Diary of Two Hoseheads
Peer coaching article # 21
Diary of a new hoser for the first 30 days from www.cpaptalk.com
By littlebaddow, Essex, England
Posted: Wed Feb 02, 2005 6:22 pm Post subject: Diary of a new hoser
When I was first diagnosed, I found this forum (cpaptalk.com) invaluable and it helped me a great deal to learn from the experiences and support of others. Without the advice so freely given I'm sure I would have found it even harder to cope. Thanks to you all. I kept a diary for the first few weeks and glanced back at it today. I'm now in week 10 and really beginning to feel the benefit, so the fear, uncertainty and discomfort of the first few weeks is becoming a more distant memory every day. I thought it might give others some hope & encouragement if they could see a few extracts from my diary. The story shows that for me this wasn't easy at first, there were setbacks, but it has been worth it. I hope it helps someone to read it.
Day 1 What a horrible experience. Lay awake for hours, got about 2 hours of very disturbed sleep then took mask off. Very uncomfortable.
Day 3 Couldn’t stand the mask, took it off after 10 minutes. Bunged up nose, felt like I was suffocating.
Day 5 Managed about 5 hours sleep with mask on, still very disturbed.
Day 6 Lay awake for about 2.5 hours before taking off mask, unable to sleep, felt like it was a constant struggle to breathe through the nose, though when took off mask could breathe no problem.
Day 8 Did not use. Took off mask after a few minutes, nose bunged up as soon as lay down.
Day 9 During the day, used mask for an hour whilst sleeping in arm chair, not too bad, woke up a couple of times with sudden exhalation though mouth. Night time, propped up on pillows to go to sleep in semi-sitting position. Slightly disturbed sleep for about 2.5 hours, then removed mask for rest of night. Mainly the noise keeping me awake.
Day 11 Just over 7.5 hours using mask. Sleep still a bit disturbed, especially early part of the night when still noticing the puffy cheek effect. Managed to lie down flat for part of the night. Had headache when I woke up during the night.
Day 12 Got the new mask today (Mirage vista). 7 hours before removing mask, still disturbed, though mask noticeably quieter. Puffy cheek effect not noticed yet with new mask. Much easier to lay down flat. Headache when woke up during the night.
Day 14 Got to sleep OK, still disturbed sleep. Woke up after about 4 hours, took a long time to get back to sleep, woke up after a couple of hours with partially blocked nose, removed mask then slept another couple of hours. No headache, noticed a bit of air leakage from mask and from mouth.
Day 17 Reasonable, slightly disturbed sleep, 6.5 hours until alarm went off! Day 19 7.5 hours, slightly disturbed sleep. Sore nose!
Day 21 6 hours with mask, only slightly disturbed.
Day 26 6.5 hours with mask then woke up & took it off, slept 2 more hours.
Day 29 8 hours, woke up 2 or 3 times
Day 31 Ouch, only 2.5 hours, then woke up with stuffy nose & coughing. Managed another hour then took mask off. Was a cold night and had heating on – perhaps too dry?
Day 32 New machine arrived today, autopap with heated humidifier. Wow, what a difference, 8 hours straight, no stuffiness. I won't bore you with any more. I'm now in week 10 & still have setbacks & a disturbed night, but usually manage 6 or 7 hours undisturbed sleep.
From early CPAP struggles to a two year anniversary (2005 to 2007)
(Anonymous, used with permission)
Background information. In my opinion, these experiences are not unusual for the new CPAP user. At the start, no one was managing my therapy, not even me. My family doctor was involved on the medical side, but not managing CPAP treatment; the large national Durable Medical Equipment (DME or Home Medical Equipment, HME) Respiratory Therapists (RT) were not managing my therapy and were giving me inadequate and even wrong treatment information, and I didn’t realize I needed a sleep doctor. When I finally found one, he advised on the medical side, but there was still no one to help with frequent equipment struggles.
Since I was on my own largely without the help of healthcare professionals, I took responsibility for managing my treatment. The best and almost only source of quality CPAP treatment information was from an online support group of other patients at www.cpaptalk.com Perhaps this approach is not optimal in the eyes of medical professionals, but it was necessary and successful. It would be better to partner with healthcare professionals, especially sleep technicians and respiratory therapists well qualified in CPAP treatment, but finding them is difficult and the healthcare system does not give the patient ready access to them. The poor quality of care offered by the large national DME in this tale seems to be not unusual, since similar experiences are reported by other patients as well. Although some patients find large national DMES to be helpful and with knowledgeable Respiratory Therapists, many do not.
Diary:
1. I think I am sleeping well. Since I’ve moved a lot through the years, I’ve had many primary care physicians. None of them suspected sleep apnea, in spite of my having a number of symptoms. When my current physician mentions it, I discount her suggestion since I still think I am sleeping well and don’t know the symptoms. After my undiagnosed sleep apnea reaches crisis proportions in my life and health, I again see my excellent family doctor who suggests a sleep study to rule out sleep apnea. I credit her with saving my life for suggesting a sleep study.
2. Since I have a lifelong fear of suffocation (probably because I have been mildly suffocating my whole sleeping life because of sleep apnea), my doctor suggests a diagnostic, baseline sleep study, an overnight study without using a CPAP mask and no titration (finding the right CPAP machine pressure). I find out months later that this was a very good decision because of my mask claustrophobia.
3. I wait about a month to get into the hospital sleep lab. The sleep tech is very professional, competent, and supportive, even spending extra time in the morning to show me some masks at my request. The sleep doctor produces a report in a week. I have very severe obstructive sleep apnea with an AHI (apnea - hypopnea index of events per hour) of 105. An AHI of above 30 is considered severe.
4. I deal fairly well with the emotional impact of having this diagnosis. I quickly read a couple of books about sleep apnea. I suggest an auto-adjusting (APAP) machine and heated humidifier to my doctor, and the doctor sends the prescription to the DME. The prescription falls into a black hole at the large national DME. No one contacts me. After two weeks, I attempt to find out what happened. The DME regional customer service says in effect “Don’t call us, we don’t know what happened, only the branch knows, the branch will call you, and we won’t give you the phone number of the branch so you can find out what happened; it’s against our policy.” The branch office never does call me. The DME is adding considerably to my stress. This is very frustrating, because I now know I have severe sleep apnea, feel absolutely terrible, but can’t start treatment. After I call them repeatedly over days, the DME regional customer service relents and gives me the branch number so I can discover they lost the prescription and start over again, asking the doctor’s office to fax it to the DME again. I call in another week, and they say I can pick up the machine.
5. Shortly after diagnosis, following my doctor’s advice, I visit an ENT specialist. I have a severely deviated septum and can barely breathe through one nostril. I decide to see how I will fare on CPAP therapy before deciding whether to have septoplasty. Later, I find that when my nose is working I can use nasal pillows; when it’s not working well, I can successfully use a full face mask and breathe partly through my mouth.
