Topic Thursday | PCDsmiles

Written by PCD Smiles on 31 August 2022. Posted in Topic Thursday.

The Durable Medical Lifetime Warranty Conundrum

Lifetime warranties on durable medical equipment seems like a gift but is actually a hidden nightmare. When I first got my vest airway clearance system by Hilrom back in the early 2000s I was so excited that it came complete with a lifetime warranty of not only the air generator but the hoses, replacement vests, and even the travel bag for the complete system. It was amazing that I wouldn’t have to worry about saving for replacement parts, labor, and so on. Little did I know this supposed great warranty would become a major headache later in life.

Now don’t get me wrong the vest warranty has served me well. Like the time the machine just shut off mid treatment, totally powered down. I unplugged it for five minutes like my Mister’s first question on any electronic when it acts up, “Did you unplug it and wait five minutes before plugging it back in?” is always his first question when I say things are messing up. After a five minute break and plugging my vest machine back in, it took off again. This started happening about once a month, but the machine was ten years old by that time. This cycle of shutting down and unplugging started becoming more frequent, till it was a daily occurrence and yet I didn’t call Hillrom. I mentioned it to the Hilrom representative at the PCD Scientific Conference that I attended in Minniapolis, just as a, “I love my machine and the only issue I’ve had is…”. The representative was like, “Oh no that shouldn’t be happening. Have you called customer service?” I told her no because it wasn’t that big of an inconvenience to me. She insisted getting my information to contact me later. Two day went by and the UPS man knocked on my door, in his hands was a brand new vest 105 machine by Hilrom complete with new everything except a new travel bag. The note in the box said to just place my old air generator only in the box and hand it back to the waiting UPS man. I was impressed. It was even easier than calling customer service when I needed new vest size due to weight loss and or weight gain, they never complained. Like I said I’m blessed with a lifetime warranty on this machine.

The trouble with lifetime warranties on durable medical equipment came to my attention when the new Hilrom Monarch Vest came out. I seriously wanted one. Oh to be able to be free of so many wires while vesting was very appealing to me. Now I couldn’t and shouldn’t go completely free of tubes and wires while vesting and neither should anyone. Why? The vest was made to be used with nebulized airway medications to help thin and mobilize secretions while the vest shakes you. If you are vesting without the moisture being inhaled then you are not getting the full benefit of any vest machine. Anyways, I digress… I really wanted the Monarch but I had some weight to lose, because the Monarch has a weight limit of 200lbs. Though my clinic respiratory therapist at the time said that she preferred 175lbs. or less for effective use. And then she brought up the difficulty that other patients where having getting the Monarch vests covered by insurance if they had a 105 Vest model with a lifetime warranty. The insurance industry in their infinite wisdom was using the lifetime warranty of the vest machine to deny upgrades because the patient already had a cost efficient way of doing airway clearance treatments with a vest that had a lifetime replacement. Basically it wasn’t a fiscally sound investment for the company to get you a new machine, if you already had a working one. Why waste money… That was their reasoning.

Now in my insurance policy, like most of you I assume, there is a five year technology upgrade available for durable medical equipment and things. We are all entitled to those technology upgrades as science advancements are made. However there is this little known loophole that insurance companies have that say five year technology upgrades aren’t permitted if the technology that the patient has is in working order or has a lifetime warranty. Did you know that? Neither did most vest companies like Hilrom. Once it was discovered durable medical equipment companies modified their lifetime warranties on all future technology and or just stopped lifetime warranties altogether by replacing them with five year limited warranties. Lifetime warranties on durable medical equipment should be a lifesaver, unfortunately they are the devil in my opinion.

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Written by PCD Smiles on 18 August 2022. Posted in Topic Thursday.

Turtles, Turtles, and More Turtles!

Turtles, turtles everywhere I look as I age. They concern me, but I press on. Each day another turtle, should I worry? Actually turtle days are quite common in PCD. Huh? You see it isn’t uncommon for respiratory patients, like those with PCD to require more energy just to exist, breathe, do normal every day activities, and everything else that normal healthy people do without thought. Did you know that respiratory patients can require up to ten times the amount of calories (or active energy) than their healthy counterparts. This is why it’s hard to gain weight as a baby or toddler, basically called failure to thrive. And as the person with respiratory disease progresses to a more severe form of their respiratory disease they start to lose weight at a rapid pace. In fact unintended and or rapid weight loss is a key sign that a respiratory patient/ PCD patient might be experiencing an exacerbation of their symptoms. The rapid or unintended combined with other factors are how your medical team might consider that you need treatment for an exacerbation of symptoms.

If PCD patients require more calories just to exist, then imagine the calories they need if their active. This is why those with PCD experience the so called turtles days after a string of days where they’ve been on the go. And when they are little or older even just one day or one activity may require a rest day. Turtle days are basically rest days. They are days where it hard for those with PCD to get moving even to get out of bed, do their therapies, and or even just to eat. They may or may not experience fevers or low grade fevers, increased coughing, increased symptoms, feeling run down, and or basic malaise. During these turtle days it’s important to rest but it’s essential to still get their therapies in. Turtle days here and there are really no cause for alarm unless they last for several days, however when in doubt speak to your medical team. It also may be a good idea to have the talk prior to turtle days with your team, so that you have a plan and are not unnecessarily worried about your PCD loved one.

As to why I’m concerned about turtles, my turtle days happen more frequently now that I’m older. Lately it seems everyday is a turtle day. But I think I see the light at the end of the tunnel. I’m coming off almost a year of feeling worse than I have in ever. Each day feels more normal with less and less turtles. I love turtles don’t get me wrong. I just worry about PCD progression and my lack of being what I once was.

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Written by PCD Smiles on 26 May 2022. Posted in Topic Thursday.

Yup! Still Sick

That’s is PCD for you. After five months of trying to fight this pseudomonas pneumonia at home, we’ve decided to get more aggressive and do an admit. The FEV1 slide is getting concerning to my team and my muciod pseudomonas isn’t responding to any of the IV drugs we’ve tried at home these past five months. I’m tried, I’m exhausted, my breathing is off, and I’m still sick. I’m also frustrated, for many reasons.

I lost my father earlier this month and things have gotten crazy. It’s been like hoarding cats every single day. I need a break, I need to heal, but mostly I need to feel better. I’m frustrated at spinning my wheels so to speak and get absolutely no where with feeling better. Our plan is to pull in infectious disease and see if we are missing something. My current team believes it might be a reoccurrence of my NTM and we just haven’t managed to catch it on cultures yet. That’s what my last go around with failure was, it was NTM abcessus stirring up stuff constantly. We’ve got some options to turn things around, but which will actually work remains to be seen.

In times like this I ask you to give your PCD loved one a break. They shouldn’t have to wrangle their tribe, ward off misinformation and gossip, and be all stressed out keeping everyone onboard. Times like these are seriously where you should be looking to be the less stressful person in your PCD loved one’s life.

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Written by PCD Smiles on 18 May 2022. Posted in Topic Thursday.

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.

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Written by PCD Smiles on 11 May 2022. Posted in Topic Thursday.

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

- 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!