Ask Smile E. | PCDsmiles

Written by PCD Smiles on 26 March 2022. Posted in Ask Smile E..

Getting medication refills on vacation

Dear Smile E.

Is there a trick to getting medication refills for vaccination? I hate to have to mess with it while traveling, or do I have to? Your thoughts!

Signed,

PCD Vacationer

Dear PCD Vacationer,

You can absolutely get your medications refilled prior to a vacation, so that you don’t have to mess with it during your vacation. There are just a few things to keep in mind. First you are only permitted to get one vacation early refill in a rolling twelve month period. So basically if you request on you can’t request another for another twelve calendar months. Knowing this be sure that you request refills for every single one of your nonscheduled medications at the same exact second with your pharmacist. Scheduled narcotics and or other regulated medications can not be filled early even with a vacation waiver, those will have to be filled during your vacation and are almost impossible to even do that. Unfortunately scheduled or regulated medications are virtually impossible to get outside your regular pharmacy and days early. To get a vacation refill contact your pharmacist and ask for a vacation waiver/ early refill due to vacation, every pharmacy has a different name for it. Your pharmacist will contact your insurance provider and submit for a vacation waiver approval to get your medications approved early for reimbursement. It’s then up to your insurance company to decide if you qualify for early coverage refills, you should if at least 365 days have passed since your last vacation waiver. Also, and I can’t stress this enough, when you ask your pharmacist for a vacation waiver be sure to include every prescription that you need early at that time. Once the waver is submitted for by the pharmacist you can not modify the order. So be sure that you include every medication that is eligible for refill. Remember narcotics and other scheduled/ regulated drugs like Ativan can not be refilled early even if your doctor agrees to it, per DEA enforcement rules. I hope that you have amazing time on your vacation!

Yours Truly,

Smile E. Turtle

Do you have a question for Smile E.?

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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.***

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Written by PCD Smiles on 20 March 2022. Posted in Ask Smile E..

Hair Loss a PCD Side Effect?

Dear Smile E.

Why is my hair falling out? Is this something to do with PCD or not?

Signed,

Losing My Hair

Dear Losing My Hair,

I’m not exactly sure why you are losing your hair. What I do know it that it can be a side effect of certain medications and or certain illness and infections. The best advice I have is to seek evaluation from a dermatologist who can also offer several treatment options. It’s not a known PCD issue, hair loss that is. However indirectly hair loss can be caused by treatment of diseases and just age related hormone changes. This is actually something I’ve dealt with myself and am receiving help from my dermatologist. I’m glad that I asked him about it while he was treating my psoriasis, which is likely the cause of my hair loss and not my PCD.

I would caution you about over the counter hair treatments as they can have serious interactions with the medications used in the treatment of PCD. Your medical provider and or your pharmacist can help you determine drug and hair growth treatment interactions. Good luck!

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!

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Written by PCD Smiles on 12 March 2022. Posted in Ask Smile E..

Throwing in the Towel

Dear Smile E.,

I’m exhausted and no one cares. Things have gotten rough over the last few years with my progression. When I’m sick and needing additional care from my team, my family doesn’t get it. So I’m home on IV antibiotics fighting pneumonia that would put a normal person down and in the hospital for weeks, I’m pumping my body full of chemicals, and my family expects me to continue with a normal person’s routine. However Thais same family would tel me to rest if I was admitted. However since I’m home and not admitted they expect nothing to change. Where is my rest and heal? Not getting admitted is great for me, but my family thinks nothing is wrong if I’m not admitted and I am expected to keep on keeping on. It’s not fair and I’m ready to throw in the towel. What should I do to get everyone to understand that I am sick?

Signed,

Throwing in the Towel

Dear Throwing in the Towel,

I totally get you! Believe it our not I’m in almost the same boat. This treating at home can be cruel. We don’t get the rest we need and people do not understand how sick we are. If I could reach through the inter-webs and give you a big old hug, I would. Don’t give up, because we in the PCD community have you! In the meantime have you joined our Facebook page Turtle Talk Café yet? On Friday’s we are discussing a book about boundaries and setting them for peace. I think that you would find the book very helpful as I have. If you’d like more information on Nedra’s book about boundaries please join us on Fridays in Turtle Talk Café or message me with a request for the book name. Please know that there are many PCDers in the community ready, will, and available to talk anytime day or night. You are not alone, please reach out and don’t throw that towel just yet.

PS. I’d you like I can help you find some counseling. Please don’t suffer in silence. We are here to help you.

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!

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Written by PCD Smiles on 06 March 2022. Posted in Ask Smile E..

Can I take a Bath While Running My IV Antibiotic?

Dear Smile E.,

Can you take a bath while your IV antibiotics are running in? I’m currently hospitalized and the nursing staff is unclear on this. I asked yesterday and was told sure, and aloud to get a shower while my IV ran. But today the nurse is adamant that it isn’t safe. I need my baths when I go home on Ivs and we don’t have a shower so I’ll have to bath in the tub. What should I do?

Signed,

Bathing on IVs

Dear Bathing on IVs,

You can most definitely bathe while actively running IVs. However there are a few safety considerations to take into account. First if you have any cardiac issues you should run your questions by your cardiology team for their unique advice based on your unique health picture. They will have all your information so that they can best help you make an informed decision. The other consideration is that you should never submerged your line or your access IV site due to infection potential. Be sure to hold your arm or your access site above the water line. Do not take extremely high temperature baths because this will speed up your blood flow and increase blood pressure and either one or both can increase potential unwanted side effects of the drug that you are infusing. It’s even possible that it could speed up the potential flow of your home iv ball pump in rare instances. For more guidance I encourage you to talk to your care team, including your infusion pharmacist. The best bet when bathing while on IVs is to shower, because you can let free flowing shower water temporarily flow over your IV site as long as you have it sealed with a waterproof tegaderm IV dressing. When in doubt ask your actual care team (doctor’s office.) I hope that you’re feeling better soon, and don’t forget to visit our “ Request a Cheer Package” link on our home page to request yourself a cheer package.

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!

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Written by PCD Smiles on 06 February 2022. Posted in Ask Smile E..

What is Clean Water when Cleaning Equipment

Dear Smile E.

Is it safe to clean my airways clearance devices with water straight from the facet?

Signed,

Water Worries

Dear Water Worries,

When cleaning your airway devices including nebulizer cups, clean water is recommended. Just what exactly clean water is is often misinterpreted by the masses. Nontuberculosis mycobacteria (NTM) experts have starting sounding the alarm that most NTM infections are being driven by use of non-sterile water and or distilled water to clean and rinse airway clearance devices. Water straight from the taps in not clean/sterile by any means. The process used in water sanitization in residential zones does little to kill off nontuberculosis mycobacteria in residential water sources. NTMs do not make the average population sick, but in immunocompromised and respiratory-compromised people NTM can cause life threatening illnesses. The most common NTM to cause illness in PCD patients is nontuberculosis mycobacterium avium complex (also known as MAC). However thirteen percent of PCD patients will endure a mycobacterium abscessus infection which one of the hardest NTMs to treat let alone eradicate. NTM experts are advising patients to stop using distilled water even in their sinus rinses as the process to distill water also is not effective to kill off NTMs in the water. The advice is to boil your tap water for five minutes before using it to clean your equipment, remember to mask while boiling to protect yourself from organisms that escape into the air while boiling. Your provider can also prescribe actual sterile water for your cleaning needs. In a pinch and while traveling NTM specialist agree bottled spring water can be used instead, however weekly or nightly sterilization processes should be completed with all equipment depending on manufacturer recommendations.

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!