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Let me add this, you will need to increase your complaint skills. This path will try your patience regardless, but more effective complaints move you down the tracks faster.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Thanks for the "listen to my complaint baseball bat" SarcasticDave94, I really need that. I'm a pushover. I don't argue with the doctor, I just accept what he says and deal with it. However, this is basically life or death for me so I'm determined to stand my ground and put it all out there this time. I'm going in there determined.
You also have information you didn't have before to argue that the ST is not event the manufacturer's choice of therapy for you. I'm sure you can move the ball forward, and if not, new doctor. Understanding complex and central apnea and effective therapy methods is much farther down the road than you were before.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
I just got back from my appointment, it didn't go well at all. I explained to him how the first week on ST Mode I was experiencing very troubling side effects and I switched it over to CPAP mode. He was upset that I changed the settings myself. Almost like that had never happened before. He asked how I knew how to do that, I said it's in the manual. He said it could be a compliance issue and if I did it anymore that I can't be his patient. The only compliance issue I was ever made aware of was usage, but he said it's basically changing the prescription. I told him I'm fighting for my life, I think he felt that hyperbolic.
He said since I changed the mode and pressure that the current data was useless because you can't really judge it because its different modes and pressures. I reiterated that the machine was not working for me. It's been almost a month now! After looking at some printouts, he said let's try 11. I said I've already done 10, 11, 12, 13, 14, 15, 16, 17.. it's not working for me.
I told him I feel like I'm dying, he asked if I had any fatigue, I looked him dead in the eyes and said that's all I have. I've gained 7 pounds this month, WTF!? He asked me what I want to do and I said switch to ASV. At that point, he inquired about my expertise and I explained I've done a great deal of research, my dad has a resmed and the sleep study already showed that this machine can not treat my complex apnea properly.
"I want to switch to ASV" - "That's what you want?" - "YES"
"Well, let's stick with this one for 2 weeks. Do not change any settings and we'll have a follow up in 2 weeks." I think he could tell that I'm quite miserable. Hopefully 2 weeks from now when he see's things haven't improved that he will switch me. He's letting me stay off ST and continue with CPAP effectively rendering his initial prescription rubbish. I told him I feel worse now than before I even started. He assured me, I am not dying.
He gave me detailed printouts of my last 7 days and a in depth summary of the last month.
Ask him what his experience and expertise is in treating complex and central apnea patients. While he thinks he threatened you with "you can't be my patient', the appropriate response should be, "I may not want to be your patient unless you can help." Two weeks. Give it 4 days and call him with your results. It's time to move on. If it doesn't work in 4 days, it won't change.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
I would love to do that but he is very close to where I live. The convenience of him is worth waiting. I dont have the energy to make the drive to the next closest guy, let alone jump thru hurdles with my insurance company. This past week has been more of the same, still extreme tiredness and fatigue, etc. The only data I have access to is DreamMapper by Phillips which doesn't give much at all.
It shows my AHI is between 4-8.
Clear Airway Apneas: 10-20 (per 6-8 hours)
Obstructive Apneas: 10-20 (per 6-8 hours)
Hypopneas 15-25 (per 6-8 hours)
I wish Oscar could read this data. All it will show is the flow rate, insp and exp time. I attached one, it looks like hieroglyphics to me.
I had my 2-week check up with my sleep doctor, he did not switch me to an ASV machine. He changed the pressure from 13 to 14. During those 2 weeks my AHI ranged from 5-10. My Centrals and Obstructives were around 1-2 each per hour. He said since they were low and most of my events were hypopneas that we are doing good and that my goal should be to get it down to 4. During the few days since my appointment, my centrals, obstructives and hypopneas have decreased, my AHI has been between 3-5. Everything looks as though it's getting better, however I do not feel better at all. I still wake up with bad headaches and zero energy and never feeling rested. He gave me some detailed printouts that I am attaching. If you still feel I would do better with an ASV machine I would like help drafting an e-mail to him. One with logical information on why I should be switched to an ASV, one that a reasonable doctor could not deny.
I did find another doctor in the area but his office was wiped out by the tornado that came through a few days ago so this is my only option. If I do need ASV and he does not write a script for it, I will just pay cash for it. Although the cash will be coming from my tax refund and will take all of it and it's literally all I have but I'm currently unable to work so I've got to find a way to get better. I just feel like this is not working but my numbers seem to be getting better so I'm confused.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
There's no other doctor, either he prescribes it for me or I just buy the machine with cash. I'm just hoping I can get him to so it goes through my insurance.
I assume you know Suppier #2 usually has some good deals on the Resmed Aircurve 10 ASV. I have also used SearchTempest to search Craigslist over a wide area. Offerup, Facebook Marketplace and DotMed are marketplaces that often have ASV machines.
I'd like to see you have better information, and there is a beta version of OSCAR that can accurately read the information from your Dreamstation ST. Please ask Bonjour for access to the Oscar Beta Testers forum. You can help us develop OSCAR by providing feedback, and get much more detailed graphs and information than you are getting from EncorePro. It will be much easier to help you with an email if we can get the information available in OSCAR. While we can make all the logical arguments in the world, we can't keep a duck from quacking, or make a blind man read.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
