just say NO, Buffets & Food Boards; a patient’s perspective
A patient’s perspective from our Founder:
Well you all know me and know I like to talk about the little know areas of PCD life, like this new spin on buffet type meals; food boards. For most people food boards are awesome, for me it’s a nightmare… Let me explain.
Read more: just say NO, Buffets & Food Boards; a patient’s perspective
- Hits: 758
Flying with PCD
A few years during a family medical crisis involving my father I went a jumped on the first plane out of Minniapolis bound for my home state of Ohio. I wasn’t actively sick with and infection, but still in declining pulmonary status myself. I didn’t ask anyone, I just jumped on a plane bound for home as my father wasn’t expected to pull through. I did notice it took me extra time to get through the security and to the gate for my plane. But I did have two medical bags with me, on top of my carry on and personal item. My checked luggage was already taken care of. Due to my hearing I did request early boarding so I could get on the plane and not miss my announced times over the intercom. Those announcements I’m usually oblivious to, so the early boarding makes sure I’m not left behind.
My only thoughts as we taxied onto the runway was how weird it was to think that on my return flight I would no longer have a father. I was so distracted by what await me in a Ohio that much of the flight passed quickly and without thought. That is to say that I didn’t notice I was in trouble until I was. As we descended into the Cincinnati airport I noticed the air got thick. My head spun a bit. When we taxied to the gate and started to deplane I grabbed my stuff as usual. But the time I stepped onto the jetway my role went out from under me. I couldn’t find the walls to lean against and the jetway seemed to continuously grow and get longer, I couldn’t breathe, I couldn’t think straight let alone see straight. It took forever to make it up to the gate in the terminal from the jetway. By then my phone was ringing and it was my sister saying they were a few minutes out from the airport yet, I could barely speak. I still had to make the baggage claim to get my checked luggage.
Getting through the concourse to baggage claim I found I was walking at a turtle’s pace, thank goodness for the moving walkways or I would have never made the mile trek. I routinely was setting down my carry on bags on to the moving walkway and if I could have slumped over the rail I would have. I barely made it to the baggage claim as the baggage handlers were loading it onto a cart as unclaimed luggage. Everyone one else on my flight had come and gone fifteen minutes ago. The security lady say how ragged I was and offered to let me out the security door into the passenger pick up zone, so that I didn’t have to complete the trek around the construction area to get to passengers pickup the regular way. I was ever so grateful. She asked if I needed medical attention. To which I could barely answer her that my family was just outside and I just needed to get there. That’s when she offered the shortcut. I made it to my sister’s car and was met by my brother-in-law who took my bags. I collapsed into their backseat. The airport was an hour and a half from their house back into Ohio. I needed every bit of that time to regain my composure. I didn’t let on to them that I thought I was in trouble and I just let them talk while I recovered. About a half hour into the ride back to their house I remembered I had my pulse oximeter in my purse. The reading on my meter stated 78%. I left it on my finger and watched it slowly rise into the 80s and then hit 91% were it stayed. It never dawned on me to put it on when I was struggling at the airport. Hypoxia is such a weird thing. And I began to worry about how I was going to make the return flight. I knew I’d wear the monitor constantly during that trip to monitor myself. I also began to realize I should have called my team to get the okay to fly. Aging, and progression with PCD is and will continue to be a weird thing. My spouse and I talked later that week, and we decided that if I felt to bad over my trip then my spouse would drive into Ohio, pick me up, and I’d ride back with him to Minnesota. We did some research while I was in Ohio about how respiratory patients can fly by maintaining their energy and conserving their oxygen while in flight.
