Because So Many Have Asked Me To

[Madalot]

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.

[DottyG]

I know that by posting, I am asking/inviting comments

Well, since you asked, I have a comment...

I'm glad you're here.

[Madalot]

I know that by posting, I am asking/inviting comments

Well, since you asked, I have a comment...

I'm glad you're here.

Thank you Dotty -- that's very sweet. I'm not sure everyone will be as welcoming or as happy, but that's okay.

I don't like the idea of leaving when so many expressed a desire to continue hearing what's going on. And like I said -- if my situation and what I've been through (and continue to go through) can help one person, it will be worth it.

And I've made up my mind that any posts along the lines that upset me before will simply be ignored.

[DoriC]

Hi Madalot, glad to see you here and thanks for the update. Sounds like you had a good conversation with your Dr and she spent a good amount of time answering your questions. Hopefully you'll be getting things sorted out soon. Keep us posted.

[DreamOn]

I'm glad you're here too, Madalot. It sounds like you and your doctor have a good understanding of your situation. I hope that you will soon achieve all your therapy goals, so you will be as comfortable and well-rested as possible.

Thanks so much for sharing your very personal journey here.

~ DreamOn

[BleepingBeauty]

Welcome back, Kathy.

Glad to hear you're communicating well with your doc, and I'm happy you've decided to stay with us here. Take from the forum whatever is useful to you, and don't worry about the rest.

I also have to say that your new avatar is making me smile.

[DottyG]

By the way, anyone who has a picture like yours in their profile is good with me! What sweet kitties! What are their names?

[DottyG]

I also have to say that your new avatar is making me smile.

LOL! BB and I were posting at the same time. But, it appears we both approve of the new avatar!

[Madalot]

By the way, anyone who has a picture like yours in their profile is good with me! What sweet kitties! What are their names?

They aren't my kitties!! I have 4 cats, but I found this picture on the internet one time and thought it was just too cute! Maybe I'll put one of my kitties on here sometime.

[Madalot]

Welcome back, Kathy.

Glad to hear you're communicating well with your doc, and I'm happy you've decided to stay with us here. Take from the forum whatever is useful to you, and don't worry about the rest.

I also have to say that your new avatar is making me smile.

This is exactly what I'm planning to do. Use what is useful and not worry about the rest.

Wise words to live by. Thank you.

[newhosehead]

Kathy, I am so glad to see you back! And I will add my voice to the others..what a cute picture!

It seems to me that you have a good relationship with your doctor and that you are listened to. That is so important. You are, I am sure, helping someone somewhere and I know that matters to you. FWIW, I think you are a class act and once again, I am so glad you're back!

Jeanette

[unadog]

I'm glad you're here.

Me too!

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 ...

Those of us who are more analytical and obsessive and towards the Aspergers end of the spectrum are also worst in that regard. It is how we function. I know it can be frustrating to "real" human beings though!

Two other quick comments:

It can sometimes take me weeks or months to understand what my doctor was trying to communicate to me after I see him. My memory and cognition problems have been quite bad with untreated sleep apnea. I don't know if that applies to you at all - not saying it does.

But even without that, it is possible to misread folks reactions. I thought maybe your doctors previous reaction was **protective** rather thna defensive: "Who in the hell is challenging **my** patient, what gives them the right, she has real problems and doesn't need someone unknown (insurance, etc.) questioning whether she deserves the care!


Finally: Over the years, when I have had uncontrolled pain, been unable to sleep night after night, or just couldn’t stand being in my skin anymore, with the flu or whatever, the one best tool I have had is meditation. I couldn't imagine trying to get through some days or nights without it.

I don't know if you have tried mediation. It is not a cure for anything. But it can help me to tolerate what is going on, sometimes when I can hardly sit or lie still due to discomfort. Cognitive Behavioral Therapy (CBT) is very popular right now and is somewhat related. As is progressive relaxation, and relaxation tapes.

You need to practice meditation when you feel OK, or at least not at your worst, to start to instill the practice. I don't know where you are with any of that, I just thought I'd throw that out there. Not that my situation compares to yours ….

Best wishes! I think there are a lot of people here who really care. This is a good community, though I am a newbie.

Cheers,
Michael

[carbonman]

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.

Madalot,

Tak'n it as you go....
do'n what you can....
tak'n the higher road.

Not know'n where your thoughts and strength are gon'a go,
no idea who may be rid'n along......
it's a journey....no sense go'n it alone.

With open eyes and open heart, so many people really care.
There's so much more go'n on here besides blow'n air up your nose.

[Ms.Snuffleupagus]

Hi Kathy. Welcome back!!!

[Madalot]

unadog -- thanks for the kind words. Meditation is not something I've considered, but it might be worth looking into. Thanks.

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

Ms.snuffleupagus -- thanks for the welcome back. I look forward to talking with everyone.