Disagreement with doctor...

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
library lady
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Re: Disagreement with doctor...

Post by library lady » Mon Mar 02, 2015 7:45 pm

FlyingMoose wrote:
LSAT wrote:Based on the information you listed, I think I would set pressures at 9 minimum and 15 maximum is your machine is set on Auto. If it is set on CPAP I would go with fixed pressure of 12. You should learn to change your own pressures.
It was set on automatic 10-16, now 8-16. I can change it but it will show up when the doctor looks at the data.
I changed my pressure after 2.5 months, and I took the machine in when I saw the sleep doc in January and he didn't mention the change... but there were printed results from the SD card right on top of the desk. January was my eleventh month since starting cpap.

As for the feeling that you can't breathe, or that you're not getting enough air, that is very common in the beginning. It's not a natural thing, this mask and machine, and your system needs time to adapt. I had a slight problem with that myself, but adapted to it before I changed my pressure, which was for another issue I was having.

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footballgirl13
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Re: Disagreement with doctor...

Post by footballgirl13 » Mon Mar 02, 2015 7:59 pm

BlackSpinner wrote:
FlyingMoose wrote:
bwexler wrote:Who cares if he sees that your changes work better than his.
I'm not concerned about that, I'm concerned that she'll be upset with me for changing the prescription without her permission.
It is air. Unlike a diabetic who can control their very dangerous insulin levels based on their readings, you are not allowed to adjust your AIR?
I agree with BlackSpinner. I read somewhere in 2012/2013 that the RT can't really "do" anything if you do change your own pressure. It is AMA. Against Medical Advice, but I think it mostly has to do with liability and the doctors, nurses and the RT's don't want YOU to blame THEM if YOU change your own pressure. They want YOU to go to them to change it - even if you need to change the pressure every week (like I did in 2013) to find the right pressure. I guess they figure they know what they are doing. My experience? xpap users know what they are doing more than any RT, Nurse or doctor. RT's, nurses and doctors don't know much about xpap machines, pressures, the issues that come with using xpap - unless they USE IT themselves.

I was told it was "illegal" to change my own pressure by an RT back in 2012. I said "well I had to change my pressure since it was set at 19 and the DME didn't give me a proper fitting mask during my sleep study. I was given a med size mask and I had leaks everyplace. So I had to change my own pressure down to 8 or 9. I couldn't breath out against 19. And I'm the one using the machine, not you". She didn't say anything after that.

I read also that the RT's and doctors really can't "enforce" the "rule" or the "law". All they can say is it is AMA - and I guess they can write it down in your chart that you did something AMA. What are they going to do? Arrest you for changing the pressure you need? I was tested for 15/11 and my machine is showing an AHI of 7.5 or 7.9 so I think I need a higher pressure. My doctor has never said much to me when I tell them I change my own pressure. The ones that get all upset is the RT's and they give me that look like I killed someone.

Doctors, Nurses and RT's all have noses - just like they have opinions and If I was to ask an opinion of someone, I'd rather ask another xpap user. If you think you need more pressure, then go ahead a give it a try. I went from 7 to 7.5 in one week and up-ed my CPAP pressure to 8.5 a week after that change. I noticed very little change from 7 to 8.5. I was scared to up it to 12 so I "guessed" my final pressure was 10. This was 2 weeks before I had my sleep study in the sleep lab in Dec 14. That is when I found out I needed 15/11.

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palerider
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Re: Disagreement with doctor...

Post by palerider » Mon Mar 02, 2015 10:35 pm

FlyingMoose wrote:Even if it can calculate and correct the pressure for a given flow rate, with the higher pressures the impeller must spin faster and change speeds more quickly, so there is more lag associated with its momentum. With the slimline, it feels like it's not keeping up when I inhale.
given that it can modulate it's speed at a 4hz rate to generate the FOT flow to determine what kind of apnea you're having, I'm willing to bet that it can keep up with your half hz or less breathing rate.

