PCD Awareness Month a Necessary Evil?
We are a little less than two weeks away from another PCD Awareness Month. I’m just not feeling it this year. It seems to get a little more difficult each year, and I am not sure why it gets more difficult. Maybe it’s I’m getting older and older and my PCD progression marches on with time. Maybe it’s I feel no one is listening and no one actually cares. Honestly it’s probably just vid fatigue. Everyone is tired of hearing about medical issues. You got what a you got so get on with life, is pretty much how I’d sum up everyone’s attitudes. It’s no secret that 2022 has been a hard year for me. All things considered, and all things laid bare I’m ready for a change. Though I’m not sure what kind of change I’m looking for either.
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Patient Exploitation by My Own Parents
My parents were scammers, no seriously they were. I’m not lying about that. My parents coned so many people through the years and I was the subject of their number one con game. It’s truly a sad story.
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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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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.
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.
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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.
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!
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