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My CPAP Experience - I
I have copied the following here from my personal blog. It has been lightly edited but is mostly the way I wrote it on March 7, 2007 after I had completed my second sleep study or Titration test. I am posting it here to capture how I was feeling before starting CPAP treatment.
After 18 months, or so, of weight gain, loss of drive to do just about anything, and a complete lack of energy, I awoke one night in January gasping for air, scaring the hell out of both my wife and myself. I had long suspected I suffered from sleep apnea (possibly even since childhood) but this got me to actually do something about it. I saw my doctor, he referred me to a sleep center, and I had a sleep study done. They confirmed that indeed I do suffer from obstructive sleep apnea and I was back two weeks later for a CPAP Titration test. Which is really the same as a sleep study with the addition of a CPAP machine to assist your breathing.
I am now awaiting the results of the CPAP Titration test. I will then visit my doctor. He will, in all likelihood, prescribe a CPAP machine for me. I will then visit a medical supply store, purchase such a machine, and sleep with it for the rest of my life. I can't wait. <-- no sarcasm intended.
For more than a year now I have increasingly felt like another person living in my body. Moodiness, lack of energy and drive, irritability, no interest in things I used to enjoy, and lately even memory loss and inability to concentrate. I just want to be me again. If that means I have to sleep with a machine forcing air into my lungs then I welcome it.
Update: Reading this now, Christmas 2008, I can still remember the frustration during the few weeks I waited after my Titration test before I saw my doctor. When I left my family doctor with a prescription for a CPAP machine I called around and found the medical supply company that stayed open latest and went straight there to pick up my new equipment. There was more frustration to come, followed by great satisfaction but I will get into that in a later post.
After 18 months, or so, of weight gain, loss of drive to do just about anything, and a complete lack of energy, I awoke one night in January gasping for air, scaring the hell out of both my wife and myself. I had long suspected I suffered from sleep apnea (possibly even since childhood) but this got me to actually do something about it. I saw my doctor, he referred me to a sleep center, and I had a sleep study done. They confirmed that indeed I do suffer from obstructive sleep apnea and I was back two weeks later for a CPAP Titration test. Which is really the same as a sleep study with the addition of a CPAP machine to assist your breathing.
I am now awaiting the results of the CPAP Titration test. I will then visit my doctor. He will, in all likelihood, prescribe a CPAP machine for me. I will then visit a medical supply store, purchase such a machine, and sleep with it for the rest of my life. I can't wait. <-- no sarcasm intended.
For more than a year now I have increasingly felt like another person living in my body. Moodiness, lack of energy and drive, irritability, no interest in things I used to enjoy, and lately even memory loss and inability to concentrate. I just want to be me again. If that means I have to sleep with a machine forcing air into my lungs then I welcome it.
Update: Reading this now, Christmas 2008, I can still remember the frustration during the few weeks I waited after my Titration test before I saw my doctor. When I left my family doctor with a prescription for a CPAP machine I called around and found the medical supply company that stayed open latest and went straight there to pick up my new equipment. There was more frustration to come, followed by great satisfaction but I will get into that in a later post.
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Replies to This Discussion
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Permalink Reply by Melodie on
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Jess,
I, too, had more than likely had sleep apnea most of my life and just didn't know it. My docs had tried to get me to go for a sleep study back in the late 80's, but back then you had to stay the whole weekend and my job required me to travel quite often. Therefore I never had it done until this year, 2008, when my Pulmonologist stated that even though he had me on oxygen, I was still not getting enough - so he ordered a sleep study and I was immediately put on a C-PAP with a heated humidifier and an oxygen bleed - as I also have emphysema and require the oxygen. After 1 month on the C-PAP, he ordered another sleep study as I still was not getting the benefits he had hoped for. Turns out that I have "central" sleep apnea and my brain doesn't tell my body when to breathe, so I am now on a Bi-PAP Auto SV with heated humidifier and an oxygen bleed of 4 liters per minute. I am FINALLY able to get the oxygen my body requires and also able to sleep soundly and more restfully. It took a total of (3) sleep studies to get all this determined and me fitted with the ResMed Mirage Swift II Nasal Pillows. I cannot endure a face mask, as I am claustrophobic, but the nasal pillows work great for me!
I didn't have to go out and purchase my own equipment, as my Pulmonologist ordered it through my oxygen supplier and my insurance pays for the Bi-PAP and all monthly supplies that you are allotted. In case anyone doesn't know this - you are allowed to receive monthly supplies for your equipment. In my case, the supplier sent a registered Respiratory Therapist to bring my device and she instructed me on how to use it, clean it (and how often and with what), and she had me wear if for a little bit while she was in my home to be sure I had a good fit and was comfortable with the device and understood everything she had told me. I think that this is necessary so that the patient fully understands "how" to use the equipment, clean it, how often to clean it and what specifically to clean it with. Also I would never have known that I was able to get supplies at no cost every month!
I currently utilize a Respironics Bi-PAP Auto SV unit with heated humidifier, which you need the heated humidifier to keep your airways and nose from getting dried out. Not everyone is aware of this, but should be. Also you should clean your mask and humidifier EVERY SINGLE DAY or you could get very sick very quickly from germs building up within the mask and humidifier.
Hope this has been helpful to someone. I will watch other discussions to see what else I can learn and also to see if I can help anyone else with what knowledge I have gained through my own experience and through my physician and supplier.
