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PCD Smiles 

PCD Smiles is a non-profit organization, funded primarily through donations.

Our mission is to bring Smiles to hospitalized PCD patients and or those PCD patients who have recently returned home from a hospitalization through the gift of Cheer Packages no matter their age. We are currently only in the United States & Canada 

To request a Cheer Package for you or your hospitalized PCDer, please visit our "Request Cheer Package" link and fill out our secure form.

If you would like to donate items to PCD Smiles's Cheer Packages, please visit our "Donations" page.

 

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; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

- To sponsor a PCD Smiles Cheer-box today!

https://store.pcdstyle.com/21-donations

- To shop for your “Official” turtle care ribbon gear today!

www.pcdstyle.com

or

https://www.smileecove.com/stores/cove

Thank you for your consideration!

 #PCDsmiles #PCDstyle  #PCDsmilesCookbook #PrimaryCiliaryDyskinesia #SmileEcove #TurtleTalk #TurtleTalkCafe #PCD#RandomFactFriday

#PCDawareness to help find a #cure4PCD!

Featured Articles

Daily Journal Prompt, May 23

 What is stopping you?

Environmental Influences in PCD

Did you know that the lung are your largest internal organ that is exposed to the environment? Yep, your lungs are exposed to the environment you are in. Even though you might have PCD just like me our environmental exposures are going to be different. Even if you have the same PCD gene as me, our environmental exposures and the impact of those exposures will be completely different. Kind of like every artist starting with the same canvas, think of our PCD as the canvas in question. Each artist then influences the canvas and creates their unique work of art. This is why I say the PCD is as much an exposure disease as it is a genetic one.

 

Like I said take two PCD patients with the exact same gene defect that causes PCD and compare them side by side looking for commonalities and you will likely not find a clear pattern. At least scientifically this has eluded scientists to date. Sure you can see trends and stuff like that, but when you get right down to it each patient’s individual exposures to bacteria and other environmental factors influence said patient’s progression trajectory. This is why it’s important to take reasonable exposure precautions to prevent these bacteria from getting into your system any earlier than possible. Once you likely get say pseudomonas into your lungs, it will likely be an up hill battle to get away from it in the future. Delaying contamination of your respiratory for as long as possible is extremely important in PCD care. Remember those of us with PCD take up to seven days to clear out what we breathe into our lungs compared to just twenty four hours for a healthy counterpart. Up to seven days for a piece of debris or bacteria to be cleared out of our lungs gives those things a huge amour time to attach, party in our respiratory system, and ultimately make us sick. Minimizing our exposures where possible helps us to keep permanent lung damage at bay for as long as possible. Keep coughing my friends, and turtle on.

 

Be sure to join us next week for another Topic Thursday.

 

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; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

- To sponsor a PCD Smiles Cheer-box today!

https://store.pcdstyle.com/21-donations

- To shop for your “Official” turtle care ribbon gear today!

www.pcdstyle.com

or

https://www.smileecove.com/stores/cove

 

Thank you for your consideration!

 #PCDsmiles #PCDstyle  #PCDsmilesCookbook #PrimaryCiliaryDyskinesia #SmileEcove #TurtleTalk #TurtleTalkCafe #PCD#TopicThursday

#PCDawareness to help find a #cure4PCD!

  

Emotions & PCD

Being emotional when you have PCD is hard. Let me explain. Primary ciliary dyskinesia is a rare, autosomal recessive disorder of motile cilia that leads to oto-sino-pulmonary disease. That’s where is gets complicated. Once the body starts seeing the damage of not having properly working cilia, then the you enter into chronic oto (ear) disease, chronic sino (sinus) disease, and chronic pulmonary disease. This disease progression leads to lots of complications for the individual. These complications vary depending on what else the individual has going on, including emotions.

