Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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BleepingBeauty
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Re: Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

Post by BleepingBeauty » Mon Jun 08, 2009 9:36 pm

SaltLakeJan wrote:Thanks Beauty,

I know you have serious health issues you are trying to resolve, but you took the time to send a compassionate and encouraging post to me. Plus, you got right to my fears that I wouldn't be able to sleep . . . at the sleep study.
Aww, don't mention it. We're all here to get and give help when we can. Just doing my part.
A short time ago we didn't know each other, and now you have given me extra ordinary support. Thanks
You're very welcome! I feel like I've been adopted by a huge family here.
Why is is that words from someone else have more impact, more power than when you say the same words to yourself
But B.B. words got me up again. Thanks Buddy. And after Beauty's "Pep Talk" I planned my day. I knew that I didn't have the energy for Energetic Exercise, but I knewI had to do something to relax me, and that would help me sleep. And so . . .One of my favorite things to is go to a nursery where they have boundless plants/flowers/huge pots/shrubs. ...

I dragged my tired self to one of my favorite PLANT PLACES. I roamed, up and down the isles, I considered how every plant would look if I planted it in our yard. . I walked slowly, with many pauses to look at the blooming beauties, but I kept moving for 3 hours, I was tired when I came home but relaxed.
That sounds like a lovely activity, to me. What's more calming and relaxing than being around all kinds of natural beauty? Good choice, even in the rain!
B.B. Your words had power, they got me out of my doldrums, , I didn't exactly get exercise, but I got movement, and
distraction. When bedtime approached, I thought about the pleasant day and by the magic hour of 10:30 I was in bed and on my way to sleep. I can hear you say, Wonderful, Wonderful, Jan, but can i whine about one part of going to bed so early is that what do you do when you awaken at the ungodly hour of 6 A.m.?? I find something to distract me, I come to cpaptalk.com and read the Posts.
I'm so glad your excursion to the nursery made you feel better. (Make that a habit, if need be.) And of course you can whine; I don't like being awake so early, either. But try to focus more on the fact that you got a good night's sleep! That's fantastic! (And there's no shame in coming here to read posts. We're all getting a good education here, and I readily admit to a bit of an obsession with this place.)
Thanks again for the encouragement B.B You are absolutely the greatest!!!!! JAN
I'm so glad I could help.
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

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Re: Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

Post by SaltLakeJan » Tue Jun 09, 2009 8:40 am

spent this day following Muffy's Sleep Improvement Outline. No caffeine, found that my sleep "seems" better when I exercise around noon. My DH has pleaded with me for years "Don't stay up so late" Now when I start my pre-bed routine around 9, he has a different lament, "Oh, don't leave me so early." When I reminded him what he used to tell me - We ROFL

In bed at the magic hour of 10:30. Sleep didn't come for about 45 min - I had some things on my mind that wouldn't leave, even when I told them to. At 'bout 11:15, a deep sleep took hold of me, & kept me asleep 'till about 7. "bout 8 hours of sleep - Wow.

Muffy, I am amazed plus thankful you posted the sleep information on BB thread, It has helped me tremendously. BUT this A.M. I am a little apprehensive - at 7:30 this evening, I put myself in the hands of the Sleep Technicians. Will I sleep well ??-On to my caffeineless day. Jan

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Re: Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

Post by BleepingBeauty » Wed Jun 10, 2009 8:26 am

Hi, Jan.

Just checking in, hoping that your sleep study went well last night. Post an update after you've washed all that nasty goop out of your hair.
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

PR S1 ASV 950, DreamWear mask, F&P 150 humidifier, O2 @ 2L.

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Re: Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

Post by robertmarilyn » Wed Jun 10, 2009 9:29 am

BleepingBeauty wrote:Hi, Jan.
Just checking in, hoping that your sleep study went well last night. Post an update after you've washed all that nasty goop out of your hair.
If she is like some of us, she will have to get home and take a nap to get some good sleep.
mar

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Re: Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

Post by SaltLakeJan » Wed Jun 10, 2009 2:23 pm

Hi B.B.
It was nice to come "back" and find a greeting from a Buddy - Thank Beauty

The Cpap Sleep Study wasn't what I anticipated. I think from my previous experiences I expected something more dramatic - In my 2008 December Sleep Study, I hadn't had the guidiance from SWS & Muffy as to medications and sleep architecture, I had this time. Then, I was exhausted from lack of sleep, and had apparently fallen into a deep sleep. I was startled awaked by two technicians appearing in the room shouting Jan, Jan WAKE UP, what's the matter? The mattress was terrible, the material had separated, only held together by a sheet, and my back had become wedged in the crack and it was very painful. I imagine because I had over twice the amount of Lyrica and Mirapex I now take, and the fact I was overly tired, I didn't immediately awaken, but I was moaning like I was experiencing deep pain, (which I was) but had not yet awakened.

