Because So Many Have Asked Me To

[mars]

Hi Madalot

I love the air of serenity, calmness, and matter-of-factness, in your post.

And I congratulate you in coming through the recent difficulty with such a positive outlook.

And the serene feeling persisted as I read all the other posts on your new thread. It's nice to be wanted!

Welcome back.

Mars

[jnk]

Yep. What Mars said.

Thanks for the update, Madalot.

A good doc can certainly go a long way toward making up for a less-than-perfect DME.

Your clarity continues to impress.

Thanks again.

jeff

[DoriC]

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

.

Cman, I love your poetry too, very funny stuff from a very serious man!

[JohnBFisher]

Madalot, we are all rooting for you!

I agree with Mars. In fact, I decided to find an image to capture that sense:



Know we are rooting for you. And you are in our prayers and thoughts.

[kteague]

Well, let me join the welcome (back) wagon! Besides you being "one of us", your particular journey gives us insight into what it is like to be living with OSA that is complicated by another, and uncommon, illness. Thank you for allowing us that insight. It is a valuable reminder that potentially everyone could have a complicating illness, even undiagnosed.
Kathy

[rested gal]

As do so many, I wish you well, Kathy.

[Rebecca R]

Still Cheering for you.

[ozij]

Welcome back, Kathy. We're here to share your journey with you -- all parts of it -- and I'm glad you've decided to let us do it.

Your relationship with the doctor sounds like its on the right track -- which is very good news.

I thought you explained the doctor's diagnostic process very clearly.

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.

I for one would find it both helpful and informative to hear what your doctor and Muffy have to say about your oxygenation results. And questions you choose not to answer may shed light on things even when you exercise your choice not to reply. Thank you for taking the time to explain your situation. An open mind an open heart are excellent resources - whether or not they are met with they same.

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 ...

Michael (unadog) that is a very good point, and not as sexist as it may sound -- research in the way males and females communicate has shown it to be the case -- Deborah Tannen for instance. I liked your alternative interpretation of the doc's response!
O.

[Huffer]

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]

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.

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

[DreamDiver]

Madalot,
I'm glad you're back. Thank you for explaining so clearly what's going on and how you are managing everything. I'm glad you were able to impress upon your doctor that it needs to be both of you working together. Excellent. Sleep better and better.

[Madalot]

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.

I have dogs too and perhaps I'll post a picture of one of them sometime too. I just love cats so much and happen to have more "cute" pictures of cats!!

[Madalot]

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.

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

Thank you. I'm going to answer the above question to the best of my ability. There is a big difference (in my mind anyway) between a RESTING rate and a SLEEPING rate. I don't know what my sleeping breathing rate is because -- I'm asleep. All I can tell you is what I do know for sure.

When I first get myself hooked up on the vent and oxygen, I have to sit on the side of the bed to do it and because I move around, my RR increases (and if my hubby is teasing me and getting me aggravated, that rate can be pretty high). I almost always lay there, propped up on about 4 pillows, watching TV until I feel very sleepy -- ie relaxing. If I turn my head to look at the monitor, my RR is usually between 9-12 at that point. I'm just resting and relaxing, but not about to sleep. Once I turn the TV off, discard a pillow and lay down for sleep, I relax even more, on my way to La la land. I sometimes open my eyes to look at the monitor at that point and have seen the RR as low as 8. But if I move around at all, the RR jumps back up between 10-12.

If we set the Breath Rate too high (and I'm not saying increasing to 8 would do this, but this has been my experience when we HAVE increased the Breath Rate to 10) -- the machine forces breaths too often and makes me feel like I'm being suffocated.

This is the best answer I can give at this moment. I hope it answers the question posed.

[-SWS]

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.

That sounds pretty good to me, Madalot.

In summary: 1) you have some really good doctors, 2) your medical team is receptive to your questions/suggestions about your therapy settings, 3) you breathe better with your equipment and are learning to sleep better with it, and 4) you and your medical team will keep an eye on treatment efficacy toward adaptively making necessary changes in the future. Wonderful IMO.

Welcome back.

[-SWS]

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.

The two modes are VERY similar. But the fact that the clinician can set the machine up in either mode implies that there is SOME functional difference. I'll try to describe that difference below:

That functional difference lies in just how long the machine's higher IPAP pressure is delivered before the machine cycles back down to lower EPAP pressure. Pressure Control (PC) and Spontaneous/Timed (S/T) modes each utilize the numeric value assigned to the machine's "Inspiratory Time" setting a little differently (Respironics machines are being described).

If the machine is set to operate in Spontaneous/Timed (S/T) mode instead of PC mode, then the machine treats that "Inspiratory Time" parameter as if it were only a maximum or upper time-limit for IPAP delivery. So if the machine is set to S/T mode, the patient's natural breathing usually controls the machine's transition back down to EPAP pressure---unless that maximum or upper time limit has been met.

By slight contrast, if the machine is set to operate in Pressure Control (PC) mode instead, then the machine treats that same "Inspiratory Time" parameter as the fixed amount of IPAP delivery time that should occur for all breaths. In PC mode, the patient's natural breathing is never allowed to control the duration of IPAP delivery. Rather IPAP is always timed exactly according to the value assigned to "Inspiratory Time".

Generally, S/T mode is more comfortable because the patient tends to control the machine's pressure transition back down to EPAP. However, if a patient's own inspiration pressure/flow is not steady enough, then an S/T configured machine can be repeatedly "tricked" into prematurely cycling back down to EPAP pressure. In that latter case, PC mode becomes advantageous over S/T mode.

Madalot, I hope that description helps. But I also hope it isn't too technically detailed...