New Member -- Equipment Question & Help

[JohnBFisher]

Well, Madalot, seems as if you got some excellent input. I also recommend you look into the AVAPS unit that ozij recommended. You can bring that up to your pulmonologist. Additionally, if your pulmonologist is not a board certified sleep specialist, he may want/need to send you to one. Preferably one who deals with such complex cases.

One additional thing I will note. After a while I do not notice the difference in pressure between EPAP (exhalation pressure) and IPAP (inhalation pressure). And my ASV will swing the pressures from 8 all the way to 23 (EPAP to IPAP)! You would think you would notice that big a swing!

But definitely ask your DME if they have a loaner system you can borrow to see if it has the same problem. If yes, then it could just be that you are acclimating to the therapy pressure.

Hopefully, between this site, experiences of others here, and your healthcare team you will find a solution that works well for you.

[Madalot]

I want to thank everyone for their replies and helpful insight. I'll try to answer/address the questions as I can remember them! I've been offline for a couple of days.

My equipment is correct. I am using the Phillips Respironics Bipap Auto. But you are absolutely right that so many machines look a lot alike.

My doctor is a board certified pulmonologist, specializing in breathing issues due to disease. When I was referred to her, I was having issues breathing when laying down at night. Her testing in her office did show some decrease in breathing, but not enough to get insurance to pay for any equipment. She said if it was up to her, she would just prescribe the equipment, but unless I could afford to pay for it outright, she had to go by my insurance guidelines. So, she recommended the sleep study, figuring there was a good possibility we could prove sleep apnea, thus getting the equipment that way. And she was right.

Initially, my doctor's office was excellent about sending me a letter telling me what they wanted me to have, both equipment wise and setting wise. My switch to the bipap came right before Christmas and the order went to my DME, but I never got the letter indicating the change. So, I didn't have the paperwork, on my end, to know exactly what settings she was prescribing.

I plan on confirming this information this week, but I BELIEVE I am on straight bipap settings with the automatic turned off. My DME had told me that this machine would force breathing if I stopped, but I'm not sure if it's set up to do that. I am going to contact my doctor's office and request a detailed explanation of exactly what they want me to have. I should have done that before, but Christmas got in my way!!

As far as the question about how I am determining that it's not blowing at 12 -- I'm basing that solely on how it feels to me. The first time I sensed it, I got up and looked at the display and it did show it switching between 12 and 6, but it sure did not feel like it was 12. It really felt like 6.

I had called my sleep lab and while they said the same thing about the auto on/auto off settings (dumb), they did say it was possible that the valve on the machine was getting stuck and it wasn't actually blowing at 12.

The last two days have been better and I have not noticed any discrepancy in the pressure. I definitely plan to keep an eye on it.

My DME provider has had some personnel issues in the last few weeks and getting them to help with anything is difficult at best. I am seriously considering changing providers, even though I truly hate to do it. But if that's what has to happen, so be it.

But you all are so great to help people. I'm very glad I found this forum.

Kathy

[jnk]

. . . I didn't have the paperwork, on my end, to know exactly what settings she was prescribing. . . .

It is good to get copies of your sleep studies and your Rx.

. . . My DME had told me that this machine would force breathing if I stopped . . .

My understanding is that only machines with a timed backup rate will initiate a breath for you, and the machine you have listed, does not, to the best of my knowledge, have a backup rate.

. . . As far as the question about how I am determining that it's not blowing at 12 -- I'm basing that solely on how it feels to me. The first time I sensed it, I got up and looked at the display and it did show it switching between 12 and 6, but it sure did not feel like it was 12. It really felt like 6. . . .

As has been said, you can't really go by whether you can sense the pressure. Once you get used to the pressure, it often feels as if there is no pressure at all. Most of us were shocked the first time we woke up at night and wondered if the machine was even on, since our brains had completely adjusted to the sensation of pressure. You can believe what the LCD screen tells you unless there is something very seriously wrong with the machine.

. . . I'm very glad I found this forum. . . .

And we're glad you found it too, Kathy.

[Madalot]

I was just looking over this thread and realized that there was one other thing I wanted to address. And you'll have to forgive me, but I haven't yet mastered how to quote another user's post in my post for my reply.

One of the things that has been mentioned is that I shouldn't base my impression that my machine is NOT blowing at a 12 by what I feel or sense. The reasoning behind that makes sense, but I still believe there are times that my machine is not blowing properly at the inhalation pressure.

I usually put my mask on and start my equipment 30-60 minutes before laying down to sleep. I'm semi sitting up watching TV. I do this for a couple of reasons: 1) I like to get drowsy watching TV and if I already have my mask on and equipment running, I can just lay down and go to sleep; 2) Because I have trouble breathing when laying down in bed, using the machine at that stage makes my breathing easier and I'm more comfortable.

