Need assistance with proper communication.

Greetings forum members!

I am new to the community (with one other post under my belt) and new ( 1 week) to CPAP. I have some concerns/questions I need to ask of my doctor, but I am not good at communicating my wants/needs in an appropriate way. This will be long. Turn back now if you are easily bored!

In person, I can be pretty docile/laid back/meek -- I lose focus very easily and tend to just sort of sit back and not be proactive. I'm working on being more involved in my treatment. My PCP basically abandoned me to my neurologist, once sleep apnea was on the table they washed their hands of my concerns about being chronically tired and always feeling rundown/ill.

Very well, if they want to put all of their eggs in the CPAP basket, I need some help from them. I have the work e-mail address for my doctor's medical assistant. He's been the most helpful/nice person in the office thus far. Calling them is out of the question. They have this phone system that routes you to a voicemail every single time so that they can call you back. They call back around 3:50 and stop taking calls around 4:00. So if you don't pick up when they call (I'm always at work at 3:50) or call back in that 10 minute window...no phone conversation. The issue with WRITTEN communication is that I have the opposite problem than I have in person. Written I can be a total....um....hmm...we'll go with "menace".

Here are my concerns:

--I had a titration study done 1 week ago - they sent me home with a machine and showed me how to turn it off and on and told me not to mess with anything. I have no idea what I'm doing.
--I was not given the results of that study: what my pressures should be, etc.
--My machine is locked so I cannot retrieve my own data (yes I can get around this, but I am seriously miffed that they did this)
--I wasn't asked to come in for a follow-up appointment, I don't know how long I'll have this "loaner" machine. I don't really know what I am waiting for, looking for, etc.
--I wasn't told how I will get my new machine. The sleep tech implied it'll arrive in the office and I pick it up. This implies I don't get a say in which machine/mask I get. This is not acceptable to me.
--I always get stern reminders that being late to my appointments mean they will cancel them and possibly charge a fee (I am never late). However, when I get there I always wait no less than 45 minutes in their waiting room to be seen. Having someone who gets 0 sleep show up to your office in the early morning just to keep them waiting for 45 minutes to an hour (WHEN NO ONE ELSE IS THERE) is just unacceptable to me. *I'll probably leave this part out and just sulk about it to myself*

Now, about how things are going:

My first two nights with CPAP were horrible. I laid in bed awake with the thing on my face and cried for 7 hours both nights. AHI was 0, though, with all the not sleeping, heh. By the time I had gone so long without sleep (remember I had done a sleep study the previous night to this, so very little sleep there too) by this time I'm feeling like garbage, and I can barely function at my job. On the third night I fell right to sleep. This is after spending hours on this forum learning how to get past the restrictions on my machine and adjust the ramp feature to not start at 4. Now that I didn't feel like I was suffocating, had gone nearly 3 nights without sleep, and took 1/3rd of an ambien I had left over from long ago-- I could sleep. 4th and 5th nights I laid awake for 4 hours before taking it off so I could get some sleep. 6th night was my holiday party at work. I was too drunk to figure anything out and fell asleep on my couch (don't judge, I drink once every two years ). Last night I was just so pissed at how hard this is and how little help I've gotten from them I didn't even put it on. Here are some concerns with my mask (Resmed Swift LT for her):

--My mask hurts my ears. The plastic portion that peeks out behind the little felt "booties" on my mask rub the area of my ear that meets my head. This causes sores and bleeding. It really hurts.
--My nose part seems to be filled with water? I am not sure how/why this is happening. The humidifier tank is WELL below the top line. But this gives me the sensation that my nose is running -- it drives me crazy and I cannot fall asleep like that, I just can't. I dry it out before bed, the tubing is bone dry. I turn the machine on and in minutes there is water dripping out.
--I think the nose portion is too big for me. Which sucks because they've already told me I can't go smaller than XS. What do kids use? I have a tiny nose.
--My head strap, the one beneath my head, is at the tightest it can possibly go. It is still too loose. I don't have a small head, though!

But, mainly, I don't want to spend nights/hours getting acclimated to a mask/machine that I won't end up with only to start all over when I get my permanent set-up. I have a hard time falling asleep WITHOUT something touching my face. I hate things touching my face/neck. I don't wear jewelery/earrings/shirts with high collars -- I HATE things touching my face. And when it hurts...that is even worse.

So I am going to send an e-mail to the medical assistance to voice my frustrations. I want to do it in a way that doesn't come off as "menacing" but is also firm. I don't want them to stick me with a fisher & paykel machine and this mask. I cannot do it. What should I include in this e-mail? How should I format it? Bullet style like above, or more concise paragraphs?

