Margie starts cpap treatment.

rested gal · Post by **rested gal** » Mon Jun 05, 2006 10:47 pm

I have a friend, Margie, who is several years older than I am, but seems more like twenty years older. Margie has had two mild strokes, is on meds for high blood pressure, has to take insulin, has arthritis in her shoulders. Margie falls asleep the moment she sits down. Snores like a freight train according to her daughter-in-law and granddaughter, who live with her. Has fallen asleep at the wheel of her car. You know what's coming.....

Recently I accompanied Margie to one of her routine doctor visits. With her permission, I asked her doctor if he would refer her for a sleep study. He readily agreed.

Study appointment was set for more than a month away. Hah. I asked the sleep clinic to put Margie on the cancellation/call list. Within two days she was called in.

PSG revealed severe OSA. Oxygen dipped down to 46!! Two weeks later (can you imagine making someone wait two weeks after that kind of information was gathered?!) a DME comes to her house bearing two machines... a Respironics Millenium O2 concentrator (gosh, that's a BIG thing) AND the most important machine of the two ...a teeny tiny little autopap. Cool! A ResMed S8 Vantage.

A few days later I visit Margie. I check the settings. The person who had set up her Vantage had several things wrong. Geeze.

Her Rx stated a range of 5 - 20. They had left the machine at 4 - 20. No big deal, just one cm on the low range, but you'd think the "health care professional" sent out by the DME could least get the pressure set as prescribed. 5 would definitely be easier than 4 to breathe through the full face mask they had given her. I had Margie try a few other pressures for the low... 7 suited her best for the low pressure in the range. She finally felt like she was getting enough air through the mask.

The other thing the person setting her up goofed on was the mask selection setting. They had the machine set for using a "Standard" mask. They had given Margie a ResMed Ultra Mirage FF mask. There is a setting for "Full Face", so I changed it to the Full Face mask setting. Again, not a huge deal, but again, ya'd think they'd get the setup right.

I was pleased that they provided Margie with an excellent machine and excellent mask right from the get-go. It would have been more reassuring if they had gotten the machine settings right, but...oh well.

I asked Margie if she has been able to use the machine all night. She said she wanted to and would, but after she gets up to go to the bathroom during the night, she can't get the mask back on. Arthritis prevents her from raising her hands above shoulder height. She can't get the headgear on by herself and doesn't want to wake anyone up during the night to do it for her. Her daughter-in-law or granddaughter help her put the mask on at the start of each night.

You'd think the person who came to her house to do the mask fitting would have had her practice putting it on and taking it off a few times...long enough to see that she can't reach her hands up high enough to do it by herself. The "fitting", such as it was, was done with Margie sitting in a chair in her house. I asked her if the "fitter" had her lie down in her normal sleeping position to make any adjustments. She said "No, I sat in a chair."

When I asked her to lie down with the mask on, the very thing happened that anyone familiar with wearing a cpap mask would expect....the straps tightened up considerably compared to how they were when sitting up. The cushion dug into Margie's face unnecessarily. Fitter had not shown her how to adjust the tilt of the mask to her face either. She was very happy to find out how to do that and how loose the straps could be, yet still be leakproof.

Last thing we worked on was having her practice unhooking and rehooking the main air hose to the mask. The DME person had not shown her how to disconnect the main air hose from the mask. Margie thought she had to take the mask and headgear completely off if she got up during the night...she was thrilled to find out she didn't have to remove the mask if she got up during the night. No more having to give up her treatment for the remainder of the night because of not wanting to wake anyone up.

Showing her how to unhook the air hose and leave the mask on for her bathroom trips -- took all of maybe 5 minutes? An extra five minutes the DME should have spent with her that will make the difference in Margie being able to use her machine all night long instead of for just a few hours each night.

Oh, almost forgot...no humidifier of any kind. O2 and cpap air blowing at her! No wonder she mentioned that her throat and nostrils felt dry and kinda' burned.

Heated humidifier will be tomorrow's mission.

elliejose · Post by **elliejose** » Mon Jun 05, 2006 10:57 pm

Good Luck to Margie and you in her quest for a better night's sleep. Hope she gets her heated humidifier soon. Why aren't they just a part of the initial setup?

