New and Frustrated

[monarch22]

Hi all. I'm new, but have been reading the posts for several weeks now and feel like I've learned so much from you guys! I was diagnosed with sleep apnea a few months ago. I had a titration done in December and have been using a F&P 254 for about 4 weeks now. My DME set it as cpap until I could get the prescription changed by my doctor. My pressure was set to 7. DME said to have the doctor write autocpap 4-20 cmh20. He said that once I got this, he could change the settings so I would be able to get details on how I was doing each night.

Well, I had my appt today with my PCP who ordered the sleep study and wrote the initial prescription for the cpap. When I explained to him that I would like to be able to switch the machine to auto so I would be able to get the information on how my therapy is going, he said NO! He said there is no need to do that. The prescription is written for the pressure that the sleep study showed would work for me. So I said that I felt that this information would be beneficial to see my progress. He said you don't need to see it, that's what the sleep study was for. I couldn't believe what I was hearing. I tried again to explain the the reports would show if I was having leaks and how many apneas and hypopneas I was having. He informed me that just because some tech told me that, it doesn't mean it was true. He said he's never been asked about this and so what if I had leaks, it would make no difference,that the cpap was treating my apnea just fine. He went on to say if I lost weight, I would no longer have sleep apnea.

I was so frustrated and just felt like we were going in circles. I don't pretend to know everything about cpap and osa, but I have made an attempt to learn as much as I can. I've also made a commitment to put that mask on every night. I feel that I have every right to know how well it's working and if I have a machine that is capable of this, why not use it?? My question is how do I explain to this guy that seeing my results is not a bad thing. Isn't it good to have a patient wanting to take an interest in their treatment? Maybe he's just mad because I didn't go with the DME that is connected to the sleep lab and hospital he is with?

[SnoozyQ]

1. Welcome

2. FIND A NEW DOCTOR.

Doesn't sound to me like your doc is well versed in OSA or it's therapy. You are your own advocate--find another provider that specializes in sleep disorders. You will be glad you did! I don't think you will find anyone here that disagrees with your desire to see your data and be involved in your own treatment.

[bap40]

Uh oh, first mistake was using the same facility where the doc does his business. Almost everyone who did has not been pleased. Including me. I fixed my problem by taking their equipment back and going elsewhere to do my business and all is well. If you need help on getting to those functions on your machine there will be many people who can tell you how. You need a doctor who is interested and will provide you with feedback. This guy sounds like he is just out for the bucks. You are quite right about a doctor being interested in your best welfare and being able to have a back and forth conversation. I would not be surprised if this guy has no idea about the machines themselves. I had a sleep doc who was not even in my state (I did not know this prior) and he prescribed a very basic machine for me. Also as I said the DME part was connected to him. Any doctor can write a prescription for a machine not just a sleep doc or wannabe sleep doc. When I got fed up with not getting anywhere which took me about 10 days. I contacted my family practice doc who was very happy to write me a prescription for the exact machine I wanted of course an apap. I made sure I had a new DME in place beforehand so it was pretty easy to take the old stuff back to the first place and then go right to the new one to get what I wanted. By the way the place went out of business about a year later.

It is your treatment, your life and you should be able to have exactly what you want. You may just have to fight for it. Just don't be afraid to rock the boat if you have to.
Good luck!

[Pugsy]

I have made an attempt to learn as much as I can. I've also made a commitment to put that mask on every night. I feel that I have every right to know how well it's working and if I have a machine that is capable of this, why not use it?? My question is how do I explain to this guy that seeing my results is not a bad thing. Isn't it good to have a patient wanting to take an interest in their treatment?

Geezz, some of these doctors are plain old Neanderthrals. Of course you have the right to have every bit of information available to you. Unfortunately I will bet that trying to change his mind will be highly unlikely. Some of these guys are simply control freaks. Heaven forbid that a patient have a thought that questions them. You will probably need a new doctor that is willing to share your thoughts and ideas involving your treatment. Depending on where you live and your situation, sometimes easier said than done but worth a try.

In the meantime whatever data your machine is able to deliver is certainly available via the software and reports that the DME should be able to generate. Getting them to do it for you may or may not be easy. Remember it is part of your medical records and you have the legal right to request it. Sometimes takes a bit of pushing. Sometimes they tell you that they have to send it to the doctor and you have to request it from the doctor. If this happens, you again might have to make a formal request in writing that cannot be ignored.

I am not at all familiar with your machine but hopefully someone here can tell you exactly what your machine will or will not show and what is needed to be done to obtain any data yourself (if it can be done). While it is preferable to have a good working relationship with medical professional, sometimes it is very difficult and you may need to become more educated in self defense.

[XSnorer]

From what you said, I too would be looking to find a new doctor. I am fortunate that my ENT has no issue with me making beneficial APAP setting adjustments to maximize my results.

The link to your machine shows it to be capable of providing the information you are looking for. You may have to do a bit of research to find out how you can set the machine to show your results. Also, you may need to research where to obtain the software mentioned.

[Janknitz]

Your doctor is every bit the jerk you think he is and he's not really concerned with your health, or he would want to know if the therapy is being EFFECTIVE and he would want you to know, too.

I say vote with your feet, RUN, don't walk to a better doctor and when you find one, be sure to let the old doctor know exactly why you dumped him.

[cflame1]

if you end up staying with that brand/model of machine... read this about getting software for the machine:

viewtopic/t52936/Where-To-Buy-Performan ... tware.html

[kteague]

Sounds like you found my ex sleep doctor, but maybe not since it sounds like he was prolifically cloned.