Like you Beauty, I was at the mercy of my PCP's prescribing wisdom??? He had me on Ritalin which temporarily boosted my energy frenetically, for a few hours in the morning. Then by early afternoon, I crashed so hard I must have bounced a dozen times. It left me exhausted, but not sleepy - I had a very hard time sleeping. I was also taking pills for High Blood Pressure and Diabetes. When I decided to take myself off Ritalin, I think it was shortly after that sleep test, I found the FDA had issued a Black Box warning against prescribing Ritalin for anyone using Diabetic & HBP meds.

Plussss. . . I had no way of knowing I was on at least twice the amount of Lyrica and Mirapex I might have needed. I was prescribed (2) 150 Mg Lyric to control the nerve pain in my back. And, (2) 1.5 mg of Mirapex for either RSL or PLM's, he mentioned both names.

It was around Christmas 2008, that I read Mirapex could cause compulsive behaviors. Christmas time is a difficult time to evaluate your spending behaviours. but after I read about compulsive spending, I wondered if I had been compulsive or generous with my gifts. I cut my Mirapex to (1), 1.5 pill. And I also cut my Lunesta from 3 mg to 1.5 mg.

And, after I was fortunate enough to have two analytical whizzes, SWS & Muffy, come into my life, & Muffy made comments like, "It is a good thing she doesn't like to take meds." Then, I wondered what my PCP was trying to do to me. I cut the Mirapex to 1/2 of a 1.5 pill and reduced the Lyrica to (1) 150 MG. I have lost confidence in my PCP, but since starting Medicare, Doctors are hard to find. So again, like you, I am stuck with what is available.

So, down to the preparation for my June 9th 2009 CPAP Sleep Test. With many words of of Muffy's & SWS's wisdom abounding on the triplets sites, I gleaned every drop, I thought could apply to me. Muffy posted a list of sleep changes on your thread, which I took to be the supreme manual, "for "Momma's with Sleep Problems 101) That became my How to go to Sleep & stay to Sleep Bible.

DJH couldn't believe me of all people, was going to bed at 8:30 to 9:00. I went to bed a lot at 10:00 to 10:30, but concetrated on the earlier hours to coincide with the Sleep Apnea Test schedule.

With more apprehension than I needed, I entered the door of the Sleep testing site. at 7:30 June 9th, 2009. Jill, the friendly Tech. took me to a clean, very attractive room. She told me to get in my "jammies" and she would for wire me up for bedtime about 9:00p.m. Jill was diagnosed with sleep apnea 4 years ago. She told me there were several doctors who operate out of the sleep center, all accredited. She considered the Dr. I am seeing and one other, the superior doctors there. This sleep center is a branch of the hospital, but it is also accredited. When I get my test records back, Muffy will be able to know if they follow current protocol.

The bed was comfy, my body was tired from a harder exercise today, it was ready for sleep. All was good - except my darn mind. It kept going off on a tangent, "I'll never go to sleep." I told my mind to be quiet, then followed the breath into sleep - Wrong. I went through this routine far longer than I wanted. I estimate I was awake for at least an hour. Later JiLL came in to adjust a loose leg wire, I asked if I had been asleep. She said yes,. There was a clock on the bedside table, but I had turned it so I wouldn't see it.

I did awaken for brief periods during the night, but was able to go back to sleep immediately. For this. I give full CREDIT to MUFFY for the tips on SLEEP CONSOLIDSATION. Before I knew it, Jill's voice came over the intercom, I think she awakened me about a quarter to 6:00 a.m. We will see . . . what we will see . . . when I get the test reports back.

At the time of the 6-9-2009 sleep test I was taking the following medications:

(1) Lyrica, 150 mg.
(1/2) Mirapex, of a 1.5 mg tablet
(1) Metiformin, 1000 mg
(1)Avalide, 300/12.4 mg
1/2 of a Lunesta 3 mg
(1/2) Vytorin 10/40 of a 10 mg

