Looking For Tips On How To Interact With The Doctor

[Mike208]

For those of you who know about my issues, it was two weeks into my CPAP trial last Friday. I have an appointment with the doctor on the 28th. I still attempt to use the machine each night without a lot of success. I spoke with the sleep tech Friday and she told me the doctor will not be happy that I have made adjustments to the machine on my own. I told her that I thought it was better than just giving up. At least I'm still attempting to use it. She understood that but was just preparing me for what I will be dealing with. Anyone have any tips on how to approach this with the doctor? Should I push for a bi-level? What if he says no? As a reminder, I have been having a lot of air in my stomach and fight the machine to exhale/breathe. The prescribed pressure is 13. I have tried 11, 10, and 8 and still have the same issues.

[Greg Riddle]

In my recent experience I hope the doctor is ok with my changes.she can't complain too much, the dme screwed up the settings when I got the machine. I wonder how many people walk out with machine not set properly. The changes I have made, made my sleep better. If she doesn't like it oh well.

[bwexler]

You have an auto set machine. If I were you I would set a range. Maybe 6 to 14 and watch my data while the machine adjusted to my needs. I would then fine tune the settings until I could sleep well and comfortably all night.
I would then bring in reports documenting my progress and ask the doctor where he was when I really needed him. If the machine could not correct the airophageia I would ask the doctor if he knew how to deal with it. If not I would want a referral to someone who does.

[Nick Danger]

My approach is to roll with it - I kind of smile sheepishly and say - Oh, I thought I was doing it right... listen to the lecture and go my merry way.

[BlackSpinner]

You pay his salary (through your insurance) the doctor works for YOU.
He/She is a specialist in their field like you are in yours and in your body. Bring in all your data, print outs and questions with a copy for them. Then go through the list. If they are not willing to do that, fire them.

[Sleeprider]

For those of you who know about my issues, it was two weeks into my CPAP trial last Friday. I have an appointment with the doctor on the 28th. I still attempt to use the machine each night without a lot of success. I spoke with the sleep tech Friday and she told me the doctor will not be happy that I have made adjustments to the machine on my own. I told her that I thought it was better than just giving up. At least I'm still attempting to use it. She understood that but was just preparing me for what I will be dealing with. Anyone have any tips on how to approach this with the doctor? Should I push for a bi-level? What if he says no? As a reminder, I have been having a lot of air in my stomach and fight the machine to exhale/breathe. The prescribed pressure is 13. I have tried 11, 10, and 8 and still have the same issues.

The important points of this conversation are:

1. I have tried
2. I experienced physical discomfort and was not tolerant of the prescribed CPAP pressure
3. I attempted to remedy the problem working with the DME
4. When that didn't work, I tried to find a fixed pressure that would work. I could not find one.
5. I scheduled a visit with my gastroenterologist who recommended bilevel CPAP as an alternative, or I would need surgery.
6. Help me solve this problem. I will do my part, but the currently prescribed equipment has failed me because I cannot physically tolerate it.

Be prepared to discuss the issues of aerophagia, LES pressure threshold and desire to achieve effective treatment. Take your Gastro's name and phone number. The patient that is engaged, interested and educated is not a bad thing.

[HoseCrusher]

Mike, you need to remember who is serving whom.

If you think of it in a business model...

You have a business that is dependent upon delivering a product. That product is you, fully alert, and in a good state of mind.

You are falling a little short on your delivery so you went to hire a specialist - your doctor - to help you out. Remember, you are the boss and if your employee doesn't work out, fire him and find another.

The reason you hired a specialist is because you are unable to fix the problem yourself. Remember that the doctor is the specialist and to render due respect for his knowledge. The problem is that at 2a when you rip your mask off in disgust your doctor is not available to counsel you on how to proceed.

If I were you... I would read up on what qualifies for a bi level machine and see if your condition meets some of those conditions. I would "spoon feed" these conditions to the doctor and see what comes of that.

Your doctor walks in the door.

Hello doctor, I thought we had things figured out but it is not working. I had these issues (#1, #2, #3...) with the initial settings. Since I am having difficulty breathing out I decided that the pressure must be too high so I lowered it a little. That didn't work either.

What I want today is a plan on how to proceed. I also what "plan B" is if the initial plan doesn't work, and I want a way to contact you (or someone knowledgeable with this therapy) to guide me through any difficulties.

Is there a way to set up the machine so I can exhale against a lower pressure?

My health is important to me. Since starting this therapy my health has gone down hill. I would like to at least get back to where I started and ultimately would like to show great improvement.

Can you help me?






Worst case...

By now you will have used up your 10 minutes. Your doctor may scold you for making adjustments and since you are out of time you will have to schedule another appointment in 2 weeks or so.

At this point you say...

I hired you to help me with a problem. You did so but only part way. It appears that my condition is beyond your expertise so could you refer me to someone who not only cares but also understands the problems associated with this therapy?




OK, a lot of this is a little off the wall but I think you get the general idea. You are important. The doctor works for you. He isn't doing his job. Give him a second chance but don't put up with any crap excuses. The solutions are available. You are not the only person on the earth that has experienced your problems. You just have to work through the issues and come up with the specific solution that works for you.

[Mike208]

Excellent advice with some great points to focus on. I appreciate the help!

[TechJungle]

... I spoke with the sleep tech Friday and she told me the doctor will not be happy that I have made adjustments to the machine on my own.

Have you considered the possibility that it is really the sleep tech who is unhappy? After all, you have been interfering in her job.

I wouldn't be surprised to hear that the doctor understands what you've done once you've explained yourself.

Don't sweat it!

TechJungle

[Janknitz]

If the doctor chides you for engaging in your own care, fire him. This is YOUR health and nobody cares about it as much as you do. You don't need anyone's permission to take care of yourself.

[BlackSpinner]

Also compare it to diabetes.
People, including kids, regularly test their blood and inject themselves with medication that can be used to kill.
If you could be trusted to inject insulin at assorted levels, why would you not be allowed to adjust air pressure? Especially as the maximum on most machines would not inflate balloon.

[Mike208]

Excellent points. And it very well may be that the sleep tech is the one who is upset. I know, if it where me, if I was the doctor, I would understand and praise the patient for wanting to take charge of their health.

[Greg Riddle]

When I went to my last sleep study the tech was complaining about me changing the settings. She said I went to school for this and you didn't you should never touch it. Doctor didn't seem to mind to much

[Mike208]

When I went to my last sleep study the tech was complaining about me changing the settings. She said I went to school for this and you didn't you should never touch it. Doctor didn't seem to mind to much

That's kind of how I felt when I told her on the phone now that I think about it. I'll bet the doctor will be okay with it.

[M'ohms]

I have discovered that taking printouts of nightly reports that support my position are usually enough to speak for me. My doc and his nurses have been impressed with the printouts and certainly can't argue against them! By this method, I went from APAP to BiPap in one month, and to ASV the following year.