Dear Smile E.

What’s the best nebulizer machine, preferably quite and quick?

Signed,

Nobody has Time for This

Dear Nobody has Time for This,

The best nebulizer depends on your endgame. What are you looking for is what you have to decide. Fast nebulizers are rarely quite and rarely hold up more than a year with PCD treatment regiments. The quite ones usually break the medication down to the point it destroys the bonds of the medication and renders the medication useless, so you’re basically nebulizing water. Sure you can put the medication is the neb cup and it will mist, but you are breaking the molecular bonds to the point the medication isn’t even the medication anymore. You end up wasting your time and not treating anything. The same goes for mesh nebulizers, they do basic bronchodilators and maybe mucomist, however hypertonic and pulmzyme are basically ruined like water and they destroy the mesh screen in the machine. Inhaled antibiotic solutions gum up the mesh screen and you end up basically replacing them daily or it affects the machine’s performance. Any of the above will affect the life of your machine due to poor performance due to pushing the machine beyond its limits.

Then let’s talk treatment length. While I understand the need to be fast that just isn't realistic. Especially if you are wanting the full effects of the medication and the proper airway clearance. These medications take time to work. Airway clearance takes time if you want it to be effective. Otherwise why are you even bothering. Airway clearance takes commitment, concentration, and dedication. Remember our cilia are broken and they do not do their job. We have to manually do these daily. Think of airway clearance like you do brushing your teeth. You wouldn’t skimp or would you? You need to understand the ramifications of not doing airway clearance effectively. It sucks. I know, from personal experience of over fifty years. To do effective airway clearance, you need to get the medication in the proper way and do the airway clearance techniques to the best of your ability. This is going to take anywhere from twenty to thirty minutes each and every treatment. This requires a workhorse of a nebulizer machine. Rarely portable and or battery operated nebulizer machines can hold up to the time and the workload, they just aren’t designed for it. You can try it, and you can try mesh or the supposedly fast machine; but you will find that they do not hold up. This means replacing them oftentimes a few times a year. Remember most insurance companies will only buy you a new nebulizer machine every five years.

You need a machine made to be a workhorse, like the PARI brand designed for heavy-duty use. Or check with other manufacturers for heavy duty machines made to withstand treatments commonly prescribed for cystic fibrosis. Treatments prescribed for primary ciliary dyskinesia are exact mirror images of those found in cystic fibrosis, in most cases. You can also look in to medical grade air compressors or high grade commercial air compressors. Look I get it, treatments are huge time sucks and they are loud. Unfortunately it goes with the territory. But as I said in the beginning you really need to know your endgame to figure out what and where you want to go when it comes to selection of a nebulizer machine. I suggest that you talk to your PCD respiratory therapist and or your PCD medical team about this issue before purchasing a new device or trying anything suggested here in this website or on the internet in general. Remember be safe.

Yours Truly,

Smile E. Turtle

Do you have a question for Smile E.? Please EMAIL your questions to; This email address is being protected from spambots. You need JavaScript enabled to view it.

Tune in next Sunday to read the latest Ask Smile E. Don’t forget to 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!

***Please speak to your respiratory therapist or your PCD medical team before commencing any new treatment. DO NOT start using a device, or technique, on this website if you have not discussed this with your PCD team first.***

Dear Smile E.

Can I still burn candles after a PCD diagnosis has been made? I mean is it safe to do so?

Signed,

Concerned Parent

Dear Concerned Parent,

Can I assume that you have a child with a recent PCD diagnosis? In any case, this is something that you may want to discuss with their medical team for more information on. The short answer is probably going to be no, especially considering all the information on air quality, air pollutants, and such things regarding pulmonary patients. Most pulmonologist will give you the information that it’s probably best not to. And I’m not physician and my advice isn’t meant to replace that advice.