 

Have you ever tried to have a good cry while you’ve had a sinus infection or a really bad cold? Yeah, sinus infections and feeling like you have a really bad cold is my every day. I’ve known nothing else in my entire memory of my life. Remember in PCD the cilia are broken at conception, you just don’t magically get PCD in your twenties, thirties, forties, or beyond, nor even before those ages either. PCD is a genetic level disorder of motile the cilia. The cilia are put together wrong from the start, you know at conception. Anyways I digress…

 

My father passed away unexpectedly last Thursday evening. In fact. if you’re reading this on the day it was posted, today is his funeral and last evening was his viewing. Crying and emotions have been running high this past week for me. The emotions mixed with my current progression of PCD have made my everyday even more miserable. Every single time I get started crying, my mucus in my nose gets overly runny, I get choked up, I can’t breathe out my nose, and the tissues go flying. Then I get even more upset and the breathlessness starts, I started coughing, I get choked up, my airways close off, I panic that I can’t get any air in, and my PSO2 stats plummet into the 80s. It’s a miserable cycle. And I hate it. I don’t feel I can grieve well enough without putting myself at risk. I’m fourteen hours from home and my care team. I’m also just shy of fourteen days on a new IV antibiotic round for a PCD exacerbation caused by a pseudomonas pneumonia that won’t go away. I’ve been fighting this since January of this year and already did a nine week course of continuous around the clock IV antibiotics that failed to get me back up to snuff.

 

Besides all the PCD misery, I’m getting looks from people when I cough, have snot rolling, get chocked up, and so on. If they are not familiar they scurry away for fear I’ve got something like the 2020 thing. If they are familiar they wonder if I’m heartless for not being an emotional mess. I am an emotional mess, but I know if I don’t keep it in check then I’m likely going to end up in the emergency room or at the very least breathlessness with snot pouring out my nose. I should be completely comfortable around my people with my PCD and all that goes with it, and be able to process my emotions. However I can’t. Why, because when I seem in distress then someone is wants to call an ambulance, people are hovering or scurrying away, and they are just exacerbating my symptoms and emotions to the point all heck is breaking lose.

 

It may seem heartless, but I can’t wait till this time next week when I’m back home at the farm and can process this tragedy in private and out of sight of others. Remember if you have a PCD loved one give them a calm safe space when they are emotional to process and deal with their emotions and what those emotions are doing to flare their PCD symptoms. I’m not sure people really understand how hard being emotional or going through emotional things is when you have oto-sino-pulmonary disease. Give us a break when we are like this, help calm us down, provide calm, don’t hover, and don’t freak us out anymore than necessary. If you do this, a lot of the time an ambulance ride or trip to the emergency room is not absolutely necessary. However when in doubt always seek immediate help for your PCD loved one in distress.

 

Be sure to join us next week for another Topic Thursday.

 

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; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

- To sponsor a PCD Smiles Cheer-box today!

https://store.pcdstyle.com/21-donations

- To shop for your “Official” turtle care ribbon gear today!

www.pcdstyle.com

or

https://www.smileecove.com/stores/cove

 

Thank you for your consideration!

 #PCDsmiles #PCDstyle  #PCDsmilesCookbook #PrimaryCiliaryDyskinesia #SmileEcove #TurtleTalk #TurtleTalkCafe #PCD#TopicThursday

#PCDawareness to help find a #cure4PCD!

  

Slow Down!

This week reality has plum smacked me in the face my friends. I’m fast approaching the age of fifty and while my counterparts are mostly already there, or close to there as I am, they seem to be oblivious to the fact that I’m struggling. Struggling to keep up. It’s often very hard for those without cardio-pulmonary conditions to fathom being breathless, getting sick from pushing themselves, and so much more. If you have both cardiac and pulmonary issues then you get a double whammy of suck.

 

I think people forget that you have a chronic condition when you’ve had it so long, either that or they haven’t seen your declining health up close and personal as of late. This week I found myself in what felt like a marathon chase through the grocery store with my companion/ helper while I’m vacationing in my hometown. Don’t get me wrong, they weren’t racing, they were walking. Back in my day I too could keep up the power walk through the grocery store and be just fine. Yesterday I felt like I was a toddler struggling to keep up with giant people who could walk better, faster, and further than I could. You know those little bitty kids you see chasing their people through the store aisles and running to keep up because they had little legs. I’m actually a few inches taller than my companion is. They were running circles around me. I felt like I needed to lay down in the middle of each aisle-way every fifty feet. I kid you not! They weren’t exactly noticing my plight, because they just kept going leaving me in the dust. All the while chatting away with me and expecting answers and conversations, completely oblivious to my breathlessness and that fact at one point I thought I was gonna die I was so out of breath. My coughing didn’t register with them either. In fact I felt ignored. Now is my companion that heartless? No! Today, in hindsight, I think they were just being polite and not making a fuss and where graciously ignoring the situation. But maybe, just maybe they didn’t realize how truly in trouble I was. I need to learn to advocate better for myself in the presence of people I want to be liked by, be friends with, or that I don’t want to be a burden to. Believe it or not, it’s hard to advocate for your needs with family and friends. If you have a struggling PCDer in your life please slow down!

