Went to my doctors about my diagnosis today....
And requested he write me a script for a CPAP machine so I could self-titrate (I was already diagnosed with moderate OSA at 19.6 AHI. The interp page was already signed by a board certified sleep doctor). He told me no. PREVIOUSLY, he stated that I needed to go an ENT to discuss "minimally invasive surgical options". Keep that in mind for later.
Anyways, sitting in his office, ask him why he won't let me self-titrate. His response: "If you set the incorrect pressure on a APAP machine, it could cause a pneumothorax (a collapse of the lung due to air entering the chest cavity, there are different variants or reasons that could cause this) and you would die. It would kill you." I sh*t you not. Those were his words.
Couple things wrong with this people, and keep this in mind because this is educational.
1. Don't let ANYONE, especially a medical professional, threaten you with a statement like this. There are plenty of ways he could have gone about this to let me know of the adverse consequences of "self-titrating". This was not it, and all it did was p*** me off immediately because
2. he lied. Do not let anyone tell you anything without first doing your research on all of your options. He expected me to let him do the heavy lifting, so when I came in properly armed with the knowledge, he lost footing. Please make sure you know your conditions, the things that might cause it, and the things they may cause. In this case, a pneumothorax being caused by air pressure exerted by any type of CPAP machine is BS (unless you have an underlying condition in which almost any type of exertion of the lungs could cause a collapse) and I wasn't biting.
The conversation went downhill from here. I remained respectful and let him stumble over his words, and when he offered a reason, I gave him an answer as to why, again, it was BS. To give you an idea, I'll share some snippets of what went on below:
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Doc: "Only certified specialists should change the settings."
Me: "There isn't anything against a patient changing their own settings in an xPAP machine, law or otherwise. There never has been." (What is illegal is a DME or doctor telling you how to use your device, or selling you a device without a prescription. In fact, changing your own settings in this sense is akin to how diabetics change their insulin dosages within reason. Their medication/therapy is what's keeping them alive, much to the same degree with SA patients. All of this is simple research. It's mentioned on this board alone, multiple times.)
Doc: "You can't just do self-titration. That's like me saying "you have pneumonia", then saying "well heres some antibiotics. There you go.""
Me: "I'm not sure what this has to do with CPAP and self-titration. Taking the wrong antibiotics would possibly kill me. Changing my pressure settings would just make me uncomfortable, or not solve my SA problems/cause CA problems which can be fixed the next time I see my therapy reports."
Doc: "It's like open heart surgery." (I'm not kidding, he fucking said that. I'm sighing at this point because it's obvious he doesn't know anything about this field. He even says "I'm not trained for this" later in our discussion.)
Me: "Well, not really, cause I'm not cutting open my own chest to change a few settings."
Doc: "It causes high blood pressure."
Me: "Really? It does?" (I was actually surprised because this seemed plausible despite all he's said earlier.)
Doc: "Yes. Forcing too much air into your lung can cause stress and stretch them excessively." (back to the lung thing)
Me: "So manufacturers are creating devices that could inadvertently pop a user's lungs based on their pressure setting? Is that what you mean?" (now this was just me being petty. There are tons of drugs, equipment and other objects that were meant for one thing, but when abused, could be used for another purpose or even harm the user. This doesn't seem to be the case with CPAP machines. I've never seen a report or litigation purposing harmful lung side effects with the use of CPAP machines. Please feel free to show me some if you have any.)
Doc: "You are the first to ask me this in 34 years." "I'm the doctor." "If the judge in the malpractice suit asks me why I let the patient order me around, what do you think the jury would say"?
Doc: "They want you to go back for another sleep study. I honestly don't know why they didn't do a split night. I always order split studies."
Me: "The manual titration isn't necessary. I can do that at home which is why I'm asking for the script."
Doc: "Well obviously they require more information. They wouldnt' have asked if it wasn't necessary."
Me: "Doctor, do you know what a manual titration is and what they do during it?"
Doc: "I, well, uh, no. I don't know." (I swear to god I'm telling the truth. I wish I had recorded our conversation.*)
Me: "One diagnoses, the other finds the pressure needed to treat. That's all. I'm already diagnosed. It says so on the interp page. Literally."
