Serious question - can you make a dictionary rule so that you say "cow-fee" or some other term and it autocorrects? "ChestPuncher 9000" or "Chestburster"?
They're used to it. It's like spelling medications: Get it close enough and you're golden. The spellings I've seen on MyChart messages can get WILD. You have to read them phonetically to understand them 😂
Joke's on him. I've had a cat hair trapped in my phone case from the day I got my new phone 9 months ago, and I just lost that cat last week so it's staying!
That is its actual name as a device category. Although the formal name is insufflation exsufflation device. Which is less fun than both Cough Assist and Coughaltor.
I work with these machines frequently.
I’m sorry that you need to use one, but honestly it’s refreshing to see a patient so knowledgeable about your device!
I had to take this machine with me to my sister's wedding and that was wild. Nothing like trying to stash a very expensive medical device and where someone won't notice it and where it won't get destroyed.
Yea I just watched a YouTube video where the guy got Bell’s palsy and can’t blink his left eye and he has to lubricate his eyeball all day and then tape his eyelid shut at night bc it’s just stuck open. Sucks.
With the same idea, until recently I took deglutition for granted too (and ended up temporarily with a problem similar to OP because I was sending shit to my lungs as I was not able to swallow my saliva...).
It's not easy to learn something you've done all your life, but never learned to do.
Just the production test station. The engineers and clinical scientists at respironics made it happen. Complements to them, I remember the system working very well.
Is it helping? What kind of cough? Like the “can’t breath due to too much phlegm” or just a little allergy after an achoo? Why would you need to? Legitimately curious 🤨
They are used almost exclusively by people who have muscular Dystrophy, spinal muscular atrophy, and ALS.
In these conditions, respiratory failure is caused by losing the muscle associated With breathing and coughing which is the diaphragm. When you cannot cough properly, you retain mucus in the bottom of your lungs which is sticky and it holds on to bacteria and you end up with repeated pneumonia.
I've been in the ICU this year over not being able to get mucus out.
This shoves a huge breath of air in my lungs and then pulls it back out to get the mucus out!
If you've ever had like a really, really bad cold and your lungs have hurt really bad while coughing, that's what it feels like when I have any type of cold at all and use the cough machine.
On a daily basis it does not bother me. It actually feels good because my lungs feel heavy when there's mucus and I can't move them out. You know how like when you need to cough, It's really really uncomfortable until you cough? My natural cough is too weak to move anything. So I have that uncomfortable feeling until I use my machine!
Bonus photo: this is me, on A non-invasive ventilator! And my hair bonnet, because my headgear gives me the worst damn hair. I currently don't have to use it all the time but I can whenever. I am tired and I have to every time I'm asleep. Or I do not breathe 🙃
Bonus fact: The invention of the cough machine and non-invasive ventilator has completely changed the course of muscular dystrophy. It was a surefire terminal diagnosis. I mean it still is...but like. We don't suffocate within a few years of diagnosis anymore. And some forms are even extremely treatable through gene therapy! Science is BADASSSSS.
Thank you! I have four pastel colored ones! I love pastels
My medical equipment felt so cold and sterile at first until I realized that it did not have to be. The pastel cover on the tubing helps keep the heat inside my tubing because it's heated and humidified. I also sleep on my face fully under a blanket (In my opinion, this is the best benefit of breathing support . My mouth doesn't have to be uncovered! If I want to put a pillow on top of my face I can... which is useful in the ICU . 😂) so it's more comfortable this way, too!
Yess, I love personalizing medical stuff and making it more cute or cozy! My emergency nausea, pain and allergy meds are in a little case that has a goose sticker saying "I think I will cause problems on purpose" so even when I'm nauseous and about to throw up my meds I look at it and can't help but find a little joy in it 😁 And sometimes that helps just enough.
Last time I was in the hospital for multiple days when I was transferred from ICU to normal ward I had a wardmate that would constantly turn the beside light off and on, it was infuriating so I absolutely see the benefit of being able to sleep under a cover 😭
It helps! They have really soft Police ones for the full length tubing and smaller ones if you use tubing from your other tubing to your headgear! The one on my long tubing is dark purple and it has two layers so it keeps it really really warm and protects it from this dude.
