Then and Now: 3 Charts

Then, and now....

Having, by dint of sneaker net work and much cursing, gotten some of my files from the machine which works with the Encore Viewer to the machine which has a connection to the net, it's somewhat interesting to look at the differences 5 months and lots of data study can make in therapy.

Here is my second night... the first one was lost because I did not know that the smart cards only held seven sessions of detailed data. I had significantly more apneas, hypopneas, and periodic breathing in a shorter period on the first night.



This was with the original pressures of EPAP 10, MinIpap 10, and MaxIpap 14. About ten days after this shot, with similar results because I could not get the leak rate down, and because I observed what times I kept waking up, struggling to breathe out, and correlated it with the apnea / hypopnea / periodic breathing clusters, my pressures were changed. I am currently using: EPAP 6, MinIpap 10, Max Ipap 14. Almost all the apneas and periodic breathing vanished.


Here are Friday and Saturday nights...





I was dealing with alternating hot and cold sequences -- I usually have a heater fan by the bed so I can have either a cooling breeze or a warming one.

Last night was a no-go with the Bipap -- my one and only, with the exception of the nights I spent at the hospital with my Mom, then came home, pulled on my mask and slept. I'm down with a respiratory infection. Using nasal pillows or a nasal mask is impossible. My RT has consistently refused to get me a full-face mask, even though I have asked for one over and over because I know what my respiratory infections are like -- thankfully rare, but miserable. "Your insurance won't pay for a second mask this soon." Harry took one look at me this morning after a night Without, and said, "<Bleep> the insurance. Get one next day from CPAP.COM..."

For those who think "one night without" won't hurt, well, yes, it will. Folk who have heard my tale over and over will recall that I was diagnosed with apnea because of post-surgical gut-pain that wouldn't go away, and chronic hip pain which had been plaguing me for over seven years. On the Bipap, with my water therapy, pain has been almost nonexistent. I got up this morning and screamed when I tried to sit up. Hips felt like they did pre-water therapy. Gut felt like it did a few weeks after the hysterectomy and panniculectomy for cancer which was one year ago tomorrow -- 7 April.

When that full face mask gets here tomorrow, I will find a way to conquer the claustrophobia... some how.

Wow! What a difference 5 mos makes! Those charts say it all.

Anyone who takes the recommendations from a one-time titration should see these. Monitoring your own progress is the only way to go...

Thank you for sharing!

LinkC wrote:Wow! What a difference 5 mos makes! Those charts say it all.

Anyone who takes the recommendations from a one-time titration should see these. Monitoring your own progress is the only way to go...

Thank you for sharing!

Link,

If I get a chance to pull some other representative charts from the five months, I'll do so -- it's intriguing how much other factors in your life can affect xPap therapy.

And yes, these charts are one of reasons I am all for having a fully data capable machine and your own software. Because without the software, I would not have been able to convince either the RT or the doctor that in point of fact, the higher pressures I was titrated at were causing apneas, not solving them.

Kiralynx wrote:Then, and now....

... the first one was lost because I did not know that the smart cards only held seven sessions of detailed data...

This weekend, I asked Encore Viewer to give me a single-night report for 3/14, my first night with a smart machine. It did, in detail, even though the date was more than 7 sessions ago. All you have to do is set the little lavendar ovals on the front page calendar on the same date for the "from" and "to" dates. To set them, just click on the dates on the calendars.

I hope this works for you so you can get the chart for your first night. Let me know what happens when you try it. **grin**

LinkC wrote:.....Anyone who takes the recommendations from a one-time titration should see these. Monitoring your own progress is the only way to go...

............

Ditto.

Spread the word!

howkim wrote:This weekend, I asked Encore Viewer to give me a single-night report for 3/14, my first night with a smart machine. It did, in detail, even though the date was more than 7 sessions ago. All you have to do is set the little lavendar ovals on the front page calendar on the same date for the "from" and "to" dates. To set them, just click on the dates on the calendars.

I hope this works for you so you can get the chart for your first night. Let me know what happens when you try it. **grin**

How fascinating... because I tried that months ago, and it did not work. Now it does... I wonder what the difference is? (Not that I mind, as this will allow me to go back and fill in some of the dates I thought were lost in those early days.

Thank you!

bump

Kiralynx wrote: this will allow me to go back and fill in some of the dates I thought were lost in those early days.

You're quite welcome. You do know, I hope, that you can print the reports to pdf format and then archive them? You'd need something like PDFWriter or the full version of Adobe Acrobat (not Reader). Hit the "Print" button on Viewer and select the "printer" you want to use. Pdfs take up a LOT less room in the computer memory than do jpgs.

Kiralynx wrote:My RT has consistently refused to get me a full-face mask, even though I have asked for one over and over because I know what my respiratory infections are like -- thankfully rare, but miserable. "Your insurance won't pay for a second mask this soon."

If...if...IF...your RT is aware of all your many health issues, and surely is aware of how complex your sleep apnea is... IF the RT had one ounce of compassion, he/she would have pulled strings to get you a Full Face mask long ago.

