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  • How do I get the most out of my initial appointment?

    Hi all,

    I have just been diagnosed and am on a waiting list for a trial of CPAP. I haven't got a date for my meeting yet but want to be prepared. How do I get the most out of the meeting and what questions and help should I be asking for?

    Thanks,

    Mike

  • #2
    First time

    HI Mike, I think the most important thing to do is --LISTEN. Take down the name of person you are talking to--so that you know who to ask for, if other meetings become needed, or if you need to call in some questions later. Anytime you talk to anyone--take down their name, so that you can refer to them if you need to later. Others on the forum will probably have some good advice about what to ask while there. Good Luck, Berneta

    Comment


    • #3
      Originally posted by windowleaper View Post
      Hi all,

      I have just been diagnosed and am on a waiting list for a trial of CPAP. I haven't got a date for my meeting yet but want to be prepared. How do I get the most out of the meeting and what questions and help should I be asking for?

      Thanks,

      Mike

      Prepare a list of questions before you go....

      Write down answers to the questions....

      Don't just nod your head, if they tell you something you do not understand have them explain it....

      Ask about timescales, follow ups, studies and post diagnosis checkups....
      Ask about types of machines, masks, humidifiers...

      Write down their list of standard equipment and then look it up on the web so you can ask mor ethe next time you go (if in fact you need to)...

      Don't think there are questions you can't ask..


      Last but not least, find out idf others on here have used the same sleep clinic and get their thoughts, find out about parking, public transport etc... so many helpful people around, you only havce to ask....

      Good Luck!
      Peter
      CPAP : Resmed S9 Escape
      MASK : Resmed Swift FX

      Comment


      • #4
        Thanks guys I really want to get the most out of treatment so your comments are welcome. I will do a new post asking about the York clinic which is in the York district hospital.

        Comment


        • #5
          Mask! Mask Mask!

          Hi ledgejumper

          Do you sleep with your mouth open or closed - usually, typically, most?

          Mouth open = full face mask. Closed = nasal mask.

          Trying the mask on in a sitting position is virtually a waste of time - unless you sleep sitting up, of course.

          They say, " Here's your machine and this is your mask and it goes on like this." and they start the machine and you are hit with the full force of whatever - usually 10 cm - pressure and you say, " Arghhhh! I can't breathe" and the rest gets blurred.

          Get them to show you the mask withouit the hose attached. Ask about it, how to adjust it, what others do they have? Only when you are comfortable with the mask let them attach the hose and blast you. Try the first blasts without the mask strapped on - just hold it to your face. Get used, as far as you can, to breathing compressed air, never mind the mask leaks. When you aremore comfortable wih breathing compressed air, go back to how to adjust the mask, get them to adjust it so it does not leak while you breathe. Do everything you can to do that part lying down NOT sitting up.

          Mask! MAsk! MAsk! RTead this forum to know that mask isthepart that trips us up over and over - so give lots of attention to - that's right! - the mask.

          Good luck!

          TF
          Respironics REMstar 'M' Series APAP.
          Resmed Mirage 'Quattro FX' Full Face Mask with a 'Quattro' headgear.

          Comment


          • #6
            I got my appointment letter this morning and it's a little over three weeks away. It says that the trial is for a week then with a follow up appointment.

            What is the trial for? Is it to determine if works for me or to try and get the set up right? A week doesn't sound long enough to me to determine if works as I have seen on this forum that it takes people a while to get used to the machine and find the right mask.

            What will the sleep clinic monitor? I understand that the machines record data.

            Thanks again chaps.

            Mike

            Comment


            • #7
              Originally posted by windowleaper View Post
              I got my appointment letter this morning and it's a little over three weeks away. It says that the trial is for a week then with a follow up appointment.

              What is the trial for? Is it to determine if works for me or to try and get the set up right? A week doesn't sound long enough to me to determine if works as I have seen on this forum that it takes people a while to get used to the machine and find the right mask.

              What will the sleep clinic monitor? I understand that the machines record data.

              Thanks again chaps.

              Mike
              Hi Mike

              Yes, it does take some people a while to get used to it - I am still getting used ti it myself - however, a single nights use of about 4 hours made such a big difference to me for the entire next day, that I knew it would work for me, and I should make every effort to get used to it. In fact my wife was totally opposed to my wearing at all , but she could feel the difference herself as a) since I didn't snore when wearing the device, she herself was able to sleep well after a long time. and b) she could see the difference in my approach to life the next morning and she withdrew all her objections.
              IN fact my own consultant asked me to take the CPAP trial in lieu of the sleep test, but we were so opposed to wearing the mask at that stage - later the OSA was confirmed and there was no option but to wear the mask. Within a week pof starting the CPAP, I was quite well established on a normal sleep routine, even though I only used it for about 4 hrs a night in the first week.


              The sleep clinic apparently monitors among other things how many times you wake up and go back to sleep, and apparently also the oxygenation rate or something - in my case they said the probe came off during the night, and they couldn't come up with any readings for this. That's all I know judging from the report they gave me.

              Hope this helps.

