Hi Guys.
It has been a long time, almost 5 weeks since I have posted. A case of my mentally struggling with what is happening and trying to get myself into a position where I can fight back and take control of my CPAP Treatment. I am sorry I haven't posted sooner or kept you updated as to why I haven't posted, I guess simply fear and hiding from the issue until i saw the Specialist and embarrassment of failing. I think I just had to hide....... though I have checked the board and been reading and learning as much as i can.
At the time of posting last, I was basically having CA's and could not fall asleep and as such i needed to discuss this and get it sorted out.
So I made an appointment at my Specialist Centre but stupid me made an appointment with the Cardiac Specialist not the Lung/ Respitory Specialist. Given that I was in there he did a full battery of tests and said that he can see significant improvement in all tests, EKG etc. He is delighted with how things are going.
It meant that it took another 3 weeks or so to get into the Respitory Specialist, which I did yesterday. I took him print outs of the Oscar Reports and also a Dongle so he could see them on his Computer.
Now a week ago, I go an "Update" Prescription stating that the final prescription differed from the initial prescription, rather than a pressure of 14, the max pressure should be 12.
During yesterdays appointment the RS stated or expressed the following:
a. That I should have purchased a FIXED machine because the pressure should be set at 12. I explained my reasons for buying an auto but he was not overly happy.
b. He wants me to start at 8 and make the machine "fixed" and use a 20 minute ramp from 8 to 12.
c. I explained my extreme concern about the CA and how I cannot fall asleep because just as i do, i go into an apnea and I wake up. It is hard to remember everything he said or even to repeat it accurately, but i will try. His points are:
i. He looked at the Hospital Titration Report and there was only a few CA's throughout the evening. He stated he was not worried in that regard at all.
ii. He had seen the Cardio Report which was sent to him (From the office next door)
iii. He looked at all my concerns and basically, I had very few OSA's on a pressure of 12, in fact, although my evenings and time on treatment were short and broken, there was only 2 or 3 OSA events in over 4 hours of sleep time. So he said that the pressure of 12 is working perfectly.
iv. The CA's. Now he agrees they are CA's and he did get a bit technical and I can't remember some stuff but basically, all the CA's are BEFORE i fall asleep and basically, when I am asleep, the CA's all added up to under 1.9 events per hour. (He said that some are also sleep junk and movement.)
So basically, he feels the problem is treatment induced and he believes that my issue is falling asleep and bad habits. I have spent the last 8 months on a mattress in the back room so I lack sleep hygiene, watching TV before bed and all the usual bad aspects including drinking coffee and stuff like that. When i wake up, instead of going back to sleep I go to the toilet and then watch a bit more TV, where I should be going straight back to sleep and being on the treatment.
So last night I just did what i could, it was a very hot evening, we had endured a day of 43C heat and I was a bit uptight but did ok for a while, Tonight I will get on it longer an I am determined to get to sleep. I have started addressing all aspects of Sleep Hygiene. (I can see that he is probably correct about the sleep hygiene issues)
I set the machine to fixed and made a ramp setting of 20 minutes for 8 -12. Damn.... i didn't like that at all.
I changed it back to auto and started at 8.6 and an upper level of 12. ( i did 8.6 for a while then put it back to 8)
I wonder if i could handle a starting pressure of 12? Thats pretty high for a newbee first up but what are your thoughts? He did say he wanted the constant pressure and something about washing the air or something but that part I cannot fully recall.
SO that's what is happening, I just wanted to fill you in and explain where I have been, both physically and mentally. I have to get this stuff sorted out and get sleeping and getting therapy so any advice or information would be greatly appreciated. I do understand what the Resp Specialist was saying to me, i just have concerns about the way he is going around things, although, he is the expert.
He said to do what I am doing, focus on sleep hygiene, he WILL NOT prescribe any sleep meds but will put me onto a Sleep phycologist if i request further assistance. Unless i have any concerns or need assistance, he stated he does not need to see me for 4 months.
So that is where I am. I still feel i am lacking a Leader that I feel comfy in following, b but my gut tells me that I am in relatively safe hands.