The difference between the two pressures is significant, plus my mask kind of "puffs" a tad during a normal inhalation at 12. I can feel it. And it stops almost the second I begin to exhale.

I can be sitting there and notice an obvious inhalation pressure of less than my normal (at 12). Most of the time, after exhaling and inhaling again, the machine is then blowing at the regular pressure of 12.

The scenario that has been mentioned where my brain just doesn't recognize that the machine is actually working properly is one I HAVE noticed at times, especially when first waking up. But once I clear the cobwebs out of my head, I realize the machine is working and I just didn't notice it.

The discrepancy I'm sensing and feeling is an obvious change in pressure.

I'm working on getting my information updated on my end so I know what's been going on and discussed between my doctor and my DME. I also have an appointment with my doctor next week and plan to ask her very specific information about my issues and my needs so I can be sure my DME is giving me what I really need and not what they think I need.

The last piece of information I received indicates that my diagnosis of sleep apnea was in error and they have determined that my issues are actually being caused by muscle weakness of the diaphram, which is what I said from the start. Based on that, I'm not sure my DME has given me the best machine for my needs.

And it's because of you all that I am more aware and knowledgable than I was at the onset of all this. And once again -- I really thank you all for sharing your experiences and knowledge.

[Slinky]

Good luck, Madalot!!!

[jnk]

Kathy,

I hope you paid particular attention to ozij's post and links.

Understand that what diagnosis a doctor gives can have more to do with what your insurance will pay for than for what your actual problem is. And that is not a bad thing if it involves your doctors' "working the system" to get you what you need. That is not a dishonest thing. It is a humane, practical thing.

For example, maybe your symptoms are due totally to a weakened diaphragm. That does not make the diagnosis of sleep apnea "wrong." If your breathing at night is less effective than it should be and a machine helps how you breathe at night, calling it "sleep apnea" so you get a machine paid for by your insurance makes sense, regardless of the root cause of the condition. If it causes hypopneas, basically it IS sleep apnea, and "obstructive" can be a relative concept in some ways. Every patient is unique in some way.

It is good to learn all you can and to be involved with your therapy. Just be sure not to get in the way of however your medical team may choose to get you what you need. There may be subtle ways that they wink at you and drop hints without stating exactly what they are doing, and that can have more to do with covering themselves legally as they get you what you need than it does with hiding anything from you or being "wrong" or anything else.

I am sure you recognize all those subtleties of how the present medical system works. But I wanted to be sure you read ozij's post carefully and thought about what it is your doctors may be trying to do for you. You and your doctors may all have some subtle roles to play.

That being said, I agree with you:

I'm not sure my DME has given me the best machine for my needs.

jeff

[Madalot]

Hey Jeff --

Thanks for the insight and helpful suggestions. I did read the post you mentioned and did some reading on the machine mentioned.

And I believe you are correct in that my doctor sometimes has to "play" a bit to get what I need through the insurance. Her comment to me initially that if it were up to her, she would prescribe the equipment, but insurance would not pay for it based on the tests she did in her office. So, she went the sleep study route and ended up getting evidence that I needed the equipment. However, she probably HAD to start with a cpap and continue testing my response to it and work up to the bipap machine, which is typically what a person with neuromuscular disease would need. I suspect that she is still doing this -- giving me what the insurance says is appropriate, while continuing to order testing to see if we need to upgrade to more sophisticated equipment.

I think one of the problems I'm facing is a lack of "honest" communication with me. My doctor is supposed to be one of the best there is and I trust that. She's just not very communicative with me about exactly what she's doing and thinking. Plus, there have been times that my DME has tried to get her to order something for me and she "appears" to be resistant to it. That, on top of my DME having some serious issues, makes it a little hard for me to figure out exactly what I need to do.

I need to find that line that I need to stay on to get what I need without crossing over and antagonizing the people that are supposed to help me get it.

[jnk]

Hey Jeff --

Thanks for the insight and helpful suggestions. I did read the post you mentioned and did some reading on the machine mentioned.

And I believe you are correct in that my doctor sometimes has to "play" a bit to get what I need through the insurance. Her comment to me initially that if it were up to her, she would prescribe the equipment, but insurance would not pay for it based on the tests she did in her office. So, she went the sleep study route and ended up getting evidence that I needed the equipment. However, she probably HAD to start with a cpap and continue testing my response to it and work up to the bipap machine, which is typically what a person with neuromuscular disease would need. I suspect that she is still doing this -- giving me what the insurance says is appropriate, while continuing to order testing to see if we need to upgrade to more sophisticated equipment.

