Frustrated-very long rant please forgive me

[memapenguin]

I am so frustrated. Went to my GP today with high hopes of discussing my CPAP with him. I want to ask what I thought were a few sensible and relevant questions.

1. My original sleep study said my basal O2 sat was 95.4% with a low O2 sat of 73.8% and that time spent below 90% saturation was 28.5% of the study time. My titration study with the CPAP said my basal O2 was 92.5% with a low O2 sat of 88% and time below 90% saturation 9.1% of study time. My question was what was considered to be a low enough saturation over what period of time to justify nighttime oxygen. I was not asking for oxygen, I was asking for information as to what the criteria were as I was not sure exactly how worrisome my numbers were. My GP said there is no such thing as prescribing "nighttime" supplemental oxygen, that oxygen was only prescribed to patients with a walking O2 sat of <86% over at least a 30 min period. At that point oxygen was prescribed to be used at all/anytime and again he said there was no such thing as nighttime only oxygen. I reminded him that he had also diagnosed me with restrictive airway disease(type unknown still fighting the insurance over a CAT scan of my chest so he can determine type) and that I only had 60% lung function and that the most common treatment for restrictive airway disease was supplemental oxygen. So I asked with the low nighttime saturation's as well as the restrictive airway disease how do we determine what my O2 saturation was and should it be something that we are monitoring. His response was "oh, will I guess if you are concerned about you O2 level I can send the nurse in to check it later". WTF! I may be wrong but shouldn't that be something hes was already checking? I asked isn't the thing that the nurse puts on my finger when getting my weight, temp, BP etc and pulse/oxygen monitor? He said yes but they only record the pulse in the chart never the oxygen level. FYI the nurse never did check my O2 level as she was to busy screaming at me....I will explain below.

2. According to my titration results the sleep lab recommended a 14CMH2O to be verified with APAP, my machine (an APAP) arrived set as a CPAP set to 14CMH2O. So I asked the GP if we were going to be verifying the settings with the APAP? His response was if I wanted the settings changed just call the DME. I explained that the DME would not change the settings without a script from him. His response was "Just tell my nurse what you want and she will do it, if I have to spend time on paperwork I would never see any patients" I said that I wanted his opinion about whether after the verification with APAP(which I thought he agreed to) which would be better for me to use the machine as a APAP or a CPAP? And he said "I don't really know that much about those machines, I just prescribe them if the sleep center says you need one, and prescribe whatever setting they tell me". WTF!!! He said if I had more questions he could refer me to a pulmonologist, so I said please make that referral. He leaves the room comes back with a sheet of paper looks me in the eye and says "So why do you want this referral? The pulmonologist will want to know why you want to see him?" I am thinking "really!really! WTF!" I responded I would like to know why my PFT showed 60% lung function, what type of restrictive airway disease do I have and what are we going to do to treat it, and that have questions about my CPAP therapy that my GP is unable to answer. (The "duh!" while loud in my head was not spoken out loud).

3. My final question was whether the strange fluttering(like a bird trying to flap its wings while you are holding it) in my chest that started after night 2 on CPAP was a normal side effect to the CPAP or something else. He never answered that question per se, he just said that he was referring me to a Cardiologist for a 24hr halter monitor and that there was a small chance that they might decide to do a 30 day halter monitor. If the 24hr halter monitor was normal "we wont worry about this anymore. Now if you are done asking me questions I have other patients to see". And not even waiting for an answer he left the room. I was dumfounded. I loved the GP. I have been seeing him since May. After 20 yrs of no medical care I walked into his office with a page long list of "issues", he sat with me and went over the list 1 by 1, prioritized the list and started running various tests. He has always gone over the results with me and never seemed to have any issues answering my questions until today.

