When UARS Is Lung Disease? Lung experts?

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RE: When UARS Is Lung Disease? Lung experts? - Sleeprider - 07-01-2023

You should wait on the results of your PFT and ask these questions of your doctor. In my experience, hyperinflated lungs can retain higher CO2 which is a breathing stimulant. This may explain your relatively rapid breath rate, however you are withing the range of normal for this, so don't get too excited about it.

RE: When UARS Is Lung Disease? Lung experts? - Apnea23 - 07-01-2023

Thank you, I have attached as promised some screen shots from my Resmed Airlink flow patterns.

Normal breathing and some of the sketchy breathing which only happens during a certain stage of sleep 3x nightly. The same period I often wake up when using CPAP like clockwork. Generally the latter of the 3 periods is the worst before morning.

RE: When UARS Is Lung Disease? Lung experts? - Apnea23 - 07-01-2023

I have no idea if this next screenshot is of any interest but it's an ASVAuto test.

I have very limited knowledge but I notice the higher respiration rate (increased co2) which climbs higher each "period" quickly turns to a significant drop in respiratory rate (to manage o2 levels?), and then the ASV wants to pump pressure in due to the drop in minute vent, BUT while my body is trying to clear co2 for a reason.. does that sound about right?

RE: When UARS Is Lung Disease? Lung experts? - Apnea23 - 07-01-2023

Although the climbing respiratory rate seems to be in reaction to initial drops in respiratory rate..

..to which I guess it's then climbing too high overcompensating.. and then needs correcting with further drops.. and so on and so on during these "periods" (REM?).

Is this hyperventilation/hypoventilation in response to flow limitation (upper airways or the lungs as cause) or am I barking up the wrong tree.

RE: When UARS Is Lung Disease? Lung experts? - Apnea23 - 07-02-2023

I note a large area devoid of much on the right lung (left on screenshot view) from my CT results.

[Image: Screenshot-20230702-092438-Samsung-Internet.jpg]

[Image: Screenshot-20230702-092438-Samsung-Internet.jpg]

Sorry, I'll stop endlessly posting crap now. Last one, I promise.

If the NHS wasn't so BAD in all respects, I wouldn't be forced to clammer for help and advice on here, or pay for private CT scans, equipment, specialists etc out of my own pocket.

My GP, I know full well, will not have any proper answers, nor be interested in referring me to a pulmnologist or a sleep study with o2 monitoring etc. Especially if basic PEF/FEV1 comes back ok.

P.S. I will just add, the area devoid of space is the exact area I wake up with pain in the morning, and after short walks.

The same area I had searing pain for years (much worse than what I currently experience) after resistance training in the gym, when doing a pulling motion with weights I felt immediate middle right back pain and secondary nerve pain that radiated down my right arm, fingers, right neck etc. At the time I had imaging on my thoracic, cervical and back area and nothing was found. Absolutely bloody nothing.

As a side, I used to get very dizzy and breathless doing resistance training. I had to take deep breaths to avoid passing out. I used to wonder why. I would feel light headed and stupid for many hours after a session.

I have suspected the lingering back pain was postural, but interesting it hurts after sleep and walking and correlates to the area in the scan.

I was in such crazy pain there for years afterwards, and anything I do now involving lifting, or just walking, increases the pain there.

Very interesting.

RE: When UARS Is Lung Disease? Lung experts? - Apnea23 - 07-02-2023

Bought my own PEF/PEV1 device.

Today after being on my feet for a few hours outside, back hurting really bad as usual after walking around and been on my feet for a few hours, with rest inbetween, then sitting in the car home for almost 2 hours afterwards at total rest, got home and did test -

PEF 437L/min
FEV1 3.12

For my age (40) and height (182cm) I understand the estimated FEV1 is 4.4, and 3.8 if I was in my 60s.

Roll on treatment, I'm sick of this pain and messed up sleep, amongst other things.

RE: When UARS Is Lung Disease? Lung experts? - Sleeprider - 07-02-2023

I don't know how you have access to the Airlink charts, but the presence of flow limitation is well marked. Greater pressure support is the best way to resolve flow limits and to ventilate for CO2 retention. We use pressure to keep the airway patent, and "positive end expiratory pressure" (PEEP) to recruit lung volume for oxygenation. Your experiment with ASV shows that while you have no events with ASV, it may not be the best choice for you. For consistency in pressure support and to manage time of inspiration, the Aircurve 10 Vauto would be the best choice, particularly since your issue is not central apnea or pulmonary disease. The ST might be an alternative, but I don't like its square wave pressure transitions.

I cannot interpret or advise on pulmonary function tests or your scans. I have neither the expertise nor the ability to offer anything that might be construed as medical advise on this forum.

RE: When UARS Is Lung Disease? Lung experts? - Apnea23 - 07-03-2023

Hi Sleeprider, I have an Aircurve VAuto and a small ammount of pressure support eliminates my flow limitations, but in doing so fragments my sleep - arousals, waxing/waning and respiratory peaks and troughs.

So I'm in a catch 22.

Lucky me I developed a chest infection yesterday and almost went to hospital last night because my oxygen kept dipping below 90 and my heart pumping over 100bpm just sat in bed. Incredible back pain, lump in throat and quite breathless. It reminded me very much like my pnumathorax in my 20s. I have to take shallow breaths today to avoid coughing and tasting blood.

I believe I have compromised lungs, especially my right, and I dont actually have any sleep disorder as such - however my sleep is effectived due to it. If I don't use PAP I'll wake up with headaches, sweating and be very tired during the day. If I use it, my sleep is fragmented but I feel awake the next day.

With my history of pnumathorax, preterm delivery where I was ventilated, and the fact I can't walk around on a good day without incredible back pain where my right lung is - and both lungs if I walk long enough, I'm convinced of it.

I will update when there's anything else interesting.

Thank you for your input.

Oh - the reason I have access to the Airlink flow rate graph is because I purchased the unit so I could experiment with nasal dilators, Alaxo stents, cervical collar, positions etc to see if I could rule out the upper airways. The Alaxo 3" nasal stents improved flow limitation and waxing/waning somewhat but nothing ultimately worked.

My next test after seeing my GP will be using a broncodilater without CPAP and using the Airlink, I think that will be very interesting. I'll post that here once I'm better and have performed the test.

Unfortunately I think UARS has been a red herring for me since 2021, and I wonder - if this /is/ the case - how many others with sleep issues or UARS actually have issues lower down in the airways and lungs that are progressing.

RE: When UARS Is Lung Disease? Lung experts? - Apnea23 - 07-03-2023

And the exact moment I almost called for an ambulance last night (I was awake, sat in bed).

[Image: Screenshot-20230703-101320-Vi-Health.jpg]

[Image: Screenshot-20230703-101320-Vi-Health.jpg]

I understand below 89 supplemental oxygen is needed.

I bottomed at 88 - then decided to lay down to try and reduce my oxygen requirements. Lucky me I didn't pass out.

This rarely happens - I assume my diseased lungs flared by mild chest infection, as I'm spitting out yellow muck when coughing today.

RE: When UARS Is Lung Disease? Lung experts? - Sleeprider - 07-03-2023

Thanks for the clarification on health history. It really reinforces just how little I actually know about your personal case and why I refrain from any diagnostics or medical advice. For the most part I try to optimize positive pressure where I can help. I believe it is cmpman that is a member here, and had chronic oxygen desaturations well below 88 for long durations, and his doctors refused to provide supplemental oxygen until he was hospitalized for pneumonia. He does fine with a 3 L/min oxygen bleed, but consistently desats with less.