My father thankfully pulled through that summer. I decided to try to deploy the tactics I read about flying with respiratory disease and hopped the plane home. I wore my pulse ox the whole trip. My lowest number was 69% and my highest in the air was 79%. I’m lucky that my meter has a built in save and storage feature that allows me to keep logs for my team. My next pulmonary appointment I showed my team my pulse ox logs, and it was decided that I would have to fly on oxygen from now on. I was also told that there is a flight challenge test that they can give pulmonary patients to see if oxygen would be needed to fly. So we will take that test periodically to monitor my flight needs. I never knew there was such a thing. I vow to be much safer in the future. I just never knew I should have asked my team about flying with advanced PCD progression. I’ve flown many times in my life, and this is the first I’ve ever experienced a near emergency. Be safe, my flying PCD friends!
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!
- Hits: 922
Caregiving
There are many layers to caregiving when it involves a person who has primary ciliary dyskinesia. These layers peel back and change on the daily sometimes. It is definitely a strange onion to peel if I may make that analogy.
It starts when your PCDer is born and your responsible for everything, and I mean absolutely everything. Even things no one told you about like advocating for care from providers on behalf of your little with PCD. To being the mean parent and making your little suffer through treatments that they don’t want any part of, but you know without them your little will end up really sick. Then there is the daily medications to contend with. And once they hit school age you then have to fight with teachers and schools for your little and advocate for their needs to keep them safe at school. Not to mention battling the school district over missed days due to doctors, illnesses, and hospitalizations. Not to mention all the normal everyday stuff you deal with with kids in general. Plus do not forget to take care of yourselves because if you are not on top of your game how can you be all these things to your PCDer?
Then you enter into the wonderful teenage years where your PCDer wants some control over their care. They aren’t quite up to the task, but they sure do try. You also get into their stubbornness to actually do the things that they need to keep them healthy. This is a very difficult stage for a caregiver. The daily negotiations weigh thin on you as they approach adulthood. You start to get push back from a medical records access point depending on your state of residence. Patients are afforded some privacy so parents and caregivers are looked our of the PCDers patient portal around the age of thirteen. These make for stressful times. And so does the day your PCDer turns eighteen and or moves out of your house. Your still worry about them, but they are on their own now. How do you let go when you’ve been their safety net all theses years. It is definitely a hard time. And don’t forget while all this is going on to take care of yourselves as well. After all if you aren’t at the top of your game how can you caregive for someone else.
Then we enter the college years and beyond where your PCDer had grown and are on their own. But that doesn’t mean you aren’t needed. It just my be in an advisory role or a historical records type role. Your knowledge of your PCDers trends and tendencies when getting I’ll will be invaluable to them. Buy it is also a strange time, because if your PCDer says to let them handle it. It is definitely hard to let go, especially when your PCDer meets their spouse. Handing over the reigns of caregiving to your PCDer and their spouse is the most difficult thing a parental caregiver has to face. And it’s subsequently the hardest thing that you will ever do on this earth. Be sure that you are taking care of yourself and your needs to get through this time.
Spousal caregiving is sometimes even harder than parental caregiving. It becomes another layer to your marriage. You also have to be prepared to ask you a PCDer their wishes and then honor those wishes. Remember you are their spouse not their parent. That’s the easiest line to cross when caring for a spouse, assuming the role of their parent and not remaining their spouse. You need lots for open and honest communication at this stage of your relationship. And like parent caregivers, spousal caregivers must take time out to tend to their needs or face the end of the relationship in some form. Marriages are hard enough without adding caregiving into it. Do yourself and your PCD loved ones a favor, be sure that you are taking care of yourself, your mental health and well being. Your PCDer will thank you for it.
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!
- Hits: 899
Nothing is Sacred when you have PCD
There are a lots of things that I’ve had to get used to as I grew up doing life with PCD. One of those things was learning that unlike most others I had no privacy. I mean absolutely none whatsoever. Nothing is sacred when you have primary ciliary dyskinesia. My life and my body was an open book to everyone. I guess it didn’t help that I had family that liked to share everything, and I mean everything. Imagine being in first grade and your teacher and classmates parents heard all about your antibiotic induced yeast infection. Or that your bowls were runny and you still wet your bed because the medicine you took wiped you out. Wiped you out so much that you often didn’t wake to go to the bathroom when your body said it needed to go.