6. At the DME branch office, a 15 mile drive one-way, I’m shown an instructional video which doesn’t help since I get a different model machine. The senior RT tells me they have only three masks (nasal, full face, nasal pillows) but the best one for me, without finding out anything about my needs, is the nasal mask. She doesn’t explain the mask types. The nasal mask is the only one she uses on me. She “fits” it by plopping it on my face while I’m sitting up and turns on the machine. She gives me no preparation and little support. I’m frightened since this is the first time I’ve worn a mask under pressure and have a fear of suffocation. She seems unsure about setting up the machine, which doesn’t inspire my confidence in her, even though she is a senior RT. She gives no safety information. I’m so dazed by the experience and my fatigue that I barely absorb the usage instructions.
7. I get a good machine. It seems that the choice of a fully data capable APAP with exhalation relief is mostly dumb luck or good karma, since I don’t know much about machines and my family doctor may not know much about them. Since I haven’t been titrated, the doctor prescribes a pressure setting of 4 to 20 cmH20, the default setting of the machine. The machine is accurate, responsive, comfortable, quiet, and eventually, comforting. I set the exhalation relief at the easiest-to-exhale setting. Later, after using another straight CPAP machine for trips, I know I can do without exhalation relief, but use it because it’s comfortable. Without the smart machine (APAP with software capability), I wouldn’t have found a correct pressure setting, since later the lab titration study was inconclusive. The machine measures factors beyond compliance, such as apneas, hypopneas, flow limitation, leaks. I’m grateful for the SmartCard, first for downloads from the DME, and now because I have the software. Evaluating masks and leaks and finding the best, lowest overall pressure setting would have been impossible without APAP and the software.
8. I give up beverages with caffeine on first day of therapy, and continue, with some exceptions.
9. I have excellent adherence or compliance (wearing the mask and using the machine whenever in bed, asleep or awake) from the start, due to my determination based on knowledge of the severity of my OSA and personal health indicators from my physician and the risks I researched through TS Johnson’s book Sleep Apnea – The Phantom of the Night and web sites. Compliance was interrupted by equipment problems, not user resistance. This is a major victory for me because of my lifelong fear of suffocating and claustrophobia! At the start, I use the APAP for 4, 5, or 6 hours during a total sleep time of 7, 8, or 9 hours. By Day 9, I use APAP for the whole night’s sleep of 7 ½ hours. By Day 14, I use APAP and sleep for 11 hours. Subsequently, length and quality of sleep continues to be erratic for many months, but my compliance is excellent.
10. The pre-CPAP nightly troubled dreams of struggle and failure go away almost immediately. I soon have normal dreams.
11. By Day 7 of APAP therapy, even with a very leaky mask, excessive daytime sleepiness goes away! The need for daytime naps largely goes away, with exceptions when I sleep poorly due to equipment problems (humidifier, hose, mask, bed pillow).
12. I experiment by skipping a night on the machine. By Day 13, I learn that I feel better the next day when using APAP, even with all the discomfort! (with a few exceptions with severe equipment problems).
13. By Day 14, in spite of a leaky mask and rainout hose condensation, my AHI goes from the very Severe range on the sleep test to 14.5, close to the lower end of the Moderate range. By Day 41, in spite of the same leaky mask (with rainout fixed), my AHI is 6.9, in the Mild range, even without the benefit of daily downloads which would allow me to tweak mask fitting and pressures. Chances are, these numbers improved sooner than the days listed, but I don’t have the software to determine that.
14. By Day 14, the invisible, persistent, thick gray veil of constant daytime fatigue goes away! The zombie-like heavy fatigue never returns, but I’m sure it would return if I missed a night of CPAP. Gradually through 11 months, as my AHI improves, the lighter fatigue diminishes. After a bad night, I would start to be tired in the morning and continue tired all day. With a better AHI, I would be tired early afternoon. With a still better AHI, I wouldn’t get tired until evening. After a good night with an AHI of 5, I don’t get tired until bedtime and feel physical, emotional, and mental energy all day long. After 11 months, daytime fatigue is the exception rather than usual.
15. By Day 16, the need for nighttime bathroom trips (nocturia) ends!
16. A repeated stressor was prolonged and difficult struggles and hostility shown by the DME branch office merely to sign a HIPPA release form in order to get SmartCard printouts sent to my doctor. HIPPA was not new when these problems occurred. The branch office DME said in effect “you need to sign this form but we don’t have this form and we won’t get you this form, call this number in another state and get it yourself. The second office said, no, you don’t need this form. The first office said yes, you do need the form, but we still won’t give it to you and (angrily from the lead RT) why did you call the office number we gave you? And then, you have to talk to the regional manager and the form has to go to Legal in another state.” After days of struggle, I was able to sign the form.
Ten days after giving the SmartCard to the DME branch office, thanks to the doctor’s office (not the DME branch which still refuses to give me my own patient information), I finally get the eagerly awaited first software report, which seems like much too long to wait for feedback on the first days of therapy. By Day 23, after getting the first software report I could finally verify in the first critical 12 days of therapy, A) that the machine was providing different pressures, B) that improvement was underway, with a much lower AHI than when I was first tested in the sleep lab, C) that the mask leaks I felt were indeed significant. However, neither my doctor nor I could understand all of the report and the DME said they weren’t able to do any interpretation, referring me to my doctor.
17. By Day 23, I stop wrestling with the hose all night and learn effective hose management from www.cpap.com Answers section. The DME branch RT’s advice and machine manufacturer’s literature and photos show the hose hanging from the bed, pulling on the mask, causing leaks. I struggle to adjust to hose movement (pull on hose, under arm, over arm, under or over blanket) when changing sides. Following the online advice, I tie the hose to the headboard. It requires readjusting to new hose positions and movement, but the overhead position is much better.
18. By Day 24, I discover that the hospital sleep lab does mask fittings and have the nasal mask from the DME properly fitted by a hospital sleep technician, who knows what he is doing in contrast to the DME RT, while laying down on my side and back under CPAP pressure. He also instructs me in how to adjust the mask myself. The mask still leaks after fitting, but not as badly. With the initial leaky mask, the average time in large leak goes from 1 hour 35 minutes on Day 14 to 3 seconds on Day 41, due to a real mask fitting at the hospital sleep lab and solving rainout and bed pillow problems.
19. By Day 30, I discover PAPillows on www.cpaptalk.com and get delivery, greatly reducing aerophagia (swallowing air) because it keeps my chin from sinking to my chest. I ask four RTs and sleep technicians in two DMEs and a sleep lab for advice. They haven’t even heard of aerophagia and have no advice about how to eliminate it. In fact, the DME branch RT’s advice about using a soft pillow to prop up the ill-fitted mask contributes to aerophagia. I find information about it through www.cpap.com Answers. It takes 3 months of reading hundreds of posts to discover on www.cpaptalk.com that the machine pressure default setting of 4 to 20 cm H2O was both too high, causing aerophagia, and too low, causing a feeling of suffocation. Aerophagia disappears with a lower top pressure. (At that time, www.cpaptalk.com did not have the Our Collective Wisdom section, so it took reading a lot of posts from patients to find basic information.)
