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Pulmonary Embolism? - foss - 06-29-2015

My max pressure was raised from 10 to 15 last week. I had a difficult time last night. For some reason the pressure went well above 13 on the auto setting. I was tired and have low vision so the actual number over 13, I don't know.

At about 2:30 am, my mask started leaking drastically, enough to wake me up. I tried moving the mask, tightening the bands and shifting my position in the bed. I put the machine into standby mode to removed the mask for a while and to take a break. The ramp pressure started back from 5. After a short time, it was back up to a pressure that was causing leaks. I was exhausted by morning. In my way of thinking, that is the wrong direction to go after being much improved at a max setting of 10. They raised the pressure to 15 after noticing that I maxed out at a pressure of 10 much of the night and my events per hour were averaging 8.

I called today asking if the pressure could be lowered to 12 where the mask doesn't leak and I could get used to the increased pressure. The tech at the sleep center said to try it another night. If it still leaked, I could come in and try a different mask.

I explained to her that my lungs were very tired by morning. My wife asked me if they were considering the massive pulmonary embolisms I had less than two months ago. I hadn't even thought of that. They have my records, they should know. I barely survived. I spent 24 hours with an ultrasound catheter and clot buster drugs to break up the embolisms in my right lung. They were too big to leave unattended. It turned out that post surgery, I had a crushed common iliac vein in my abdomen. After taking care of the embolisms, they had to take care of the vein.

My lungs are still tired and feel weak after last night. Should the pulmonary embolism and my tiredness issue be considered with my pressure levels?

Thanks, Jeff




RE: Pulmonary Embolism? - parkerdt - 06-29-2015

You should involve your pulmonologist and cardiologist if you have one, I believe.

Dave



(06-29-2015, 07:32 PM)foss Wrote: My max pressure was raised from 10 to 15 last week. I had a difficult time last night. For some reason the pressure went well above 13 on the auto setting. I was tired and have low vision so the actual number over 13, I don't know.

At about 2:30 am, my mask started leaking drastically, enough to wake me up. I tried moving the mask, tightening the bands and shifting my position in the bed. I put the machine into standby mode to removed the mask for a while and to take a break. The ramp pressure started back from 5. After a short time, it was back up to a pressure that was causing leaks. I was exhausted by morning. In my way of thinking, that is the wrong direction to go after being much improved at a max setting of 10. They raised the pressure to 15 after noticing that I maxed out at a pressure of 10 much of the night and my events per hour were averaging 8.

I called today asking if the pressure could be lowered to 12 where the mask doesn't leak and I could get used to the increased pressure. The tech at the sleep center said to try it another night. If it still leaked, I could come in and try a different mask.

I explained to her that my lungs were very tired by morning. My wife asked me if they were considering the massive pulmonary embolisms I had less than two months ago. I hadn't even thought of that. They have my records, they should know. I barely survived. I spent 24 hours with an ultrasound catheter and clot buster drugs to break up the embolisms in my right lung. They were too big to leave unattended. It turned out that post surgery, I had a crushed common iliac vein in my abdomen. After taking care of the embolisms, they had to take care of the vein.

My lungs are still tired and feel weak after last night. Should the pulmonary embolism and my tiredness issue be considered with my pressure levels?

Thanks, Jeff




RE: Pulmonary Embolism? - OpalRose - 06-29-2015

Even though the sleep center tech has your records, you can't assume that she checked back two months.

Agree with parkerdt, you need to contact a Pulmonologist.


RE: Pulmonary Embolism? - foss - 06-29-2015

Probably not a proper question for here. I tried calling my docs office. Someone is on call but not answering.

Is there enough risk that I should not use the machine tonight and wait until I get a doc on the line tomorrow?

Thanks, Jeff


RE: Pulmonary Embolism? - OpalRose - 06-29-2015

I wouldn't stop using the machine, and you dont need permission to lower the pressure a bit if it makes you more comfortable?


RE: Pulmonary Embolism? - foss - 06-29-2015

I know how to lower the pressure thanks to this forum. I am not sure I understand the compliance issue. Am I somehow violating compliance by manipulating the machine myself?

Thanks for your help,
Jeff


RE: Pulmonary Embolism? - OpalRose - 06-29-2015

(06-29-2015, 09:36 PM)foss Wrote: I know how to lower the pressure thanks to this forum. I am not sure I understand the compliance issue. Am I somehow violating compliance by manipulating the machine myself?

Thanks for your help,
Jeff

No, compliance is simply using the machine 4 hours a day for any 30 day period within the first 90 days. Insurance cares only about compliance, not that you change your pressure



RE: Pulmonary Embolism? - foss - 06-29-2015

Thanks, Opalrose!

If I have a problem again to night after working with the mask, I'm going to lower the max pressure to 12 and try that for a while.

v/r
Jeff


RE: Pulmonary Embolism? - bwexler - 06-30-2015

Are you looking at your Sleepyhead graphs?
Have you learned to read and understand them?
With a simple APAP you can make gentle adjustments yourself. It is not generally a good idea to make an adjustment of 5 cm at one time.
You might also look at your minimum pressure settings. If it is to low the machine might run away trying to find the right setting.
You may also get some clues from your original sleep study report details.


RE: Pulmonary Embolism? - foss - 06-30-2015

My regular doc is out for the week. Her nurse consulted with one of my regular doc's partners about my issue. He said that the embolism issue shouldn't be a problem as long as I am still on blood thinner, which I am. They received the detailed data report for my last week's data. They are going to review the report and see about readjusting my settings. The tech at the sleep center said they can see minute by minute data from my Airsense 10 auto, they don't just receive summary data. She said the option to trial a different mask is still open.

Thanks, Jeff

PS. I still had issues with pressure last night but resetting the machine allowed me to get a fair night's rest. My lungs aren't nearly as tired as they were yesterday.