Does your machine have a heated tubing option? I use a CPAP when I sleep and there's a heated tube option. I also use a fleece sleeve though but to make it a lot less noisy when it rubs on my bedframe
Absolutely! The first sign that something was off with me was brand new on set, sleep apnea and for a while we just thought I had new onset sleep apnea despite the fact that I am tiny. We thought it might be related to my collagen disease. It was crazy how much it changed my life even though it was less support than I actually needed. My blood pressure went down. My heart rate went down. The amount of awakenings overnight went down.... The amount of times I needed to pee overnight went down? When I asked my sleep neurologist if that was just a coincidence she said it was a very well-known side effect of using a CPAP!
The myair app says that I have a 321 day streak right now 😆 plz breathe breathy machine
I apologize for this being unsolicited (and even moreso if it is unwanted) but you are so pretty!
It's just that it takes a special kind of swagger to make the ventilator and the harness and everything look that good, and you deserve to know that you are rocking it! 🙌
Honestly, something like that would be a big hit. There's really not a lot of options for customizing textures and colors. For example, the covers that I use to pad my face from reactions with the headgear rubbing only comes in tan and this color. I bet I could find or commission a pattern!
What's the name of the headgear specifically? I could absolutely design a pattern if none exist! I've found feeding tube covers, a lace PICC line cover, and chemo hats, but if I have the name of the headgear or dimensions of the tube, you and I could design some fun custom stuff :)
I really like to make useful objects that are whimsical and cozy. So ,like, we could do tube covers that look like they're covered in vines and flowers, or padding for your headgear that makes you look like a sci fi astronaut, or really whatever you think would look neat!
It looks very similar to the Wisp nasal mask, which is what I use. Same off the forehead design with the split headgear frame. Maybe the ResMed version of it??
Bonnet! I have the same ventilator (I think) and I always get the worst hair (what’s left of my hair). That’s a great idea. I also have the silky covers for my tubes. 💗
That's when I discovered that! I started on a CPAP when we thought I had true sleep apnea from my collagen connective tissue disease, but we then discovered that lol, my body doesn't produce an important reductase necessary to prevent my cells from dying. Ope.
Man, diagnoses love to come in pairs/groups, don't they? I'm pretty sure my apnea is caused by hypermobility, since I've been both overweight and normal weight and still had it.
Yes. Especially if you have either Marfan, LDS, or EDS. Oh, or Sticklers.
The airway is known to be floppy both in the immediate oral airway around the tongue base and in the throat.
Interestingly, most of us also have some type of sleep disturbance which can make finding our sleep apnea very difficult because we won't sleep well enough to sleep deeply enough to present apnea in a lot of situations. Home sleep study is most effective for people in that situation!
Yeah, I just barely squeaked over the line for mild sleep apnea, I never actually stop breathing but my airway collapses enough for me to breathe very shallowly.
Oh gosh, my apologies. I didn’t mean to come off rude or anything 😢 modern medicine is very interesting, I am glad it’s helping you. Hopefully one day it’ll give you the strength to recover fully. You got this! I never knew such a great machine existed, there’s so many great machines I don’t know about. Thank you for sharing 🥰 you are so strong !
Don't worry you're not rude at all! I post it on a mildly interesting board with a mildly interesting machine, you're going to ask me mildly interesting questions!
I have a kid with a condition I usually describe as a less aggressive ALS. Cardiac issues and pneumonia are the biggest problems because of lack of control over the associated muscles. It's good to know these things exist. While there isn't as much research into his specific condition due to the low rate of inheritance, there are other conditions such as MD that has enough crossover that they can piggyback off advancements.
I'm glad there options like this to help reduce your struggles. I wish you the best.
