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Snooze Newz A newsletter for people with sleep-disordered breathing (SDB) and their families ISSUE 13 Using CPAP for the long haul: an interview with Steve Creighton Steve Creighton didn’t realise he had sleep apnea. It was only when he started using CPAP that he saw how much of life he’d been missing out on. Steve Creighton is a professional driver who lives in Western Sydney with his wife Kate and their three teenage children. Kate is a registered nurse, so she’s always on the alert for health issues. When she was pregnant with their first child in 1994, she was worried about sudden infant death syndrome (SIDS) so she and Steve went to see a respiratory specialist. After speaking to the specialist about SIDS, Kate added, “By the way, Steve’s got sleep apnea.” “This was news to me,” Steve says, recalling that day nearly 17 years ago. “I didn’t think that there was a problem, but she said when I was sleeping I stopped breathing and she had to give me a nudge. “I felt, wow I’ve got energy now. I understood why I needed treatment. Life was good again.” I had no idea. But I went to see a sleep specialist and they said, ‘yes, you’ve got sleep apnea, you have 20 episodes an hour.’ I remember thinking, that’s every three minutes, which seemed like a lot. They put me on CPAP to see how it went. So I got a Sullivan™ IV and the effect was fairly dramatic. I felt, ‘Wow, I’ve got energy now’. It was really good. I understood why I needed treatment. Life was good again.” They had no trouble with SIDS, nor with Steve’s treatment for OSA. “I’ve never had a problem using CPAP, ” Steve says. “Ok,” he adds, “the first time I tried it, it was a bit confronting but I thought: yes— there’s a mask but let’s get over that, yes—there’s air flowing, but I could put the machine on ramp so it would start off softly and gradually come up to the required pressure. One of my sleep studies a few years ago showed that I actually have borderline narcolepsy. I’ve always been able to go to sleep very easily and now I know why. So sleeping with the mask has never been a problem.” Steve takes his CPAP with him when he travels, including an overseas trip in 2005. “No problems,” he says. When he was diagnosed with borderline narcolepsy Steve was prescribed dexamphetamine. He notices that it adds another dimension to the treatment of his sleep apnea. “Before I started CPAP I’d be tired all the time,” he says. “Once I started on CPAP I’d be fine, but if I had a big lunch I’d be falling asleep. Now that I’m having the dexamphetamine I can take it after lunch and it takes that edge off the tiredness. So I needed the combination—it’s not like one thing will fix you.” Another part of his treatment was a rhinoseptoplasty because his septum was crooked. His nose had been broken when he was younger, blocking his left nostril. This meant he had to work harder to breathe. Fixing his septum didn’t affect his sleep apnea, but has let him breathe more easily in general. Steve has noticed that a number of people he has worked with are also on CPAP, but he’s baffled by the people who say they can’t stay on it. “Some > continued on page 2 IN THIS ISSUE 30 Years Ago p5 Both Sides of CPAP Therapy p8 Designing for Better Sleep p9 Road safety laws and OSA > continued from page 1 Using CPAP for the long haul: An interview with Steve Creighton “CPAP is something that’s going to improve your quality of life and it’s not just the tiredness, it’s the longterm effects that sleep apnea has.” people say they have trouble staying on the treatment. I can understand if they get claustrophobic, but if it’s just that it feels uncomfortable then they should get through that. The first time you ever wore a hat it might have felt uncomfortable, but if you don’t wear a hat and you go out in the sun you could end up with skin cancer. CPAP is something that’s going to improve your quality of life and it’s not just the tiredness, it’s the long-term effects associated with sleep apnea—the stress levels, the impact on the heart and the rest of the body. I’ve been on it now for 16–17 years and I’m glad. If I was just starting on it my health would have been compromised by now.” Steve suggests a long-term approach to thinking about having OSA. “Think about what sleep apnea can do to you if you’re not treated,” he says. “You only get one life so it’s up to you to say, ‘Ok, if this is what I’ve got I’m going to look at all the options. Apart from CPAP what other options are there? Is there a drug that’s an option for me? Surgery is invasive but is there a possibility—removing adenoids or tonsils, or fixing a broken nose?’ Have a look at your diet and exercise. Obviously!” As Steve is a professional driver his use of CPAP is reportable—it’s marked on his drivers licence and his government authorization to drive a bus. He has to see a specialist every 12 months to check on his compliance and ensure treatment is working. Steve takes this responsibility very seriously. “Even after a couple of days off CPAP I feel the difference,” 2 Snooze Newz he explains. “If I’ve got a cold, I get a blocked nose, and I might pull the mask off during the night. But I wouldn’t do that two nights in a row. I’ll go and get something for the cold so that when I get to bed I know I’ll be able to sleep.” He explains that he wouldn’t drive in those circumstances. “I’d know I wouldn’t be fit, wouldn’t have the judgment. Because of being a professional driver I’ve got to take ownership of it.” Recently Steve upgraded from the Sullivan™ IV that he had been using since 1994. It was still working effectively, but Kate had heard about a new generation of flow generators [ResMed’s new S9™ CPAP]. As Steve describes it, “Whereas the old machine was continuous air pressure the newer one will start off at a low pressure, sense your breathing and then only increase the pressure when it registers that you’re having an apnea. It’s not continuous air pressure, it only gives you the pressure when you need it.” As a bonus, he’s also finding that humidification with the new machine is trouble-free. Kate is still helping Steve with his sleep apnea. She now works in a sleep unit and passes on the latest news on OSA and CPAP. Steve takes full advantage of this information. “If you don’t keep up-to-date or have regular check-ups you don’t know what’s happening,” Steve says. “You might find out that what you’re doing is good but that something new is a lot better. That’s part of the treatment—making sure you keep yourself informed.” All drivers have a personal responsibility to ensure they are fit to drive. As road safety laws differ across countries, check with your country’s road safety authority for respective laws related to driving with OSA. Australia Road safety laws in most parts of Australia require all drivers, whether they are driving a private car or a commercial vehicle, to report to their Driver Licensing Authority any permanent or long-term illness that is likely to affect their ability to drive safely. They may be required to have their health assessed. Medical conditions that affect a person’s driving include sleep disorders, alcohol dependency, heart diseases and respiratory disorders. See www.austroads.com.au for more information. Europe A study of 25 European countries published in 20081 found that: “Excessive daytime sleepiness is mentioned in nine [driving licence regulations], whereas sleep apnoea syndrome is mentioned in 10 countries. A patient with untreated sleep apnoea is always considered unfit to drive. To recover the driving capacity, seven countries rely on a physician’s medical certificate based on symptom control and compliance with therapy, whereas in two countries it is up to the patient to decide (on their doctor’s advice) to drive again.” USA Regulations about driving when you have sleep apnea differ from state to state in the USA. In some states it is mandatory for doctors to report a patient’s sleep apnea diagnosis. The Insurance Institute for Highway Safety website states that if you have “a history of crashes or violations, or reports by physicians, police, or others, state licensing agencies may require renewal applicants to undergo physical or mental examinations or retake the standard licensing tests.”2 UK UK law requires drivers to tell the Driver and Vehicle Licensing Agency (DVLA) about any conditions such as sleep apnea that may affect their ability to drive safely. Your ability to drive will be assessed. Generally, if you can prove that your treatment for your OSA is effective, you will be allowed to keep your licence. Beccy Mullins from ResMed UK recently spoke on TalkSPORT Radio about driving and sleep apnea. Go to www.realsleep.co.uk to hear her interview. Canada The Canadian Lung Association reports that: “Doctors have a duty to tell the motor vehicle board [of their province or territory] about patients who are not safe to drive. If you have sleep apnea and you refuse treatment, your doctor is required to report you. The motor vehicle board could suspend your license until you get your sleep apnea treated.”3 References: 1. Alonderis A, Barbé F, Bonsignore M, Calverley P, De Backer W, Diefenbach K, Donic V, Fanfulla F, Fietze I, Franklin K, Grote L, Hedner J, Jennum P, Krieger J, Levy P, McNicholas W, Montserrat J, Parati G, Pascu M, Penzel T, Riha R, Rodenstein D, Sanna A, Schulz R, Sforza E, Sliwinski P, Tomori Z, Tonnesen P, Varoneckas G, Zielinski J, Kostelidou K. Medico-legal implications of sleep apnoea syndrome: driving license regulations in Europe. Sleep Med. 2008;9(4):362-75. 