Replies to This Discussion

Permalink Reply by claudette paluch on December 11, 2009 at 11:21am

Hi Jeff....

i hope that i am not repeating myself...i tried to send this message last night and i lost the connection at some point. i just dont know when....i will have to go off this computer after the holiday rush and replace it if it doesnt decide to leave me first...its getting a life of its own.

At any rate, i looked at the results from my first sleep study and then at the one i just completed in October.

My AHI was 48 on the first one and 109.6 on the last one pre bipap. I am concerned to see that difference. And i am trying to determine why... the recent stats on the vpap auto 25, appear to indicate a high leak rate. but i havent been able to clearly discern many leaks each night..... It seems apparent, tho, that something must have been awry with my treatment for a long time...My weight has not increased since the first test.

I was unable to get to see my sleep md or therapist for several years....and i had no time to use the computer to look for forums or become analytical about my progress or lack of it...until recently....I also was under a great deal of stress for the years that i did not see them...other than the fact that i didnt pay attention to the effectiveness of my treatment, i cant think of any reason for that to have played a role in this. do you?

...My old respironics has only a compliance card... i am trying to get a new machine hence the vpap auto 25 loaner....

My questions are: 1) Am i in error to assume that my pressures/leak rate may be the sole reason for so significant a change?
2) I would also assume that physiological changes ,especially in the respiratory system , could also affect the need for pressure changes...but if not, what then?

I would appreciate your thoughts on my dilemma re the AHI changes. Thank you so much!..........claudette






claudette paluch said:

i am so happy that you got your life back, jeff! getting mine back is still a work in progress... your information is a wonderful helping step in that direction. thanks again.......claudette

j n k said:

I had 114.7 AHI for my diagnostic. But I got my life back.

• ▶ Reply

Permalink Reply by claudette paluch on December 12, 2009 at 1:05am

The first study was in 2001. It was a diagnostic one. Actually it was the RDI that was 48. The one in October was also an RDI of 109.6 before the mask was applied...no rem sleep then. I read that had I been in rem sleep that value would be higher. Both say OSA.

I am using a Respironics Prolite nasal mask....I will see what slinky says....I slid over there yesterday to take a look for the first time and didnt get very far. I got side tracked.. I will be going back.

I dont know how to evaluate whether there is air escaping from my mouth once i am asleep.

I also thought I had to focus on lowering the AHI to <5. What you say makes sense tho re feeling better and breathing better...but i wonder whether a higher AHI could bode negatively for anything... like the respiratory or cardiovascular system over time.

I cant believe how much there is to all this. thanks jeff.......










j n k said:

What was the time span between studies, again? Were they both diagnostic studies, or was one a titration study?

I forget what kind of mask you are using. Is if full-face or a nasal mask of some sort?

As a general answer, the specific number for your AHI is not as important as the fact that it proves you need PAP therapy. In one sense, moderate-to-severe apnea is moderate-to-severe apnea, regardless of being 48 or 110. The trick is to find the right pressure to make you breathe better and feel better.

Slinky is the patient-expert at masks and stopping leaks, I think. If you aren't using a full-face mask, then making sure no air is escaping out of your mouth is very important. If you have a full-face mask and are still getting high leak, you may not have the right mask for you or it may be too tight.

• ▶ Reply

Permalink Reply by Mary Z on December 12, 2009 at 9:51am

Claudette, I hope you have a doc you like and trust to read the data and let you know how things are going and make adjustments when needed. Alternatively your DME can read your Smart Card or Resscan card and send the results to the Doctor. I think (professionals chime in here) that six weeks to eight weeks of data would give the physician something to work with when getting started. If we feel better while we're being treated, but still have AHI numbers in the moderate range I don't know if damage is still being done to our bodies. A good question for my doc when I see him next month. I'm glad you're able to see a doc again and think all the research you've done and continue to do is great. Speaks highly of your motivation to improve and make the most of your therepy.

Mary Zimlich


claudette paluch said:

The first study was in 2001. It was a diagnostic one. Actually it was the RDI that was 48. The one in October was also an RDI of 109.6 before the mask was

• ▶ Reply

Permalink Reply by claudette paluch on December 12, 2009 at 3:52pm

Mary..Thank you so much for your reply...I am becoming addicted to researching and learning everything I can about my treatment. I lost considerable time these past several years as i have said and I know now that my treatment was not working well for me. I was unable to devote much time to thinking about it.

It was only on my first visit back to see the sleep doctor recently after 2 years that I learned that there were auto bipaps and then i said "What's that?"

. At that time I realized that I had better start educating myself..and I now have the time. Its keeping me up late at night using the computer as I find interesting information to the exclusion of my sleep time tho.....I am enjoying researching....

I am interested especially in the physiological sequelae that can occur as a result of less than adequately treated apnea...
and what is adequate? and what is normal? and when can we assume that we have reached a place where damage is not being continued. I think that it is easy to be lulled into thinking that because we have a machine and mask and seem to be doing ok that in fact we are ok....but are we?

I am too new at this to be able to comment intelligently. But these are questions that concern me and hopefully will become clear to me as time goes on....I dont know how much clinical research has been done.

Good questions for your doctor tho...especially if you have any cardiovascular or respiratory issues.

