New Member/User

Hello all, new guy here, and late to the party -I should have begun this process well before now but here I am.

I am a 62 year old male in the Chicago area. I suffer from a rare disorder called Kennedy's Disease, or SBMA. it is a neuromuscular disease that affects the lower motor neurons and progressively wastes muscle. It especially hits hard the hip girdle and shoulder girdle, so it greatly affects the diaphragm and other breathing muscles. There is no cure or effective treatment and typically it progresses over decades. Theoretically, it does not decrease lifespan but in reality it does, usually from respiratory issues.

This was all complicated in the fall of 2018 when my overall health ticked downwards. In November of that year I was hospitalized for the next 8 1/2 months, including the first 7 1/2 months on a vent. Turned out I had a 24-pound super megacolon they eventually removed. I came home from the hospital in July 2000, and while my breathing was pretty good for the first year, over the last few months it is has been increasingly poor.

Recently, my daytime pulse ox levels have been 91-93, while overnight they constantly have dipped into the 83-85 range, sometimes lower. My sleep was broken up into one to two hours segments, with occasional nights where I got little sleep at all. I would regularly awaken with headaches and light headedness, and throughout the day suffer from confusion and exhaustion.

My pulmonologist confirmed high CO2 levels and referred me to a PPE provider that was affiliated with my insurance. They were more than happy to give me only one option, a trilogy ventilator which would have cost me about $250 a month in perpetuity after insurance. I did some research and surmised this might be overkill. My pulmonologist agreed that a bipap would be sufficient. The PPE provider then quoted me total package of over $3000 for a ResMed AirCurve 10 VAuto and mask.

This past Saturday I acquired, via Craigslist at the cost of $350.00, a ResMed AirCurve 10 VAuto with a Climate Line Air Heated Tube, case, and extra filters. The machine has 115 hours on it and appears like new. The seller also included a large New Ultra Mirage face mask, which upon research I have found is old school but would work on at least a temporary basis.

Yesterday afternoon, I put everything together, put the mask on, closed my eyes, and fell asleep for an hour. Last night I put the mask on around 11:00 o'clock, fell asleep a bit after that, and woke up around 5:30 AM. I checked my pulse oximeter and I was shocked to see it at 97-98. I took the mask off, watched the news for awhile, put the mask back on and slept for three more hours. For all three instances the mask was pretty comfortable, only causing some slight pain on the bridge of my nose, and I felt great upon awakening.

The rest of my day today is going to be spent figuring out the Oscar software, but these are the numbers that came off the machine after the three sleeps I described. Can anyone please let me know if there's any great significance to them? Helpful hints? Do you think I would be well served by upgrading the mask, or trying a nasal mask? Thank you in advance for any help, and I'll update soon with Oscar.

Used hours 10.3
Cycle medium mode VAauto
Max iPAP 15.0
Min EPAP 4.0
PS 4.0 TI Max 2.0S
Pressure 5.2
Exp pressure 3.2
Leak 0 L /min
VT 180ML
RR 9
MV 3.4 L/min
TI 0.5 S
I:E 1:4.2
Spont cycle 100%
AHI 0.9
Total AI 0.9
Central AI: 0.5
Ramp time 5 minutes
Start EPAP 4.0
TI Max 2.0 S
TI Min 0.3 S
Trigger medium

My recent CO2 numbers were:

pH, venous 7.343
PCO2, venous 73.7 mmHg
Venous bicarbonate 40.0 mmol/L
Venous base excess 14.3 mmol/L
Venous total CO2 42.2 mmol/L


I am currently confined to a wheelchair and am continuing physical therapy in hopes of reversing that. I'm also cancer survivor - in 2011 I had a radical cystectomy so now my bladder is no longer OEM. Despite all this (and more, believe me), I’m still here and I love my life. I am excited by these initial results, but want to keep in in the fairway and not start planning my surprise 90th birthday party for myself.

What a tough hand you've been dealt, and how well you're playing it -- my hat's off to you. I'm hoping Pugsy will swing by and comment, but I would say in many respects things look very good. And I'm really impressed by how quickly you've adapted to using the machine. Two comments:

* Please discuss the tidal volume, respiration rate, and minute ventilation with your doctor, along with your I:E ratio. These values are all low, but given your medical issues, these may be satisfactory values for you.

* Do you have a recording pulse oximeter? If not, you might consider getting one that is compatible with Oscar. On the Welcome page, click on Oximetry Wizard for information about which ones would work.

This situation is very unusual and the normal numbers that we would look at when evaluating OSA therapy results aren't going to really shed much light on anything.

Is your pulse oximeter just a spot check pulse ox or does it record levels of oxygen overnight?

I assume these numbers above are off the machine LCD display and I think the RR rate and tidal volume and all those other numbers pertaining to respiration are likely 95% number which means you were at or below that number for 95% of the night.
OSCAR will tell us for sure.

They are a little bit below norms for most people but they might be normal for you.
The person you really need to run those numbers by is your pulmonolgist.

As for your mask question...if your leak numbers are well within what the machine can compensate for (OSCAR again will help with that) then there is no urgent need to try a different mask unless you just want to simply from a comfort aspect of things.
Mask preferences mainly come down to personal choice or comfort more than anything else.

Do make sure to keep a log as to how you slept and even more importantly how you feel...and tell your doctor what you are up to.

Helluva deal on the machine...good job.

My pulse oximeter does not record levels of oxygen overnight- thanks to both of you for the heads up on this.

I appreciate the quick responses, and I look forward to posting more data thru Oscar.

And I consider the equipment price a win- my extended time in the hospital gave me an opportunity to closely monitor medical billing, and despite the fact I did not have great hope for a positive view from the beginning, the process and amounts billed to insurers, as well as everyone that has their hand in the pot, infuriated me. I would rather spend 350 out of pocket than contribute to that system.

Last thing- does anyone have any suggested modifications to my settings?

Thanks again to everyone!

I am hesitant to recommend any changes in settings because you aren't using the machine in the traditional manner for sleep apnea or those kind of airway issues. You are using it for an entirely different situation and that is above my pay grade to understand.

I will say this...IF...big IF...you were an OSA patient...I would tell you that things look good as is and I wouldn't change anything unless something changed. Remember this is a one night only deal Even with OSA patients we tell them that we don't go changing things willy nilly based on one night's data unless there is an urgent need.

What I see here...if you were an OSA patient...I would say continue as is and see how you sleep and feel.

BUT you have some very special needs and are essentially using the machine "off label" and that's okay has long as you AND YOUR DOCTOR are happy with how you use it and the results are where you want to go.

It is unfortunate that there isn't a home gadget that would make it easy for you to measure your CO2 levels since that is a prime factor in why this machine is being used. Or at least I don't know of any such gadget.

Oscar data from last night. Certainly different pressure, tidal volume, RR numbers than the previous night. More normal?

That last post's graphics were not easy to read...here are the stats:

bump

Yes, those values are much more normal. Are they what you’re seeing most nights? And are you on the trail of a recording oximeter that you can use with Oscar? Finally, are you consulting with your pulmonologist about your use of the VAuto?