CPAPtalk.com

Madalot wrote: carbonman -- you are too funny. I love your writings!! Thanks.

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madalot wrote: I know that by posting, I am asking/inviting comments, questions, concerns and criticisms. Fair enough. I'm posting with open eyes and an open heart. And I'm doing this because so many people asked me to. And I don't want to be selfish, especially if posting about my situation might help someone else down the road.

unadog wrote: If I can make a general, and somewhat sexist, comment: It seems that traditionally men try to solve problems. We don't always listen and empathize. It just doesn’t seem like that is **helping**. I, at least, would always try to offer solutions when sometimes my wife would just need to talk, or vent, and be heard! But I didn't think just listening and talking was doing anything useful ...

Madalot wrote:As a side note: a question that has been asked of me here is a question about spontaneous timed vs pressure control. If I understand both of these correctly, I'm actually getting both with the current settings. I have regular pressure control -- IPAP 14 (inhale is never lower than 14) and EPAP of 6. These are regular pressures, just like the bipap.

Madalot wrote:But with the S/T, if I don't inhale on a set schedule, the vent forces a breath. This is one of those areas that have been semi-uncomfortable because my breathing slows down a lot when I relax and I don't inhale as often as the machine thinks I should.

Huffer wrote:All I can say is "what's with all the pictures of cats?" Doesn't anybody have a dog that they care about? I'll h ave to change my avatar just to balance the scales! BTW nice to hear from you.

Banned wrote:

Madalot wrote:As a side note: a question that has been asked of me here is a question about spontaneous timed vs pressure control. If I understand both of these correctly, I'm actually getting both with the current settings. I have regular pressure control -- IPAP 14 (inhale is never lower than 14) and EPAP of 6. These are regular pressures, just like the bipap.

S/T AVAPS and PC AVAPS do function the same, as you have suggested. Both modes ensure the patient receives a minimum number of breaths per minute based on the Rate (BPM), and both modes are pressure-limited and time cycled.

However, based upon your set Inspiratory Time, PC AVAPS (unlike S/T AVAPS) has a device generated set cycle time (transition from Inspiration to Expiration) for every spontaneous or machine triggered breath. PC AVAPS will assure a complete inspiration cycle in lieu of variation resulting from spontaneous vs. machine triggered breath switching. Hence, you may want to continue discussing PC AVAPS mode with your doctor.

Madalot wrote:But with the S/T, if I don't inhale on a set schedule, the vent forces a breath. This is one of those areas that have been semi-uncomfortable because my breathing slows down a lot when I relax and I don't inhale as often as the machine thinks I should.

Does your resting breath rate actually slow to 7 BPM, or as Muffy has eluded too, would you find it helpful to raise your BPM a bit?

Welcome back.

Banned

Madalot wrote:I've decided to keep updating the board on my situation. I am taking more control over my treatment, but I'm sure there will be some that will believe I'm not doing enough. I'm okay with that. And I'm going to try to answer SOME of the questions that were posed to me before I stopped posting, but I admit there are some that I just can't (or won't) answer.

My situation is still confusing and very difficult to diagnose and treat. I had a phone appointment with my doctor earlier in the week and asked her some very pointed questions about my diagnosis and why we were doing certain things.

My first question to her was "what is my official diagnosis?" and her reply was initially, it appeared that I had obstructive sleep apnea. She said it was based on my sleep study and the movements of my chest and stomach during the study. However, she said that basic sleep apnea and diaphragm muscle weakness APPEAR very similar on a sleep study and after treatment with cpap (and ultimately needing to switch to bipap based on overnight pulse ox studies) they have concluded that my problem IS diaphragm muscle weakness resulting in apneas. She went on to explain that this is further confirmed by the fact that my desaturations occur mainly during dream sleep. She explained that when a person first falls asleep, most of the muscles remain active and assist with the breathing process. During dream sleep, the muscles all relax and the diaphragm must be able to handle the breathing -- and mine cannot because of weakness.

And if this doesn't answer the question satisfactorily, I'm sorry -- but it will have to do -- for now anyway.

She and I talked back and forth and went over everything. She made a few suggestions, which I countered with either "we've already tried that" or "I don't think we should because...." and she agreed with my reasoning.

We came to an agreement about what OUR goals are at this point. And I have to say that I have needed to change my goals and expectations in order to be realistic. Because my situation can be variable from day to day (and night to night), I need to realize that even with adequate treatment, I still may have times when I feel like I can't breathe. As long as it isn't every night, all night, and only happens sometimes, I need to accept it as still being treated effectively. As stated in a previous post, the goals are 1) Keep my oxygen levels up at night; 2) Get me breathing better when laying down (not struggling to breathe every night); and 3) Get me sleeping better overall.

We also agreed that once we get to the point where we're reasonably happy that we've met the goals (or fairly close to it), my muscle weakness will continue to progress, thus requiring regular monitoring of my oxygen levels. To that end, we did an overnight last night to see if the current ventilator settings (S/T, AVAPS with a tidal volume of 400 and maximum pressure of 23) were achieving those goals -- for the most part anyway.

As a side note: a question that has been asked of me here is a question about spontaneous timed vs pressure control. If I understand both of these correctly, I'm actually getting both with the current settings. I have regular pressure control -- IPAP 14 (inhale is never lower than 14) and EPAP of 6. These are regular pressures, just like the bipap. But with the S/T, if I don't inhale on a set schedule, the vent forces a breath. This is one of those areas that have been semi-uncomfortable because my breathing slows down a lot when I relax and I don't inhale as often as the machine thinks I should. The other setting is the tidal volume and the machine tries to maintain a tidal volume of 400 and if necessary, will push pressure up to 23 in order to maintain that level.

I don't know if this answers the questions posed enough and if not, I can try, but I make no promises to be able to give a satisfactory answer.

Back to last night's overnight pulse ox test -- Hmmm....not as good as the one I did the first night in AVAPS, but not as bad as when I'm not using any equipment. Total time on the monitor was 8 hours, 57 minutes. My basal Sp02% was 95.6%. My lowest oxygen level was 86%. Time less than or equal to 88% was 1.1 minutes and less than or equal to 89% was 2.8 minutes. However, I did have a total of 85 desaturation events, compared with 30 when the AVAPS had the tidal volume set to 550. This information has been sent to my doctor, but being Friday, I won't hear anything now until Monday or Tuesday.

So, I'm going to continue using the machine at its current settings until I hear differently from my doctor. I am also going to re-visit the question of MY purchasing a pulse ox monitor (with download and reporting) to keep my own eye on what's happening rather than needing to work with my DME. I had asked my doctor in February and she was against it then, but I think based on everything that's happened, and everything she and I have agreed to, she will be more open to my doing it rather than having to mess with my DME on this so much.

I know that by posting, I am asking/inviting comments, questions, concerns and criticisms. Fair enough. I'm posting with open eyes and an open heart. And I'm doing this because so many people asked me to. And I don't want to be selfish, especially if posting about my situation might help someone else down the road.

Banned wrote:

Madalot wrote:As a side note: a question that has been asked of me here is a question about spontaneous timed vs pressure control. If I understand both of these correctly, I'm actually getting both with the current settings. I have regular pressure control -- IPAP 14 (inhale is never lower than 14) and EPAP of 6. These are regular pressures, just like the bipap.

S/T AVAPS and PC AVAPS do function the same, as you have suggested. Both modes ensure the patient receives a minimum number of breaths per minute based on the Rate (BPM), and both modes are pressure-limited and time cycled.