I am not even certain what they mean by "clinical improvement". How the patient feels is an important consideration to be sure......but are there other means of measuring clinical improvement? I dont know at this point...

Right now I am just hoping that I will be able to get an auto bipap....we shall see....So nice to see you Mary....Claudette
























Mary Z said:

Claudette, I hope you have a doc you like and trust to read the data and let you know how things are going and make adjustments when needed. Alternatively your DME can read your Smart Card or Resscan card and send the results to the Doctor. I think (professionals chime in here) that six weeks to eight weeks of data would give the physician something to work with when getting started. If we feel better while we're being treated, but still have AHI numbers in the moderate range I don't know if damage is still being done to our bodies. A good question for my doc when I see him next month. I'm glad you're able to see a doc again and think all the research you've done and continue to do is great. Speaks highly of your motivation to improve and make the most of your therepy.

Mary Zimlich


claudette paluch said:

The first study was in 2001. It was a diagnostic one. Actually it was the RDI that was 48. The one in October was also an RDI of 109.6 before the mask was

• ▶ Reply

Permalink Reply by claudette paluch on December 12, 2009 at 4:31pm

by the way Mary.thanks for the information re the number of weeks to give the doctor adequate information...i see him tomorrow and that will help me in my discussion....claudette

Mary Z said:

Claudette, I hope you have a doc you like and trust to read the data and let you know how things are going and make adjustments when needed. Alternatively your DME can read your Smart Card or Resscan card and send the results to the Doctor. I think (professionals chime in here) that six weeks to eight weeks of data would give the physician something to work with when getting started. If we feel better while we're being treated, but still have AHI numbers in the moderate range I don't know if damage is still being done to our bodies. A good question for my doc when I see him next month. I'm glad you're able to see a doc again and think all the research you've done and continue to do is great. Speaks highly of your motivation to improve and make the most of your therepy.

Mary Zimlich


claudette paluch said:

The first study was in 2001. It was a diagnostic one. Actually it was the RDI that was 48. The one in October was also an RDI of 109.6 before the mask was

• ▶ Reply

Permalink Reply by Mary Z on December 12, 2009 at 4:56pm

Claudette,
Some folks might disagree with the six to eight week time frame. My Doc likes at least one month to two months depending on how I'm doing- how I'm feeling as well as the numbers.

Good luck,
Mary

• ▶ Reply

Permalink Reply by claudette paluch on December 12, 2009 at 5:00pm

thank you mary....

Mary Z said:

Claudette,
Some folks might disagree with the six to eight week time frame. My Doc likes at least one month to two months depending on how I'm doing- how I'm feeling as well as the numbers.

Good luck,
Mary

• ▶ Reply

Permalink Reply by Judy on December 12, 2009 at 7:57pm

And I am NOT satisfied if I don't see and feel improvement in one month. Plus if I were being auto-titrated at home I would insist on a download of data once a week and if there were no improvement in data I'd be bugging SOMEONE - WHY? What does the data say I/we are doing wrong or not doing? Most always if a newbie it is the mask or mouth leaks.

• ▶ Reply

Permalink Reply by claudette paluch on December 13, 2009 at 8:54am

thanks judy...i will have to wait and see what happens....

Judy said:

And I am NOT satisfied if I don't see and feel improvement in one month. Plus if I were being auto-titrated at home I would insist on a download of data once a week and if there were no improvement in data I'd be bugging SOMEONE - WHY? What does the data say I/we are doing wrong or not doing? Most always if a newbie it is the mask or mouth leaks.

• ▶ Reply

Permalink Reply by Mary Z on December 13, 2009 at 9:57am

I graciously defer to one who know much more than me, and has given me much useful advice. Why wait a month if one week shows a problem that could be fixed in a month?

Mary Zimlich

Judy said:

And I am NOT satisfied if I don't see and feel improvement in one month. Plus if I were being auto-titrated at home I would insist on a download of data once a week and if there were no improvement in data I'd be bugging SOMEONE - WHY? What does the data say I/we are doing wrong or not doing? Most always if a newbie it is the mask or mouth leaks.

• ▶ Reply

Permalink Reply by Judy on December 13, 2009 at 10:49am

As has been mentioned many times before, but as a reminder, with the Resmeds concentrate on the AI. To do that concentrate on your EPAP setting. Once you get a consistently low AI w/your EPAP setting, THEN you can chase the HI w/the IPAP setting.

• ▶ Reply

Permalink Reply by claudette paluch on December 13, 2009 at 11:56am

Thanks Judy for your effort....but honestly I dont understand what you said. I dont know how to access the data on the machine. Its a loaner...Tomorrow i see the sleep md and I am very concerned about that visit and the outcome as to which machine I will be using....so i have been reluctant to proceed within the machine because i dont know what is going to happen...and i guess i am thinking negatively.....not good...I'm too tired to fight the system....but I may have no choice......I'll know soon which direction i have to take.....thank you so much for your support....Claudette

Judy said:

As has been mentioned many times before, but as a reminder, with the Resmeds concentrate on the AI. To do that concentrate on your EPAP setting. Once you get a consistently low AI w/your EPAP setting, THEN you can chase the HI w/the IPAP setting.

• ▶ Reply

▶ Reply to Discussion

• ‹ Previous
• 1
• 2
• 3
• 4
• Next ›
• Page