Thank you so much for taking the time to read this. Any responses, even harsh/scolding ones are welcome. Be brutally honest. Call me weak! If this is something I have to deal with for life, I need to deal with it the RIGHT WAY.

The way things are now, I've made a surgical consultation. Even if it is only 30% effective -- the way things are going now I'd rather take that risk, have something painful and hard to recover from than deal with the set-up I have every night.

I just wanted to add --

I have fantastic insurance. I have written confirmation from both them and my doctor that all my CPAP supplies will be covered 100%. With this I feel even more "entitled" to do my research and pick the machine that I want. And ESPECIALLY the mask that I want.

AND -- I want to include in my request that they write me a script for a sleeping pill. Is this common for newbies? I could really use the help getting to sleep. Would this be an unreasonable request?

Dazzles,

Welcome to the forum! I am also new and though each persons journey with CPAP therapy varies, there is also so much about it that is similar. Soon enough there will be others here who will give you the help and support that I have been so blessed to receive. Just know that here you are never alone and your concerns, fears, and worries will be heard, understood and addressed to the best of the forums ability.

It will get easier, hang in there

John

Dazzles,

First and foremost, talk to somebody. Whether it's the PCP, the neurologist, the DME.... somebody... and get your COMFORT issues straightened out. CPAP does not and SHOULD not hurt. Period. When I first started I was given a mask that hurt, no real instruction as to how to adjust it. Their general idea was that if it leaks, pull it tighter! When I complained I was told, "You'll get used to it." ..... seriously?

You are ENTITLED to a copy of your sleep study. COMPLETE, not just the summary. REQUEST it, IN WRITING. You are ENTITLED to see the prescription for your equipment and to retain a copy of it for your records. REQUEST IT.

This is YOUR treatment and you are ENTITLED to the equipment that provides the greatest comfort because comfort goes hand in hand with COMPLIANCE (you'll actually USE the equipment). DO NOT ACCEPT a sub-par machine. The equipment supplier gets paid the same whether they dispense a cheap, low-end machine or a better machine with the latest technology. So naturally they want to give you the cheapest one they can as it puts more money in THEIR pocket.

You want:
Resmed S9 Autoset or
Philips Respironics System One RemStar Auto with A-Flex or
Devilbiss IntelliPap Auto with SmartFlex.

You DON'T want anything with "Plus" in the name, or "Escape" in the name. You have the right to REFUSE the equipment if it's not right. You should NOT sign anything that says you're refusing TREATMENT if you reject the equipment. I have 100% coverage for DME (Durable Medical Equipment) as well. I want the best I can get.

Do NOT pay any "upgrade charges" in order to get a better machine. That's called "Balance Billing" and if you are 100% covered AND the supplier is a participating supplier for your insurance, they almost SURELY have a clause in their contract stating they will accept the insurance as 100% payment and they are not ALLOWED to bill you any "difference". But they'll try anyways, so make a call to your insurance and confirm that. The DME will almost certainly try to take advantage of you although I've heard stories that there are a few good ones out there.

Get your PCP and/or neurologist on board by telling them you intend to be involved in your treatment. If they don't greet that statement with enthusiasm, then you might want to get a new doctor.

Bit of a hassle getting started. Be firm, but don't be a menace. Just be CONFIDENT and take charge. You are not a SHEEP. You've already taken steps to educate yourself. Keep going, we'll help, and good luck.

Welcome Dazzles, you aren't alone, a lot have had a rough start, and were upset and angry at having an OSA diagnosis and facing using a machine every night. You will get lots of help and support here, and hopefully feel better with some quality sleep. As for communication with your health care professionals, you will catch more flies with honey, than vinegar , so communicate your needs in a polite manner, if that doesn't work, another doc may be in order. They will not know what your issues are unless you communicate with them. It does not have to be an adversarial relationship. They may not be accustomed to a patient who wants to be involved . As Yardbird said, firmly and politely ask for copies of your studies and RX. Comfort is very important, no mask should hurt, tell your docs office that you need an appt ASAP for a mask fit/ exchange. It may not be the right mask for you, you may not have it adjusted properly. A requsest for sleep meds is perfectly reasonable. You do not want to get in the habit of taking off the mask and going back to sleep.You may also want to be proactive about a machine by telling them what specific model you will accept before coming in to pick one up. Read Janknitz s excellent blog about meeting with DMEs . This will get easier, Calmly work on one problem at a time . Kathy

It DOES sound like you might do better and be more comfortable w/a WRITTEN request.

First contact your insurance and get a list of your local DME CPAP equipment providers they are contracted with.

Then:

If possible start out w/a thank you for something whether it was a timely scheduling of the sleep study or the assistance of this medical assistant, whatever. Something they've done that you sincerely do appreciate.