OTC, I had stopped everything but
(1) Loratadine 10 mg - From Eric Falconer's Web Site
(2)Ibuproffen 400 mg, in A.M & P.M on 6-9-2009. . I have exercised harder than usual, and my back was yelling "HELP" i I didn't want back pain to distract me at the sleep center, so used the Ibuproffen for 6-9- only. I had a recent ulcer the Gastro Dr. attributed to use of Ibuproffen. I'll resume the supplements I usually take. and beginning today. I am decreasing Lyrica to 75 Mg. I can't find the quote, but I think somewhere Muffy said, changing the dose of Lyrica so close to the Sleep test, might skew the test results. 75 Milligrams of Lyrica was my original amount. The Dr changed my prescription to two 2 150 mg so abruptly, I had a full bottle of 75 Mg left. I notice on the 75 mg bottle, I should take 2 per day. I believe one will be sufficient. 1 1/2 mg of Lunesta is the next on the chopping block

I did try the Falcon position at the sleep study - owee, those wires were everywhere, & I moved the chest belt, so I left it until I came home this morning. After showering the "gunk out of my hair, I went back to bed when it worked well.

I do appreciate B.B's, SWSs Muffy's, & Mar's most recent encouragement and wishes for me to do well. Plus the many P.M.'s I got, Thanks lots. Plus, I believe everyone one of the over 7000 visitors to this thread were rooting for me, to do as well as I could. CPAPtalk.com is a unique place - One where everyone one of the participating members wants all the others to succeed. I have had help, suggestions, considerations from everyone from the Stars of this show, to those who are still newbies, like me. I remember every helpful suggestion and thoughts that you all have so generously given me. - I hope to be as the Stars of this show say, I want to be able to pay it forward, 'till . . .

Jan

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Re: Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

Post by BleepingBeauty » Wed Jun 10, 2009 9:18 pm

SaltLakeJan wrote:Hi B.B.
It was nice to come "back" and find a greeting from a Buddy - Thank Beauty
You're most welcome, Jan.

I know the run-up to the sleep study was causing you some anxiety, but it's over now. And as I think I posted to you earlier, I find that my perception of how well I slept during a study is often way off from the reality. You won't know anything until you get the results, and I know the waiting can be an anxious time, too. But it'll happen soon, and you'll have some of the answers you seek. In the meantime, keep working on your new sleep hygiene regimen and get yourself some rest. You're doing well, so keep on keepin' on. (And visit the nursery whenever the mood strikes!)

I'll look forward to further updates from you as info becomes available. Hang in there, friend!

BB
Veni, vidi, Velcro. I came, I saw, I stuck around.

Dx 11/07: AHI 107, central apnea, Cheyne Stokes respiration, moderate-severe O2 desats. (Simple OSA would be too easy. ;))

PR S1 ASV 950, DreamWear mask, F&P 150 humidifier, O2 @ 2L.

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Re: And The Cottonwoods...

Post by SaltLakeJan » Sat Jun 13, 2009 9:43 pm

Hello SWS,

As you know, my sleep study is history, and I'm waiting for the results. Meanwhile, I've been mentally reviewing some parts
of our on-going conversation:
[quote="-SWS
On that note, I would like to place a personal bookmark for me to resurrect this facet of our discussion during one of the upcoming conversational lulls:

quote="-SWS"]The best argument I can think of for not having a data-capable machine available, would be if anxiety associated with tracking that nightly data was observed or predicted by the doctor as potentially being psychologically counterproductive. [/quote]

I'm glad I have had the opportunity to have both a data and a non-data capable unit. It has helped me understand the benefits of each. My F&P 608 has some nice features. I agree with your assessment of it's humidification benefits - they are excellent, and the heated tube eliminates the "Yucky" part of a rainout surprise. It took about two weeks of F&P super humidification, for my nares to heal completely.
"SWS" wrote:Regardless of the health problem(s) at hand, my understanding is that some patients may obsess and become anxiety ridden to the point of hindering health or recovery. That's a valid consideration for any sleep doctor IMHO. But blindly running with unacceptably high AHI can be very counterproductive as well---a far more common scenario I would guess based on countless anecdotes here.
SWS, you were kind in presenting, point and counter point, for each type of machine. But I suspect you thought I would be obsessing about the data from morning to night. And, that may be right. I do have a touch of OCD, that I wouldn't want to lose. I like the detail it give me, but I don't feel impelled to lock the door 20 times at night.

My first machine was a ResMed 8 Elite ll, it was data-capable. Even without the software, I knew what my leak rate, and other numbers were using the LCD readout. Even as much as I like the F&P for it's good features, without data-capabilities, I am frustrated because I can't even guess how my therapy is doing, I have Diabetes, & I can make an apt comparison between knowing what my daily Diabetic scores are, and trying to keep healthy without that ability.

Operating Cpap without software is akin to putting a blindfold on, to study for a test. I have already decided, it is too frustrating to go without software. When I get my sleep Study results back, I will want to buy a unit. My problem, will be, getting a prescription. My new Sleep Doctor doesn't see the need for patients to have software. My PCP is a friend of my former sleep doctor, so that avenue is probably closed to me.

