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Follow Up Dr. Appt was today/Rash on face due to mask
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Sleeprider Online
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Post: #11
RE: Follow Up Dr. Appt was today/Rash on face due to mask
(02-19-2015 09:27 PM)archangle Wrote:  
(02-19-2015 08:46 PM)Sleeprider Wrote:  Okay, calling a doctor lazy and ignorant because he wants to know what you feel, rather than look at the data, is a bit over the top.

How would you feel about a doctor treating diabetes who asked how you felt, but didn't bother to check your blood sugar levels, despite having the test results readily available?

How about a doctor treating blood pressure who asked the same questions, but didn't bother to check your BP?

Asking about how you feel, etc. should be a part of every treatment for sleep apnea. Failing to check the readily available AHI and other data is inexcusable.

CPAP data is "free", readily available, and relevant for any CPAP patient's therapy. How can you excuse a doctor charging you for an office visit, but not bothering to check the data?

You are consistent in the opinion doctors should all read sleep data from the machines. It would be nice, but you will be forever disappointed in the real world. I have yet to meet the doctor that will do that. In Sparkle's case, she has consistently had NO EVENTS and she scores under 0.5 AHI every night. There is nothing to see in the data and it would be a complete waste of his time. Her issues are comfort and tolerance related, and that is what the doc focused on.

IF there is a concern with therapy settings, efficacy and pressures, a patient would need to print a report and discuss their concerns with the doctor. I agree doctors should make use of the information freely available to them, but in the real world, that doesn't happen. Doctors don't pop data cards into laptops and call up a patient's CPAP data. Their time is limited and their focus is to interact directly with the patient for the 10-15 minutes they allocate for the appointment. It falls to the patient to come in prepared with an agenda of concerns.

Yes, it is kinda sorta like doing blood tests for a condition, but even in that case, the doctor normally only looks at what is out of range and does not discuss much else. In the case of CPAP data, if he is aware of high AHI or noncompliance, he will likely rely on staff for that information and discuss it with the patient. We can all wish the world was different, but I don't foresee the day your machine data will matter to anyone but a technician or nurse...if that. It does make us better and more independent as patients, and that's good enough for me.

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02-20-2015 10:53 AM
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PaytonA Offline
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Post: #12
RE: Follow Up Dr. Appt was today/Rash on face due to mask
Sparkle,

A couple of comments. First there is a person on this forum (I do not remember who) that uses 1/2 of a round cotton disc normally used for make-up removal as a pad on the bridge of her nose in order to get rid of the irritation. Just saying In terms of skin oils, I use an astringent cleanser on my face in the areas that the mask touches to remove the oils. It seems to work quite well.

As far as doctors are concerned, I believe that even the good ones are concerned with long term trends in the data and probably are not interested in looking at the data until there is enough data to be able to establish those trends. When they have enough data, they will probably be looking at the statistics and may still not be interested in the detail.

I am not saying that there are not doctors out there who are only looking to fatten their wallet but there are some caring and knowledgeable doctors. We complain about the bad ones but we should be careful to not automatically tar every MD with the same brush.

Best Regards,

PaytonA
02-20-2015 03:45 PM
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archangle Offline
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Post: #13
RE: Follow Up Dr. Appt was today/Rash on face due to mask
(02-20-2015 10:53 AM)Sleeprider Wrote:  You are consistent in the opinion doctors should all read sleep data from the machines. It would be nice, but you will be forever disappointed in the real world. I have yet to meet the doctor that will do that. In Sparkle's case, she has consistently had NO EVENTS and she scores under 0.5 AHI every night. There is nothing to see in the data and it would be a complete waste of his time. Her issues are comfort and tolerance related, and that is what the doc focused on.

He must be a really good doctor if he can tell she had no events and a score of 0.5 AHI without looking at her data.

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02-20-2015 05:07 PM
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archangle Offline
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Post: #14
RE: Follow Up Dr. Appt was today/Rash on face due to mask
BTW, have you figured out how to take your mask apart? In particular that you can take the silicone flap off and clean it separately? It took me months after getting my first mask to figure out it was safe to disassemble it and clean the parts. The DME was no help, of course.