A few minutes later his nurse came in and said she did not understand what I wanted from them for the DME. I said that I wanted a script sent to the to change the setting on my machine to APAP to verify my settings per the sleep study recommendations. She told me that no I did not need that done, the reason for the second sleep study night was to find my setting and that they had and there was no reason to use the APAP functions. I tried to explain to her that it is possible that the setting that one night might not be appropriate every night, and that is why the sleep center put "confirm settings with APAP " under recommendations. She started to yell at me that I didn't know what I was talking about and the APAP was only used to determine settings for people who could not sleep during the studies, and that after all machines were switched to CPAP mode and they were never ever used continuously in APAP mode. After asking that she please lower her voice as I was right in front of her, I made the mistake of asking if she was not going to prescribe the APAP, which I thought the doc had agreed to, was she going to still do the one for the Smart Link. Big mistake she went off again. Why do you need that? It is not for you. The only people that need that extra data are the doctors, and she wasn't going to be reviewing my data and I had no reason to have that information. If the pulmonologist wanted that info it was up to him, she was not writing a prescription for information that I did not need access to and wouldn't understand anyway. She said that if I was that interested in the sleep data I would have to call the DME and pay for it out of my own pocket, she wasn't going to defraud the insurance by writing a script for information that I had absolutely no need to access. All that I need to do is put the machine on every night and let it do its job. Now go home we are done here. Needless to say she never did check my O2 level.

And when the receptionist asked when I was to come back, I was so flustered by the way the GP and nurse had acted I was clueless. I said they referring me to a pulmonologist, a cardiologist (for the halter monitoring) and that we were still waiting for the neurology appointment that they had requested last month due to worsening weakness I have on the left side of body. So she asked the nurse who I heard respond "3 months will be plenty soon enough to see her again". Prior to this appointment the GP has been seeing me monthly to go over test results and tick things off the my original list.

Sorry for the long rant but I just had to get this off my chest and none of my friends that I usually talk to use CPAP and they tell me when I try to discuss my experiences with my machine, the DME, or the GP that it is like I am speaking Greek. Thanks for having this place to let it out.

[Greg6657]

Rants are allowed .
Have you considered getting a new GP. If he is too busy to do his job (which is your health) then why should you pay him. As for his nurse I would have lit her up, (I get testy real easy when someone that has no clue decides I'm a idiot)
Im sure there are people on here that can and will answer your questions about your O2 questions. Talk to your cardialigist and expain the way you were treated at your GP and see if he cant help you get answers. If you dont get any response then keep looking till you get the help and questions in check.
Its your health and these people have convinced me that the only one that matters is me, so take charge of your health and stand your ground.

[Xney]

That's a pretty horrible experience all-around.

Is there a possibility of being seen by a sleep specialist? Pulmonologist with sleep focus? Otherwise I would switch GPs if you can.

[zoocrewphoto]

I would not go back there. Clearly, they are too busy to care about you. And they don't care about data. They probably assume the sleep study is 100% perfect, and then all you do is plug in the machine. Magic completed.

If only it were that easy.

You should be able to get directions here for viewing your own data, changing the settings to apap, etc. I'm not familiar with your machine, but others are.

Thankfully, the people here can help us when the doctors let us down.

[DiverCTHunter]

I just finished reading through your previous posts, and all I can say is WOW!

Would you be willing to share your location / insurance? Without knowing your country/state, I don't want to make generalizations.

If you're in the States, I'd definitely fire off a letter to the local attorney general's office and CC your insurance copy and the GP under those circumstances. Make sure to make a HIPAA records request before you do it, so the RN / BOM / whoever can't "modify" your records when they respond to the insurance company.

[brucifer]

Time to get a new GP. Sometimes good relationships go bad. The nurse had a lot of nerve. You don't need those people.

[pats]

Time to get a new GP. Sometimes good relationships go bad. The nurse had a lot of nerve. You don't need those people.

Also get a specialist sleep doctor. I can understand a GP not knowing enough about xPAP to evaluate results etc., but the correct reaction is not to make arbitrary choices and ignore follow-up, but to refer the patient to a specialist. In the OP's case, given "60% lung function" I would want a pulmonologist who specializes in sleep breathing disorders.