I realize that DMEs have to make a profit. And I realize that the RT is an employee who has to toe the line to stay employed there. But surely any RT worth their salt -- if they truly cared about helping someone like you, Kira, who is doing everything possible to be "compliant" (you're a CHAMP of a cpap user, imho) -- that RT should have been talking to the boss, or contacting some hospital friends or sleep labs to see if there was a FF mask SOMEWHERE that was going to be discarded, or that could be donated to you.

That kind of DME "non-helpfulness" just burns me up. They are making PLENTY of money off you already.

howkim wrote:You're quite welcome. You do know, I hope, that you can print the reports to pdf format and then archive them? You'd need something like PDFWriter or the full version of Adobe Acrobat (not Reader). Hit the "Print" button on Viewer and select the "printer" you want to use. Pdfs take up a LOT less room in the computer memory than do jpgs.

Yes, I am, and I have PDF Suite, which was recommended by Ozij. I also have the MyCPAP.org utility which allows me to archive the data from the card, and later put it back onto a formatted card.

In point of fact, the only reason I converted those three charts to JPG was because I couldn't post a PDF here! (Well, at least, not with Photobucket.)

Kiralynx wrote:In point of fact, the only reason I converted those three charts to JPG was because I couldn't post a PDF here! (Well, at least, not with Photobucket.)

Ahh, I didn't know that! Thanks for letting me know before I had the frustration of trying to post one here.

Hummmm. Note to self...investigate myCPAP.org and the utilities there. Learn something new every day!

;^))

rested gal wrote:If...if...IF...your RT is aware of all your many health issues, and surely is aware of how complex your sleep apnea is... IF the RT had one ounce of compassion, he/she would have pulled strings to get you a Full Face mask long ago.

I realize that DMEs have to make a profit. And I realize that the RT is an employee who has to toe the line to stay employed there. But surely any RT worth their salt -- if they truly cared about helping someone like you, Kira, who is doing everything possible to be "compliant" (you're a CHAMP of a cpap user, imho) -- that RT should have been talking to the boss, or contacting some hospital friends or sleep labs to see if there was a FF mask SOMEWHERE that was going to be discarded, or that could be donated to you.

That kind of DME "non-helpfulness" just burns me up. They are making PLENTY of money off you already.

The RT is good, within limits. She is, after all, the one who recommended the Bipap Auto SV for my complex apnea right out of the gate, instead of putting me through trials on straight CPAP or Bipap or Auto. I seriously doubt I would be doing as well as I am if I did not have the correct machine for my situation.

What I don't know is how much of this is the DMEs and how much is local situation. I'm in New Orleans, and, as you may know, medical situations in New Orleans have simply not been the same since Hurricane Katrina in 2005.

When I realized this wasn't just an allergy attack, I tried CL2 simple seal, CL2 nasal pillows, CL2 direct seals, and Headrest nasal pillows. I even tried the hose without a mask ala an oral mask, but of course, couldn't keep it there. After the first night, when I could not use any of those methods, I looked up every DME covered by my insurance in the city.

I called the one I'm working with: they have to order the mask. A mask is on order... I haven't even heard it has been shipped, but the attitude is, "We'll get it to you when we feel like it." My doctor has given me a prescription for an additional mask, so hopefully, they can't claim this one is my six month replacement.

I called every single one of the others covered by my insurance: they have to order the mask.

I got out the Yellow Pages, and called non-affiliated local DMEs. Some of them had masks in stock. Their cost, since my insurance wouldn't be covering it, was more than double the cost of ordering a mask, with overnight shipping, from CPAP.COM.

Well, I spent last night with my CPAP.COM mask... my hat's off to anyone who can tolerate a full-face mask. I can't wait to get back to either my CL2 or my Headrest! But having the ZZZ-mask is better than not having a mask and machine at all.

Dealing with mask and machine is not what I wanted to do. But the one night without the machine demonstrated, absolutely and conclusively, that I need it... so therefore, I will do everything in my power to make this therapy work. As a character in a book I'm working on with a friend observed, "Pain is pain, and I'm not into it!"

And incidentally, thank you to you, and all the other veterans here... I would not have the knowledge to make this therapy work without your help. Which is why the difference between the Then and Now charts in this thread.

Kiralynx wrote:The RT is good, within limits. She is, after all, the one who recommended the Bipap Auto SV for my complex apnea right out of the gate, instead of putting me through trials on straight CPAP or Bipap or Auto. I seriously doubt I would be doing as well as I am if I did not have the correct machine for my situation..

She is good, then, if her recommendation is responsible for getting you that machine from the get-go. She's unusually good, for knowing to do that.

rested gal wrote:She is good, then, if her recommendation is responsible for getting you that machine from the get-go. She's unusually good, for knowing to do that.

Yes, she's good in that respect... which is why I get so frustrated over things like the extra mask. Of course, as noted earlier, the problem may not be her... it may be the local office policy. I feel a letter to the district manager coming on....