20. By Day 33, I discover a remedy for rainout (condensation in hose) on www.cpaptalk.com . I previously asked four respiratory therapists or sleep technicians in two DMEs and a hospital sleep lab for advice; they didn’t have any advice that worked. With international shipping and US customs, it takes until Day 69 to receive a heated hose from SleepZone in Australia and permanently eliminate rainout.
21. By 6 weeks, I am grateful that the hospital sleep lab lets me try on many brands and types of masks, while laying down under pressure, and advises me on the best one. (The DME offers only the one brand it sells.) I discover that a nasal mask doesn’t work for me because of facial relaxation when deeply asleep (discovered through my awareness of what I do “during sleep.”) By Day 46, I get delivery of a full face mask, although the large national DME customer service sent the wrong size; it took another few days to get the correct order. The DME RT provided no full face mask safety information (about regurgitation, asphyxiation, quick removal of a full face mask), but I learned that from Dr. Johnson’s book.
22. By 6 weeks, I get a nasal pillows mask, ordered online at www.cpap.com . Another RT at the DME branch said that nasal pillows damaged the nose and were a last resort (wrong information), and the DME and hospital sleep lab couldn’t order the brand I wanted. The nasal pillows mask has been the most successful and comfortable mask for me and at 10 months continues to contribute hugely to the success of my therapy. During the second year on CPAP, I use the full face mask because of persistent nasal congestion due to the deviated septum. Over the first 9 months, all three RTs at the DME branch repeatedly withheld information that they could special order other masks beyond their favored brand, even advising against an entire brand of mask that they didn’t routinely stock (no matter how well the brand is respected and how it fit my patient needs), and saying they couldn’t order replacement parts for a special order mask already ordered through them. It was essential to research masks on the Internet and hear from other users.
In case you’re wondering why I continue to use the large national DME, it’s because it’s the only one available on my insurance plan. As time goes on, I use www.cpap.com more and more, paying their reasonable prices out-of-pocket outside insurance, in order to avoid the poor treatment and emotional distress of dealing with the large national DME. For example, the DME pays $7 for a DC cable, marks it up to $60, and gives me a “discount” price of $50. www.cpap.com charges about $24 plus shipping for the same item. I haven’t tried a small, local DME (not part of a national chain) or a DME at a hospital or private sleep lab; perhaps some of them are better than the large national DMEs.
23. At end of 6 weeks, walking on good days (days following nights with fewer equipment problems) feels like an effort but is very beneficial, helps with insomnia.
24. By the end of 6 weeks, from Mike Moran’s The Seven Stages of CPAP, I have been through Denial, Realization, Diagnosis, Frustration, Immersion, and Ownership stages. Now I’m mostly in the last Inflation stage. From Perry Holzman’s What Is Feeling Good? I have been through Walking Dead and am still in Basic Treatment. At some point, my sense of humor returns.
25. By the end of 6 weeks, my blood pressure goes from high (140+/90 or more) almost all the time to borderline high half of the time and normal (120/80) half of the time, without medication. Due to an undetected wrong machine setting made by the RT, this was achieved with only 4 hours of therapy per night, even though I was using the machine all night.
26. By the end of about 9 weeks, I discover on www.cpaptalk.com that my insomnia could be due to a low setting of 4 cm H2O, leading to a subtle sense of suffocation at night and exhaustion during the day. Starting in the morning, it takes an entire day of repeated phone calls to the DME regional customer service and a 1½ hour wait at the DME branch to get the prescription changed (literally a 30 second process). The DME regional customer service first lost the doctor’s faxed prescription (as they lost my original prescription for a machine), but this time, they lost the prescription twice, requiring my calling the doctor twice, even though customer service assures me they have it in their computer system. I drive 15 miles to the branch to find that regional didn’t send it to the branch office (again), and the branch can’t get a call through to its own customer service. The branch suggests that I drive to yet another town to visit the doctor to physically pick up the prescription; I decline, hoping that they find it in their system. As I wait for 1 ½ hours approaching closing time because of their faulty organization, the lead RT tells me irritably that he can’t authorize overtime to reset my machine, even though I wasn’t requesting that. At the last minute before closing, they break their own rules and reset the machine presssure in 30 seconds without getting a prescription from regional. The same senior RT, who originally set up my machine, changes the pressure. After getting the pressure changed to a low setting of 6 cm H2O, insomnia largely disappeared.
Insomnia was not a problem before CPAP. An uncomfortable mask, rainout, venting on arms, hose problems make it hard to fall asleep initially and after awakening night after night in order to problem-solve. Equipment problems require that the user be aware while “sleeping” to detect problems. 30 or more straight nights of detective work tends to build a habit of light sleep and insomnia. (Periodic insomnia returns later. I finally discover it is caused by food sensitivities. If I avoid those foods, I have no insomnia.)
27. At some point fairly early in the therapy, I decide that this isn’t as simple as it seems, and talk to my doctor about a sleep lab titration study. The study is inconclusive, since I don’t sleep (a long story), and results in no prescribed pressure setting. I also visit a sleep doctor. It takes some months to find one and get an appointment. I show him my software printouts. He is of some help with the pressure, but not with the intricacies of equipment, so again, I feel that I’m on my own. I ask him to prescribe an overnight check of my oxygen levels using a recording pulse oximeter. That part of the therapy is working.
28. It takes me 10 weeks to discover through www.cpaptalk.com that there is a clinicians’ set up manual for the APAP machine. The DME senior RT withheld the manual and the fact that one existed when I got the machine. I get a manual though the Internet. Later, the lead RT at the DME threatens me for doing this. (When www.cpap.com sells a machine, they include both the clinician’s and user’s manuals.) When checking the machine settings for the first time, I am alarmed to discover that the DME senior RT set up the machine in an incorrect split study mode, delivering only 4 hours of APAP treatment per night. Due to her error, for the first 10 weeks of treatment, the machine was delivering only half the prescribed treatment, which led to my subtle feeling of suffocation and insomnia, since I was at a pressure of only 4cm H20 for half the night,not enough pressure to clear all the exhaled carbon dioxide from my mask. The DME senior RT made this error initially, and she repeated it when the pressure was changed 9 weeks later. The large national DME has no quality control procedures to detect errors in setting up a machine. Upon discovering her error, I correct the settings immediately and finally, after more than two months, start getting a full night of treatment. Then began 4 months of careful experimentation to find a correct pressure setting, using software, since the titration study was inconclusive (I didn’t sleep).