Doc: "Obviously not. If they want you to go in again, they must be missing the information for a proper diagnosis."
Me: "So even if I do this second study, you're still going to send me to an ENT?"
Doc: "No, once they give me the information I need, I'll give you a script." (What's the difference? A board certified sleep specialist signed off on my interpretation page, literally diagnosing me with OSA. You literally have ALL you need right there on that paper.)
-----
Look, you probably get my point. I'm not trying to bash the doctor. In fact, I can understand his hesitation. He's being asked by someone he doesn't expect to know anything about the condition they're suffering from to do something he has no knowledge. He's been in the field a long time, and probably doesn't expect a patient to ask HIM to do anything. He's used to giving out information and not receiving it. And to be fair, he stated that if I could prove using medical journals from two sources, New England Medical Research and some other place I don't remember, that it was okay and safe for patients to self-titrate, that he would totally comply (personally, I don't feel like I can take him on his word for this, and if I can't trust my doctor, I don't want him medicating me). What the issue is here is that instead of admitting that he doesn't know, he lied, and continued to lie, then tried to pull up sh**ty reasonings without proper evidence, but expects me to just listen to him with open ears. To hell with that.
I just want people to know that you need to do research on your condition. Don't walk all over your doctor who is trying to help you (for one reason or another), but don't take things at face value either.
ANYWHO, tl;dr: I'm still without a CPAP machine, and am now currently looking for a new doctor, someone who will listen to reason and hopefully understand that I'm not going to sit by idly, waiting for someone else to carry my treatment to me on a silver platter.
*PS: While I am not, by any means suggesting you do this, I live in a "one-party consent" state where it's legal for me to record conversations so long as I consent to it, even without the other person's knowledge. In cases like these, I wish I had known before hand so I could record said conversation for future reference. My memory isn't what it should be for as young as I am, and doing this helps very much so. From now on, I may record future situations such as this (hopefully with a doctor's approval).
PSS: I posted this on the other apnea board, so I apologize if this is your second time seeing it, however, I want people to see this. People need to know that just because your doctor says it doesn't mean that you need to take it at face value. You have the right to any and all information regarding procedures, treatments, cures, therapies and the such when it comes to your health. And THAT's law.
Anyways, sitting in his office, ask him why he won't let me self-titrate. His response: "If you set the incorrect pressure on a APAP machine, it could cause a pneumothorax (a collapse of the lung due to air entering the chest cavity, there are different variants or reasons that could cause this) and you would die. It would kill you." I sh*t you not. Those were his words.
Couple things wrong with this people, and keep this in mind because this is educational.
1. Don't let ANYONE, especially a medical professional, threaten you with a statement like this. There are plenty of ways he could have gone about this to let me know of the adverse consequences of "self-titrating". This was not it, and all it did was p*** me off immediately because
2. he lied. Do not let anyone tell you anything without first doing your research on all of your options. He expected me to let him do the heavy lifting, so when I came in properly armed with the knowledge, he lost footing. Please make sure you know your conditions, the things that might cause it, and the things they may cause. In this case, a pneumothorax being caused by air pressure exerted by any type of CPAP machine is BS (unless you have an underlying condition in which almost any type of exertion of the lungs could cause a collapse) and I wasn't biting.
The conversation went downhill from here. I remained respectful and let him stumble over his words, and when he offered a reason, I gave him an answer as to why, again, it was BS. To give you an idea, I'll share some snippets of what went on below:
-------
Doc: "Only certified specialists should change the settings."
Me: "There isn't anything against a patient changing their own settings in an xPAP machine, law or otherwise. There never has been." (What is illegal is a DME or doctor telling you how to use your device, or selling you a device without a prescription. In fact, changing your own settings in this sense is akin to how diabetics change their insulin dosages within reason. Their medication/therapy is what's keeping them alive, much to the same degree with SA patients. All of this is simple research. It's mentioned on this board alone, multiple times.)
Doc: "You can't just do self-titration. That's like me saying "you have pneumonia", then saying "well heres some antibiotics. There you go.""