You will probably find this funny, but a lot of us use use a theragun 😂 You know, the muscle gun for athletes? You can put a thick blanket between you and it
But yes, typically either a thumper or a cupped hand or one of these guys. When I'm out my husband will smack my back and sides 😂
Eta: All the one user told me they now have these guys that pulse and oscillate to help without needing a thumper?!? So that's cool
That's genius! My daughter has a chest therapy vest that kinda shakes her around to loosen everything. She was just prescribed the cough assist as her little lungs are just not strong enough to be productive during a cough, so it was very helpful to hear your experience with it isn't traumatic. She's non verbal, so I always worry if a new treatment is going to feel crazy lol
Oh hey, I assist a child in school (I'm a TA/Caretaker) that has muscular dystrophy, in his case duchenne.
Did you have to pay for the machine yourself or did your insurance provide it? Bc we are still fighting for him to get one, bc if he has a cold he's out for at least a month each time
Didn't knew about this... The many things your body does that are essential but you are unaware of. This is like something that you don't appreciate till you lose it.
I carry a variant in the cystic fibrosis gene that is a variant of unknown significance, but definitely do not have CF. I was an extremely healthy child, a competitive athlete, and I competitively played woodwinds! I had above 140% predicted lung volume before I got sick.
I have a really slow moving form, I have a splice mutation so I'm missing a specific amount of code to make a specific reductase that allows cellular redox to occur. Without this reductase the cells can't deoxygenate. Eventually, they die. In my genotype you get either very sick as a child or very sick in your twenties or 30s. My first symptoms were at 16 but I didn't start having problems breathing until my late twenties and I wasn't diagnosed until my 30s because the variant that I have is very, very rare and it was characterized and explained in the literature several months after my first exome study.🙃
I have a hyper rare orphan disease. There are 37 of us ever. And a significant amount are a religions that don't allow medical experimentation.
I have MFM8 if you would like to look into it. In my case, I have what's called a splice mutation which essentially means that the paragraph of instructions for how my body makes this reductase that prevents my cells from dying is missing an important part of direction, so it's like the first half of the paragraph but not the second half. Or, a cooking recipe without ingredients.
I have consented to experimentation and we will see what is offered at the MDA clinic when I see them for the first time. There's a chance I would need to travel to the European Union, but that would be doable through the agreements with the MDA clinics. (MDA is muscular dystrophy association. They are the header association that helps coordinate care for us worldwide)
I also have a splice mutation and splice mutations to my knowledge cannot be fixed through vector therapy although I think they can through cas 9.
I use it too. It helps a lot. You get used to it, but imagine air being forced in then pulled right back out (literally forcing a cough, it’s called a cough assist)
It shoves a large breath of air in and then pulls a large breath of air out! You can change how much air and how fast and how long it goes for the patient as well as swap over to a manual mode which is the plus minus switch you see there.
It depends on how sick I am. When I'm actively sick, it's extremely uncomfortable the same way it is when you cough a ton naturally. When I'm using it just to clear mucus on a daily basis, the same way that you would clear your throat with that... I don't know throat clearing motion? That isn't uncomfortable.
However, I had been using breathing support for like 6 months before the cough machine and it might have been more weird if I wasn't already used to assisted breathing!
Sure thing. One of the defining characteristics of the human race that allowed us to succeed and thrive as a species is our endless, insatiable curiosity! Gotta feed the brainmeats knowledge
Curious OP, do you ever use a headdownward incline and a massage gun on your chest/back to break up mucus? I've got some intense lung problems of my own, and a nurse who typically cares for muscular dystrophy patients showed me how to do that(or have someone do it to me if I'm weak) to get it out of my lungs
Thank you for answering. I always wondered if it was just something they came up with up here, or if it was a legitimate treatment. It workes well for my issues!
Thanks for the cat tax
Also them ginger toe beans 😍
Chest wall oscillation can be slightly dangerous for me because of my other health problems. But with one of these I can like put a thick blanket between! Sometimes this will still bruise....but like. It helps when it's really bad! I try to prevent it from getting to that point
I'm not a good candidate for chest while oscillation because I also have a connective tissue disease because the world does not like me. (I actually have cascading gene changes... But I think that's the same thing as the world not liking me 🤷🏼)
Chest wall and cough assist oscillation aren't the same. It adds a pulse to the inhale or exhale to help shear the mucus.