Had I not gotten a clinician’s manual (thanks to finding out on cpaptalk.com that they exist), the DME’s error would not have been detected by the DME or my doctors. I might have given in to the feelings of mild suffocation and lack of progress from only half a night’s therapy and given up on CPAP, as so many people do. Since I have an enlarged heart, on its way to congestive heart failure if untreated by CPAP, had I given up on CPAP, I might be dead by now. Concerned that other patients might be harmed by the RT’s lack of competence and DME’s lack of quality control, I file a complaint with JCAHO (The Joint Commission overseeing hospitals and DMEs) and politely meet with the lead RT, who does not even say “sorry this happened.” His focus is on being defensive and intimidating me for taking an active role in my therapy. I have no indication that he ever corrected the senior RT who twice made the error, and no indication that the large national DME ever corrected this lack of quality control and supervision.
29. I buy a card reader and the machine software online at www.cpap.com , since dealing with the DME for printouts and everything else is so difficult, and even hazardous.
30. At three months since the start of CPAP therapy, after only two weeks at the correct (full night) machine setting that I made, my AHI is 5 or below events per hour, in the normal range for people without OSA! My AHI consistently stays below 5 when using a nasal pillows mask, but is still in the Mild range when using a full face mask. At 11 months, although my AHI is 5, I am still searching for a better full face mask. In my opinion, it’s essential to have access to daily or frequent software or display readouts to monitor progress, adjust equipment, and pursue better equipment if necessary. The first 3 months of CPAP therapy felt like the longest in my life, and were very difficult, in terms of the equipment, dealing with the DME branch office, and finding good sources of CPAP treatment information. The best practical CPAP therapy information came from the experienced CPAP users on www.cpaptalk.com
31. After only 4 weeks at the correct, full night machine setting (14 weeks into therapy), perhaps sooner, my blood pressure returned to the normal range (120/80) for the first time in several years, without medication. At the same time, I went on a low salt diet. Some weeks later, after daily taking the OTC herbal remedy Carditone suggested by my doctor, my blood pressure reached the ideal range (115/70), without medication. (Consult your physician before changing any medication or adding a powerful herbal remedy, which may have side effects.) At 11 months, continuing the Carditone and low salt, my BP varies between normal and ideal. At two years, I am experimenting with reducing or discontinuing the Carditone, under my family doctor’s supervision.
32. After 3 months, I discover the Grossan nasal irrigation device at www.cpaptalk.com and that the common preservative in nasal saline sprays, benzalkonium chloride, has a rebound effect in some people. I start using the Grossan and discontinue saline nasal sprays with preservatives, and my chronically blocked nose is better.
33. After about 5 months into the therapy (remember the first 10 weeks getting only a half a night treatment), I am in the Comfort stages in all aspects of the therapy (except the full face mask), in Mike Moran’s Inflation (successful treatment) stage, in Perry Holzman’s Advanced Treatment stage. Through month 10, I am continuing to sleep long nights quite frequently, still making up the sleep deficit and healing.
34. At 7 months into therapy I finally find a correct pressure setting. Since the sleep lab titration failed, I experiment carefully for 4 months, using autopap and software, and finally narrow down best results to a straight CPAP setting.
35. After about 6 months into the therapy, I am able to go beyond just daily coping with essentials, and work on and complete several important, long-neglected projects. After about 8 months, I am able to work intensely on a large new project, in Perry’s Mental Zest stage. I almost always have the mental energy, but not always the physical energy.
36. After 8 months or sooner, my eye pressure, routinely monitored for glaucoma prevention, decreases significantly, without medication. (Consult your doctor before changing any medication.)
37. At 11 months, there are sometimes discouraging setbacks and seemingly slow progress. More often than not, there are perfect nights of sleep. But my old ideals of perfect sleep 100% of the time and getting back to my former (and younger!) self haven’t been met. I can no longer take a good night’s sleep for granted. I need to take one day at a time because quality of sleep and energy levels vary. But overall, the CPAP therapy results are excellent and I wouldn’t be without it. It’s truly life-transforming, in a good way! Now that I am gaining energy, it’s time to continue rebuilding neglected aspects of my life.
38. About a year after starting CPAP treatment, I have an annual follow-up with a cardiologist and find that my heart returned to a normal size! He dismisses me as a patient since my healthy heart and I no longer need his care!
39. After about a year and a half, I finally admit that I don’t feel as good as I think I should, even though my AHI is averaging 5 which is “normal.” During the first 18 months, I was comparing how I felt with the walking-dead, zombie feeling that was the norm before CPAP treatment. Now, I’m raising the bar, remembering how it feels to feel really good, and admit that I don’t feel that way. I get some good advice from a hospital sleep lab supervisor, and change my machine settings from straight CPAP to back to APAP, and the APAP range the sleep doctor originally suggested, 9 to 12 cm H2O. My software shows that I spend about half the night at 9 cmH2O, and about half the night at higher pressures. This auto-adjusting based on my breathing needs is one of the advantages of APAP. I wonder why it took me so long to go back to APAP and follow the sleep doctor’s suggested pressures after he looked at my software reports. My AHI quickly goes from an average of 5 to 3. Although the change in numbers seems small, I feel almost twice as good on APAP as I did on CPAP. I again slowly start carefully experimenting with pressure settings and masks to get my AHI below 3, even with a nose that only half works. As I experiment with a pressure of 10 to 14 cmH2O, I’m beginning to see an even lower AHI and continue to feel great. None of this would be possible without an APAP machine with data capability and software.
40. At two years, I can count on a good night’s sleep and feeling good the next day. Although it’s the rule, not the exception, I still don’t take it for granted. I monitor my software results weekly. Once a year, I borrow a pulse oximeter that records overnight to monitor my oxygen levels. I’m very grateful for APAP and how well I feel, as I continue to use diet and exercise to feel even better. If I had sleep problems, I would visit the best sleep doctor I could find, and have another sleep study if necessary, but have no indication that’s needed now.
My conclusion: Effective PAP therapy, in spite of early discomfort, brings very real health and quality-of-life results. My time frames for acquiring equipment knowledge were agonizingly slow if compared to the patient who gets useful patient education at the start of treatment. By using the information in high quality, peer-coaching and patient education web sites, which are a compilation of many PAP users’ experiences, and books and articles by experienced sleep doctors, the new PAP user can learn in minutes and hours what it took other people weeks, months, and years to learn. Best of all, would be to find a knowledgeable doctor as a treatment partner, and treatment expertise from knowledgeable sleep technicians and respiratory therapists as part of your treatment team. I hope you have an easier time with it than I did, get good information at the start of your therapy, have a better DME, and have good health results faster.
Sources: Accounts of two CPAP users
Want more? See http://smart-sleep-apnea.blogspot.com for the peer coaching articles CPAP Adaptation Stages and Recovery, Seven Stages of CPAP and Feeling Good, and Ready to Give Up?
Not written by healthcare professionals. The information and opinions offered are not intended or recommended as a substitute for professional medical advice.
© Mile High Sleeper, October 2006-2008. Permission to use for free educational purposes.