[greatunclebill]

you have to ask yourself if you would trust this doctor and nurse with your life. afterall, your life is in their hands. the answer should be no. do nothing else now. the first thing you need to do today is find a new primary doctor get it switched over with your insurance and make an appointment. then go to the new doctors office today and fill out a records release request so the new doctor will have your records from the old one when you arrive. let the new doctor evaluate you and make all referrals to specialists. then when things start happening from the new doctor make some formal complaints about the old doctor and seperately about the nurse to all the appropriate agencies. don't forget to google the doctors name. there are many websites with info on doctors and forms where you can evaluate them. don't forget to name the nurse in the evaluations.

[memapenguin]

Please let me preface my next statement with this info...I do work, however my income is low enough that I qualify for Medicaid. Because my insurance is medicaid changing PCP will be next to impossible.....it took me 2 years to find this guy as most PCP in this area do not accept medicaid especially for new patients. I know that as a medicaid patient I will not get "bells & whistles" but I also know that if you do not ask the answer is always "No". I am also very aware that as a medicaid patient many people believe that I deserve only the lowest standard of medical care if not substandard care. I just have a very hard time accepting that fact and will often attempt to fight for the care I believe I deserve. I have worked my whole life, and am still working now so I have paid in to the very system that I am trying to use, not abuse but use. This is the second time in my life I have had to use the medicaid system, the first was 18 plus years ago when my 2 children were under 5. I worked very hard to get off the "system". And I was by the time my youngest had turned 5. I spent the next few years working jobs that while they paid the bills did not provide much in the way of benefits. I was able to scrimp and save, I worked my butt off to be able to start my own small bookkeeping business out of my home. Then the oil spill hit the gulf and within 6 months my business was slashed in half. Since we have had the recession and I have watched business after business fail due economy and many of those that have manged to stay in business by cutting expenses where they can so they have started doing their bookwork rather than paying my to do it. Sorry did not mean to go off on a tangent, but unfortunately the facts are that I will have to deal with this Dr and his nurse and hope that the specialists that they refer me to take up the slack.

[Todzo]

Please let me preface my next statement with this info...I do work, however my income is low enough that I qualify for Medicaid. Because my insurance is medicaid changing PCP will be next to impossible.....it took me 2 years to find this guy as most PCP in this area do not accept medicaid especially for new patients. I know that as a medicaid patient I will not get "bells & whistles" but I also know that if you do not ask the answer is always "No". I am also very aware that as a medicaid patient many people believe that I deserve only the lowest standard of medical care if not substandard care. I just have a very hard time accepting that fact and will often attempt to fight for the care I believe I deserve. I have worked my whole life, and am still working now so I have paid in to the very system that I am trying to use, not abuse but use. This is the second time in my life I have had to use the medicaid system, the first was 18 plus years ago when my 2 children were under 5. I worked very hard to get off the "system". And I was by the time my youngest had turned 5. I spent the next few years working jobs that while they paid the bills did not provide much in the way of benefits. I was able to scrimp and save, I worked my butt off to be able to start my own small bookkeeping business out of my home. Then the oil spill hit the gulf and within 6 months my business was slashed in half. Since we have had the recession and I have watched business after business fail due economy and many of those that have manged to stay in business by cutting expenses where they can so they have started doing their bookwork rather than paying my to do it. Sorry did not mean to go off on a tangent, but unfortunately the facts are that I will have to deal with this Dr and his nurse and hope that the specialists that they refer me to take up the slack.

Hi memapenguin,

So, for a time in our minds, lets fly above all this.

You live in an area hit by the oil spill, which was dealing with issues before that. Doctors in our nation are scarce. Probably more so where you live. So any poor doctor that lives in your area has a great challenge of having many more patients a day than would others.

So, your doctor is not the one two ask questions of. Something the last ten years of finding my severe OSA with extreme hypoxia, being a victim of assault and robbery for being poor and white, and getting medical care from shelter have taught me is that medical questions are mine to answer. The doctor has not the time nor the motivation, if I want answers (frankly, we need answers) I will have to get them myself. There are not and will not be enough PCPs - and specialists consider themselves off in the medical either cloud in terms of conversation with a mere mortal - so - need answers - gotta get them myself.

Your poor doctor and staff also deal with another awful thing. Medical insurance in America. What an awful mess. How can they get anything for anyone anytime? This is probably why we eventually will go Federal with medicine - it is too much of a profit temptation for those who would steal from the poor and needy - and so they do. Right now, it is simply an awful, horrible, mess. One they attempt to deal with every day.