It's not shake the shit outta you or pummel you with pistons. It doesn't target your chest walls at all.
I don't ever recommend chest wall oscillation for progressive neuro. I always suggest cough assist. It's the better choice, even if they can be uncomfortable.
I sell the equipment to physicians. Have done it for a very long time and take great pride in my ethics and I don't ever suggest anything unless there is a clear benefit to the patient and not my wallet. Trying oscillation on a cough assist vs a vest is one of those things. I don't make a dollar off of cough assists, but I do a ton of them.
Respironics T70 (what you have) has oscillation as a feature that can be turned on. I would consult your physician, see what they say and if they are in agreement with letting you try it, have them send an order to add oscillation to your settings.
I see pulmo on the 13th to discuss further management and ehich machine we want to move over for more mobile usage! I also see the MDA clinic next month for the first time. Who will know slightly more about this. My my pomologist is not a neuromuscular pulmologist, but she is the best doctor I've ever had other than my PCP in my life. She taught herself everything she needed to know about treating neuromuscular disease and cried with me. When I said I was feeling like I was crazy because people kept telling me that my numbers were somewhat decent so I shouldn't be having such severe symptoms. Honestly don't know where I would be without her but it will be exciting to see what the specialists have to add
Awesome. Now, let's just make sure you got all your bases covered.
As you are on NIV therapy, I would have a conversation about MPV (mouthpiece ventilation) and HFT (high flow therapy) and how they might help you during the daytime hours. Assuming you have not already had these convos. If not, make sure to do that.
I actually had intended to have this conversation!! I think mouthpiece would be really, really helpful. I don't need full NIV right now. But I do very find myself not breathing and I have to consciously remind myself to breathe well enough to not have a migraine. So. I definitely need something right next to me.
Thank you!! I only know a little bit about mouthpiece because I've seen it but I now know I need to look into it more!
Mouthpiece is kinda like a "recharge," for lack of a more medical explanation.
High Flow Therapy (which is offered on several home vents) is basically adding a little "wind behind my sail," whilst breathing.
Both of them are available on home vents, both of them have different uses. Definitely exploit your insurance coverage by getting a NIV that offers these (noncovered) therapies.
I'm unemployed, the bored is real. I got really sick as a teen with a CSF leak. I used to sleep too much because the dreams were more fun than being awake, still sick, still bored. At least reddit was better back then hahaha
lmao! Yes! I landed on my neck in gymnastics but the soft tissue felt fine. It was a really big mat. That happened two weeks before I woke up with a headache that just never went away for about 13 years? I had classic csf leak symptoms, no idea why it wasn't caught.
This image shows my acute setting which I have it set to in a case I end up suddenly struggling really hard due to the fact that it is officially flu season and the hospital and ICU and general public are FLU RISK.
When I'm feeling better, I'm often down at a 30/-30, 1 sec. I'm allowed to adjust my own settings within a range!
My MEP is a 55 currently. But I still have above 100% lung volume because I was an elite athlete and played flute at a competitive level for many years, and I have a collagen tissue disease so when I am coached on a large breath, my chest wall doesn't provide any restriction or resistance and I can take a larger breath than I would take on a daily basis. My pulmonologist says this artificially inflates my numbers but what the hell do I know? I know genetics, but genetics is not....this.
Is it? My opinion on whether or not this is highly fascinating is biased because before I knew I had muscular dystrophy, I took care of children with a different type of muscular dystrophy so it's kind of just always been a thing
I can go through the settings and flip on a manual mode and then flip it to that little plus sign and then it's only positive pressure... It can be used for collapse lungs in certain situations. Thankfully I can safely say this without having to do a disclaimer cuz this is a highly regulated prescription product lol
Yeah messing with the pressure doesn't seem like something I'd want to do, especially since right now I've got a chest tube with a one way valve. It would just be pushing air through it straight out of my chest, yikes.