Diary of a new hoser for the first 30 days from www.cpaptalk.com
By littlebaddow, Essex, England
Posted: Wed Feb 02, 2005 6:22 pm Post subject: Diary of a new hoser
When I was first diagnosed, I found this forum (cpaptalk.com) invaluable and it helped me a great deal to learn from the experiences and support of others. Without the advice so freely given I'm sure I would have found it even harder to cope. Thanks to you all. I kept a diary for the first few weeks and glanced back at it today. I'm now in week 10 and really beginning to feel the benefit, so the fear, uncertainty and discomfort of the first few weeks is becoming a more distant memory every day. I thought it might give others some hope & encouragement if they could see a few extracts from my diary. The story shows that for me this wasn't easy at first, there were setbacks, but it has been worth it. I hope it helps someone to read it.
Day 1 What a horrible experience. Lay awake for hours, got about 2 hours of very disturbed sleep then took mask off. Very uncomfortable.
Day 3 Couldn’t stand the mask, took it off after 10 minutes. Bunged up nose, felt like I was suffocating.
Day 5 Managed about 5 hours sleep with mask on, still very disturbed.
Day 6 Lay awake for about 2.5 hours before taking off mask, unable to sleep, felt like it was a constant struggle to breathe through the nose, though when took off mask could breathe no problem.
Day 8 Did not use. Took off mask after a few minutes, nose bunged up as soon as lay down.
Day 9 During the day, used mask for an hour whilst sleeping in arm chair, not too bad, woke up a couple of times with sudden exhalation though mouth. Night time, propped up on pillows to go to sleep in semi-sitting position. Slightly disturbed sleep for about 2.5 hours, then removed mask for rest of night. Mainly the noise keeping me awake.
Day 11 Just over 7.5 hours using mask. Sleep still a bit disturbed, especially early part of the night when still noticing the puffy cheek effect. Managed to lie down flat for part of the night. Had headache when I woke up during the night.
Day 12 Got the new mask today (Mirage vista). 7 hours before removing mask, still disturbed, though mask noticeably quieter. Puffy cheek effect not noticed yet with new mask. Much easier to lay down flat. Headache when woke up during the night.
Day 14 Got to sleep OK, still disturbed sleep. Woke up after about 4 hours, took a long time to get back to sleep, woke up after a couple of hours with partially blocked nose, removed mask then slept another couple of hours. No headache, noticed a bit of air leakage from mask and from mouth.
Day 17 Reasonable, slightly disturbed sleep, 6.5 hours until alarm went off! Day 19 7.5 hours, slightly disturbed sleep. Sore nose!
Day 21 6 hours with mask, only slightly disturbed.
Day 26 6.5 hours with mask then woke up & took it off, slept 2 more hours.
Day 29 8 hours, woke up 2 or 3 times
Day 31 Ouch, only 2.5 hours, then woke up with stuffy nose & coughing. Managed another hour then took mask off. Was a cold night and had heating on – perhaps too dry?
Day 32 New machine arrived today, autopap with heated humidifier. Wow, what a difference, 8 hours straight, no stuffiness. I won't bore you with any more. I'm now in week 10 & still have setbacks & a disturbed night, but usually manage 6 or 7 hours undisturbed sleep.
From early CPAP struggles to a two year anniversary (2005 to 2007)
(Anonymous, used with permission)
Background information. In my opinion, these experiences are not unusual for the new CPAP user. At the start, no one was managing my therapy, not even me. My family doctor was involved on the medical side, but not managing CPAP treatment; the large national Durable Medical Equipment (DME or Home Medical Equipment, HME) Respiratory Therapists (RT) were not managing my therapy and were giving me inadequate and even wrong treatment information, and I didn’t realize I needed a sleep doctor. When I finally found one, he advised on the medical side, but there was still no one to help with frequent equipment struggles.
Since I was on my own largely without the help of healthcare professionals, I took responsibility for managing my treatment. The best and almost only source of quality CPAP treatment information was from an online support group of other patients at www.cpaptalk.com Perhaps this approach is not optimal in the eyes of medical professionals, but it was necessary and successful. It would be better to partner with healthcare professionals, especially sleep technicians and respiratory therapists well qualified in CPAP treatment, but finding them is difficult and the healthcare system does not give the patient ready access to them. The poor quality of care offered by the large national DME in this tale seems to be not unusual, since similar experiences are reported by other patients as well. Although some patients find large national DMES to be helpful and with knowledgeable Respiratory Therapists, many do not.
Diary:
1. I think I am sleeping well. Since I’ve moved a lot through the years, I’ve had many primary care physicians. None of them suspected sleep apnea, in spite of my having a number of symptoms. When my current physician mentions it, I discount her suggestion since I still think I am sleeping well and don’t know the symptoms. After my undiagnosed sleep apnea reaches crisis proportions in my life and health, I again see my excellent family doctor who suggests a sleep study to rule out sleep apnea. I credit her with saving my life for suggesting a sleep study.
2. Since I have a lifelong fear of suffocation (probably because I have been mildly suffocating my whole sleeping life because of sleep apnea), my doctor suggests a diagnostic, baseline sleep study, an overnight study without using a CPAP mask and no titration (finding the right CPAP machine pressure). I find out months later that this was a very good decision because of my mask claustrophobia.
3. I wait about a month to get into the hospital sleep lab. The sleep tech is very professional, competent, and supportive, even spending extra time in the morning to show me some masks at my request. The sleep doctor produces a report in a week. I have very severe obstructive sleep apnea with an AHI (apnea - hypopnea index of events per hour) of 105. An AHI of above 30 is considered severe.
4. I deal fairly well with the emotional impact of having this diagnosis. I quickly read a couple of books about sleep apnea. I suggest an auto-adjusting (APAP) machine and heated humidifier to my doctor, and the doctor sends the prescription to the DME. The prescription falls into a black hole at the large national DME. No one contacts me. After two weeks, I attempt to find out what happened. The DME regional customer service says in effect “Don’t call us, we don’t know what happened, only the branch knows, the branch will call you, and we won’t give you the phone number of the branch so you can find out what happened; it’s against our policy.” The branch office never does call me. The DME is adding considerably to my stress. This is very frustrating, because I now know I have severe sleep apnea, feel absolutely terrible, but can’t start treatment. After I call them repeatedly over days, the DME regional customer service relents and gives me the branch number so I can discover they lost the prescription and start over again, asking the doctor’s office to fax it to the DME again. I call in another week, and they say I can pick up the machine.
5. Shortly after diagnosis, following my doctor’s advice, I visit an ENT specialist. I have a severely deviated septum and can barely breathe through one nostril. I decide to see how I will fare on CPAP therapy before deciding whether to have septoplasty. Later, I find that when my nose is working I can use nasal pillows; when it’s not working well, I can successfully use a full face mask and breathe partly through my mouth.