              Comment


              • #8
                You will probably be given an APAP machine for the first week. This adjusts to your needs and will raise or lower the pressure according to your apnoeas. When you take this back after a week they will be able to take the readings and supply you with a CPAP that you get to take home and keep for ever. This will then be set at your optimum level.
                If they do not give you a humidifier it might help to ask for one as they really make it a nicer experience and it is gentler on your airways and lungs.
                You could also ask to try both a full face and a nasal mask so that you can play with both at home to decide which suits you best.

                Good luck!
                Lorraine
                APAP: F & P Iconaax auto
                Masks: Resmed Swift FX, Sleep Weaver, Mirage Liberty and most other makes and models.

                Comment


                • #9
                  Hmmmmm!

                  Hi ledgejumper

                  I wonder if you are asking all these questions because you are information hungry or because you are worried/concerned/scared.

                  My concen is that you seem to be up-tight - understandaly so - but that is the worst possible way to approach CPAP. Cool, calm, relaxed and with a positive attitude will get you much further with CPAP than a ton of information and questions answered.

                  We all start out pretty damned ignorant about OSA and CPAP and it's OK to stay that way. The trick of CPAP is getting the right-mask-for-you fitting comfortably and and without leaks. The rest is acedemic.

                  Comfortable and no leaks will keep you busy.

                  Having said all that - this is a great place to ask questions.

                  TF
                  Respironics REMstar 'M' Series APAP.
                  Resmed Mirage 'Quattro FX' Full Face Mask with a 'Quattro' headgear.

                  Comment


                  • #10
                    Thank you for your concern but I am hungry not uptight. As my thread suggests I want to get the most out of this and being informed is the best way I can prepare. The forum is great as it is balanced with positive as well as some bad experiences. I now know that some people take to it like water whilst others take a while so now I am prepared for all possibilities.

                    I do not look forward to CPAP, who would? But I do look forward to the chance of an improved standard of life and health.

                    You have to remember I knew very little of this 2 weeks ago so I am information hungry.

                    Thanks for all the responses.

                    Comment


                    • #11
                      Hi TF,

                      Hungry! I feel the best way to get the most out of things is to be prepared also it is just the way I am wired. Like when you buy a car you get on the tinter web and you look up how fast it goes and what knobs and tech it has on it.

                      I am pretty much there anyway now as I understand that everyone is different and that a lot of success is down to trial and error. This is top information as I am not expecting a miracle and I wont get frustrated either. I do look forward to the chance of better health and an improved standard of life though.

                      I am sure I will have more questions once I have a rig though.

                      thanks

                      Comment


                      • #12
                        Originally posted by windowleaper View Post
                        Hi TF,

                        Hungry! I feel the best way to get the most out of things is to be prepared also it is just the way I am wired. Like when you buy a car you get on the tinter web and you look up how fast it goes and what knobs and tech it has on it.

                        I am pretty much there anyway now as I understand that everyone is different and that a lot of success is down to trial and error. This is top information as I am not expecting a miracle and I wont get frustrated either. I do look forward to the chance of better health and an improved standard of life though.

                        I am sure I will have more questions once I have a rig though.

                        thanks

                        Good attitude, you will go far....
                        Peter
                        CPAP : Resmed S9 Escape
                        MASK : Resmed Swift FX

                        Comment


                        • #13
                          Oh yes you will !

                          Hi windowleaper

                          I just love your bold assertion - "This is top information as I am not expecting a miracle and I wont get frustrated either."

                          I encourage you to expect a miracle - good PAPing truly feels miraculous.

                          I encourage you to anticipate frustration - the path to the lord, sorry, good PAPing, has many twists and turns. A positive attitude helps deal with the frustrations.

                          My Monday night was a nine hour miracle and last night a three session frustraton.

                          TF
                          Respironics REMstar 'M' Series APAP.
                          Resmed Mirage 'Quattro FX' Full Face Mask with a 'Quattro' headgear.

                          Comment


                          • #14
                            I know how you feel

                            I have my first appt at the Bristol sleep clinic next monday for set up of cpap for cpap trial, as a new initiative they are having a group appt. I too am hungry for information as I am less anxious that way and feel quite chilled out about it all now. Looking forward to being able to get some quality sleep and not be so terribly tired in the day. Anyone else going to Bristol sleep clinic on Oct 11th, would be nice if I happened to meet someone else from the group here!

                            Comment


                            • #15
                              I'm with the group that says it can be miraculous! - I can honestly say that getting my CPAP machine 9 years ago changed my life - suddenly I could stay awake through the day, watch a full film, drive without thinking I might fall asleep any time, have the energy to get out and enjoy life again. If you are struggling now with any of that, it can be a wonderful experience.

                              As the other say though, it can also have its frustrations...leaky squeaky masks, rainout (you will understand that when you experience it!), finding that your CPAP machine is now the majority of your hand baggage when you fly, realising when you are out that you can't just decide to stay over somewhere because you didn't bring your machine...

                              I am guessing you will have found the forums useful building up to your sleep clinic...don't forget to tell the others there about the forum!

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