Continuous cpap ordered

[Madgeyoung]

I have diagnosed with tracheal collapse (tracheobronchomalacia)and my dr wants me to wear cpap 24/day. I am fine sitting but cannot have any exertion without severe wheezing. Bronchoscope confirmed this. I can’t even imagine how this can be tolerated. She is ordering me a portable machine. The face mask and inability to talk easily are my biggest hang up. Does anyone have any suggestions.

[ChicagoGranny]

tracheal collapse (tracheobronchomalacia)

What is the root cause of your condition?

[Miss Emerita]

There's a lot of good information from the NIH here:

https://rarediseases.info.nih.gov/disea ... chomalacia

Madgeyoung, I see that there are surgical interventions that could be helpful. If you read the linked article, you'll see brief descriptions of them. If your doctor hasn't discussed them with you, I would encourage you to bring this up. It'd be wonderful if something along those lines would work for you.

[Madgeyoung]

I have had many long surgeries and damage may have occurred starting about 10 yrs ago. Asthma complicated the diagnosis. I have been admitted 3-4 times a year since then with asthma. I have other problems with heart and lungs. Pulmonologist wants to try this first. I definitely want a permanent fix. Once I get stable, we will look into that. I use a brevita mask at night and think I’m ready for a switch. I like a nasal masks. I don’t want that connects on top of head but I want one that’s not so big on my mask. Does anyone have any good selections. My pressure is pretty high at 19 and I have tried others but haven’t had any success.

[ChicagoGranny]

I use a brevita mask at night and think I’m ready for a switch. I like a nasal masks. I don’t want that connects on top of head but I want one that’s not so big on my mask. Does anyone have any good selections. My pressure is pretty high at 19 and I have tried others but haven’t had any success.

A good place to look at masks is the forum sponsor's website cpap.com. There you can scroll through many mask models and see photos, specifications, reviews and ratings. You can sort by most popular. I recommend that you stick with the most popular masks. https://www.cpap.com/

If you see some you like, post in this thread to get comments from users here.

BTW, it's a good idea to continue to use this thread and not start new ones. This allows members to easily see your important background and tailor their responses.

[raisedfist]

If indeed 24/7, then it's probably a good idea to change interfaces between day and night. The P10 nasal pillows can withstand higher pressures, is quiet and the headgear is rather simplistic.

Do you need bi-level, aka ventilatory support, or just CPAP?

Wondering if you'd be a good candidate for the Life2000 device. It's a small portable volume ventilator with battery backup. Not sure if it can do just plain CPAP mode, but you could always just apply PEEP/CPAP and use a moderate, normal pressure support level.

Do you have a cough assist?

Assuming by surgeries that you've had a tracheoplasty done or attempted?

Are you using bronchodilators?

[Madgeyoung]

I have had no surgery. Dr said it is too risky now. She wants to see if cpap during day will help with such shortness of breath during any exertion. I am pretty good sitting. I do have pulmonary hypertension from old lung clots 20 yrs ago. I had a CPET last week but haven’t heard the results. My O2 stays pretty good which to me is so puzzling. She walked me in the hall and heard such noisy restrictive exhaling. I have such a hard time exhaling.If Cpap helps that will tell her a stent would work I think that is what she said.
What does changing interfacing mean. I’m glad you mentioned Life 2000. I use a bipap at night and it averages 19. I can’t fathom wearing it during the day but I must do something. Thank you for your comments.

[raisedfist]

I have had no surgery. Dr said it is too risky now. She wants to see if cpap during day will help with such shortness of breath during any exertion. I am pretty good sitting. I do have pulmonary hypertension from old lung clots 20 yrs ago. I had a CPET last week but haven’t heard the results. My O2 stays pretty good which to me is so puzzling. She walked me in the hall and heard such noisy restrictive exhaling. I have such a hard time exhaling.If Cpap helps that will tell her a stent would work I think that is what she said.
What does changing interfacing mean. I’m glad you mentioned Life 2000. I use a bipap at night and it averages 19. I can’t fathom wearing it during the day but I must do something. Thank you for your comments.

You don't necessarily need the same pressures while awake, as you breath more normal (less shallow) as compared to when asleep. The airway may not tend to collapse as easily either.

Changing interface means using a different mask for day and night time. It can help reduce pressure sores, maintain facial structure, etc,.

Bi-level will help your work of breathing more than just CPAP alone, as it helps augment ventilation and rest inspiratory muscles.

If you don't have one already, you will need a cough assist to help get out the phlegm/secretions because otherwise you risk repeated infections and thus hospitalizations.

What type of bi-level machine are you using now? And, what are the settings for IPAP, EPAP etc?

Are you a candidate for PH specific medications?

[Madgeyoung]

Thanks for your information about the masks.i have no idea what those other settings are. I have a dreamstation for the BiPap. I also have a horrible swallowing problems. Manometry showed achalasia and outlet obstruction of esophagus . I have an appt with GI dr Tuesday to discuss EDG, Botox and biopsy to help that. When I awaken in the mornings I have such thick secretions that feels stuck in back of throat. I just have so many problems that had to be sorted out. I aspirate, have those bad esophagus spasms and food doesn’t go down right. I also have coughing and wheezing after eating Or drinking. The other problems I have with coughing Is when it is severe with Asthma I develop abd.hematomas because I am on eliquis. Last year had a serious hemorrhage, 4 units of blood, jpeg x 6 wks before it was all over. I have broken a couple ribs cough even. I will read up on the cough assist. Thank you for your help.

[raisedfist]

Do you go to a larger University hospital for your treatment? Your situation seems complicated, so I would definitely want to be under care of a multidisciplinary team that coordinates your care.

[Madgeyoung]

Yes, I switched in February because of so many complex problems. I found a smart young Pulmonologist at UAMS in Little Rock name Dr. Emily Krocurk.