an important part of managing your PCD.

Yours Truly,

Smile E. Turtle

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 Dear Smile E.,

I was diagnosed with PCD about a year ago, I’m in my twenties and I’m kind of worried about my future. I’ve recently started trying to research PCD and find out what’s in store for me. I see many people say that transplants are needed, but then there are an equal number saying transplants aren’t very common. In the new group I’m part of, there are very sick and very healthy people with PCD in it, and to make it more confusing they are all different ages. I see lots of debate on the subject, but no hard and true fast numbers. How can I go about finding what my future holds, whom do I believe, and whom should I compare myself with?

Signed,

Very Concerned and Confused

Dear Very Concerned and Confused,

Your questions are difficult ones. They are difficult because of many reasons, most notably the fact that there is no longterm quantifiable scientific data for PCD. PCD research is in it’s infancy and because of that there are no real answers yet, only guesses and assumptions. It’s kind of like with how PCD treatments are full of guesses and assumptions as well. What we know today about PCD is only based on looking at the small sampling of the confirmed patients with actual diagnoses of PCD. That quantifiable data doesn’t take into account any of the babies who died shortly after birth due to PCD complications, who had yet to receive a PCD diagnosis prior to their deaths. The data also doesn’t take into consideration the number of transplant patients who went undiagnosed with PCD and received transplants without ever receiving a diagnosis of PCD. The data also doesn’t count the over twenty-five thousand people who researchers believe are in the United States alone and actually have PCD but do not even know it, nor suspect they even have PCD. And the scientific data to this point also doesn’t include information from those people who went their whole lives, however long that may have been before their death, without a PCD diagnosis.

What I can tell you is, that PCD has such a wide range of severity that trying to compare yourself to another PCD patient would be like trying to nail jello to a wall with a fork; there really is just no way to do it. PCD can be summed up as your body’s inability to naturally filter out germs, bacteria and particles. Now the hard part in determining your outcome is that every single PCD patient has unique experiences. Unique in the way that every single one of them is exposed at different times, in different places, and a different points in their lives to all sorts of particles, bacteria, and germs. Each patient also has their own set of comorbidities; which is the simultaneous presence of two or more chronic diseases or conditions in the same patient. Each patient also has their own unique date, time, or point in their life when their medical treatment began; and their own unique medical journey. All that and more shapes the way that their bodies are damaged by non-working cilia, it shapes the speed of the damage caused by their non-working cilia, and it shapes the way infections become nastier and antibiotic resistant as well. So you see it really isn’t fair to yourself and to your life to try and narrow the scope of your life and it’s journey to one or two unique set of outcomes or groups of PCD patients.

My best advice, based on my own journey with PCD, is get out and live your life, follow your treatment plan, be actively involved in shaping your treatment plan, be equally involved in shaping your medical team, actually get to know and study PCD, allow PCD to become part of your journey don’t fight it, work hard to defy the odds, and don’t let anyone try to quantify your experiences into a neat little box. I say this because life is messy, and life is beautiful at the same time and can never be contained within a simple box. I write this while reflecting on my own journey with PCD, a journey were I was constantly given expiration date after new expiration date as I grew older. As I child I was prepared by those around me, with good intentions mind you, to understand that I would never grow old, drive a car, graduate high school, get married, work, and I could go on for hours about what I was told that I’d never experience or do. Suffices to say that I’m still here, and in hindsight, I could have done without the doomsday predictions shaping what I planned or didn’t plan for, for my future. I say all this with great love and guidance, because none of us are ever guaranteed a tomorrow; so live life to the best of your ability and try not to live too much in the tomorrows. Because as the saying goes; “Yesterday is history. Tomorrow is a mystery. But today is a gift, that is why they call it the present.”

Yours Truly,

Smile E. Turtle

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