Can I live a Holistic Lifestyle with PCD?
There are no studies into holistic lifestyle alongside a primary ciliary dyskinesia (PCD) diagnosis. There are however a few antidotal reports from the PCD patient population where patients have self reported following a holistic lifestyle and seeing great benefits. What these great benefits are remains to be seen. Primary ciliary dyskinesia is a genetic level defect of the motile cilia throughout the body. One of the biggest effects to the body when you have malfunctioning cilia is delayed airway clearance as the body’s mucociliary escalator is compromised. Having a messed up mucociliary escalator means that airway clearance of debris and bacteria is delayed up to seven days compared to a healthy counterparts airway clearance time of up to twenty four hours.
When bacteria and or debris is stuck in the airways for extended periods of time, that bacteria and or debris likely will spin up into an infection causing inflammation and respiratory damage in its wake. People with primary ciliary dyskinesia are prone to airway inflammation and repeated infections. One of the best ways to clear the airways is with cough clearance. Luckily PCD patients retain their natural cough clearance. In fact constant daily productive coughing is a chief complaint amongst the patients and their families. Coughing is healthy in PCD as long as the cough is productive, meaning the patient is get mucus and stuff up. Nonproductive coughing Should be addressed by your medical team.
Holistic medicine has made a big come back over the last decade. Herbs, essential oils, and other remedies like exercise and manipulation are now more mainstream. These can seemingly go hand in hand with western medicine. There are a few things to keep in mind. Like diffusing essentials oils into the air should never been done in the presence of a person with PCD, due to the increased risks of the person with PCD developing lipoid pneumonia due to their poor airway clearance. Essential oil use for a PCD patient should be limited to topical uses for safety. Ingesting essential oils is also not recommended for people who have PCD, because of the risk of refluxing the ingested oils into the lungs.
Due to a person with PCD forceful coughing techniques during airway clearance treatments they are prone to refluxing due to the weakening of the lower esophageal sphincter. Manual chest physiotherapy is a mainstay of treatment in airway clearance techniques. However, doing inverted airway clearance and or inverted autogenic drainage has been shown in studies to accelerate Bronchiectasis progression due to gastric refluxing seen in people with mucociliary clearance disorders like PCD and CF. Back in the seventies and eighties inverted chest physiotherapy was a mainstay airway clearance technique that is now heavily discouraged due to the risk of reflux speeding up the progression of Bronchiectasis.
Burning incense and other herbs should be done in a well ventilated room to prevent smoke exposure to a person with PCD. The herbs and other incenses may be best burned out of th presence of a person with PCD, like before their arrival or at a time when they are not home for like say cleansing purposes. Also care should be exercised when ingesting herbs due to medication interactions. Ask your pharmacist about any concerns between whatever herbs you might be thinking of taking and your current list of medications. Your pharmacist will best be able to access the drug and herb interactions potential based on their knowledge of the pharmaceutical information over that of your doctor.
The living a holistic lifestyle alongside of primary ciliary dyskinesia is very doable and manageable just be sure to include your medical team in your lifestyle decision making. You will be surprised at how supportive and accommodating that your team can be in your lifestyle choices. Your team will best be able to help you sort out your individual needs based on your choices and their knowledge and experience with other people living the holistic life style.
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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.
In a few weeks time, everyone is going to role out all the positive life stories despite PCD. I’m kind of envious, because I want my rose colored life too. That’s just not the hand I was dealt unfortunately. It wasn’t some magical life where my parents loved me and supported me despite PCD. PCD made my life hard, harder than I wished it had and that is just the truth of the matter. I look around at all these rosy storylines of people with PCD with a bit of envy and a bit of skepticism. Are they really telling the whole truth or have they just not gotten to the harder aspects of doing life with PCD yet. I wonder about the embellishments of storylines of others in public all the while behind the curtain they are a whole different person with a whole different story. Why must we suffer our trials in private? Why is it such a taboo thing to share your PCD struggles? These are my thoughts as I read all these wonderful storylines of PCD life. PCD life is tough and I’m not sure why we are supposed to hide that fact.
PCD Awareness month is a necessary evil because we need awareness to help fund a cure. However doing life with PCD isn’t some grand adventure where they live happily ever after. I think maybe that fact has been glossed over too much…
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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.
This is the reason I always caution people to get their loved one’s permission before sharing their love one’s health related issues online and on social sites. Does your loved one want privacy? I did as a kid and was never given the opportunity to have any say what so ever. Nope, my parents just thrust my chronic illness out there for everyone to see. People even knew when my antibiotics gave me yeast infections. Seriously, as a teenager having my folks tell people my private stuff was embarrassing to say the least. However my parents’ game came first. It was always we have a sick child give us money. Or our daughter is on her death bed and we need final expenses for her, whether or not I was actually dying. I’m seriously not kidding. My folks scammed every local church for miles around for money because they had a sick child, me. My mom liked to exaggerate my issues, whatever got them the money. Money mind you that was never spent on us kids.
I’m truly not bitter at my folks, really I’m not they were who they were and I had to accept that long ago. And I’ve always said I wouldn’t say much till they were gone. I think now more people in the PCD community might understand my constant insistence to protect their loved one’s privacy, including the children who may not fully understand how sharing stuff now might come back to bite them as they get older. And some people are probably reading this thinking I’m paranoid in my thinking, I’m too over the top. But once things are out there on the socials, it’s out there forever. And speaking from experience, and even though it shouldn’t be legal, I have lost employment opportunities due to my parents divulging my health information. My Mister has lost job opportunities due to my public health information. It does still happen in this day and age. So I encourage you to think about your loved one’s future when deciding what to share on the socials. Ask your loved one how they feel.
Take it from someone who knows, being exploited because you are sick truly sucks!
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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.
Be sure to join us next week for another Topic Thursday.
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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; 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!
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- To shop for your “Official” turtle care ribbon gear today!
www.pcdstyle.com
or
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Thank you for your consideration!
#PCDsmiles #PCDstyle #PCDsmilesCookbook #PrimaryCiliaryDyskinesia #SmileEcove #TurtleTalk #TurtleTalkCafe #PCD#TopicThursday
#PCDawareness to help find a #cure4PCD!
