Feeling like I cannot breathe

[vgrando]

I tried to post data and was told I was at my data size limit. I did not realize I could delete old files, which I just did!

I was on one liter of oxygen when I started Pap therapy in April, when my CAs started. After my titration study in May, my sleep MD told me to stop oxygen supplementation even though my 02 was desaturated for over 90 minutes to a low of 76%. My C02 went to 49 from a baseline of 39.

I have been off 02 until the first of September when my new MD told me to supplement with 2 liters of 02.

My oxygen levels are much better on two liters than on one liter of oxygen. I rarely desaturate below 90 for more than 2 to 5 minutes on two liters of oxygen.  Although, I still have drops in 02.

Here are last night's numbers.

[Jay51]

Thank you for posting those charts.  Your charts here look pretty clean and decent IMO.  It looks like your OA's happen either individually, or in a cluster of 2 at most.  This is pretty good in that you are able to get out of them fairly quickly - some people have clusters of 5 to 10 or more very close together.  CA's don't look too bad.  

The only thing that stands out to me is the low tidal volume.  As long as you have supplemental oxygen, that it helping a lot in keeping your SPO2 up during sleep.  

Hopefully things will get resolved with your situation.  If I missed anything important here, Sleeprider will comment.

[vgrando]

Thank you!!! I meet with the Respiratory therapist next week. 

I want to confirm that Aircurve S10-A is my best BiPap choice because my main issue is low tidal volumes caused by my shallow breathing. My physical history below supports this.

I have read an Up-To-Date article on restrictive chest wall conditions. It confirmed that my severe stenosis of C3, C4, and C5 has weakened my right and left phrenic nerves that provide movement and sensation to the diaphragm, the chief muscle that controls breathing. Moreover, I have thoracolumbar levoscoliosis also causes restriction of breathing and has led to my lower lung atelectasis.  


I do not believe Medicare will pay for another BiLevel machine because it has been over three months since I started Pap therapy.  I can buy one online with the BiPap order my MD has written, but I would like to get one locally to get help setting it up.

However,  I hope you all can get me the info I need to set it up myself. 

[Jay51]

I hope you get one locally.  They can set it up for you, that is fine.  You have a good case for the ST (A).  I have used IVAPS and know most of the settings.  Sleeprider has helped other members here set up their IVAPS to optimize their settings.  StuartC used IVAPS and knew a lot about the settings, too.

[vgrando]

Well, I failed to get the AirCurve S10-A. They communicated with my MD, and my MD called me to tell me he could support an AirCurve S10-A without a new titration study.

The respiratory therapist who was working with me insisted I did not need the AirCurve ST 10 A because:
1. He thinks my Tidal volumes are acceptable. He went to a website that calculated the optimum tidal volume for a 62-inch female: 5 mls/kilo = 251 MLS and 6 mls/kilo = 301 mls. So he told me my tidal volumes at 250 were acceptable. However, looking around the web myself, my tidal volume should be 300 mls/kilo.
2. He also said that the tidal volumes recorded on my AirSense 11 were not my actual tidal volumes but the tidal volume the machine was setting for me.
3. Although my CAs have been much higher than OA since Pap therapy, he dismissed them because they were below 5.

I caved! How do I fight this response, especially since my MD was against the AirCurve St 10-A?

After rereading the benefits of the AirCurve Auto over my current machine, I ordered an AirCurve Auto online for a much lower price than the Respiratory Center would charge me. It comes in two days. I will be much more comfortable changing settings with this machine because it was clear that they would not help me change any settings on the AirCurve S10-A.

I will see where this takes me.

I see a different Pulmonologist in my community this Tuesday who is a female. I am much more comfortable with female MDs. If I like her, I will switch to her.

I recently went to a Physical Therapist who is working with me to improve my breathing by targeting my diaphragm. She told me that pregnancies can put a lot of pressure on a woman's diaphragm, which can cause issues in later life. When I told her I had one 10-pound baby and two 9.5-pound babies, she was concerned that this was adding to my issues!

