Want to Share My Experience (wasted year)

[PhilinOK]

Hey Everyone, I'm back. I feel like I need to share what happened with me. When I first got my CPAP five plus years ago I was all over this sight. I had a Smart Code and EncorePro and I monitored myself very closely. For years everything was always fine. Finally, the time came about a year and a half ago to get a new machine. Ahhh, the new Remstar M Series with SmartCard. You know, the one where you have to have a later version of EncorePro than I did. Since I had done so well, for so long, I didn't actively pursure the software. I just let it go, like they want you to. Prior to getting my new machine I had visited witht the sleep doc and he reiterated I should just go by how I feel. Well, I am in the early stages of starting to age, so it's not unusual to not always feel well. I just press on. Long Story short fast forward to 4 months ago. My blood pressure goes haywire and I end up in the hospital with swollen legs, etc. After a couple of days a cardiologist tells me it was a combination of CPAP and unchecked blood pressure and I am discharged. Months go by and my regular doc keeps changng blood pressure meds, and I feel like crap. I went to the doctor monthly and followed their instructions, thinking they knew what I should be doing. Finally, I realized it was sleep apnea as it got really bad a few weeks ago and I suggested a sleep study to the doctor. She agreed. After my sleep study, it turns out my pressure was way too low. They increased it 20%. That set my CPAP at a pressure of 20! It was crazy and started causing me to swallow air. So I immediately start pressing the doc for an APAP, and hesitantly he agreed. I won't go through all the insurance BS in this post, but I finally got my new machine today! I am the proud owner of a new PR System One APAP. I look forward to my first night, and I thank everyone thaat reviewed and helped me to decide on the machine.

The lesson I learned is that I will find the software, and I will NEVER EVER stop monitoring myself. Everyone should do this, because I willl never get that six to twelve months of my life back. This game these DME's, Doctor's, and Insurance Companies are playing with us and our monitoring, for their profit, have got to stop. It is just not right. OK, I'll get of my soap box, LOL.

[Julie]

This is interesting, because I just learned something this week. My BP has always been on the lowish side, except for when I developed OSA and a while afterward. It's now normal or low again, and sometimes quite low, and I started to do some research and found out that if your diastolic (lower number) is 'too' low, that can be almost as bad as your systolic (high) number being too high, so it's something I will watch out for now, and not just think I'm doing great because my BP is 'low'!

[kteague]

Thanks for sharing your experience. Hopefully it will serve as a warning so others can avoid your experience. Glad to hear you are getting on track again and hope you make great strides in regaining your health.
Kathy

[BleepingBeauty]

Hey Everyone, I'm back. I feel like I need to share what happened with me. When I first got my CPAP five plus years ago I was all over this sight. I had a Smart Code and EncorePro and I monitored myself very closely. For years everything was always fine. Finally, the time came about a year and a half ago to get a new machine. Ahhh, the new Remstar M Series with SmartCard. You know, the one where you have to have a later version of EncorePro than I did. Since I had done so well, for so long, I didn't actively pursure the software. I just let it go, like they want you to. Prior to getting my new machine I had visited witht the sleep doc and he reiterated I should just go by how I feel. Well, I am in the early stages of starting to age, so it's not unusual to not always feel well. I just press on. Long Story short fast forward to 4 months ago. My blood pressure goes haywire and I end up in the hospital with swollen legs, etc. After a couple of days a cardiologist tells me it was a combination of CPAP and unchecked blood pressure and I am discharged. Months go by and my regular doc keeps changng blood pressure meds, and I feel like crap. I went to the doctor monthly and followed their instructions, thinking they knew what I should be doing. Finally, I realized it was sleep apnea as it got really bad a few weeks ago and I suggested a sleep study to the doctor. She agreed. After my sleep study, it turns out my pressure was way too low. They increased it 20%. That set my CPAP at a pressure of 20! It was crazy and started causing me to swallow air. So I immediately start pressing the doc for an APAP, and hesitantly he agreed. I won't go through all the insurance BS in this post, but I finally got my new machine today! I am the proud owner of a new PR System One APAP. I look forward to my first night, and I thank everyone thaat reviewed and helped me to decide on the machine.

The lesson I learned is that I will find the software, and I will NEVER EVER stop monitoring myself. Everyone should do this, because I willl never get that six to twelve months of my life back. This game these DME's, Doctor's, and Insurance Companies are playing with us and our monitoring, for their profit, have got to stop. It is just not right. OK, I'll get of my soap box, LOL.

Hi, Phil, and welcome back.

Sorry to hear about your rough year. But I have to ask about what I bolded above. The cardiologist said your use of CPAP somehow contributed to your BP problem?

I'll wish you (and all the other PR1 users) luck on finding the software soon.

[PhilinOK]

The way I understand it, and I really don't fully understand it, when your blood pressure is high - especially excessively high, and your are using CPAP that is not fully working - you are still having apneas and your O2 levels are going down, this causes an additional increase in blood pressure that somehow causes you to begin retaining water. That's about the best I understand it. The point is to keep taking your BP meds and keep it checked - and keep your CPAP treatment in check, or it can really mess you up and/or lead to you stroking out. There was something else about the right side of the heart and additonal pressure, but I am not sure.