6. At the DME branch office, a 15 mile drive one-way, I’m shown an instructional video which doesn’t help since I get a different model machine. The senior RT tells me they have only three masks (nasal, full face, nasal pillows) but the best one for me, without finding out anything about my needs, is the nasal mask. She doesn’t explain the mask types. The nasal mask is the only one she uses on me. She “fits” it by plopping it on my face while I’m sitting up and turns on the machine. She gives me no preparation and little support. I’m frightened since this is the first time I’ve worn a mask under pressure and have a fear of suffocation. She seems unsure about setting up the machine, which doesn’t inspire my confidence in her, even though she is a senior RT. She gives no safety information. I’m so dazed by the experience and my fatigue that I barely absorb the usage instructions.
7. I get a good machine. It seems that the choice of a fully data capable APAP with exhalation relief is mostly dumb luck or good karma, since I don’t know much about machines and my family doctor may not know much about them. Since I haven’t been titrated, the doctor prescribes a pressure setting of 4 to 20 cmH20, the default setting of the machine. The machine is accurate, responsive, comfortable, quiet, and eventually, comforting. I set the exhalation relief at the easiest-to-exhale setting. Later, after using another straight CPAP machine for trips, I know I can do without exhalation relief, but use it because it’s comfortable. Without the smart machine (APAP with software capability), I wouldn’t have found a correct pressure setting, since later the lab titration study was inconclusive. The machine measures factors beyond compliance, such as apneas, hypopneas, flow limitation, leaks. I’m grateful for the SmartCard, first for downloads from the DME, and now because I have the software. Evaluating masks and leaks and finding the best, lowest overall pressure setting would have been impossible without APAP and the software.
8. I give up beverages with caffeine on first day of therapy, and continue, with some exceptions.
9. I have excellent adherence or compliance (wearing the mask and using the machine whenever in bed, asleep or awake) from the start, due to my determination based on knowledge of the severity of my OSA and personal health indicators from my physician and the risks I researched through TS Johnson’s book Sleep Apnea – The Phantom of the Night and web sites. Compliance was interrupted by equipment problems, not user resistance. This is a major victory for me because of my lifelong fear of suffocating and claustrophobia! At the start, I use the APAP for 4, 5, or 6 hours during a total sleep time of 7, 8, or 9 hours. By Day 9, I use APAP for the whole night’s sleep of 7 ½ hours. By Day 14, I use APAP and sleep for 11 hours. Subsequently, length and quality of sleep continues to be erratic for many months, but my compliance is excellent.
10. The pre-CPAP nightly troubled dreams of struggle and failure go away almost immediately. I soon have normal dreams.
11. By Day 7 of APAP therapy, even with a very leaky mask, excessive daytime sleepiness goes away! The need for daytime naps largely goes away, with exceptions when I sleep poorly due to equipment problems (humidifier, hose, mask, bed pillow).
12. I experiment by skipping a night on the machine. By Day 13, I learn that I feel better the next day when using APAP, even with all the discomfort! (with a few exceptions with severe equipment problems).
13. By Day 14, in spite of a leaky mask and rainout hose condensation, my AHI goes from the very Severe range on the sleep test to 14.5, close to the lower end of the Moderate range. By Day 41, in spite of the same leaky mask (with rainout fixed), my AHI is 6.9, in the Mild range, even without the benefit of daily downloads which would allow me to tweak mask fitting and pressures. Chances are, these numbers improved sooner than the days listed, but I don’t have the software to determine that.
14. By Day 14, the invisible, persistent, thick gray veil of constant daytime fatigue goes away! The zombie-like heavy fatigue never returns, but I’m sure it would return if I missed a night of CPAP. Gradually through 11 months, as my AHI improves, the lighter fatigue diminishes. After a bad night, I would start to be tired in the morning and continue tired all day. With a better AHI, I would be tired early afternoon. With a still better AHI, I wouldn’t get tired until evening. After a good night with an AHI of 5, I don’t get tired until bedtime and feel physical, emotional, and mental energy all day long. After 11 months, daytime fatigue is the exception rather than usual.
15. By Day 16, the need for nighttime bathroom trips (nocturia) ends!
16. A repeated stressor was prolonged and difficult struggles and hostility shown by the DME branch office merely to sign a HIPPA release form in order to get SmartCard printouts sent to my doctor. HIPPA was not new when these problems occurred. The branch office DME said in effect “you need to sign this form but we don’t have this form and we won’t get you this form, call this number in another state and get it yourself. The second office said, no, you don’t need this form. The first office said yes, you do need the form, but we still won’t give it to you and (angrily from the lead RT) why did you call the office number we gave you? And then, you have to talk to the regional manager and the form has to go to Legal in another state.” After days of struggle, I was able to sign the form.
Ten days after giving the SmartCard to the DME branch office, thanks to the doctor’s office (not the DME branch which still refuses to give me my own patient information), I finally get the eagerly awaited first software report, which seems like much too long to wait for feedback on the first days of therapy. By Day 23, after getting the first software report I could finally verify in the first critical 12 days of therapy, A) that the machine was providing different pressures, B) that improvement was underway, with a much lower AHI than when I was first tested in the sleep lab, C) that the mask leaks I felt were indeed significant. However, neither my doctor nor I could understand all of the report and the DME said they weren’t able to do any interpretation, referring me to my doctor.
17. By Day 23, I stop wrestling with the hose all night and learn effective hose management from www.cpap.com Answers section. The DME branch RT’s advice and machine manufacturer’s literature and photos show the hose hanging from the bed, pulling on the mask, causing leaks. I struggle to adjust to hose movement (pull on hose, under arm, over arm, under or over blanket) when changing sides. Following the online advice, I tie the hose to the headboard. It requires readjusting to new hose positions and movement, but the overhead position is much better.
18. By Day 24, I discover that the hospital sleep lab does mask fittings and have the nasal mask from the DME properly fitted by a hospital sleep technician, who knows what he is doing in contrast to the DME RT, while laying down on my side and back under CPAP pressure. He also instructs me in how to adjust the mask myself. The mask still leaks after fitting, but not as badly. With the initial leaky mask, the average time in large leak goes from 1 hour 35 minutes on Day 14 to 3 seconds on Day 41, due to a real mask fitting at the hospital sleep lab and solving rainout and bed pillow problems.
19. By Day 30, I discover PAPillows on www.cpaptalk.com and get delivery, greatly reducing aerophagia (swallowing air) because it keeps my chin from sinking to my chest. I ask four RTs and sleep technicians in two DMEs and a sleep lab for advice. They haven’t even heard of aerophagia and have no advice about how to eliminate it. In fact, the DME branch RT’s advice about using a soft pillow to prop up the ill-fitted mask contributes to aerophagia. I find information about it through www.cpap.com Answers. It takes 3 months of reading hundreds of posts to discover on www.cpaptalk.com that the machine pressure default setting of 4 to 20 cm H2O was both too high, causing aerophagia, and too low, causing a feeling of suffocation. Aerophagia disappears with a lower top pressure. (At that time, www.cpaptalk.com did not have the Our Collective Wisdom section, so it took reading a lot of posts from patients to find basic information.)
