cancelled a Dr. appt....

[meg321]

I just cancelled my pulmonologist appt. and it makes me so nervous to do that but if I went in to see them they would be very unhappy with me and yell at me, at least the Dr. does.  

I have quit using my c-pap machine because I hate it and it doesn't make me feel any better...I dread even thinking about using it.

Has anyone else had one and stopped using it ?

hugs, meg

[meg321]

Just wanted to add that my nurse practioner that works with my MS Dr. is going to get me into see one of the pulmonoligists at UCSF ..this makes me happy. There are not many of them around, at least good ones.

meg

[Lulu54]

Meg , the term nasal pillow Is somewhat deceptive. It is kind of like a cannula but with puffy things that go in your nostrils.  
Check out some pictures at
http://www.cpap.com/cpap-masks/nasal-pillow-cpap-mask.php

[meg321]

also, my air pressure has been adjusted.....

@Lu. how does the nasal pillow work ?  

hugs, meg

[meg321]

Actually, I would not stop just because of him...its mostly because I don't have a mask that I like.  I have been using one since May 2011.

I have had 3 masks and the last one is a full face mask, I finally learned to use it on my own.  And I have seen every mask they offer and did my own research on them.

The last time I went in to get one, it was my second visit and they had fitted me to one but had lost all the info including the mask I wanted.  So I had to just pick one out myself.  They are no help whatsoever.  

I tried to quit but my Dr. only uses the one company, its Apria.

When I had pneumonia my mask was not working and they don't send someone out to help and I couldn't send my husband either.  My husband uses Apria for his oxygen and they always come to the house for him.

I did talk to my Drs. nurse practioner and told her I would think about what I want to do and she alll I had to do is ask her.  Sounds good but I have been through this before.

Also talked to my MS Dr. about it....I am not sure if UCSF has a pumonoligist on staff.

You have talked me into trying again..but my brain works slowly....what a surprise, huh?

keep talking...meg

[Lulu54]

Meg, I use a cpap and it does take time to get used to.  There are several different types of masks and even the nasal pillows that you can use - don't give up on finding the right one for you.  And it also might require an adjustment of the air pressure.  Is your machine an older model or did you get it more recently?

I can understand the frustration of doctors who have patients who are non-compliant but that doesn't entitle them to be bullies, either.  The docs are trying their best to help us, but we also have to be willing to help ourselves by following their recommendations.    You might consider finding a different pulmonoligist and starting over.

Whatever you do, don't let your health suffer because you don't want to face this doc.

hugs, L

[rendean]

Meg,
I 'm sorry your pulmonoloigist doesn't treat you with respect and yells at you. Perhaps it's time to change doctors. In the meantime, there a GREAT variety of  C-PAP machines. /they come in all shapes and sizes. I  saw them firsthand when I went for my sleep study.

If the one you have is uncomfortable, look into another type or fit. With COPD it is important to use one, just as it is important that your doctor be professional.

Best,
Ren

[Audrey_M]

Meg:

Like Jane, I can only talk about my mom. She had COPD and was on oxygen. She should have been on it 24/7, but refused to do so. I don't know if c-pap was ever discussed with her, but I do know that she refused it when she was hospitalized.

Family and friends were upset with her stubbornness about things, but ultimately it was her choice. She did acknowledge that she should be on oxygen 24/7, but that it was not an option she would consider.

We all have decisions to make in terms of our health and treatment. A doctor should not be "yelling" at you, but listening to your concerns and then explaining the potential consequences of your decision if there are no alternatives to the c-pap or making it more comfortable to you. It is then up to you to decide.

Hopefully someone who has been in your situation will respond. Meg and I are both outsiders looking in. Maybe someone else came up with a creative solution with their doctor.

[Ricobord]

I have a relative with the same issue.  This article mentions some alternatives that might help.  Maybe you can ask around locally about a different doc who won't lecture you and will help you find a workable alternative.

http://www.livestrong.com/article/239983-alternatives-to-a-cpap-machine/

I had a pulmonologist who lectured me to stop doing research on the internet to find out why I had trouble breathing, even though she couldn't diagnose me. Maybe pulmonologists spend a lot of time lecturing patients who smoke and it just becomes the modus operandi for them.

[JaneK1975]

Hi Meg. My mom has one but won't use it. As the daughter, of course I hate that she refuses it when it might help her. But she says she can't sleep with it on, so it defeats the entire purpose. I have told her that if she can't use it, she should talk to her doc about it. But she feels the same way you do and hasn't gone back.

I hope others here have experience to share, as I am interested to read any responses to your question.