Margie is very lucky to lucky to have you. Keep up the good work!!

Sergeant Bob · Post by **Sergeant Bob** » Mon Jun 05, 2006 11:32 pm

Rested Gal, you are truly an angel (and you look like one too).

A friend of my sister is in a similar situation (she could almost be the person you are talking about) and they have put her on CPAP in the hospital. She has not yet had a sleep study but it has already caused a marked improvement in her condition. She had one about ten years ago but was non-compliant due to lack of knowledge and bad equipment.

She has more energy than she has had in a long time and sleeps almost all the way through the night, a major change from getting up once every hour or so to use the bathroom.

She has people in her life like you, who will help her make this successful for her.

I sincerely hope your friend gets similar results (I'm sure she will with you on the case).

Alot of the people on this board have benefited from your help, I know I have.

rested gal · Post by **rested gal** » Mon Jun 05, 2006 11:55 pm

elliejose wrote:Hope she gets her heated humidifier soon.

Oh, she will. I just happen to have an extra F&P HC 150. She'll be comfortable during the delay while the doc/DME/insurance all jump through their respective hoops to authorize "heated humidification." LOL!!!

elliejose wrote:Why aren't they just a part of the initial setup?

Good question, Josie. They should be. It's penny-pinching on the part of some insurance companies, of course; and to heck with whether lack of humidification causes a person to have to stop treatment. Many people just accept what they are given and are not going to complain. Margie is that way. They think "that's what the doctor ordered -- that's the way it is" and they try to do it even if discomfort from the treatment itself disrupts sleep.

Or, more often than not, imho, they probably just quietly drop out of treatment. Luckily, in this day and time, I think an integrated heated humidifier is standard issue with many DME's.

In my opinion, this DME, knowing that Margie was going to be on 2 litres of supplemental O2 along with cpap blowin' at her, should have taken the initiative to contact her doctor and ask if he'd add heated humidification to the Rx.

Hey, Sarge! That's good to hear about your sister's friend getting help! Wonderful.

apneaicinisrael · Post by **apneaicinisrael** » Tue Jun 06, 2006 1:45 am

Wonder if there is a way to get informational pamphlets/forum site info. into the sleep docs and DME's routine paperwork. Like, when they have you sign for your equipment you get a pamphlet with the web sites and all. Oh, I know I am dreaming. Just that when you think of all the people who just fade away, don't stick with it, and it didn't need to be that way - it gets my juices flowing. Does the ASAA do anything like that ? Outreach? If Margie didn't have a good friend like RG, just imagine...

OK, I know, we can't fix the world. But at least we can learn from each other and help where we can.

Maybe an e-mail mailing to all DME's and sleep clinics? Is there a list of such places? Just wondering out loud

Good day to all,
AII

ozij · Post by **ozij** » Tue Jun 06, 2006 2:03 am

RG, I've got tears in my eyes. Of sadness at Margie wasted years, of gladness at Margies wonderful friend.

O.

rested gal · Post by **rested gal** » Tue Jun 06, 2006 3:30 am

apneaicinisrael wrote:when you think of all the people who just fade away, don't stick with it, and it didn't need to be that way - it gets my juices flowing.

Me too, AII. Me, too.

Makes me furious, actually, because as you said: "it didn't need to be that way."

Wulfman · Post by **Wulfman** » Tue Jun 06, 2006 9:13 am

Great story, RG.

Margie is SO lucky to have you for a friend.
It made me mad, too, reading the story and how many things that weren't properly configured, included, etc. THEN, when you multiply that by many thousands of other new CPAP users........ARRRGGGGHHHH!!! Makes you wanna SMACK somebody!
For being a "prescription" item which is then being sold and set up by (somewhat to totally) incompetent people......brings a person to tears for those who eventually give up or have a horrible time with their therapy.
(Please note that I didn't mean that they are ALL that way, but the forums are full of the horror stories.)