Exacerbating this for you right now – I think - is likely the cognitive damage from untreated OSA – which – I do believe I have observed - makes one less able to be aware of the emotional state and actual needs of others. So they do not have the time to answer your questions or see your need – and you do not have awareness of their needs and limitations - - SO - - FRUSTRATION BIG TIME!!!

If I were you I would:

1. Resolve to find the answers to my medical questions myself. On my path to doing this I have found it helpful to help others answer their questions. Actually, that started on Linux forums. It sharpens your Internet search skills. It is a good thing to do since there are a lot of people out there who need answers too. And frankly, there is a reward for helping others – usually from places never considered.
2. Consider that some of what I need I will have to obtain myself. I did purchase Encore Viewer – but was super glad to see SleepyHead come along. Your current doctor and staff will not understand your need for data – no reason to go there with them – so – understand that you need this anyway and invest in your health. Even from shelter I found a way.
3. As I visited many doctors in the last several years I was in long lines – and – noticed that many people in those lines were a lot worse off than myself. So, my attitude changed about what few things I would ask for from my doctor. Medical care in America is in such a sorry state that ones expectations should be low. If it is so low that it is criminal, talk with your lawyer, not your Doctor. Good Doctors use with consideration, bad Doctors prosecute.
4. Consider that “confirm with APAP” may simply mean use of the CPAP (as set) with feeling results. If you think about what your Doctor is dealing with – it makes sense. So I let the Doctor deal with his awful reality – I myself have Encore Viewer, SleepyHead, a pulse oximeter, facilities to do nighttime recordings, etc...
5. To help overcome relational limitations in myself I would read (I am reading) “Words Can Change Your Brain: 12 Conversation Strategies to Build Trust, Resolve Conflict, and Increase Intimacy” by Andrew Newberg and Mark Robert Waldman. It is part of my preparation to work with doctors as well as new friends.

Have a great week!

Todzo

[brucifer]

Please let me preface my next statement with this info...I do work, however my income is low enough that I qualify for Medicaid. Because my insurance is medicaid changing PCP will be next to impossible.....it took me 2 years to find this guy as most PCP in this area do not accept medicaid especially for new patients. I know that as a medicaid patient I will not get "bells & whistles" but I also know that if you do not ask the answer is always "No". I am also very aware that as a medicaid patient many people believe that I deserve only the lowest standard of medical care if not substandard care. I just have a very hard time accepting that fact and will often attempt to fight for the care I believe I deserve. I have worked my whole life, and am still working now so I have paid in to the very system that I am trying to use, not abuse but use. This is the second time in my life I have had to use the medicaid system, the first was 18 plus years ago when my 2 children were under 5. I worked very hard to get off the "system". And I was by the time my youngest had turned 5. I spent the next few years working jobs that while they paid the bills did not provide much in the way of benefits. I was able to scrimp and save, I worked my butt off to be able to start my own small bookkeeping business out of my home. Then the oil spill hit the gulf and within 6 months my business was slashed in half. Since we have had the recession and I have watched business after business fail due economy and many of those that have manged to stay in business by cutting expenses where they can so they have started doing their bookwork rather than paying my to do it. Sorry did not mean to go off on a tangent, but unfortunately the facts are that I will have to deal with this Dr and his nurse and hope that the specialists that they refer me to take up the slack.

Medicaid or not, there is no reason why you should have to put up with such disrespect and indignation. It may have taken you two years to find that doctor, but it only takes a second to fire him. Trust me; that doctor and nurse are NOT your friends, and they are NOT looking out for your best interest. Do yourself a favor, and find a new doctor, even if it takes awhile. Seek and you shall find.

[chunkyfrog]

You should be able to download the providers manual for your machine--someone here has that site.
As for your oxygen levels; you need to get a recording pulse ox and whenever you have very scary low
numbers on it, visit the ER. Make sure they know the name of the doctor who has not sent you to a pulmonologist.
Don't act angry--just helpless. Milk it.