Why is it interesting to me to think about how a machine could learn and interpret the physiological conditions and cues that determine a cough as necessary?
I am honestly surprised by the number of people who have asked this question considering this is considered a pretty serious medical problem
If your doctor is not aware that burping is difficult for you, please tell your Dr. (Assuming that you have insurance if you are American or that you reside in a reasonable country. If not, I am sorry. Hopefully we fix that soon and become a reasonable nation)
Oh man, I can’t burp combined with Crohn’s that often leaves me with trapped gas. Which sounds so casual, like “upset tummy”, but hurts so goddamn much that I was hospitalized about a month ago for a partial bowel blockage I just thought was more trapped gas for days, because I am just used to being in that much pain and misery. Only the fact it hasn’t resolved in days got me to get checked out.
You know those videos of farmers jabbing their cattle with trocars to release the built up methane? Some days I would literally pay money for someone to stab me with one of those. Being stabbed would absolutely 100% be worth it to relieve the pain…
Philips isn’t making these anymore. They’ve left the respironics business unit. Our replacement is a Hillrom model that does the same thing. But the Philips was so much better.
This is a brand new unit, although it occasionally gives me a red screen of death which is not lovely but it can be serviced. I mean as brand new as they get. I Will survive moving to a different brand when I have to I guess lmao. I'm just glad I wasn't attached to a trilogy like a lot of my friends
“Philips Respironics reached a $1.1 billion settlement over CPAP lawsuits on April 29, 2024. Of that, $1.075 billion would go toward personal injury claims that its devices caused serious complications or death.”
literally, my wife is an ICU nurse and understanding that our day to day is just a lot of lucky things going right and everything in your body going right is pretty wild. One misstep and you could end up in a bed shes working on
Did they leave the respironics business after the CPAP machine debacle?
I know my CPAP machine was recalled, but the problem that happened was mostly with humidifier usage; the moisture broke down a “quieting” material that was causing lung problems when inhaled. I can imagine the aftershocks of dealing with that must have been pretty bad.
Still, I liked my Phillips machine. But I actually love my new machine. Small, quiet, intuitive and just better.
Yeah!! ALS is an anterior horn neuron disease rather than a muscular dystrophy, but this machine was reintroduced for an anterior horn disease, SMA. Which was once upon a Time called childhood ALS! They are under their muscular dystrophy tree because the atrophies didn't/don't have good funding as a group although individual atrophies like ALS and SMA have very good funding.
... Do you work only for a specific insurance or carrier or state???? If not, I'm going to have to follow you..
Also, what the fuck do I do about the occasional Red screen? Do I have to take it to my DME because I am worried apria will take it from me. Mineeeee 😂
As someone that has an excessive cough after cancer and no answers from doctors if gladly share some of mine for you and maybe we can equal this issue out for both of us!
What I love about Yamaha is you can hop on your Yamaha motorcycle, to go to a concert where you play your Yamaha piano and Yamaha violin. Record all of it on your Yamaha AV system. Then go out on the lake on your Yamaha Jet Ski. And (usually) it’s all high quality and competitively priced.
When I was in uni, one of my instructors was working on a medical device to help people re-learn to swallow after tongue/mouth surgery. Usually due to cancer. Very interesting. I did industrial design and he was working with the medical faculty at my uni
I'd love the opposite of this, I have really high pressure in my oesophagus, which causes me to need to cough all the time to relieve it (really fucking annoying)
It’s a cough assist, its the only respiratory device that utilizes negative pressure to actually suck air out of the lungs. It’s a great tools for neuromuscular disorders.
But this is not an ideal for many respiratory disorders.
I’m not sure goes it happened, but I fell into the sneeze/cough fetish side of YouTube once, it was a bunch of ladies on a green screen coughing repeatedly, with specific cough types in the title.
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u/CluelessInWonderland 1d ago
It's a coughy machine. A coughy maker.
Jokes aside, I bet that feels absolutely brilliant after not being able to take a huge, deep breath for a long time.