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archangle
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Re: Disagreement with doctor...

Post by archangle » Mon Mar 02, 2015 11:05 pm

palerider wrote:
FlyingMoose wrote:Even if it can calculate and correct the pressure for a given flow rate, with the higher pressures the impeller must spin faster and change speeds more quickly, so there is more lag associated with its momentum. With the slimline, it feels like it's not keeping up when I inhale.
given that it can modulate it's speed at a 4hz rate to generate the FOT flow to determine what kind of apnea you're having, I'm willing to bet that it can keep up with your half hz or less breathing rate.
I speculate the wrong hose setting makes it more difficult to calculate the pressure at the mask, especially short term, and it may be a little "behind" and regulate pressure a little less well as you inhale and exhale, and switch IPAP/EPAP. It might make FOT or pressure pulses a little less accurate in terms of detecting CA. I doubt it makes a big difference.

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Re: Disagreement with doctor...

Post by VPAP » Wed Mar 04, 2015 11:17 am

You know, a lot of Drs. will take control of their patient's pressures. In other words, they will refuse to allow their patients to have anything to do with their pressure changes on their PAP therapy device. THIS IS WRONG! As the owner of a PAP THERAPY DEVICE, it is YOUR ABSOLUTE RIGHT, YOUR DUTY, I BELIEVE, TO KNOW HOW TO CHANGE YOUR OWN PAP THERAPY DEVICE'S PRESSURES, AND NOT ONLY THAT, TO DO SO, IF THERE IS THE SUSPECTED NEED. Your Dr. is from what I have seen, one of those sad cases where they have the opinion that they should change the patient's settings based upon what they think, AND, that the patient, should allow the Dr. to decide whether ANY changes are going to be made. My opinion in this regard? WRONG WRONG WRONG WRONG WRONG WRONG WRONG WRONG WRONG!! It just makes me sick when Patients, the ones who own, and are connected to the equipment, EVERY SINGLE NIGHT, THE ones who have to deal with the effects of the pap pressures, THE ONES WHO are using this therapy to HELP GET THEIR BETTER NIGHT'S SLEEP, have to listen to this droaning about how, their PAP machine is set on a pressure that was titrated in the lab, and this is the pressure that they require, and it is not to be changed. It just makes me SICK, when if the Dr. does decide he might like to Investigate a PAP Patient's PAP pressures, every single time, they think it needs to be changed, the Patient has to go spend the night in the PSG laboratory, to be RE-TITRATED! It is your machine. If you feel like you are not getting enough air, THEN, If you want to experiment with your own PAP pressures, It is your RIGHT. IT IS SOMETHING, YOU HAD BETTER BE DOING YOURSELF! You are responsible in my opinion for how you feel. your Dr. Most likely has never had to deal with the diagnosis of Sleep Apnea, or other disorders that qualify them for PAP therapy. So, they HAVE NO IDEA, what the patient is feeling. IF YOUR DR. DOES NOT LIKE IT IF YOU CHANGE YOUR PRESSURES, AND HE GETS UPSET, WELL, THEN, ITS TIME, that you think about finding another Sleep/Respiratory Physician, because, this Dr. is taking TOO MUCH, control. And if you get the familiar warning about how Changing your own PAP pressures is ILLEGAL, Then, You just need to tell the poor lost soul, TO SHUT UP! It is NOT Illegal in the slightest regards. I honestly change my PAP pressures every single day. EVERY DAY! This is because, I know that It is MY RIGHT, to change my pressures on my VPAP machine. So, You have EVERY RIGHT, to change your pressures. It will not effect your Medical Ensurance by the slightest bit. I really hope, and I pray, that things are able to be solved. I am here to support you ANY TIME, that you need support. I know what it is like to feel like you are not getting enough air. I have felt it HUNDREDS of times in my life. GOD BLESS!

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chunkyfrog
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Re: Disagreement with doctor...