My blood pressure had always been a little high, but right around the time it started going up is when I started not feeling as good. I am not so sure that because I began to have apneas again that that is what raised my blood pressure initially.

I am sure someone who knows more about it can explain it better. I was kinda doped up in the hospital so I don't remember the cardiologists explanation very well, and she did not speak very good English. When I asked my regular doctor about she made a sketch and explained it about like I did above.

Sorry I don't have better details.

[PhilinOK]

Any other info on Encore Pro v2.2 or v2.1 is appreciated.

[Judy R]

I'm so sorry to hear you have had such a scare. I have high blood pressure too, I know how scary it can be. I'm so glad to hear that you are doing better, and that you've got a new machine. I wish you all of the best. Please keep us updated on how you are doing.

[BleepingBeauty]

The way I understand it, and I really don't fully understand it, when your blood pressure is high - especially excessively high, and your are using CPAP that is not fully working - you are still having apneas and your O2 levels are going down, this causes an additional increase in blood pressure that somehow causes you to begin retaining water. That's about the best I understand it. The point is to keep taking your BP meds and keep it checked - and keep your CPAP treatment in check, or it can really mess you up and/or lead to you stroking out. There was something else about the right side of the heart and additonal pressure, but I am not sure.

My blood pressure had always been a little high, but right around the time it started going up is when I started not feeling as good. I am not so sure that because I began to have apneas again that that is what raised my blood pressure initially.

I am sure someone who knows more about it can explain it better. I was kinda doped up in the hospital so I don't remember the cardiologists explanation very well, and she did not speak very good English. When I asked my regular doctor about she made a sketch and explained it about like I did above.

Sorry I don't have better details.

Thanks for the clarification, Phil. I guess I wasn't clear on the xPAP not meeting your needs prior to your BP going haywire.

While most of us do think it's important to go by how you feel when assessing how therapy is going, we also realize how important it is to monitor our data. In that regard, I really do hope all the PR1 users are able to get the software soon.

P.S. It was nice to see you in the chatroom last night.

[Komodo]

The way I understand it, and I really don't fully understand it, when your blood pressure is high - especially excessively high, and your are using CPAP that is not fully working - you are still having apneas and your O2 levels are going down, this causes an additional increase in blood pressure that somehow causes you to begin retaining water. That's about the best I understand it. The point is to keep taking your BP meds and keep it checked - and keep your CPAP treatment in check, or it can really mess you up and/or lead to you stroking out. There was something else about the right side of the heart and additonal pressure, but I am not sure.

My blood pressure had always been a little high, but right around the time it started going up is when I started not feeling as good. I am not so sure that because I began to have apneas again that that is what raised my blood pressure initially.

I am sure someone who knows more about it can explain it better. I was kinda doped up in the hospital so I don't remember the cardiologists explanation very well, and she did not speak very good English. When I asked my regular doctor about she made a sketch and explained it about like I did above.

Sorry I don't have better details.

You explained it VERY well! That's the exact same thing that I went through! Only difference is that none of the doc's thought of OSA. The Cardio guy wanted to operate because of the heart swelling, and sent me to a Pulmonoligist (because of my COPD) to clear me for the surgery. HE was the one who spotted the apnea, as soon as I walked into his office!

[btesterman]

I just had my titration and met with my doctor's nurse practitioner (who was great) who went over everything, answered my questions etc. but then he sent in a tech to write the Rx for a machine. When I told him I wanted a machine that had full data capability he said that I couldn't get that information, that it was "MEDICAL" information and that HE would read the card..... (Did he think I was too stupid to interpret it or wasn't entitled to know the information????) He said I should go by how I FELT..... I am so thankful for this forum and I didn't let him intimidate me. I wasn't ugly about it but I'm sure I'm not his favorite patient at this point. It's my body, my health and I want to know what is going on! Thank you for sharing - even more reason to pursue the machine that I want!

[Muse-Inc]

I just had my titration and met with my doctor's nurse practitioner (who was great) who went over everything, answered my questions etc. but then he sent in a tech to write the Rx for a machine. When I told him I wanted a machine that had full data capability he said that I couldn't get that information, that it was "MEDICAL" information and that HE would read the card..... (Did he think I was too stupid to interpret it or wasn't entitled to know the information????) He said I should go by how I FELT..... I am so thankful for this forum and I didn't let him intimidate me. I wasn't ugly about it but I'm sure I'm not his favorite patient at this point. It's my body, my health and I want to know what is going on! Thank you for sharing - even more reason to pursue the machine that I want!

Good for you! Now just make sure he really did write the script for a full data machine.

[rested gal]

My list of machines that record "full data" (AHI and leak info) and those that don't -- updated through Oct. 2009:
viewtopic.php?p=307168#p307168

DME might not understand what "Full data" is.
viewtopic.php?p=344265#p344265