20. By Day 33, I discover a remedy for rainout (condensation in hose) on www.cpaptalk.com . I previously asked four respiratory therapists or sleep technicians in two DMEs and a hospital sleep lab for advice; they didn’t have any advice that worked. With international shipping and US customs, it takes until Day 69 to receive a heated hose from SleepZone in Australia and permanently eliminate rainout.
21. By 6 weeks, I am grateful that the hospital sleep lab lets me try on many brands and types of masks, while laying down under pressure, and advises me on the best one. (The DME offers only the one brand it sells.) I discover that a nasal mask doesn’t work for me because of facial relaxation when deeply asleep (discovered through my awareness of what I do “during sleep.”) By Day 46, I get delivery of a full face mask, although the large national DME customer service sent the wrong size; it took another few days to get the correct order. The DME RT provided no full face mask safety information (about regurgitation, asphyxiation, quick removal of a full face mask), but I learned that from Dr. Johnson’s book.
22. By 6 weeks, I get a nasal pillows mask, ordered online at www.cpap.com . Another RT at the DME branch said that nasal pillows damaged the nose and were a last resort (wrong information), and the DME and hospital sleep lab couldn’t order the brand I wanted. The nasal pillows mask has been the most successful and comfortable mask for me and at 10 months continues to contribute hugely to the success of my therapy. During the second year on CPAP, I use the full face mask because of persistent nasal congestion due to the deviated septum. Over the first 9 months, all three RTs at the DME branch repeatedly withheld information that they could special order other masks beyond their favored brand, even advising against an entire brand of mask that they didn’t routinely stock (no matter how well the brand is respected and how it fit my patient needs), and saying they couldn’t order replacement parts for a special order mask already ordered through them. It was essential to research masks on the Internet and hear from other users.
In case you’re wondering why I continue to use the large national DME, it’s because it’s the only one available on my insurance plan. As time goes on, I use www.cpap.com more and more, paying their reasonable prices out-of-pocket outside insurance, in order to avoid the poor treatment and emotional distress of dealing with the large national DME. For example, the DME pays $7 for a DC cable, marks it up to $60, and gives me a “discount” price of $50. www.cpap.com charges about $24 plus shipping for the same item. I haven’t tried a small, local DME (not part of a national chain) or a DME at a hospital or private sleep lab; perhaps some of them are better than the large national DMEs.
23. At end of 6 weeks, walking on good days (days following nights with fewer equipment problems) feels like an effort but is very beneficial, helps with insomnia.
24. By the end of 6 weeks, from Mike Moran’s The Seven Stages of CPAP, I have been through Denial, Realization, Diagnosis, Frustration, Immersion, and Ownership stages. Now I’m mostly in the last Inflation stage. From Perry Holzman’s What Is Feeling Good? I have been through Walking Dead and am still in Basic Treatment. At some point, my sense of humor returns.
25. By the end of 6 weeks, my blood pressure goes from high (140+/90 or more) almost all the time to borderline high half of the time and normal (120/80) half of the time, without medication. Due to an undetected wrong machine setting made by the RT, this was achieved with only 4 hours of therapy per night, even though I was using the machine all night.
26. By the end of about 9 weeks, I discover on www.cpaptalk.com that my insomnia could be due to a low setting of 4 cm H2O, leading to a subtle sense of suffocation at night and exhaustion during the day. Starting in the morning, it takes an entire day of repeated phone calls to the DME regional customer service and a 1½ hour wait at the DME branch to get the prescription changed (literally a 30 second process). The DME regional customer service first lost the doctor’s faxed prescription (as they lost my original prescription for a machine), but this time, they lost the prescription twice, requiring my calling the doctor twice, even though customer service assures me they have it in their computer system. I drive 15 miles to the branch to find that regional didn’t send it to the branch office (again), and the branch can’t get a call through to its own customer service. The branch suggests that I drive to yet another town to visit the doctor to physically pick up the prescription; I decline, hoping that they find it in their system. As I wait for 1 ½ hours approaching closing time because of their faulty organization, the lead RT tells me irritably that he can’t authorize overtime to reset my machine, even though I wasn’t requesting that. At the last minute before closing, they break their own rules and reset the machine presssure in 30 seconds without getting a prescription from regional. The same senior RT, who originally set up my machine, changes the pressure. After getting the pressure changed to a low setting of 6 cm H2O, insomnia largely disappeared.
Insomnia was not a problem before CPAP. An uncomfortable mask, rainout, venting on arms, hose problems make it hard to fall asleep initially and after awakening night after night in order to problem-solve. Equipment problems require that the user be aware while “sleeping” to detect problems. 30 or more straight nights of detective work tends to build a habit of light sleep and insomnia. (Periodic insomnia returns later. I finally discover it is caused by food sensitivities. If I avoid those foods, I have no insomnia.)
27. At some point fairly early in the therapy, I decide that this isn’t as simple as it seems, and talk to my doctor about a sleep lab titration study. The study is inconclusive, since I don’t sleep (a long story), and results in no prescribed pressure setting. I also visit a sleep doctor. It takes some months to find one and get an appointment. I show him my software printouts. He is of some help with the pressure, but not with the intricacies of equipment, so again, I feel that I’m on my own. I ask him to prescribe an overnight check of my oxygen levels using a recording pulse oximeter. That part of the therapy is working.
28. It takes me 10 weeks to discover through www.cpaptalk.com that there is a clinicians’ set up manual for the APAP machine. The DME senior RT withheld the manual and the fact that one existed when I got the machine. I get a manual though the Internet. Later, the lead RT at the DME threatens me for doing this. (When www.cpap.com sells a machine, they include both the clinician’s and user’s manuals.) When checking the machine settings for the first time, I am alarmed to discover that the DME senior RT set up the machine in an incorrect split study mode, delivering only 4 hours of APAP treatment per night. Due to her error, for the first 10 weeks of treatment, the machine was delivering only half the prescribed treatment, which led to my subtle feeling of suffocation and insomnia, since I was at a pressure of only 4cm H20 for half the night,not enough pressure to clear all the exhaled carbon dioxide from my mask. The DME senior RT made this error initially, and she repeated it when the pressure was changed 9 weeks later. The large national DME has no quality control procedures to detect errors in setting up a machine. Upon discovering her error, I correct the settings immediately and finally, after more than two months, start getting a full night of treatment. Then began 4 months of careful experimentation to find a correct pressure setting, using software, since the titration study was inconclusive (I didn’t sleep).