Me: "I'm not sure what this has to do with CPAP and self-titration. Taking the wrong antibiotics would possibly kill me. Changing my pressure settings would just make me uncomfortable, or not solve my SA problems/cause CA problems which can be fixed the next time I see my therapy reports."
Doc: "It's like open heart surgery." (I'm not kidding, he fucking said that. I'm sighing at this point because it's obvious he doesn't know anything about this field. He even says "I'm not trained for this" later in our discussion.)
Me: "Well, not really, cause I'm not cutting open my own chest to change a few settings."
Doc: "It causes high blood pressure."
Me: "Really? It does?" (I was actually surprised because this seemed plausible despite all he's said earlier.)
Doc: "Yes. Forcing too much air into your lung can cause stress and stretch them excessively." (back to the lung thing)
Me: "So manufacturers are creating devices that could inadvertently pop a user's lungs based on their pressure setting? Is that what you mean?" (now this was just me being petty. There are tons of drugs, equipment and other objects that were meant for one thing, but when abused, could be used for another purpose or even harm the user. This doesn't seem to be the case with CPAP machines. I've never seen a report or litigation purposing harmful lung side effects with the use of CPAP machines. Please feel free to show me some if you have any.)
Doc: "You are the first to ask me this in 34 years." "I'm the doctor." "If the judge in the malpractice suit asks me why I let the patient order me around, what do you think the jury would say"?
Doc: "They want you to go back for another sleep study. I honestly don't know why they didn't do a split night. I always order split studies."
Me: "The manual titration isn't necessary. I can do that at home which is why I'm asking for the script."
Doc: "Well obviously they require more information. They wouldnt' have asked if it wasn't necessary."
Me: "Doctor, do you know what a manual titration is and what they do during it?"
Doc: "I, well, uh, no. I don't know." (I swear to god I'm telling the truth. I wish I had recorded our conversation.*)
Me: "One diagnoses, the other finds the pressure needed to treat. That's all. I'm already diagnosed. It says so on the interp page. Literally."
Doc: "Obviously not. If they want you to go in again, they must be missing the information for a proper diagnosis."
Me: "So even if I do this second study, you're still going to send me to an ENT?"
Doc: "No, once they give me the information I need, I'll give you a script." (What's the difference? A board certified sleep specialist signed off on my interpretation page, literally diagnosing me with OSA. You literally have ALL you need right there on that paper.)
-----
Look, you probably get my point. I'm not trying to bash the doctor. In fact, I can understand his hesitation. He's being asked by someone he doesn't expect to know anything about the condition they're suffering from to do something he has no knowledge. He's been in the field a long time, and probably doesn't expect a patient to ask HIM to do anything. He's used to giving out information and not receiving it. And to be fair, he stated that if I could prove using medical journals from two sources, New England Medical Research and some other place I don't remember, that it was okay and safe for patients to self-titrate, that he would totally comply (personally, I don't feel like I can take him on his word for this, and if I can't trust my doctor, I don't want him medicating me). What the issue is here is that instead of admitting that he doesn't know, he lied, and continued to lie, then tried to pull up sh**ty reasonings without proper evidence, but expects me to just listen to him with open ears. To hell with that.
I just want people to know that you need to do research on your condition. Don't walk all over your doctor who is trying to help you (for one reason or another), but don't take things at face value either.
ANYWHO, tl;dr: I'm still without a CPAP machine, and am now currently looking for a new doctor, someone who will listen to reason and hopefully understand that I'm not going to sit by idly, waiting for someone else to carry my treatment to me on a silver platter.
*PS: While I am not, by any means suggesting you do this, I live in a "one-party consent" state where it's legal for me to record conversations so long as I consent to it, even without the other person's knowledge. In cases like these, I wish I had known before hand so I could record said conversation for future reference. My memory isn't what it should be for as young as I am, and doing this helps very much so. From now on, I may record future situations such as this (hopefully with a doctor's approval).
PSS: I posted this on the other apnea board, so I apologize if this is your second time seeing it, however, I want people to see this. People need to know that just because your doctor says it doesn't mean that you need to take it at face value. You have the right to any and all information regarding procedures, treatments, cures, therapies and the such when it comes to your health. And THAT's law.
