It has been almost 3 months since I started down the path of getting a ventilator from August 20 to November 14). What a ride it has been!
The initial order was lost by the doctor's office for a week. The DME messed up and changed the order to different equipment. There were delays, delays, and more delays. We left for vacation without the ventilator and were gone for a month. When we returned everything was set up and we were supposed to get the ventilator delivered before our next trip. Of course, we had a major winter storm move in and the pass was closed, so we had to reschedule until after that second trip.
When they finally showed up with the correct ventilator, we discovered the power cord was missing. So, we could play around with it for a few hours, but that was it. The power cord was delivered by the end of the week and we finally started working on getting settings in place that were right for me.
The respiratory therapist was very hesitant to change settings without permission from the doctor's office. Fortunately, the doctor, his PA, and the respiratory therapist have all worked together for many years. The doctor's office gave the respiratory therapist permission to make any changes she deemed appropriate.
I tried using the ventilator for brief stints and found that whenever i discontinued using it, it would be several minutes before I could breathe again. We have adjusted the settings, hoping that we can resolve this. The current settings might work, but I have not tested them.
When I use the ventilator, I am wiped out the next day. It takes about 10 minutes to be able to breathe normally (for me) after I discontinue use of the ventilator. During that time, my O2 saturation drops below 75%. My diaphragm then goes through a period of spasms for the next several hours. All of this leaves me exhausted with the next day being a recovery day where I can't do much.
We have adjusted the settings quite a bit, but I have not had a chance to test them yet (always had something pressing the next day, so could not take the chance that I would need it to be a recovery day).
The respiratory therapist is coming again tomorrow to try some new settings. Hopefully, we will get this sorted out soon and the ventilator will be a positive rather than a negative.
When I am using it, it is glorious. It just makes it so much easier to breathe!