Best wishes,

Den

krousseau · Post by **krousseau** » Tue Jun 06, 2006 10:17 am

It sounds like your friend is homebound enough to qualify for home nursing. A referral could be made for home nurse visits. You might find yourself educating the nurses about CPAP but no one could do it better. I'm not just thinking about Margie-if she qualifies it would be good for her and for the home care agency lucky enough to pick up some of your knowledge.

ufo13 · Post by **ufo13** » Tue Jun 06, 2006 10:34 am

rested gal:

That was very KIND and CARING of YOU to help your friend margie and see to it she had the advice and equipment she needed, in spite of the lack of sevice by the so-called professionals! KUDOS to YOU! We are blessed to have YOU on this forum and all the goodness YOU give will return to YOU!

All the best to you!

Steve,
ufo13

Bonnie · Post by **Bonnie** » Tue Jun 06, 2006 10:58 am

What a great story, Margie will no doubt succced due to you , your expertise and kind, caring nature.

It is a sin to think that there are many, many Margies who won't get the correct "basics" from DMEs let alone additional support such as so many of us got from this and other forums. I approached Apria and asked if I could put out flyers listing on-line forums, support groups , etc. for people to have. Then they would have other means of support, instructions, tips and answers to questions & see that there is HELP out there. I was flat out denied.

(Me thinks they would not like to have their profit margins affected if people learned on these forums what an APAP was )

Snoredog · Post by **Snoredog** » Tue Jun 06, 2006 1:01 pm

Great job! It is amazing isn't it. I bet I've sent a dozen people to their doctors suggesting they have OSA and nearly every one did have it, the signs are obvious. On the opposite end, I've also been to a half dozen specialists (neuros, cardiologists, GI's, ENT's etc.) and none had a clue about OSA they just said they didn't know after they exhausted thousands of dollars worth of tests. I had to tell my Primary to send me over for a PSG before I ever got diagnosed.

Then after being diagnosed, most are FORCED by insurance to use a national rip-you-off DME and unskilled RT and your left with the results of that like your friend. In the state of California it is illegal for Insurance company to recommend a repair facility for your car, yet in medical you are FORCED to use a particular one (should report this to our Attorney General, maybe Spitzer would love a crack at this one). I bet if you hadn't been working with her they would have left that old junker of a machine for her to use, why else would they have brought it.

You might caution your friend on montioring the hypertension closer now that she is on cpap. As you know, if she stays on cpap her hypertension may drop and turn into hypotension (cpap +meds), so she should have a BP monitor at home and check it regularly. Once you have had a stroke hypertension becomes more critical in controlling than before so she has to keep a handle on it even with cpap.

Mile High Sleeper · Post by **Mile High Sleeper** » Tue Jun 06, 2006 1:12 pm

apneaicinisrael and bonnie, I'm in agreement with you! I'm in the process of writing more than 15 "peer coaching" or patient education handouts or articles based largely on the info in this forum. Rested Gal is reviewing them. I'll put them on the forum as soon as I can. (Sometimes the writing and review is slow, with other tasks in life.) The idea is that folks will cut and paste them and share them with all, far and wide - docs, DMEs (for hopeless optimists), sleep labs, people with diagnosed OSA or people exploring OSA and their near and dear ones.

littlebaddow · Post by **littlebaddow** » Tue Jun 06, 2006 3:03 pm

ozij wrote:RG, I've got tears in my eyes. Of sadness at Margie wasted years, of gladness at Margies wonderful friend.

O.

Ozij, as usual, a few words from you that say it all.

What an inspirational story.

This should be required reading in training school for DMEs (or have I just shown my ignorance of the US system )

tomjax · Post by **tomjax** » Tue Jun 06, 2006 4:19 pm

Great story RG- you done good.

The biggest question I have that nobody else has asked is why a person with that many conditions and the many docs needed to treat her had to rely on YOU to suggest a sleep study. Why did it not occur to THEM????

Another thread is addressing the BIG LIE topic and this tangentially relates to it.
In the few months I practiced pharmacy after my diagnosis and lost my license because a shrink thought I was abusing drugs instead of having a sleep disorder, i suggested many patients mention a sleep study to their docs.

I wonder how many pharmacists out there pick up and suggest one. Bet not many.

Machine	Mask

Margie starts cpap treatment.

Margie starts cpap treatment.

peer coaching articles on the way

friend