I think, for the present, I'll be like Scarlet, and worry about that tomorrow.

Jan

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Re: And The Cottonwoods...

Post by rested gal » Sun Jun 14, 2009 7:45 am

SaltLakeJan wrote:I have already decided, it is too frustrating to go without software. When I get my sleep Study results back, I will want to buy a unit. My problem, will be, getting a prescription. My new Sleep Doctor doesn't see the need for patients to have software. My PCP is a friend of my former sleep doctor, so that avenue is probably closed to me.

I think, for the present, I'll be like Scarlet, and worry about that tomorrow.

Jan
Today, yesterday, and tomorrow are all the same regarding a prescription for whatever "cpap" or "autopap" you might want.

If you have a copy of your original prescription for "CPAP", you can mail, fax, or scan and email your old prescription to cpap.com.

It doesn't have to be a new prescription. Your old one will suffice.

A prescription with the word "CPAP" and at least one pressure mentioned on the Rx will let you buy a CPAP or an AUTOPAP from cpap.com. You don't have to have a prescription that says "autopap" in order to buy an autopap from cpap.com. An autopap is a "cpap" machine -- a cpap machine that happens to be able to vary that single pressure if "autotitrating" is chosen as the operating mode in the setup menu on the machine.

Setup instructions come with the machine when purchased from cpap.com

Setup instructions and provider manuals are easily found on the internet, too.

If you want a bilevel machine (bipap) or autotitrating bilevel (bipap auto) machine, however, THAT would require a new prescription -- a Rx for "bilevel" and two pressures mentioned (IPAP and EPAP pressures.)
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Re: And The Cottonwoods...

Post by -SWS » Sun Jun 14, 2009 8:00 am

SaltLakeJan wrote:I'm glad I have had the opportunity to have both a data and a non-data capable unit. It has helped me understand the benefits of each. My F&P 608 has some nice features. I agree with your assessment of it's humidification benefits - they are excellent, and the heated tube eliminates the "Yucky" part of a rainout surprise. It took about two weeks of F&P super humidification, for my nares to heal completely.
Glad to hear that good news, Jan.
SaltLakeJan wrote: But I suspect you thought I would be obsessing about the data from morning to night. And, that may be right. I do have a touch of OCD, that I wouldn't want to lose. I like the detail it give me, but I don't feel impelled to lock the door 20 times at night.
Actually, I thought that might be what your doctor suspected. And while I personally think that can occasionally happen in the SDB population, I think that's the rare case. I think our respective philosophies about CPAP data probably concur: CPAP data seldom hinders therapy, but very often that data serves as extremely useful feedback about efficacy and necessary changes or corrections. The patients here want to bother with that data because they have seen bad CPAP therapy turned into good therapy again and again because of that data. The doctors don't want to bother with that data because it's too much bother---and I would even posit more correction than they care to cope with.
SaltLakeJan wrote: My first machine was a ResMed 8 Elite ll, it was data-capable. Even without the software, I knew what my leak rate, and other numbers were using the LCD readout. Even as much as I like the F&P for it's good features, without data-capabilities, I am frustrated because I can't even guess how my therapy is doing, I have Diabetes, & I can make an apt comparison between knowing what my daily Diabetic scores are, and trying to keep healthy without that ability.

Operating Cpap without software is akin to putting a blindfold on, to study for a test. I have already decided, it is too frustrating to go without software. When I get my sleep Study results back, I will want to buy a unit.
I absolutely concur with that decision.
SaltLakeJan wrote: My problem, will be, getting a prescription. My new Sleep Doctor doesn't see the need for patients to have software. My PCP is a friend of my former sleep doctor, so that avenue is probably closed to me.
I agree with Rested Gal's comments about your prescription. You have a legal right to all of your prescriptions, Jan. In the meantime, how about a CMS 50-D PLUS, CMS50-E, or CMS50-F for your data fix?
http://www.semedicalsupply.com/pulse_oximeters.htm

I just bought the CMS 50-D PLUS from the above vendor and was pleasantly surprised at what I got for only $99.95 (free shipping & handling). I think I like it better than my much more expensive recording oximeter. Being able to look at your oxygen levels can at least give you an idea that CPAP therapy is going fairly well or not-so-well. You can record your SpO2 levels during the day as a baseline for comparison as well.
SaltLakeJan wrote: I think, for the present, I'll be like Scarlet, and worry about that tomorrow.