[Jay51]

Thank you for the update Victoria.  According to your sleep study:

PAP TITRATION:  The patient was positive for hypoventilation in sleep.  The patient's baseline TcCO2 was 45 mmHg and increased to a maximum of 56 mmHg during the study. The time greater than 50 was 35 minutes, and greater than 55 was 1 minute.

Baseline TcCO2 was 39 mmHg, and the maximum TcC02 was 49 mmHg during the study. 


Reason For Study: The patient had a sleep study 4/2/23. AHI was 18.14/hr and

the lowest SPO2 was 83%. 1L oxygen was added during the study, and concern for

hypoventilation.  

You also stated that: "When I am asleep, I have low tidal volumes (80 to 200) and slow breathing, and few OA or CA."  On your OSCAR charts (with treatment) I have seen your tidal volume range from 250 to 320 or so.   




Then yesterday:
"The respiratory therapist who was working with me insisted I did not need the AirCurve ST 10 A because:

1. He thinks my Tidal volumes are acceptable. He went to a website that calculated the optimum tidal volume for a 62-inch female: 5 mls/kilo = 251 MLS and 6 mls/kilo = 301 mls. So he told me my tidal volumes at 250 were acceptable. However, looking around the web myself, my tidal volume should be 300 mls/kilo.

2. He also said that the tidal volumes recorded on my AirSense 11 were not my actual tidal volumes but the tidal volume the machine was setting for me.
3. Although my CAs have been much higher than OA since Pap therapy, he dismissed them because they were below 5."

So who is right, your sleep study or your RT?  Both may be right.  The formula they used in your sleep study to diagnose and define hypoventilation showed that you do indeed hypoventilate (by your TcCo2).  The formula that your RT used (tidal volume with pap therapy based on your height and weight) shows that you do not hypoventilate (your tidal volumes are ok; or at least close enough the RT stated).

Thanks again for posting this. 

[vgrando]

Thank you! Your help and insights are always appreciated. 

I am at peace with the AirCurve Vauto for now. I have been told I need a BiPap by the respiratory therapist at AiroCare since I first started Pap therapy in April.  The many positive things you have stated about it will help me immensely. It is a step forward! 

Yesterday, I felt I needed to get a BiPap while I had an active prescription.  

You are correct, but the two in-lab studies recommended a CPAP, not a BIPAP, or a machine to support my hypoventilation.  Even though my study outcomes clearly point out that I need respiratory assistance more than a regular CPAP or BiPAP. They definitely did address my documented health problems appropriately!

Therefore,  I am not going back to this sleep center for another sleep study, which is one reason why I will change to Sleep/Pulmonary MDs who use another sleep center in my community. 

This is like a soap opera.  

[SarcasticDave94]

Soap opera? That's what we get as a consolation prize instead of proper therapy.

Noticed you're trying to get AVAPS. Best wishes you'll succeed. That's what I'm needing myself after growing past ASV. I've even tried an ST-A, pretty easy to setup yourself. I've had an RT tell me to get a ventilator like the ResMed Astral 150 or Phillips Trilogy Evo. Except she isn't able to script it.

Anyway happy Friday to all, and to all a good sleep.

[vgrando]

Thank you!  I have known many people who could not use the AirCurve ST-A.  Therefore, I figured paying $3,000 for an AirCurve ST-Am may not be my best choice. 


Maybe the AirCurve Vauto will is fine, and it only cost me $1,400. 

I have such unique problems. I desaturate at night and in the day when I am awake and at rest. But my Pulmonary function test was normal because my 02 goes up when I breathe deeply.

[SarcasticDave94]

My last PFT to check on emphysema based COPD was too good to get the doctor to recommend ventilation on top of the inhaler and nebulizer. Normally that's great news, however it withholds the therapy machine.

FWIW you're possibly aware, AVAPS will be found in the ST-A, then Stellar and the Astral ventilators. Each can do iVAPS, the ResMed take on AVAPS.

Some setup for ST-A and ASV are similar except the ST-A will have manual availability for trigger and cycle settings, and then somewhere different pressure settings available. And the VAuto has trigger and cycle like ST-A.