Feeling like I cannot breathe

[vgrando]

I do not understand these machines well. 

My issue is a restrictive lung disease caused by a weakened diaphragm and thoracolumbar levoscoliosis.

However, these changes do not result in abnormal pulmonary tests because I can still breathe deeply with exertion. However, I breathe shallowly at rest. So maybe this is why my MD does not want me on a respiratory support machine. However, from what I read 02 drops below 89% for 5 minutes is a reason for this type of machine. During my titration study, I desaturated below 89% for 91 minutes to a low 76%. 

[Sleeprider]

Vgando, your last statement helps a lot to understand your needs. Your tidal volume is very low at 280 mL To improve that and reduce the physical effort of inspiration a bilevel device is indicated with higher pressure support than your Airsense 11 can provide with EPR. The Resmed Sleep Lab Titration Guidelines https://document.resmed.com/en-us/docume...er_eng.pdf provides information on all types of positive air pressure machines. At a minimum you probably need VPAP-S or Vauto, but you might also benefit from a VPAP ST. Read about the machines and the conditions they are intended to treat and how the settings are titrated in the source above. The VPAP S is fixed pressure, Vauto is auto-pressure and both require spontaneous breathing effort. They work by providing inspiratory pressure support that acts to supplement the patient respiratory effort to overcome airway and pulmonary resistance. The ST works similarly as a fixed pressure bilevel and works in both spontaneous and timed breathing mode. The real game-changer for individuals needing ventilatory support is the ST-A which has an iVAPS algorithm that uses variable pressure support to maintain a target ventilation rate through the night.

Your best bet is going to be to request a titration for bilevel with the goal of increasing tidal volume to a level that maintains SpO2 above 90% consistently. Failing that, you should be a candidate for supplemental oxygen. Anyone with diagnosed conditions of COPD, neuromuscular pulmonary weakness and/or scoliosis that restricts pulmonary volume has more than enough comorbidities to justify bilevel or ST or ST-A. Which of your doctors is most likely to advocate for your health and improved treatment?

[vgrando]

Thank you for the added info. It is very beneficial. I will read what you suggested before meeting with my MD next week. I am now on two liters of oxygen at night!

Now that I am better informed, I do not understand why a CPAP machine was recommended in the first place after my In-lab sleep study documented both nocturnal hypoxemia and significant hypoventilation.

My Titration study also recommended a CPAP and did not mention nocturnal hypoxemia or hypoventilation, even though my 02 went below 89% for 91 minutes to a low of 76% and my C02 increased from a baseline TcCO2 was 39 mmHg and the maximum TcC02 of 49 mmHg during the study. I think a rise of 10 mmHg in C02 over baseline is significant especially since my 02 went below 89% for 91 minutes to a low to 76%. 

The American Association of Sleep Medicine approved the sleep center I went to.

[Sleeprider]

If you don't need CPAP or VPAP, just using the supplemental oxygen without it is better. I wrote his wiki on the use of an oxygen bleed with CPAP. https://www.apneaboard.com/wiki/index.ph..._with_CPAP The use of CPAP causes a lot of dilution of the supplemental oxygen due to the designed vent rate of the mask. This prevents rebreathing of exhaled air, but greatly increases the volume of oxygen that must be added to the circuit to increase the fraction of inspired oxygen (FiO2) to levels useful to a patient. I will suggest that if you don't need the CPAP for obstructive apnea, just use the oxygen via cannula. You may find your oxygen saturation is better without CPAP. Considering what we talked about before, you probably need bilevel with a pressure support around 5 cm to offload your respiratory effort, and titrate oxygen higher to maintain SpO2 and offset PAP dilution.

[vgrando]

Thank you!

1. I have been going well on 2 liters of oxygen bleeding into my APAP since the beginning of September. I was not good at the one liter my first MD ordered. Before adding the 02 supplements, I was desaturating anywhere from 30 to 120 minutes each night.

2.  I just ordered an AirCurve Vauto at a great price, and it comes next week. The respiratory therapist at AiroCare has told me I need a BiPap from day one.  Moreover, I was worried my MD might tell me to get one at my next visit.

3.  According to my oxygen ring and Apple watch, I am now desaturating when awake and at rest 82 to 85% of 02. My Internist told me to supplement with 2 liters of oxygen at rest. It is hard to tell when my oxygen percentage has dropped because I do not feel short of breath when sitting at my computer. I only feel short of breath, climbing stairs and bending over at the waist. When I do one hour of aerobics, my 02 level is acceptable; my pulse can go up 135, but mostly stays in the 120s. I am 78 years old. Therefore,  these are good heart rates for me. My breathing rate goes up, but never feels labored during exercise. 

3. I have looked back at my trend data, and my medium tidal volume has ranged from a low of 180 to a high of 300.

4. They did not record tidal volume in my titration study report.

5.  I see a new Pulmomogest next week and I will ask her to do the Bipap titration study to evaluate my tidal volume that you suggested. She is connected with a different Sleep Study Center.

[dean406]

+1 back to FFM

Although the nose masks are a little more tolerable from a comfort perspective; I ended up settling on using a FFM in the end.  The FFM took a little more time to become accustomed to; but now I love them and have no issues.  Your on the right path.

[vgrando]

My new MD was superb! She took all of my issues seriously and has ordered some new tests to see if we can get support for a ST-A. After these tests, we will do the suggested Bipap titration study.

For now, we see how I do on the AirCurve Vauto.

[Sleeprider]

Let us know when you get the new machine. If you need assistance getting setup, we will start with settings close to your current minimum 11 and maximum 14 with EPR 3, but will add some pressure support. The new settings will be Vauto mode with minimum EPAP 7.0, maximum IPAP 15.0 and PS 4.0. That will deliver 11/7 to 15/11 inhale/exhale.

[vgrando]

Thank you, I do need help setting it up and understanding the new data reported..

I have it on setting "S mode," which the respiratory rep told me that my MD wanted since he set the pressure from 8 to 12 and said nothing about the mode. I raised the pressure to 13 because the new MD told me to set the pressure difference by 5.  I was setting my AirSense 11 on CPAP mode instead of APAP, so I am happy with the "S" mode unless you think I should have it Auto mode. These settings are very comfortable.

I have read in the AirCurve clinical manual that with the "S" mode; you can have a backup. How do I do that?

I have no clue how to set Ti-Max; Ti -Min, or Rise Time. I have Trigger and Cycle on high. They came set to medium.

Yesterday, my medium tidal volume was 300 and today, it was up to 340.  
Both yesterday and today my CAs clustered while I was awake in bed in the early hours of the morning.
 

Today's readings are:
Pressure:        12.9
Exp pressure.   8.4
Leak:               0L/mm
Vt:                  320 ml
RR:                 16
MV:                 5.3L/min
Ti:                   1.1s
I:E:                  1:2.3
Spont Cyc:         98.5%
AHI:                  10.7
Total AI:            10.7
CA:                   8.5

[SarcasticDave94]

Ti Min/Max and Rise time will more likely be in an ST or ST-A if I recall correctly. I'm thinking the doc is setting you up with things that mean to a degree you're dependent on them for the settings, because you're "not experienced and trained to edit those settings" ish. S Mode removes most to all Auto pressure functions within the VAuto. I've not used VAuto so I could be very inaccurate, and it may turn out S mode is acceptable for your use case. It's just sounding counterintuitive or counterproductive to me.

However, your comfort trumps anything I say or think. So whatever setup is best is the goal.