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Re: Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

Post by SaltLakeJan » Sun Jun 14, 2009 5:58 pm

SWS, Thanks for your reply.
-SWS wrote:I absolutely concur with that decision.
I am pleased that you agree.
-SWS wrote:I agree with Rested Gal's comments about your prescription. You have a legal right to all of your prescriptions, Jan
Both sleep doctors sent their prescriptions direct to the DME. Do you think if I go to the DME's office, & ask for my prescription, they will give it to me? I suspect it wouldn't be that easy. I have a feeling that the DME, would want to hold onto it. Maybe tell me to get my doctor's permission before releasing it.
-SWS wrote:In the meantime, how about a CMS 50-D PLUS, CMS50-E, or CMS50-F for your data fix?
http://www.semedicalsupply.com/pulse_oximeters.htm


I had read your post to Mar regarding the oximeter. For some unknown reason, I was going to wait for the results of my
sleep study before I ordered it. After reading your post - I ordered the CMS 50-D PLUS today. Great Idea. I can hardily wait.

I appreciate your willing & expert advice. Jan

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Re: Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

Post by rested gal » Sun Jun 14, 2009 6:49 pm

SaltLakeJan wrote:Both sleep doctors sent their prescriptions direct to the DME. Do you think if I go to the DME's office, & ask for my prescription, they will give it to me? I suspect it wouldn't be that easy. I have a feeling that the DME, would want to hold onto it. Maybe tell me to get my doctor's permission before releasing it.
Ask for a copy of your prescription. You don't need the original. A copy will do. One place or the other (DME or doctor's office) should be willing to give you a copy of your prescription without a hassle.

A reason isn't necessary, but if you want to give them a reason for your request, tell them you want to have a copy of your Rx to keep with your travel documents in case your machine ever gets lost or broken when you're traveling.

If there's any balking about your request, a sweet smiled reminder that you have a legal right to have a copy of your prescription should get it done.
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Re: Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

Post by SaltLakeJan » Sun Jun 14, 2009 9:59 pm

Hello to R.G.,
I checked my post to SWS, early this morning and was surprised to have a reply from him and a post from you.
I thought getting my prescription was a great option, but not one I was sure they would release to me.

When I went to me DME's office in January to get my initial equipment, it turned out not to be a happy meeting. I did not find Cpaptalk.com until the next day, but I wanted to know if I had to take the unit the Doctor prescribed. That did not go over well, & I asked to see the exact prescription. He explained it wasn't company policy to show the Doctor's prescription without his permission. Further, he told me with my attitude, "I was doomed to failure." I complained, & in March, the Owner of the DME changed the rigid policies.

Tomorrow, I plan to use your excellent suggestion, and ask for the original prescription for the ResMed unit. If they ask why,
rested gal wrote:tell them you want to have a copy of your Rx to keep with your travel documents in case your machine ever gets lost or broken when you're traveling.
I hope they still have the original, because my present sleep Doctor specified the F&P 608.

I am prepared to give a:
rested gal wrote:sweet smiled reminder that you (I) have a legal right to have a copy of your prescription.


I appreciate knowing that it is "my" prescription, and your timely help. I think it will work well, and about noon, you should hear satisfied coming from Salt Lake. Thanks much,

Jan

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Last edited by SaltLakeJan on Mon Jun 15, 2009 9:48 pm, edited 1 time in total.

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Re: Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

Post by SaltLakeJan » Mon Jun 15, 2009 9:46 pm

To R.G. & SWS

I am relieved and delighted to tell you that with R.G.'s specific instructions and SWS's encouragment firmly implanted in my mind I visited the DME's office today. R.G.'s words - "the prescription is mine" - "I will be traveling & need a copy of the prescription in the event the unit is damaged or lost" were itching to pop out of my mouth. Of course, the sweet smile was also ready to light up my face.

The clerk asked what she could do for me - I said I would like the original of my Cpap Machine Prescription. I waited for her questions. But the only thing she said was "I"ll print a copy of your prescription for you." How could it have been that easy, when I had already decided I would have to insist to get it? I'm send a copy to see if he included enough information. It is a very brief prescription.
Thank you both - I appreciate your help. Thanks Much! . . . from a grateful Jan
The image of the prescription was too small - I sent a larger one on the next page.

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Re: Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

Post by SaltLakeJan » Mon Jun 15, 2009 10:13 pm


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Last edited by SaltLakeJan on Mon Jun 15, 2009 10:35 pm, edited 1 time in total.

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Re: Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

Post by -SWS » Mon Jun 15, 2009 10:17 pm

That's the ticket, Jan!
Last edited by -SWS on Mon Jun 15, 2009 10:22 pm, edited 2 times in total.