Regards,
Melodie Aultman-Morris
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Permalink Reply by sleepycarol on
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Supplies are not necessarily free for everyone. Usually the DME's follow Medicare and your insurance guidelines on how often you get supplies. The majority of people will have to meet their insurances requirements of DME equipment guidelines on payment -- deductibles, copays, that type of thing. I think, in my own personal experience, you do not need supplies as often as they recommend -- thus costing the insurance and Medicare and Medicaid money. I have used the same hose that I initially received with my machine in August of 2007. I have a back up hose that is still sealed in the package. If and when I need it I have it -- but why should I keep getting new ones if the old one is still working? Same thing with the grey filters. Wash and dry them and they should last longer than the replacement recommendation. I DO change the white filter regularly -- but have found it is more cost conservative to buy them on eBay and pass on the DME. I purchase 12 at a time and save. Masks and seals will last a lot longer than the allowed replacements and if taken care of will last for a year or longer in my experience.
As far as cleaning requirements go -- I am very lax on cleaning. I wash my mask every few months --yep every few months. I was the pillows about once a month. I use the Headrest and love it. Easy to take apart and clean. In the beginning I used a HC 431 full face mask. I didn't take it apart to clean it but swooshed it around hot soapy water (without the headgear) and let it dry. I DO wash my face before masking up for the night. I only use distilled water in my humidifier and so just top it off every night. I have NEVER taken it apart to clean it -- just rinse it out occassionally. I am just as healthy now as I was before cpap.
I think everyone needs to clean their equipment as they see fit. I am in a hurry in the mornings to get ready for work and when I get home I don't remember to do it -- doesn't bother me in the least. For others, I am sure they have a need to clean more often -- which is okay too. To each his own when it comes to cleaning.
In the summer, I do NOT use the humidifier at all -- and in fact disconnect it from my machine totally. I don't need nor want the extra humidity. Since I live in the midwest and it has gotten colder here and the heat is on I have put the humidifer back on and have it in either pass over mode (where the water is not heated and the air just blows over the water and picks up what it can) or at a very low setting. When the humidifier is turned up I feel like I can't breathe -- I have asthma and even rainy days can be problematic from me due to humidity issues. Each user has to experiment, in my own opinion, on what works best for them.
I am glad that you have found what works best for you Melodie. This will enhance your therapy and make it more beneficial for you.
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sleepycarol said:Supplies are not necessarily free for everyone. Usually the DME's follow Medicare and your insurance guidelines on how often you get supplies. The majority of people will have to meet their insurances requirements of DME equipment guidelines on payment -- deductibles, copays, that type of thing. I think, in my own personal experience, you do not need supplies as often as they recommend -- thus costing the insurance and Medicare and Medicaid money. I have used the same hose that I initially received with my machine in August of 2007. I have a back up hose that is still sealed in the package. If and when I need it I have it -- but why should I keep getting new ones if the old one is still working? Same thing with the grey filters. Wash and dry them and they should last longer than the replacement recommendation. I DO change the white filter regularly -- but have found it is more cost conservative to buy them on eBay and pass on the DME. I purchase 12 at a time and save. Masks and seals will last a lot longer than the allowed replacements and if taken care of will last for a year or longer in my experience.
As far as cleaning requirements go -- I am very lax on cleaning. I wash my mask every few months --yep every few months. I was the pillows about once a month. I use the Headrest and love it. Easy to take apart and clean. In the beginning I used a HC 431 full face mask. I didn't take it apart to clean it but swooshed it around hot soapy water (without the headgear) and let it dry. I DO wash my face before masking up for the night. I only use distilled water in my humidifier and so just top it off every night. I have NEVER taken it apart to clean it -- just rinse it out occassionally. I am just as healthy now as I was before cpap.
I think everyone needs to clean their equipment as they see fit. I am in a hurry in the mornings to get ready for work and when I get home I don't remember to do it -- doesn't bother me in the least. For others, I am sure they have a need to clean more often -- which is okay too. To each his own when it comes to cleaning.
In the summer, I do NOT use the humidifier at all -- and in fact disconnect it from my machine totally. I don't need nor want the extra humidity. Since I live in the midwest and it has gotten colder here and the heat is on I have put the humidifer back on and have it in either pass over mode (where the water is not heated and the air just blows over the water and picks up what it can) or at a very low setting. When the humidifier is turned up I feel like I can't breathe -- I have asthma and even rainy days can be problematic from me due to humidity issues. Each user has to experiment, in my own opinion, on what works best for them.
I am glad that you have found what works best for you Melodie. This will enhance your therapy and make it more beneficial for you.
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Carol,
I am glad that you have found what works for you. I have systemic lupus, so therefore I have basically no immune system and it is necessary for me to be sure to clean my equipment - meaning nasal pillows and humidifier - every day. I am also basically homebound, so it is not a time problem for me.
You are correct in that the supplies are not totally "free" per say, you DO have to meet your insurance deductibles FIRST, and then also your co-pays come into play. I normally meet my deductible in mid-January every years, as I have many other health problems. So for me, it is usually no charge after January. I do like to have plenty of supplies on hand, because of my lupus problems and I can get sick very easily. But each person should do what they feel works best for them personally.
I do feel that you should clean your equipment on a regular basis, just to keep from any bacteria that can build up quickly - especially if you are using the heat on the humidifier. My respiratory therapist stressed this to me.
Glad to see your reply and hope we can all be helpful to each other.
Kind regards,
Melodie
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Was wondering if Jess was still around for an update on his therapy.
I would love to hear how you are doing Jess, if you are still on board.
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