Get the free SleepyHead software here.
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Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
02-20-2015 05:09 PM
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Tez62 Offline

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Post: #15
RE: Follow Up Dr. Appt was today/Rash on face due to mask
Sparkle, on the mask liners, I bought some Remzzz’s mask liners a 6 pack and although they say to only use them once you can wash them and get about 5-6 uses. I then made a template of what I needed from their liners and went to a fabric shop and got 3 ft of 50% cotton / 50% poly fabric and cut out my own and they also last 5-6 uses, the next time I bought 3 ft of 50% cotton / 50% lycra fabric. That last me about 3 months and costs about ten dollars. No need to do any sewing. Hope this helps.
02-20-2015 11:36 PM
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sumzzzs Offline

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Post: #16
RE: Follow Up Dr. Appt was today/Rash on face due to mask
I found that the Pad a cheek liner for my Quattro is so comfortable as compared to just wearing the mask when I started. I finally get my first visit with my sleep Doc next week, first after 2.5 months of therapy that is.
02-21-2015 12:08 AM
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surferdude2 Offline

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Post: #17
RE: Follow Up Dr. Appt was today/Rash on face due to mask
I shudder to think that someone would be expected to take this gear home and subject themselves to it for a period of three months before having someone with expertise in the therapy to check on how effective the initial setting were working. That just doesn't make sense when you consider how difficult this therapy can be if the pressure is set too high initially.

Unfortunately, that's how I got treated (and most others here) and if it were not for the help provided from this forum, I'd have been very miserable for a long time. The doctor set me up with a 10 cm H2O setting on a straight CPAP machine and a 3 month followup appt.. I nearly died the first week from struggling to breathe against that pressure. Since I was paying out of pocket, I went back to the DME supplier and traded for an automatic pressure machine. Things went very well after that and some good advice from this forum.

This CPAP therapy is torturous enough when administered properly. To ignore the pressure setting for 3 months is an awful way to treat a patient and even then not look at the data. That's almost criminal neglect and abuse!

I canceled my 3 month followup and have never looked back. That worked for me, YMMV. If you're stuck with following the rules and protocols of the insurance/doctor relationship, I feel sorry for you.
02-21-2015 01:08 AM
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surferdude2 Offline

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Post: #18
RE: Follow Up Dr. Appt was today/Rash on face due to mask
Oh, and BTW I cut my own mask liners from tee shirts that have developed alligator neck and are no longer fit for their normal purpose. I cut mine to cover my nose only and they do a good job of keeping my nose the same color as the rest of my face as opposed to that Rudolph red shade that I get without them. They also make any leaks around the nose that ordinarily shoot directly into the eyes no longer bothersome since they diffuse the leaks into softer flows.
02-21-2015 01:18 AM
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TheManseHen Offline

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Post: #19
RE: Follow Up Dr. Appt was today/Rash on face due to mask
Hi ya'll, Sparkle I'll write a comment about your situation in a minute.

But unless I'm mistaken, Sparkle has the same machine as I do, which has the cloud info that goes to the DME and the Doctor. No it doesn't have the fine detail but the doc could easily have taken a look at her AHI rates/oS vs Ca's as well. So we don't know if he looked at those overall numbers prior to seeing her. My doctor for instance, on my prescription, says that he wants the data sent him for the first two months.

Just a thought,
Hen
(This post was last modified: 02-21-2015 01:19 AM by TheManseHen.)
02-21-2015 01:18 AM
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TheManseHen Offline

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Other Comments: Started C-pap Boxing Day 2014. Tortured sleep more or less since 2000. Trigeminal Neuralgia.

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Post: #20
RE: Follow Up Dr. Appt was today/Rash on face due to mask
Hey Pap-Sis,
Glad you had your visit today, and while it was a little disappointing, it sounds like you were heard overall.

A thought about your rash. Some folk, especially woman around the "change" years, (before and after) can develop Rosacia for the first time. Now yes, you have a mask and things touching your skin that you never did before, but one thing more to consider, is that Rosacia, can spring up/flair, from heat/warmth.

So if you don't get results from your good cleaning, consider that. Even what seems like acne at our age, can be rosacia. So a dermatologist might be in order.

I think it is a great idea, as you'll surely be able to keep the mask you have now, to get some of the name brand cheek liners, and see how that goes, and try another mask, maybe something lighter?

Keep on doing so wonderfully! Are you feeling improvement?

The Manse Hen
02-21-2015 01:31 AM
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