Had I not gotten a clinician’s manual (thanks to finding out on cpaptalk.com that they exist), the DME’s error would not have been detected by the DME or my doctors. I might have given in to the feelings of mild suffocation and lack of progress from only half a night’s therapy and given up on CPAP, as so many people do. Since I have an enlarged heart, on its way to congestive heart failure if untreated by CPAP, had I given up on CPAP, I might be dead by now. Concerned that other patients might be harmed by the RT’s lack of competence and DME’s lack of quality control, I file a complaint with JCAHO (The Joint Commission overseeing hospitals and DMEs) and politely meet with the lead RT, who does not even say “sorry this happened.” His focus is on being defensive and intimidating me for taking an active role in my therapy. I have no indication that he ever corrected the senior RT who twice made the error, and no indication that the large national DME ever corrected this lack of quality control and supervision.
29. I buy a card reader and the machine software online at www.cpap.com , since dealing with the DME for printouts and everything else is so difficult, and even hazardous.
30. At three months since the start of CPAP therapy, after only two weeks at the correct (full night) machine setting that I made, my AHI is 5 or below events per hour, in the normal range for people without OSA! My AHI consistently stays below 5 when using a nasal pillows mask, but is still in the Mild range when using a full face mask. At 11 months, although my AHI is 5, I am still searching for a better full face mask. In my opinion, it’s essential to have access to daily or frequent software or display readouts to monitor progress, adjust equipment, and pursue better equipment if necessary. The first 3 months of CPAP therapy felt like the longest in my life, and were very difficult, in terms of the equipment, dealing with the DME branch office, and finding good sources of CPAP treatment information. The best practical CPAP therapy information came from the experienced CPAP users on www.cpaptalk.com
31. After only 4 weeks at the correct, full night machine setting (14 weeks into therapy), perhaps sooner, my blood pressure returned to the normal range (120/80) for the first time in several years, without medication. At the same time, I went on a low salt diet. Some weeks later, after daily taking the OTC herbal remedy Carditone suggested by my doctor, my blood pressure reached the ideal range (115/70), without medication. (Consult your physician before changing any medication or adding a powerful herbal remedy, which may have side effects.) At 11 months, continuing the Carditone and low salt, my BP varies between normal and ideal. At two years, I am experimenting with reducing or discontinuing the Carditone, under my family doctor’s supervision.
32. After 3 months, I discover the Grossan nasal irrigation device at www.cpaptalk.com and that the common preservative in nasal saline sprays, benzalkonium chloride, has a rebound effect in some people. I start using the Grossan and discontinue saline nasal sprays with preservatives, and my chronically blocked nose is better.
33. After about 5 months into the therapy (remember the first 10 weeks getting only a half a night treatment), I am in the Comfort stages in all aspects of the therapy (except the full face mask), in Mike Moran’s Inflation (successful treatment) stage, in Perry Holzman’s Advanced Treatment stage. Through month 10, I am continuing to sleep long nights quite frequently, still making up the sleep deficit and healing.
34. At 7 months into therapy I finally find a correct pressure setting. Since the sleep lab titration failed, I experiment carefully for 4 months, using autopap and software, and finally narrow down best results to a straight CPAP setting.
35. After about 6 months into the therapy, I am able to go beyond just daily coping with essentials, and work on and complete several important, long-neglected projects. After about 8 months, I am able to work intensely on a large new project, in Perry’s Mental Zest stage. I almost always have the mental energy, but not always the physical energy.
36. After 8 months or sooner, my eye pressure, routinely monitored for glaucoma prevention, decreases significantly, without medication. (Consult your doctor before changing any medication.)
37. At 11 months, there are sometimes discouraging setbacks and seemingly slow progress. More often than not, there are perfect nights of sleep. But my old ideals of perfect sleep 100% of the time and getting back to my former (and younger!) self haven’t been met. I can no longer take a good night’s sleep for granted. I need to take one day at a time because quality of sleep and energy levels vary. But overall, the CPAP therapy results are excellent and I wouldn’t be without it. It’s truly life-transforming, in a good way! Now that I am gaining energy, it’s time to continue rebuilding neglected aspects of my life.
38. About a year after starting CPAP treatment, I have an annual follow-up with a cardiologist and find that my heart returned to a normal size! He dismisses me as a patient since my healthy heart and I no longer need his care!
39. After about a year and a half, I finally admit that I don’t feel as good as I think I should, even though my AHI is averaging 5 which is “normal.” During the first 18 months, I was comparing how I felt with the walking-dead, zombie feeling that was the norm before CPAP treatment. Now, I’m raising the bar, remembering how it feels to feel really good, and admit that I don’t feel that way. I get some good advice from a hospital sleep lab supervisor, and change my machine settings from straight CPAP to back to APAP, and the APAP range the sleep doctor originally suggested, 9 to 12 cm H2O. My software shows that I spend about half the night at 9 cmH2O, and about half the night at higher pressures. This auto-adjusting based on my breathing needs is one of the advantages of APAP. I wonder why it took me so long to go back to APAP and follow the sleep doctor’s suggested pressures after he looked at my software reports. My AHI quickly goes from an average of 5 to 3. Although the change in numbers seems small, I feel almost twice as good on APAP as I did on CPAP. I again slowly start carefully experimenting with pressure settings and masks to get my AHI below 3, even with a nose that only half works. As I experiment with a pressure of 10 to 14 cmH2O, I’m beginning to see an even lower AHI and continue to feel great. None of this would be possible without an APAP machine with data capability and software.
40. At two years, I can count on a good night’s sleep and feeling good the next day. Although it’s the rule, not the exception, I still don’t take it for granted. I monitor my software results weekly. Once a year, I borrow a pulse oximeter that records overnight to monitor my oxygen levels. I’m very grateful for APAP and how well I feel, as I continue to use diet and exercise to feel even better. If I had sleep problems, I would visit the best sleep doctor I could find, and have another sleep study if necessary, but have no indication that’s needed now.
My conclusion: Effective PAP therapy, in spite of early discomfort, brings very real health and quality-of-life results. My time frames for acquiring equipment knowledge were agonizingly slow if compared to the patient who gets useful patient education at the start of treatment. By using the information in high quality, peer-coaching and patient education web sites, which are a compilation of many PAP users’ experiences, and books and articles by experienced sleep doctors, the new PAP user can learn in minutes and hours what it took other people weeks, months, and years to learn. Best of all, would be to find a knowledgeable doctor as a treatment partner, and treatment expertise from knowledgeable sleep technicians and respiratory therapists as part of your treatment team. I hope you have an easier time with it than I did, get good information at the start of your therapy, have a better DME, and have good health results faster.
Sources: Accounts of two CPAP users
Want more? See http://smart-sleep-apnea.blogspot.com for the peer coaching articles CPAP Adaptation Stages and Recovery, Seven Stages of CPAP and Feeling Good, and Ready to Give Up?
Not written by healthcare professionals. The information and opinions offered are not intended or recommended as a substitute for professional medical advice.
© Mile High Sleeper, October 2006-2008. Permission to use for free educational purposes.
posted by Mile High Sleeper Gal | 12:49 PM