Post by chunkyfrog » Wed Mar 04, 2015 11:29 am

It wasn't that long ago that doctors were bleeding patients to release "humours",
and had the power of life and death, with no requirement to consult patient or family, or answer to the law.
We want to believe our doctors have answered a "calling" to serve mankind,
but there are so many other reasons to study medicine--the money, power, homicidal urges,
convenient parking; small wonder too many just "call it in".

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palerider
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Re: Disagreement with doctor...

Post by palerider » Wed Mar 04, 2015 1:08 pm

VPAP wrote:blah blah blah yammer yammer yammer froth froth froth gibber gibber gibber
par·a·graph
ˈperəˌɡraf/
noun
noun: paragraph; plural noun: paragraphs

1.
a distinct section of a piece of writing, usually dealing with a single theme and indicated by a new line, indentation, or numbering.
synonyms: section, subdivision, part, subsection, division, portion, segment, passage More
"the concluding paragraph"
report, article, item, sidebar, piece, write-up, mention
"a paragraph in the newspaper"

verb
verb: paragraph; 3rd person present: paragraphs; past tense: paragraphed; past participle: paragraphed; gerund or present participle: paragraphing

1.
arrange (a piece of writing) in paragraphs.

Origin
late 15th century: from French paragraphe, via medieval Latin from Greek paragraphos ‘short stroke marking a break in sense,’ from para- ‘beside’ + graphein ‘write.’

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archangle
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Re: Disagreement with doctor...

Post by archangle » Wed Mar 04, 2015 4:43 pm

VPAP wrote:You know, a lot of Drs. will ...
Paragraphs, please.

Image

We (and the doctors) need to realize that a doctor is a trained and certified person, he's not a god. He's not even endowed by God with divine wisdom and powers.

However, we also need to realize that the doctor probably does know some things we don't know and has experience we don't.

Don't assume the doctor is wrong just because you don't like the answer, you don't understand it, or you read something different on the internet, or hear it from someone on the TV.

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sc0ttt
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Re: Disagreement with doctor...

Post by sc0ttt » Wed Mar 04, 2015 5:16 pm

chunkyfrog wrote:It wasn't that long ago that doctors were bleeding patients to release "humours",
Bloodletting ceased to be popular at least 200 years ago - and it was frequently done by barbers... not really fair to hang that on anyone currently in the medical field.

The fact is that half of all patients are of below average intelligence and doctors have to deal with a lot of stupid and stubborn people - some of whom could probably figure out a way to kill themselves with a CPAP. There are lots of good doctors though, who can spot the intelligent, engaged patients after the introductory chat.

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Last edited by sc0ttt on Wed Mar 04, 2015 5:44 pm, edited 1 time in total.

VPAP
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Re: Disagreement with doctor...

Post by VPAP » Wed Mar 04, 2015 5:35 pm

My Dr. has given me permission to fully control my VPAP settings. Being that I know the Respiratory field, and have studied it for years, studying subjects from Oxygen Therapy to High Frequency Oscillatory Ventilation, to the Administration of Inhailed Nitric Oxide, and Heliox! I have been around this equipment my whole entire life, and so I essentially know it by heart as some might, and have said Numerous times to me. I asked numerous questions in regards to the results of my PSG during, and afterwards. I think that patients should be asking these questions, like What was my AHI? When were my Apneas and when were my Hypopneas occuring during the PSG, and in what position? What were my settings on my PAP therapy titration, and when were they achieved during the Titration, and also, at which time did you have to switch from the CPAP mode, to BiLevel Mode? Oh, and when you switched me to BiLevel S/T mode, what was my Respiratory rate, and Inspiratory time, and also, what did you set my Rise time, Sensitivity, and Expiratory Termination? What was my Oxygen Desaturation Index, and what was my lowest oxygen saturation? It is very important that Patients should be asking these things when they come face to face with the Polysomnographic Evaluation.

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