CPAP for Tracheobronchomalacia

[Slinky]

If the mask isn't working well for you, quite likely you are using so much water from that humidifier thru mask and/or mouth leaks.

I'm very surprised that the hospital loaner's humidifier leaks like that. It should have been checked out by their BioMed before being released for use! Have you made the hospital aware of the leak? That's not being ungrateful, its alerting them to a potential liability and protecting the next patient.

[DreamDiver]

...I did a search to see if any topics had already been posted on this subject but didn't turn up any hits. So I'm afraid I might be alone here on this.
...

Well... maybe your'e not so alone, seeing all these responses. Welcome. I hope you see resolution of your worst symptoms promptly.

[Muse-Inc]

Just some thoughts: magnesium and omega 3 fatty acids are used to reduce inflammation and you've got the giant bogeyman of inflammation it sounds like -- ask your docs about an IV infusion of nutients including a slow drip of vitamin C, magnesium (I think they use magnesium sulfate in IVs), etc. Supplements like Coromega fish oil, it's emulsified and comes in several flavors, I like the orange, tastes a lot like an orange creamsicle. High level of DHA (another omega 3) comes in a pill. I'm guessing you're taking a mucus thinner with lots of water to thin the crud produced by inflammation...maybe not, just seems likely...I could not cough the crud & bugs up fast enough when I had bronchitus & ended up with pneumonia. Oh, in some kids & adults, getting vitamin D levels up to 100 sees asthma eliminated...asthma is often called a condition of massive inflammation so gettin gypur votamin D level checked is a great idea (took me 18 months to get mine from 15 to 100, I take 5000-8000 IU each day to keep it there). Check with your docs abouth trying these, what you eat often affects how the body functions but ypur doc's got the last word...hopefully he's open to boosting nutrition as well as using the best of current medical practices.

Welcome! Hope you find some suggestions & support that makes dealing with the condition less stressful and more successful!

You might be more comfortable in the mask I wear, the RespCare Hybrid Universal; it's a FFM with nasal pillows and an oral cushion. ResMed also makes a hybrid-style; the 2 masks fit quite differently & no one can predict which will fit you best tho mine comes with 3 sizes of oral cushion and 3 sizes of pillows that can be adjusted to 2 heights.

[varaonaid]

Just some thoughts: magnesium and omega 3 fatty acids are used to reduce inflammation and you've got the giant bogeyman of inflammation it sounds like -- ask your docs about an IV infusion of nutients including a slow drip of vitamin C, magnesium (I think they use magnesium sulfate in IVs), etc. Supplements like Coromega fish oil, it's emulsified and comes in several flavors, I like the orange, tastes a lot like an orange creamsicle. High level of DHA (another omega 3) comes in a pill. I'm guessing you're taking a mucus thinner with lots of water to thin the crud produced by inflammation...maybe not, just seems likely...I could not cough the crud & bugs up fast enough when I had bronchitus & ended up with pneumonia. Oh, in some kids & adults, getting vitamin D levels up to 100 sees asthma eliminated...asthma is often called a condition of massive inflammation so gettin gypur votamin D level checked is a great idea (took me 18 months to get mine from 15 to 100, I take 5000-8000 IU each day to keep it there). Check with your docs abouth trying these, what you eat often affects how the body functions but ypur doc's got the last word...hopefully he's open to boosting nutrition as well as using the best of current medical practices.

Welcome! Hope you find some suggestions & support that makes dealing with the condition less stressful and more successful!

You might be more comfortable in the mask I wear, the RespCare Hybrid Universal; it's a FFM with nasal pillows and an oral cushion. ResMed also makes a hybrid-style; the 2 masks fit quite differently & no one can predict which will fit you best tho mine comes with 3 sizes of oral cushion and 3 sizes of pillows that can be adjusted to 2 heights.