 

 

Be sure to join us next week for another Topic Thursday.

 

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; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

- To sponsor a PCD Smiles Cheer-box today!

https://store.pcdstyle.com/21-donations

- To shop for your “Official” turtle care ribbon gear today!

www.pcdstyle.com

or

https://www.smileecove.com/stores/cove

 

Thank you for your consideration!

 #PCDsmiles #PCDstyle  #PCDsmilesCookbook #PrimaryCiliaryDyskinesia #SmileEcove #TurtleTalk #TurtleTalkCafe #PCD#TopicThursday

#PCDawareness to help find a #cure4PCD!

  

Struggling with Treatment Compliance

A huge issue with any chronic illness is treatment compliance. Did you know that in order to listed for any transplant in the United States that the patient and their caregivers have to show their willingness to comply to treatment, any treatment prescribed or recommended by your team? Yes really, if you are not going to comply with treatment then how are you going to take the necessary steps to protect that precious donated organ that they are giving you.

 

In PCD care we already have such conflicting treatment recommendations from experts around the world. We have a PCD specialist right here in the states that thinks airway clearance techniques aren’t needed in PCD care because the PCD patient retains the body’s natural cough clearance. There is an equally prominent PCD and Bronchiectasis expert that says airway clearance is an absolute must to ward off early onset pseudomonas and mycobacteria infections in PCD patients. The biggest thing is that there are no scientifically proven treatments, medications, diet, and or therapies for primary ciliary dyskinesia patients, not even anything FDA approved i the United States.

 

Now add in the internet and the world stage of other medical systems in the world and their treatments and guidelines on how they think PCD should be treated and it’s no wonder you have patients like me scratching our heads. Scratching our heads trying to figure out what we really should be doing to help ourselves. Because so and so in this support group says do A,B, C and another person says do A & C, but doing B isn’t recommended in PCD care by their governing medical body for their country. One country uses N-acetyl cysteine (NAC) and another country says absolutely do not use N-acetyl cysteine (NAC) in PCD. It’s all very confusing to the average patient, especially the younger generation.

 

I truly believe this disconnect is the reason there is so much noncompliance issues surrounding treatments especially airway clearance in primary ciliary dyskinesia care. I myself struggle with compliance for different airway clearance techniques. Part of me just hates them. And part of me doesn’t trust that they work. I really struggle with am I making things worse. What does anyone really understand about PCD treatments yet? These are all the things swirling through my head as. I dread the next treatment session.

 

My personal thoughts are that this issue isn’t going to get any better until we have better studies that answer some of these questions. And we have experts that are consistent and maintain continuity of recommendations across the board. I mean how do we expect the youth to get on board with treatments that even some PCD experts can’t even get behind. I really think that the experts and the clinicians need to meet patients where the patient is. Some of us just can’t wrap our heads around the conflicts amongst the experts and the recommendations. If we had a set of guidelines that were across the board, no expert descent then maybe more of us would be on board with airway clearance treatments and PCD treatments in general.

 

I think caregivers could take a page from this thought of meeting the patient where they are. It’s okay to switch up your airway clearance. It’s okay to make it fun and relaxing or both at the same time. Airway clearance doesn’t have to look the same for every single one of us. And honestly constantly pushing us to where we aren’t ready isn’t doing anyone any favors. Try meeting your PCD loved one where they are, where they are comfortable, and then slowly working up to where you want them to be. PCD is a process, it stretches out over decades, and there is no finish line. We all, patients, caregivers, and medical professionals need to relax, try to be supportive of one another, and work together to work through the process of life with PCD.

 

Be sure to join us next week for another Topic Thursday.

 

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; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

- To sponsor a PCD Smiles Cheer-box today!

https://store.pcdstyle.com/21-donations

- To shop for your “Official” turtle care ribbon gear today!

www.pcdstyle.com

or

https://www.smileecove.com/stores/cove

 

Thank you for your consideration!

 #PCDsmiles #PCDstyle  #PCDsmilesCookbook #PrimaryCiliaryDyskinesia #SmileEcove #TurtleTalk #TurtleTalkCafe #PCD#TopicThursday

#PCDawareness to help find a #cure4PCD!