[rested gal]

Your doctor is every bit the jerk you think he is and he's not really concerned with your health, or he would want to know if the therapy is being EFFECTIVE and he would want you to know, too.

I agree 100% with Jan's assessment of that doctor.

Sounds like you have a very nice, helpful DME. I'd want the range to be 7 - 20 or, at the very least, 6 - 20. Either of those numbers for the minimum pressure in an autopap would probably let the machine treat you much more effectively than a minimum of 4 would. But anyway, I do like your DME's willingness to help you.

Too bad you're both up against a doctor who is such a .... jerk.

monarch22, if it's too difficult to find another doctor, you might consider this: I don't know what your financial and insurance situation is, but possibly you might want to just buy your own machine online -- out of your own pocket. You could keep using that nice DME for insurance reimbursed supplies... masks, filters, hoses and such. But if you, yourself, were the owner of your machine, YOU could be the one in charge of making your own settings decisions. With the software, you could see plenty of detail about what's going on. And I'll bet the nice DME would be willing to help you if you had questions. He'd have to walk a fine line to not dispense medical advice, but I'd bet you could understand what he was getting at if he started thinking out loud when looking at your data.

Or, stick with cpaptalk and you'll find out plenty about your data without having to involve the DME in that.

[Cindy Lou Who]

Hi monarch22 and welcome to the board. After reading your post I'm very glad you found this place. It doesn't matter if the Dr is mad at you for not doing business with his connections. It's pretty inconsiderate for a high level professional to let something like that get in the middle of a patient/Dr relationship! And very dumb too !

1st. Get rid of that Dr. It sounds like he has no respect for you, has control issues, and refuses to learn something from his 'customers'. Speaking from personal experience, the best treatment I got was from those Dr.s willing to work with me as a team! Perhaps if enough patients leave he may learn, but it will take a decrease in income for him to 'get it.'

2nd. Ask as many nurses (and other health people) as you can, "Who would you go to if you had Apnea?" "Who is the best?" You deserve the best!

3rd. Perhaps there is someone here that lives near you and has excellent rapport with their sleep Doc. Hopefully you will hear from them and get a recommendation.

You don't have to put up with that kind of attitude and treatment. Please let us know what you did next.
Good luck,
Cindy

[sheepdog]

Cindy dear, welcome. If you have a dr who isnt letting you be in control you need a new doctor. Even your family practice dr can write the script. It need not be the sleep dr. If you are comfy at 7 I would set at 7-20 instead of 4-20. My setting on cpap was 20 and when I reset mine to 4-20 I hated it as 4-on is way too low. I found that in my case 10 to 20 works perfectly and I spend most of my time way below 20!

If you dont get what you need let me know? I can get you the document to be able to set the thing to auto yourself. Regardless what anyone tells you their is NO law against you being in charge of your own therapy and life. You have the absolute right to know how to change settings yourself. And, it is easy!

Again, welcome. I wish you deep restful sleep.

[Goofy]

Hi and welcome!

I have been using cpap for 4 yrs. now and just recently started researching because I started having some problems. This forum is awesome and a wealth of information. I did find out today that the doctors and DME's don't seem to like it very well when we are knowledgeable about our own bodies and our equipment. I would ask a question and it seemed like they went ridged or their head whipped around as if to say, "how dare you know about that". It put me on guard and I was able to play it off as if I was just reading "customer reviews" about different products and that seemed to calm them down and I really didn't care at that point what they thought as long as I got what I needed so I can have a good night's sleep!

What I hope to do myself, is keep reading and learning and at some point be more confidient and knowledgeable so that I will be able to tell the doctor more about what is going on with me and we can be a team in my treatment. If my understanding what is going on with me or my equipment continues to upset my medical providers I will find new ones until I get what I need. I pay them, they work for me, and they will not make me feel less than!

Keep your chin up and don't let them snow you.

[mayondair]

Monarch, RUN RUN RUN ! From that jerk. He doesn't have your best interests in mind. Rested Gal has excellent advice, as always. Kathy

[Slartybartfast]

Since you seem to have a good relationship with your DME supplier, you might ask them "just for future reference" which doctors they have heard good things about. I wouldn't tell them I was thinking of bailing on this one.

Lots of times you can find a good one by asking the folks who work with them peripherally. Nurses, for example, often know which doctors are really great, which are so-so, and which to stay away from.

[monarch22]

Thanks everyone for all the good advice. I guess I just needed to hear it from you guys that I wasn't crazy and that this doctor was being a jerk. I was hurt and mad with his reaction to me. He is my PCP and I've been with him less than a year, but I've liked him up to this point. Now, I feel like it's not in my best interest to stay with him. I do feel that he was "put out" because I chose to shop around for DME's and machines. I took what I learned here (thanks, again!!) and put it to use. I wish I had known about this forum before having my two sleep studies. I would have done things differently with that too!!

When the sleep doctor from the lab, who I have never met, read my studies and sent them to my doctor, he just filled in the request and sent it back to the lab and they called me to pick up my machine. When I went in, it was a cheap machine, with none of the features that I wanted. I wasn't given a choice, so I left. I knew what my insurance would pay for and I had every intention of getting it! I then called several places and found one locally that was really helpful. No pressure, but lots of knowledge and support.

I wanted to do things the right way, by having the doctor re-write the script and didn't expect him to react like that. I felt like telling him to get a grip, he wasn't God, and I could quite easily go on line and get instructions on how to change the machine myself! I basically didn't want to put the DME in an awkward position because he was so helpful and I know I will be going back to him for future assistance & supplies. I have heard of a few sleep doctors in my area that are good, I just wasn't sure if I needed one or if my PCP could handle the apnea issues for me. I guess I found my answer!