Thanks for the info! Fortunately, my family doc is fantastic and in addition to being an MD, she's a holistic dr as well. So I get the best of both world, really. She's had me on magnesium for over a year now so I'm glad to hear that it helps with inflammation. Always good to get encouragement to swallow those horse pills every night! I'll check into the fish oil. Was taking it for awhile then took a break for a bit. Might be time to revisit it. I didn't realize the link between Vit D & asthma. That's very interesting. My dr checked my levels last year and it was only 20 so I've been on a variation of 4000-6000iu since then. Pretty much stayed steady at 4000iu for 6+months now. It hasn't been checked since about that time and it was in the mid 40's at that point. She mentioned MD's will say 30-50 is good but holistic docs would say 60-80 so she prefers the latter. She monitors me on it though because she had a patient go the "more is better" route with it and really messed up his calcium/mag levels and had a lot of problems from vit d overdose. It's all such a balance! I'll check in with her regarding your suggestions, though. Maybe one day we'll hit on something that will make a big difference!

My main problem with the mask isn't really leaks or maybe it is...I just have to tighten it so much to stop the leaks that I now have a literal blister on top of my nose. Not sure how I'm going to manage with it tonight! I tried a bandaid earlier today but it made it worse...leaked worse and rubbed more. So I think I'll try the tape tonight. My skin tends to be fragile from the Ehlers Danlos issues so I don't think tape will be a long term solution but maybe it'll get me through until I can get a better fitting mask.

[Madalot]

I wanted to pop in here quick and tell you what I did for the nose issue -- because mine was raw and bleeding from the mask.

I use a bandaid, but a PLASTIC one -- the regular ones made it so much worse. I ended up having to loosen the mask for a few nights to give the area a chance to heal. I just let it leak for 2-3 nights. My DME also recommended applying an acne astringent to the area (once it's started to heal) to help the healing process and it worked for me.

Now, I clean my face thoroughly at night and apply the PLASTIC bandaid over the bridge of my nose and I do pretty well most nights.

[Muse-Inc]

...been on a variation of 4000-6000iu since then. Pretty much stayed steady at 4000iu for 6+months now. It hasn't been checked since about that time and it was in the mid 40's at that point. She mentioned MD's will say 30-50 is good but holistic docs would say 60-80 so she prefers the latter.

Forgot to add, do not take D2--you can easily OD taking D2 which is a plant form and not natural to the body, the body uses D3 and it's pretty hard to OD on it...I use the Stoss protocol for viruses (120,000 IU for 3 days at my wt). Lots of cardio docs want to see levels at 100.

...have to tighten it so much to stop the leaks that I now have a literal blister on top of my nose...

The Hybrid doesn't cover the nose or touch the forehead...I have severe claustrophobia & a fear of suffocation...this FFM mask doesn't trigger my panic. Comfortable too.

[MidnightOwl]

My main problem with the mask isn't really leaks or maybe it is...I just have to tighten it so much to stop the leaks that I now have a literal blister on top of my nose. Not sure how I'm going to manage with it tonight! I tried a bandaid earlier today but it made it worse...leaked worse and rubbed more.

Welcome.

I'm sure this was already suggested but you might try loosening the mask instead. That may actually reduce the leaks. I've never used the mask that you use but my mask can be moved around on my face a tiny bit - perhaps you can manage to move it off the blister. Good luck with that. It sounds miserable.

I like the idea of your having a different mask for night and day. In addition to being able to select different characteristics in each mask I would think it might help with comfort since they wouldn't sit on your face in exactly the same place. Kind of like changing into a different pair of shoes during a long day.

As mentioned, the humidifier should not be leaking and this is something you should report if you can't fix. I have a Remstar Plus M (not sure if that is the same Plus model that you have). It's humidifier tank is made of 2 pieces of plastic with a rubber gasket between them. If that gasket gets twisted when the tank is put together it will leak over the course of the night as water vapor seeps out and then condenses outside the tank. You might like to take a look at your tank and see if you see anything that looks like a twisted gasket. You can usually see it if it's twisted. And, put the entire machine on something waterproof to protect your furniture.

midnightowl.