I think one of the problems I'm facing is a lack of "honest" communication with me. My doctor is supposed to be one of the best there is and I trust that. She's just not very communicative with me about exactly what she's doing and thinking. Plus, there have been times that my DME has tried to get her to order something for me and she "appears" to be resistant to it. That, on top of my DME having some serious issues, makes it a little hard for me to figure out exactly what I need to do.

I need to find that line that I need to stay on to get what I need without crossing over and antagonizing the people that are supposed to help me get it.

That's the line we all walk, and it isn't easy.

The problem in this day and age is that highly communicative doctors can easily find themselves in legal trouble and, even worse, in trouble with the insurance people who run this part of the planet right now (with a little help from a few politicians). If a doctor finds, for example, that she is being quoted to the DME, she may worry that she might get quoted to insurance, too, by that same patient. And if she has said to a patient: "I am working the system to get your insurance to give you something I think you need but they won't pay for without my jumping through hoops," that doctor, brilliant though she may be, could easily find a part of her anatomy in a sling one day with accusations of insurance fraud or worse, if there is worse, that is. And yet, that is the position virtually all doctors find themselves in.

I don't know you or your doctor of course, but what may help is to thank your doctor a lot for what she does and has done and to express your confidence in what she is doing, but in such a way that makes clear you expect her to keep doing what she is doing. "I know you are doing things to get me what I need. Is there anything more I need to be doing right now to cooperate with that?"

I think most doctors like and admire patients who are active in their therapy, but the legal and financial climate makes us, such active educated patients, a possible liability, nevertheless. So we have to go out of our way to express restraint, cooperation, and insight as we play our role as an active member of the team. And when we are vocal with our doctor, we may have to find ways to assure the doctor that we are not being as vocal with insurance, DMEs, and other doctors about what that doctor is doing.

Or, I may misunderstand your situation completely. I'm just throwing around ideas based on some of my experiences as a patient over the years. Your approach and your doctor may be very different.

I sincerely hope you get exactly what you need.

jeff

[Slinky]

Ah, jnk, you are wise beyond your years! I wish I had your good grace instead of my hair-trigger temper when it comes to the medical profession.

I don't know what it is w/me. I'm usually pretty easy going and it takes a lot to rattle my chain. Usually its just easier to let stuff go like water rolling off a duck's back - but when it comes to the medical profession ......

[jnk]

Ah, jnk, you are wise beyond your years! I wish I had your good grace instead of my hair-trigger temper when it comes to the medical profession.

I don't know what it is w/me. I'm usually pretty easy going and it takes a lot to rattle my chain. Usually its just easier to let stuff go like water rolling off a duck's back - but when it comes to the medical profession ......

Well, Slinky, I don't know about "wise" at all, when it comes to me. I just try to figure some of the angles of why some docs act the way they do. I assume there must be some logic to it and try to balance a generous judgment of their motives with the right dash of cynicism.

Your health matters, Slinky. So losing your temper about something that matters is not always such a bad thing, as long as it doesn't burn any bridges.

As a relatively large male, it is a little easier for me, I think, to have an air of intimidation without even trying. That means I talk softly. But I believe if I were a slightly built female, I would likely be talking a little louder than I do and making it clear no one should be walking all over me.

Maybe my statement above is somewhat sexist, I don't know, since it doesn't have the ring of equality. But I am NOT saying I agree with how things seem to work that way, I'm just saying that it often does. I truly believe that many doctors, even female doctors, just don't seem to take women seriously in the doctor's office with many medical matters. My primary suggestion to most small females is that, if possible, they ask a relative or friend who is a little large and male to sit right next to them any time they deal with any medical professional. If that is not possible, a display of, uh, shall we say, intensity, in the right dose might be the exact right thing to show, if directed strategically.

Feel free to slice and dice if that observation crosses any lines.

[Slinky]

5'4" and 110-120 lbs means you may well have a point, jnk. But I could sling mail sacks w/the best of the men in my day! And I was 110-115 back then.

[jnk]

5'4" and 110-120 lbs means you may well have a point, jnk. But I could sling mail sacks w/the best of the men in my day! And I was 110-115 back then.

You might want to mention that mail-slack-slinging when speaking to the doctors. Just tell them that if you can sling sacks of mail, you should have no trouble slinging males in slacks.

[JohnBFisher]

... Just tell them that if you can sling sacks of mail, you should have no trouble slinging males in slacks. ...

ROFLMAO!!!

[Slinky]

Giggle. But that is not the grace and tact that I've so admired about you, jnk!!

[GumbyCT]

Giggle. But that is not the grace and tact that I've so admired about you, jnk!!

That is the Business End, Bless his heart