Then there is the flip side, in order for your medical team to treat your medical needs they need to know everything. And I mean everything. Nothing is private. I often wonder how many people on the planet are actually afforded privacy that they want. Is their life and open book to others? Do they have to report their bodily functions on a regular basis to a medical team? I wonder what it would like to be normal. Have body autonomy and do all the things normal people do. This probably sounds pretty crazy coming from someone who is so open with their PCD journey to be saying nothing is sacred when it comes to PCD. In fact I just had a discussion on this very thing a few weeks ago. The person I was talking to is very private when it comes to their life, including on social med. I on the other hand discuss my journey, and sometimes a lot. We talked about how I liked privacy too, but have learned over the years that I need to be somewhat open to help control the message. I went so long under the mercy of others as to what was shared and what was not shared. I guess in a small way sharing on my own became a way to take back the privacy control that I was denied as a child. If nothing is going to be sacred, at least I can control the flow of information and decide what is out there for the public and what isn’t out their. You lose a lot when you journey with PCD, so take back your power and control your message, and don’t let anyone tell you different. Remember on our journey with PCD it isn’t the destination that matter, but the journey to get there.
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!
- Hits: 1090
Nasal Washes, Yay or Nay?
Are you Team Yay or Team Nay when it comes to nasal washes for you or your loved one with primary ciliary dyskinesia (PCD)? Nasal washes are an integral component to PCD care, or rather they could be. The thing is, is deciding just when in life they should be introduced to a person with PCD. But don’t get me wrong nasal washes may just not be your thing for more than personal comfort, there may be a medical reason keeping them from helping someone who has PCD. So how do we know which team to pick, which side is really right for your exact overall needs?
The earliest nasal washes can be found dating way back thousands of years ago, beginning by sniffing ocean water cupped by hands. It wasn’t until five hundred years ago that nasal appliance delivery systems started showing up. Nasal washes or rather nasal irrigations likely originated in the Ayurvedic medical tradition in which it is known as “jala neti”, the practice of nasal irrigation. Over the many years nasal irrigation technologies have come and gone, some better than others. Which might surprise the average user of these more modern nasal irrigation systems, that sometimes more technologically advanced doesn’t mean safer and cleaner. Unless your idea of cleaner might be less mess, more contained, and more convenient. Though when you are dealing with compromised airways, as seen in PCD, choosing the less technically advanced delivery system may be paramount. That good old squeeze bottle will quickly become your friend, versus the more fancy technological superior delivery systems. So why is that?
To understand that we must understand PCD. Primary ciliary dyskinesia is a genetic level defect that affects the body’s motile cilia. People with PCD are missing a working copy of one of the genes responsible for the proteins that build properly working cilia. There are several hundred proteins thought to be responsible for the function of ciliary structures. To date, fifty four of those genes responsible for those proteins are known to be pathogenic, or disease causing, for PCD.
Motile cilia are responsible for a wide variety of bodily functions and PCD can be thought to primary be a fluid transport problem for the body. Motile cilia help keep fluid moving, the mucus in mucociliary escalator in the lungs throat and sinuses, ear fluid in the middle ear and eustachian tubes, cerebral spinal fluid in the ventricles of the brain, reproductive processes, and many other areas that have yet to be identified. Motile cilia are also thought to be important in proper development and positioning of organs as well. For today’s topic we will discuss the sinuses.
