Kate's Therapy

zonker · Post by **zonker** » Tue Apr 02, 2019 9:31 pm

katestyles wrote: ↑
Tue Apr 02, 2019 8:11 pm

We actually both qualified in sign language over 20 years ago.

this reminds me of one of the coolest memories i have. i must have 19 or 20. i was in line at a orange julius at a mall. the couple ahead of me was obviously deaf; doing sign language together to try to figure out what to order.

when they stepped up to the counter, the young woman behind the counter greeted them in sign language! the couple was overjoyed with lots of smiling and head bobbing.

it was just so perfect!

katestyles · Post by **katestyles** » Wed Apr 03, 2019 2:58 pm

: screenshot-20190403-165637.png (152.17 KiB) Viewed 5663 times

EPR 2 is hard to breathe against.

I still see flow limitation and snore and OA. EDIT: and I fell asleep at 5:30pm

I might try 19-20 EPR out of curiosity tonight.

Dreaming1 · Post by **Dreaming1** » Wed Apr 03, 2019 3:47 pm

That’s a mighty fine leak line you got there!

katestyles · Post by **katestyles** » Wed Apr 03, 2019 5:48 pm

Dreaming1 wrote: ↑
Wed Apr 03, 2019 3:47 pm
That’s a mighty fine leak line you got there!

All due to the Bleep and mouth taping

katestyles · Post by **katestyles** » Thu Apr 04, 2019 4:51 am

No idea what that leak was. must be my ears again.

: screenshot-20190404-064941.png (152.28 KiB) Viewed 5629 times

Off to the hospital this morning. Wish me luck.

djams · Post by **djams** » Thu Apr 04, 2019 5:37 am

katestyles wrote: ↑
Thu Apr 04, 2019 4:51 am
No idea what that leak was. must be my ears again.
screenshot-20190404-064941.png

Off to the hospital this morning. Wish me luck.

Good luck Kate! I'm at the hospital myself for a family member having surgery.

katestyles · Post by **katestyles** » Thu Apr 04, 2019 12:26 pm

Gah!

I'm frustrated now!

I am just too nice!

I told the nice lady at the hospital that I was really concerned that I was maxxing out my machine, and that it was hard to breathe against 20 cm of pressure, and that EPR of 2 was not as comfortable as EPR of 3....

So she suggested setting it to a straight CPAP of 20cm.

So I pointed out that I am still snoring occasionally, and having flow limitations. And I am still suffering from day-time sleepiness.

She suggested that I try sleeping on my side to bring down my pressure needs.

I replied that I was not yet sleeping on my back and I wasn't really sure that I was getting into REM sleep, and that I would really like to have the extra pressure there when I needed it....

She suggested I try a mouth guard.

I asked for a machine with more pressure. She said that she cannot just prescribe me a bilevel machine without another titration to justify it. And my numbers are good at 20 cms.

Now I am kicking myself for not having read the titration guidelines last night.

I just had a sleep test that titrated me at 16cms, with the added caveat that I did not get into supine REM sleep. The titration guidelines say that if a patient is still having events at 15cm, they can move to bilevel.

Oh, but she was quite concerned that I was taping my mouth to avoid leaks. Had I tried a chinstrap? Please would I change over to Somnifix?

Greentree · Post by **Greentree** » Thu Apr 04, 2019 1:48 pm

katestyles wrote: ↑
Thu Apr 04, 2019 12:26 pm
Gah!

I'm frustrated now!

I am just too nice!

I told the nice lady at the hospital that I was really concerned that I was maxxing out my machine, and that it was hard to breathe against 20 cm of pressure, and that EPR of 2 was not as comfortable as EPR of 3....

So she suggested setting it to a straight CPAP of 20cm.

So I pointed out that I am still snoring occasionally, and having flow limitations. And I am still suffering from day-time sleepiness.

She suggested that I try sleeping on my side to bring down my pressure needs.

I replied that I was not yet sleeping on my back and I wasn't really sure that I was getting into REM sleep, and that I would really like to have the extra pressure there when I needed it....

She suggested I try a mouth guard.

I asked for a machine with more pressure. She said that she cannot just prescribe me a bilevel machine without another titration to justify it. And my numbers are good at 20 cms.

Now I am kicking myself for not having read the titration guidelines last night.

I just had a sleep test that titrated me at 16cms, with the added caveat that I did not get into supine REM sleep. The titration guidelines say that if a patient is still having events at 15cm, they can move to bilevel.

Oh, but she was quite concerned that I was taping my mouth to avoid leaks. Had I tried a chinstrap? Please would I change over to Somnifix?

Oh, Kate, I completely feel your frustration. That is the kind of push-back I get from my hospital contact. I think you should contact her again right away with the titration guidelines you found. I am sitting here with my blood pressure going up on your behalf!!