[echo]

Well scary situation for sure but not TMI. Means you need to watch out for aspiration while using the mask. I still don't understand the humidifer problem but maybe someone with your machine will chime in.

Now, as to this comment

My difficulty has been insurance. Because it isn't for OSA of some type, they're having trouble covering it even though it is one of the treatments for TBM and certainly the least invasive. I've had FIVE doctors prescribe it including 4 pulmonary specialists one of whom is also a sleep specialist. They're trying to let the CPAP reduce some of the inflammation that the coughing has caused so that they can also look at more permanent longer term solutions, though they say I'll be on CPAP at night regardless forever. So, even though I didn't need it, they insurance wanted me to have a sleep study which didn't show any apneas but did show that the CPAP helped my breathing. They're trying to get a pre-auth now from my insurance so I'm just praying it goes through.

and then

No, because of the condition, they didn't want me to be without CPAP so they did the entire night as a titration.

...The reason they didn't see any apnea's is because the CPAP was doing it's job! There's no way they would be able to diagnose you for a sleep breathing disorder because they never tested you without the CPAP (as far as I know). I hope your insurance approves the machine anyway, but I bet if they had done a split-night study they would have found some interesting results (again I'm not a doctor or in sleep medicine in any way!). Your condition sounds very serious so I'm not about to second-guess any of your doctors!

[varaonaid]

That's a really interesting point. I hadn't really thought of that. The results would have been quite different had they done a split study, or at least it seems like they would be since the airways collapse so much on exhale. I guess they were just worried that it wouldn't be good for me to go without it and figured that the fact that it was a "sleep study" was enough for the insurance. I sure hope so, at least. I really don't want to have to go through multiple appeals. You'd think five drs prescribing it would be enough!

[echo]

You'd think five drs prescribing it would be enough!

Let's hope so! Keep us posted!

[finchy]

Insurance will not pay for any equipment with out a diagnosis. To get a diagnoses you must have a baseline study on room air, then when you are diagnosed with OSA then they apply CPAP to titrate your pressures. If they did not first diagnose you before applying CPAP, this could very well be the complication.

[varaonaid]

Insurance will not pay for any equipment with out a diagnosis. To get a diagnoses you must have a baseline study on room air, then when you are diagnosed with OSA then they apply CPAP to titrate your pressures. If they did not first diagnose you before applying CPAP, this could very well be the complication.

Well, I completely understand that the insurance has to have a diagnosis otherwise they'd be expected to pay for anything. But I DO ALREADY have a diagnosis and have all the verification for it...the dx IS tracheobronchomalacia. CPAP is a standard treatment for the condition. So, to be honest, the sleep study was never needed and the doctors knew that but the insurance company wanted it and said it was necessary in order for them to cover the CPAP equipment. So, they did the sleep study titration to placate the insurance company. The reason that they didn't want me on room air is because it would have been unsafe for me to do so and the doctors wrote the orders that way.

I guess to be honest, it's just figuring out how to deal with a rare condition and the problems that it causes. Seems to cause more than just physical problems and complications.

I can't wait for the CPAP to get approved and really hope that it will soon. My nose is getting blistered and bleeding from the mask that doesn't fit and the tape and bandaids aren't working for me.

[miklub]

I too am diagnosed with tbm. I was sent to Beth Israel deaconess medical center in boston to have a tracheoplasty done. It seems to have helped for the most part. I recently have had either an extention to the collapse or the end of the mesh on the end of the main bronchio stem came loose. working on going to boston to have the doctor who performed the surgery look and see what he thinks. Maybe you should look into that procedure.

[Goofproof]

Miklub, after 5 years they probably found their solution, I hope! Jim

Is my computer clock still running, it's not the weekend yet is it?

[chunkyfrog]

No, Jim, it's only Wednesday; but it is summer.
Think heat index . . .
And boredom . . .
Or just the lack of a calendar.