Then state you have some requests:
1] you will want and appreciate a copy of the doctor's dictated results AND the full scored data summary report w/condensed graphs from both your in-lab sleep evaluation study AND your in-lab PAP titration study
2] you will want a copy of your PAP device and equipment prescription (you never know when you will run into problems w/lost, stolen or broken equipment when traveling)
3] you will want to discuss w/the doctor or medical assistant just which PAP and PAP features are MUTUALLY AGREEABLE as you will want Leak, AI and AHI data access and you WILL want to do this BEFORE you will ACCEPT ANY PAP or equipment
4] you will appreciate the inclusion of the phrases on your equipment order (prescripton):
a] full face, nasal cushion, nasal pillows or oro-nasal mask of patient's choice
b] PAP w/access to Leak, AHI and AI data
5] you will appreciate the opportunity to go over w/and discuss your testing results, equipment choices and recommendations BEFORE receiving your PAP
6] tell them you will want to be take an active part in making your PAP therapy a success and look forward to working w/them to do so
7] who should you contact if you are having problems w/your therapy and how do you contact them
8] mention the difficulties you've encountered so far and ask who you should be contacting for assistance
9] what is the best time of the day to schedule your appointments so that you don't have a long delay between appointment time and actually seeing the doctor or whoever the appointment is scheduled with
10] thank them for their time and consideration in these matters

This is exactly what I was looking for. You guys are amazing.

<3 Dazzles

Slinky's list is superb, and using a list format is way better than paragraphs because it's easier for the reader to catch the important points from a list.

The only thing I'd add is to keep your communication as short as is possible - long letters don't get read (or at least, they don't get read carefully). Also, presuming that your sleep doc that this is going to is different from your regular primary care physician - a "cc: Dr. Jane Primary Care Physician" at the bottom of the note can be downright magical because it makes the sleep doc's office aware that one of their peers is clued in.

RocketGirl wrote:... Also, presuming that your sleep doc that this is going to is different from your regular primary care physician - a "cc: Dr. Jane Primary Care Physician" at the bottom of the note can be downright magical because it makes the sleep doc's office aware that one of their peers is clued in.

EXCELLENT SUGGESTION, RocketGirl!!!! WHY didn't "I" think of that ??? Keeping it short as possible is also a good suggestion (and something "I" am NOT good at!)

1] You can combine your requests for #s 1 & 2
2] You can combine your requests for #s 3,4 & 5
3] #8 could stand alone
4] You can combine #s 6,7 & 9

The reason for you to call your insurance to ask about local DME CPAP providers they are contracted with is so that you know your options to shop to get the provider you will be most comfortable w/and (hopefully) the one most willing to work w/you and provide the equipment you want (w/in reason, of course) and offer a lenient mask exchange policy.

Okay, I sent the e-mail out. I'll let you guys know if/when he responds. Keeping it short is something I tried to do -- but just couldn't. D'oh! It isn't TOO long though. Only one page in Word.

Here is hoping I get the machine I want!!

Good Luck Dazzles!

Don't be too hard on yourself about long fingered e-mails/posts (its just like being long winded in conversations). If you stay around here long enough you will find that there are those who can post in a few sentences what takes some of us paragraphs to post, all of them with the same overall meaning. But you know, we all get there eventually, just some of us take longer routes along the way

John

Update:

I was contacted today by phone and e-mail by the respiratory therapist (so my doc's assistant forwarded her my e-mail). She agreed to come in early tomorrow (7:30am) to answer my questions in person and allow me the run of their closet as far as getting a new loaner mask, she also said they had one other machine type in the building that I can take home as my loaner, too.

I'll update again after that appointment. I am printing out my e-mail to take it with me so I don't miss any of my questions.

The ONLY bad thing is that her e-mail referenced wanting to share some "literature" with me about sleeping pills and sleep apnea, women's health and caffeine consumption. I imagine that is my subtle hint that Ambien isn't happening. Oh well. My PCP is very accommodating, perhaps I can get a script from her.

Not looking forward to the caffeine lecture. I rarely have caffeine. My anti-migraine meds make it taste like dirt so even if I wanted to drink more I couldn't.

Ahhhh. Its good they are so responsive and so quickly. Congratulations! Don't sweat the caffeine lecture. You can stop it the minute caffeine is mentioned by telling her you don't drink caffeine just as you told us.

I hope that you read this before you go to bed or before you keep your appointment tomorrow morning. What brand and model loaner PAP do you have right now? Do you have an idea of what brand and model PAP you want? Pay close attention to what brand and model he/she's offered as an alternative. You REALLY want to know these MODEL names: Elite, AutoSet, Pro, Auto are desirable.

Escape, Escape Auto, Plus, Auto IQ are NOT desirable. You don't want any of these models.

I checked here before going!