I just found out yesterday that my hospital person never sent in the chart notes from my compliance meeting with her. Thus, DME can't give me any supplies that I am needing. Plus, the titration study I have been waiting for for three months now has been delayed because of those notes. I had no idea!!! DME requested the notes ages ago and no response. You are right. We are too nice. Let's band together and become militant patients lobbying aggressively on our own behalf!!

Shnorky · Post by **Shnorky** » Thu Apr 04, 2019 2:22 pm

katestyles wrote: ↑
Thu Apr 04, 2019 12:26 pm
Gah!

I'm frustrated now!

I am just too nice!

I told the nice lady at the hospital that I was really concerned that I was maxxing out my machine, and that it was hard to breathe against 20 cm of pressure, and that EPR of 2 was not as comfortable as EPR of 3....

So she suggested setting it to a straight CPAP of 20cm.

So I pointed out that I am still snoring occasionally, and having flow limitations. And I am still suffering from day-time sleepiness.

She suggested that I try sleeping on my side to bring down my pressure needs.

I replied that I was not yet sleeping on my back and I wasn't really sure that I was getting into REM sleep, and that I would really like to have the extra pressure there when I needed it....

She suggested I try a mouth guard.

I asked for a machine with more pressure. She said that she cannot just prescribe me a bilevel machine without another titration to justify it. And my numbers are good at 20 cms.

Now I am kicking myself for not having read the titration guidelines last night.

I just had a sleep test that titrated me at 16cms, with the added caveat that I did not get into supine REM sleep. The titration guidelines say that if a patient is still having events at 15cm, they can move to bilevel.

Oh, but she was quite concerned that I was taping my mouth to avoid leaks. Had I tried a chinstrap? Please would I change over to Somnifix?

any chance of having another apointment?

katestyles · Post by **katestyles** » Thu Apr 04, 2019 9:20 pm

Greentree wrote: ↑
Thu Apr 04, 2019 1:48 pm

I just found out yesterday that my hospital person never sent in the chart notes from my compliance meeting with her. Thus, DME can't give me any supplies that I am needing. Plus, the titration study I have been waiting for for three months now has been delayed because of those notes. I had no idea!!! DME requested the notes ages ago and no response. You are right. We are too nice. Let's band together and become militant patients lobbying aggressively on our own behalf!!

Greentree - that's so sad! I hope you have complained bitterly to the person responsible!

I'm afraid that MPLAOOOB is just not an acronym that rolls off the tongue. How about "Militant Obstructive Activists Needing Expeditious Respironics Supplies" (MOANERS) or "Seek No Other Remedy; Expect Restorative Sleep" (SNORERS)

katestyles · Post by **katestyles** » Thu Apr 04, 2019 9:21 pm

Shnorky wrote: ↑
Thu Apr 04, 2019 2:22 pm

any chance of having another apointment?

I will be getting in touch

Jas_williams · Post by **Jas_williams** » Thu Apr 04, 2019 11:19 pm

katestyles wrote: ↑
Thu Apr 04, 2019 9:21 pm

Shnorky wrote: ↑
Thu Apr 04, 2019 2:22 pm

any chance of having another apointment?
I will be getting in touch

You need a Dr to change you prescription to a BILevel maybe the person you met was not able to change your prescription so was trying to help you within the elements they can change ?

katestyles · Post by **katestyles** » Fri Apr 05, 2019 6:22 pm

: screenshot-20190404-064941.png (152.28 KiB) Viewed 5554 times

I have been taping my mouth with Nexcare waterproof tape for the last few nights, but it has been tearing my cheeks up, so that has to change.

I realized that I am paying close to $100 a month for an autoPAP that I am running at 18-20. Why not just haul out my old CPAP and run it at straight 20?

Of course the answer to that is that it is a Respironics, and I couldn't tolerate it at pressures above 13cms. I far prefer the EPR on the ResMed.

I sent a message today asking for my Sleep Study, so that is in the mail to me.

I'm thinking of changing careers to be a sleep tech. Looks like I could be a good fit for the job.

katestyles · Post by **katestyles** » Sat Apr 06, 2019 6:02 am

My copay/deductible for the sleep study was close to $1500

Doc had requested a retitration CPAP/BiPAP

They didn't switch me to BiPAP when I still had events at 15cms. They prescribed 16cms on CPAP. I checked the protocol, and I feel aggrieved.

Leaky night. Lots of waking.

Pugsy · Post by **Pugsy** » Sat Apr 06, 2019 6:25 am

Did you change tape back to the less sticky to save your skin?
Did those leaks wake you up much?

I had a bad night night before last. I fought the damn hose all night...woke up with it wrapped around my neck twice.
Fortunately hose wars are rare for me.

Machine	Mask	Humidifier

Additional Comments: Love my cpap life!

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