According to the National Institute of Health’s National Library of Medicine, “Patients with primary ciliary dyskinesia (PCD) exhibit significantly decreased pneumatization of their maxillary, sphenoid, and frontal sinuses, a difference that was observed across age and gender. Chronic rhinosinusitis is difficult to treat and our observations indicate that hypoplastic sinuses in PCD patients can complicate surgical management of the disease.”Underdeveloped sinuses also called hypoplasia or aplasia as seen in PCD can cause symptoms such as headaches, facial pain, nasal discharge, and speaking or voice problems. It’s also thought to be why PCD patients produce such low levels of nasal nitric oxide. Underdeveloped sinuses can be a huge factor in determining if nasal washes are safe for you or your PCD loved one. It’s for this reason that each PCD patient should be thoroughly evaluated by an ENT specialist and specifically one that is well versed in the care and management of PCD patients. Nasal washes may be contraindicated, or not recommended, for a person with PCD who's sinuses are underdeveloped and not structurally sound to allow for free flow of the nasal washes back out of the sinuses. The risk of nasal washes getting stuck in the underdeveloped or misshapen sinus cavities can out weigh the risk of not doing nasal washes at all for a person with PCD. It’s for this reason that no one with PCD should ever start nasal washing without a thorough sinus evaluation by a sinus specialist versed in the care and management of PCD.
Beyond the structural issues we need to look at the risk of cross contamination of and mutation of bacteria found in one’s sinuses. The risk of cross contamination in PCD isn’t well understood, but given what is seen in cystic fibrosis reasonable precautions should be taken by those with PCD. Now what’s this have to do with nasal washing? Surly people do not share their sinus irrigation appliances. It’s not the sharing in this instance that we need to be concerned with. It’s the mutation of bacteria that is in that person’s sinuses that we must be concerned with. Let me explain. When we wash or rather irrigate our sinuses the bacteria that is in the sinuses is also washed or irrigated into the nasal appliance as well. This bacteria can attach to the appliance where without proper cleaning and sterilization it can thrive, grow, mutate, and then be flushed back into the sinuses at a future nasal wash session. Most people are like, “Yeah, sure, but I clean my nasal application.” My question is, “Are you sure you are cleaning it properly and killing off all bacteria?” This matters, in PCD it matters a lot because of the rare and uncommon bacteria found in PCD mucus. Not to mention that it’s thought that bacteria like pseudomonas aeruginosa or nontuberculosis mycobacteria first enters a PCD patients respiratory system through the sinuses. So are you properly cleaning your sinus irritation appliance?
This knowledge of the importance of properly cleaning nasal irrigation appliances of a person with PCD needs to be applied to your choice of nasal irrigation appliance. The more advanced technologies available may not be best for those who have PCD due to their inability to be properly cleaned and sterilized after each and every use. Advance nasal irrigation systems that work by the push of a button and have machine parts are typically not able to be disassembled and throughly cleaned and sterilized. This increases the risk of the PCD patient reintroducing bacteria over and over again into their sinuses at each subsequent use. Overtime this bacteria can mutate into even harder to treat strains of the bacteria, thereby causing even more unnecessary complications for the person with PCD. While these advanced appliances offer less mess, less clean up, and appear more sanitary they may not be the best appliance for a PCD patient. Less mess doesn’t necessarily mean less risk.
So what is the best appliance for someone who has PCD? It turns out that the simple squeeze bottle may be best. Squeeze bottle not a neti pot or slow drainage pot. Due to the nature of thick sticky mucus seen in PCD you will want the higher volume and force that a squeeze bottle offers over a slower appliance like a traditional neti pot or a gravity draining appliance. The force of the squeeze bottle helps to shear the mucus from the nasal passage walls allowing easier removal of mucus found in a PCD patient’s nasal passages. Then you have to contend with the bacteria being removed, squeeze bottles can be throughly disassembled, clean, sterilized, and dried versus their mechanical counterparts that the machine pieces can’t be completely accessed, sterilized, and dried completely. So even though a squeeze bottle may seem messy, it can actually be much safer and less messy for a person who has PCD.
In any case the choice of which appliance and if nasal washes are for you is up to you and your ENT specialist on whether or not you are Team Yay or Team Nay when it comes to nasal washing for you or your PCD loved one. The first step is determining if your nasal passages can withstand nasal washes, and if there are any places that the nasal irrigation materials can become trapped and then become a breeding ground for infections. This is why it’s imperative that a person with PCD never start nasal washes without approval from an ENT specialist well versed in PCD care and underdeveloped sinuses.
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!
- Hits: 1366
More Articles …
Page 4 of 13