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    • #27811
      Colleen Steele
      Keymaster

      New member, @azad would like to know more about CPAP. He is not familiar with it and I know several of you can provide some insight.

      We have discussed CPAP a few times but I don’t believe we made it an official topic yet, so I have started one.

    • #27831
      Dawn
      Participant

      Hi Colleen, and @azad. I use a cpap machine, and have for about four years. It took some getting used to, especially when I switched to a full face mask, but now I find it brings me a level of ‘security’ knowing I shouldn’t need to worry about stopping breathing during the night.


      @azad
      , cpap is Continuous Positive Airway Pressure. The machine blows air through your nose and/or mouth (which it does depends on which headgear you use) while you are sleeping, and it’s used for various reasons. I use it for sleep apnea, which means I would stop breathing numerous times during the night before I started using the machine. It can cause all sorts of health issues when your breathing stops repeatedly.

      The cpap machine uses a steady air pressure, set by your dr, or can be set to ‘ramp up’ so there is less pressure at first, then more when you’re actually sleeping. There are also Bi-Pap machines, which I believe lessen the air pressure on your breathing out so that it’s more comfortable for those who find the constant air pressure a bit uncomfortable.

      Hope that helps @azad with at least some of your questions.

    • #27832
      Colleen Steele
      Keymaster

      @dawnt thank you for responding to @azad. My husband has used Cpap for sleep apnea for many years now. He said it changed his life because so many things improved when he started using it…less headaches, no more acid reflux, snoring stopped and most important, he no longer had to worry about irregular breathing while sleeping.

      I don’t know if all systems offer this but his has a chip in it. He takes it to appointments for his doctor to read. It shows how well or not Cpap is working for him and if the machine is having any issues.

      My doctor thinks I have sleep apnea too and my husband has been trying to convince me to use Cpap. I’m being stubborn about it.

    • #27841
      Dawn
      Participant

      @colleensteele, if you have any indications that you have sleep apnea I would definitely consider being tested. It makes such a good difference. During my testing they found my heartrate was dropping to a dangerously low rate due to the lapses in breathing, a slow enough rate that I could have died in my sleep. Aside from that, for every hour I ‘thought’ I was sleeping, due to the apnea/waking instances, I was actually getting closer to 20 minutes of sleep each hour. It wasn’t good quality sleep, obviously. I put off testing at first too, but truly recommend it to anyone who thinks they may have apnea.

    • #27851
      Jimi Mcintosh
      Participant

      CPAP for over 7 years, the proper fitting mask is very important. Use only distilled water to reduce or prevent mold buildup. Clean frequently. Try to shop for supplies on eBay and Amazon, most suppliers will rob you or ship things without your requesting them. Use can become additive. BPAP users claim that they work better and yields a more restful sleep. Make sure your pulmonologist is familiar with PH and will track the CPAP usage

    • #27854

      Yes and I also use 2 liters of oxygen through my CPAP. I sleep better. I am a mouth breathers so I use the Phillips Respironics machine and the DreamWear mask. By trial and error I discovered the best mask for me.

    • #27999
      Elaine Wanhala
      Participant

      I have been using a CPAP machine for almost 5 years. It works well for me. I have the Phillips Respironic machine also with a mask that covers my nose. I don’t even feel the pressure that is blowing into my nose and throat. The best thing about it for me, is that I don’t get up to go to the bathroom at night. Some nights I sleep for 9 or 10 hours. Usually more like 7 or 8 though. The sleep lab where I was tested keeps track of how many days that I use it. It is paid for by Medicare and I think they will not pay if you don’t use it a certain percentage of the time. Also all of my supplies are paid for by Medicare. The hose and headgear and water reservoir. It is important to buy and use distilled water as someone else mentioned. I also need O2 while sleeping and you can hook up your hose into the CPAP machine. I would stongly recommend. You know you are helping your organs by getting enough O2 at night!

    • #28009
      Colleen Steele
      Keymaster

      @dawnt I know that you and my husband are right and I need to follow-up with respiratory about getting on Cpap. I have other issues going on that my husband insists will improve if I do this.

    • #28010
      Colleen Steele
      Keymaster

      @jimi I laughed when you mentioned how use can become addictive. My husband would wear his 24/7 if he could.

      You and @elaine-wanhala provided important tips. It is so important to make sure your mask fits properly and use distilled water.

      Thank you to everyone who has participated in this discussion. You have been very helpful.

    • #28029
      Jen Cueva
      Moderator

      Excellent discussion here on this important topic. @colleensteele, have you had a sleep study? My hubby is like you, he could probably benefit from using a CPAP, but he has not been tested. It would probably help both of our sleep, hehe.

    • #28039
      Colleen Steele
      Keymaster

      One of our new members, @irinesmith64 has the following question:

      Sleeping is difficult for me at night considering inquiring for a sleeper. I have a consultation for sleep apnea coming up this week so we’ll see what happens there.

    • #28044
      Dawn
      Participant

      I appreciate others bringing up the things I missed, as in using distilled water only and the importance of cleaning the machine regularly and having a good fitting mask. If you’re not comfortable with the mask you aren’t going to use the cpap consistently. I also use oxygen on my cpap, 4 lpm. I use the philips respironics machine with the dreamwear full face mask. Once I got used to the full face mask I really liked it. I used to give myself one night a week that I could skip using the cpap, but not any longer. When I have the cpap on, I feel like I have the easiest breathing of my entire day. Even if I crawl into bed for a nap I use the cpap!

    • #28048
      Jen Cueva
      Moderator

      Awesome tips. I also want to mention; distilled water is what we should also use in the humidifier bottles on our oxygen concentrators.


      @dawnt
      , your experience sounds like many who I have heard from. It took some time, but once they noticed the benefits, it was part of their nightly routine. Thanks for sharing that, too.


      @irinesmith64
      , good luck with your consult. Is this a sleep study or your first appointment with the sleep apnea center?

    • #28070
      Darla McCollim
      Participant

      My husband has used CPAP for years and loves it. I have been resistant for years to even think about it. Over night study showed my O2 dropped into the 50s and that led to my PH diagnosis. I can’t seem to get past the apparatus on my face and I fight with it all night. It is at such a high pressure (15-18) that it constantly distracts me. I know it’s helping to keep me alive but I really don’t like it. Hoping for the day it just seems natural.

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