The long answer is life is life and so are exposures. Some PCD adults actually do enjoy candles, even campfires and wood stoves too. I am one of those people. As with anything there are risks and there are benefits. Figuring out those are unique to each person in the planet, PCD aside. I burn candles for the light, as my sense of smell from the affects of PCD is virtually gone. I don’t get any smell enjoyment from candles in the slightest anymore. However, even though I can’t smell them, certain chemical smells bother my lungs and send them flaring. When choosing a candle scent I have to weigh those reactions to my choice. And even then the candles I do burn, aside from being chosen not to make my lungs reactive, I chose scents pleasing to my partner instead. My partner can smell, I can not. So those might be things to consider about your PCD loved one.

Yours Truly,

Smile E. Turtle

Do you have a question for Smile E.? 

Please EMAIL your questions to; This email address is being protected from spambots. You need JavaScript enabled to view it.

And tune in next Sunday to read the latest Ask Smile E.

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!

Dear Smile E.

Which nasal wash device is best for primary ciliary dyskinesia?

Signed,

Device Confused

Dear Device Confused,

Nasal wash device choice in primary ciliary dyskinesia (PCD) care is extremely important as compared to the general population. This is because the secretions or rather mucus in PCD can be rather thick and sticky due to the physiological factors of having PCD. The thick sticky mucus can not be sheared from the airway walls by normal neti pots or gravity fed nasal wash devices. You really need something that will give the wash the ability to shear the thick sticky mucus from the walls of the sinus passages. The nelimed squeeze bottle works well for this, in fact it is the PCD ENT specialist choice for nasal wash appliance device over any other appliance including other nelimed products. Contrary to recent social media reports that the nelimed squeeze bottle can not be sanitized is completely false and strongly disputed by not only the manufacturer but also by infectious disease experts in PCD, CF, and NTM care. The electric devices like sinugator or the navage are highly discouraged by these same specialists because these devices can not be completely sterilized and therefore the risk of reintroducing airway bacteria back into the patient is greatly increased. Nasal appliance device manufacturers and medical specialists strongly recommend that each patient speak to their own care teams for recommendations of which nasal appliance device will work best in the patient’s overall health needs. I also recommend speaking with your specialist as well. What works for one patient may or may not apply to any patient because of individual bacterial exposures and risks.

Yours Truly,

Smile E. Turtle

Do you have a question for Smile E.? 

Please EMAIL your questions to; This email address is being protected from spambots. You need JavaScript enabled to view it.

And tune in next Sunday to read the latest Ask Smile E.

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!

Dear Smile E.

A recent social media influencer claims that albuterol and other bronchodilators increase bacterial infections. Is there any truth to this?

Signed,

Concerned Parent

Dear Concerned Parent,

You can rest easy knowing that this is in fact not true in most cases. Albuterol and other bronchodilators help to relax and open the airways to prevent bronchspasms. These medications are extremely important in helping people with mucociliary clearance disorders like PCD clear their airways of thick sticky stuck mucus. They help to relax the airways and counter bronchspasms that may occur during airway clearance techniques or just the movement of the thick sticky stuck mucus itself. Opening the airways and relaxing them may introduce new bacteria or really move around bacteria laden mucus already in the airways. So it may seem like bronchodilators exacerbate your condition, but they are really helpful in allowing your airways to relax while they are being cleared. I’m not sure why the social media influencer is trying to get people to stop their bronchodilators, but this may be extremely dangerous for certain subsets of patients like asthmatics and others who have mucociliary clearance disorders like PCD.

My best advice would be to discuss this and all concerns related to your PCD loved one’s treatments and medications with their entire medical team. And as always, never stop, start, or change any medications or treatments prescribed without discussing it with the prescribing physician for the safety of you or your PCD loved one.

Yours Truly,

Smile E. Turtle

Do you have a question for Smile E.? 

Please EMAIL your questions to; This email address is being protected from spambots. You need JavaScript enabled to view it.

And tune in next Sunday to read the latest Ask Smile E.

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!