2. http://www.iihs.org/laws/olderdrivers.aspx 3. http://www.lung.ca/diseases-maladies/apnea-apnee/ drivers-camionneures/index_e.php FROM THE EDITOR Celebrating CPAP treatment Steve Creighton has been using CPAP (continuous positive airway pressure) for nearly 17 years. He is a very experienced and thoughtful CPAP user and he has some advice for people who have just been diagnosed with OSA (Obstructive Sleep Apnea): “Think about the long-term effects, what sleep apnea can do to you if you’re not treated. And realise that having OSA doesn’t just affect you, it affects your whole family—your partner, your kids, how you react and interact with them, your whole quality of life. So, if you try CPAP and it’s a bit uncomfortable—yes it might be, but it’s going to be more uncomfortable if you don’t persist and see what sorts of benefits you might be able to get from it. I would say, hang in there and even if you don’t like it, try it for at least a fortnight and within that time you should be able to see the benefits.” Steve is one of the thousands of people who have benefitted from CPAP treatment since it was invented in 1981. This edition of Snooze Newz celebrates 30 years of CPAP with stories from the earliest days of its use through to how the latest CPAP devices are designed. CPAP users and clinicians from all over the world have shared their stories with us and we would like to thank all of them for their generosity and good advice. If you’ve got a story to tell, let us know. Sleep well! Alison Hansford, Global Editor. Snooze Newz 3 Nicholas Ward makes hay while the sun shines “It made a huge and rapid difference to both our lives.” Nicholas Ward is a company director in the UK. For many years before he was diagnosed, he suffered with what he now knows is obstructive sleep apnea (OSA). This year, 2011, marks 30 years since the invention of continuous positive airway pressure (CPAP). Since then, CPAP devices have delivered a revolution in the treatment of sleep apnea. Research has kept pace and uncovered a raft of conditions associated with sleep apnea. Our understanding of sleep apnea, and how to treat it, has come a long way in 30 years. It’s harvest time in England and Nicholas Ward and his wife are helping to make hay by hand while the hay baler lies quiet and motionless, in need of repair. He’s just turned 70 and she’s … younger. Twenty years ago, if you’d told Nicholas and his wife that he would be baling hay in his 70th year, a successful, happy and healthy man, they would not have believed you. The fat boy, Joe, in The Pickwick Papers is Charles Dickens’ most popular creation among sleep researchers. He falls asleep at every opportunity. In this extract, Joe even sleeps through a battle that is being re-enacted for the entertainment of the local gentry. In the late 1980s, he wasn’t sleeping properly and his wife was living a nightmare. She’d lie awake in bed at night listening to him struggling for breath, then the silence as his breathing stopped, followed by explosive gulps as he started breathing again. It was a familiar and worrying cycle. At times, still asleep, Nicholas would jump up to lean out the bedroom window gasping for air. IF YOU’RE A CPAP USER IN THE UK, VISIT www.realsleep.co.uk TO SEE HOW THE RESMED UK TEAM CAN HELP YOU WITH YOUR TREATMENT. 4 Snooze Newz It was 30 years ago … In the early 1990s, she arranged for him to see a sleep consultant in a London hospital. The diagnosis? “You’re sleeping too much on your back”! The consultant’s first step was to recommend a tennis ball sewn into his pyjamas, but this had no effect. “I was an irritable person,” admits Nicholas. “It affected my work, my relationships with my colleagues, friends and family. I put on weight and it seemed to get worse.” Prompted by a newspaper article in 1994, his wife organised an appointment with leading sleep specialist Professor John Stradling. By then, Nicholas says, “she was absolutely desperate”. Nicholas still has the charts showing 800 arousals on the night of the sleep study. He was given an “enormous and heavy crate” to trial, an early Sullivan CPAP machine. “It was noisy and leaked like mad,” he says, “but it made a huge and rapid difference to both our lives.” He remembers ramp being a ‘revolutionary’ new feature of the S6™ he used in 2000. The S7™ was a much quieter machine, he recalls, but his mask still leaked and rainout was always an issue. Nicholas has recently upgraded to an S9 Autoset™ and Mirage™ SoftGel mask and states that there is “no comparison at all” with previous models. “They’re so improved, so different,” he exclaims, “I get a much better night’s sleep.” His wife’s life has also improved. “My wife finds it super, she’s very pleased with it. She can’t believe how quiet it is,” he says. “She does notice the odd leak now,” he confesses, “because they’re so unusual.” As a company chairman he travels frequently. The bulk and weight of early CPAP machines made flying difficult and everyone would ask what he was carrying. “No one worries about my CPAP now. It’s so small and so many people carry laptops on planes.” Nicholas was once ashamed of talking about his sleep apnea. Now he speaks of it freely and shows his S9 to friends. He’s even recommended CPAP to a few people. So at the age of 70, fit and healthy Nicholas and his slightly younger wife enjoy ResMed’s evolutionary, intuitive and whisper quiet S9 Autoset each night. Their happiness would be complete if the hay baler wasn’t as quiet as the S9! Then there was such a ramming down of the contents of enormous guns on the battery, with instruments like magnified mops; such a preparation before they were let off, and such an awful noise when they did go, that the air resounded with the screams of ladies … Everybody was excited, except the fat boy, and he slept as soundly as if the roaring of cannon were his ordinary lullaby. ‘Joe, Joe!’ said the stout gentleman, when the citadel was taken, and the besiegers and besieged sat down for dinner. ‘Damn that boy, he’s gone to sleep again. Be good enough to pinch him, sir—in the leg, if you please; nothing else wakes him—thank you. Undo the hamper, Joe.’ The fat boy, who had been effectually roused by the compression of a portion of his leg between the finger and thumb of Mr Winkle, rolled off the box once again, and proceeded to unpack the hamper. [pages 101-102] In Joe, Dickens described the symptoms of a person with possible obstructive sleep apnea (OSA) decades before scientists did. The Pickwick Papers was written in 1836–1837. A detailed scientific description of OSA came 40 years later from a London physician, WH Broadbent, in 1877. Snoring and other disturbances during sleep have been with us forever, and they have been noted since ancient times. The Ptolemy dynasty in Egypt is said to have had a genetic tendency to obesity and sleep disorders. It has been suggested that Napoleon Bonaparte, Queen Victoria and both Theodore and Franklin D Roosevelt, U.S.A presidents, had OSA. But it was not until the 1950s that the cycles and body movements of sleep could even be recorded, and 1981 before continuous positive airway pressure (CPAP) treatment was developed. Sleep apneas and sleep clinics In 1965 the first polysomnograph recorded apneas during sleep. In 1970 the first sleep clinic was established at Stanford University, California, U.S.A, by William Dement. In 1972 Christian Guilleminault joined the clinic, concentrating on respiratory disorders during sleep. The following five-year period, 1975–80, was an intense time of research into sleep and apneas with 319 articles appearing in the medical literature. In 1978 medical researchers located the source of the obstruction during OSA, proving that the airway was closing at the oropharynx, not further down in the larynx as previously believed.1 Dogs with masks In Toronto, Canada, Eliot Phillipson had started investigating respiratory control in dogs in 1970. He was joined in 1976 by Colin Sullivan on a postdoctoral research fellowship from the University of Sydney, Australia. In 1979 Sullivan returned to Sydney and devised a mask that would fit over a dog’s snout to deliver air or a gas. > continued on page 6 Snooze Newz 5 My wonderful career: an interview with Bron Lehrhaft Before CPAP (continuous positive airway pressure) therapy, people with severe sleep disorders would be given a tracheotomy. Clearly, a less invasive treatment was needed. Bron Lehrhaft was there at the beginning, treating people with the revolutionary CPAP therapy in Dr Colin Sullivan’s first sleep unit. > continued from page 5 It was 30 years ago ... ELECTRICITY REBATE Did you know that some states and territories provide a rebate on your electricity if you use a CPAP or ventilation device? These devices are classed as life support machinery. For example, the NSW Government, Life Support Electricity Rebate offers 16 cents per day for PAP (positive airway pressure) devices. You may also be prioritised for your service to be reinstated after a power failure. Contact your local electricity supplier to determine your eligibility. 6 Snooze Newz Soon, he was able to extend his experiments to humans, creating masks from a plaster cast of each patient’s nose. In 1981 Colin Sullivan used his observations of five patients to write a paper that would revolutionize the treatment of OSA.2 He describes how his patients’ long histories of noisy snoring and excessive daytime sleepiness had seriously affected their lives. Two had lost their jobs as a result of falling asleep during worktime, and one boy of 13, was unable to stay awake at school and so had been categorised as ‘mentally retarded’. Sullivan conducted three all-night sleep studies on each patient, using CPAP on the third night. He showed that obstructive sleep apneas could be reversed by using CPAP to keep the airway open. This short paper opened up a whole new world of treatment. Prior to this, people with severe OSA had to have a tracheotomy, which involved surgery to create an opening in their throat. Now, they had a treatment that required no surgery and no disruption to their life. They could breathe through the night and wake-up rested. was no longer just about relieving daytime sleepiness—there was the probability that it had a larger benefit to health as well. In 2001, further research showed an increased risk of coronary heart disease, heart failure, and stroke when a person’s apneahypopnea index is equal to or greater than 5 per hour.3 Two had lost their jobs as a result of falling asleep during worktime, and one, a boy of 13, was unable to stay awake at school and so had been categorised as ‘mentally retarded’. From the earliest CPAP devices, hand-built from pumps and pool tubing, we now have a wide choice of user-friendly, streamlined devices treating a range of conditions. Colin Sullivan’s revolution is still unfolding, as the effects of sleep apnea are more commonly recognised and effectively treated. For a piece of medical research, that’s a lot to happen in 30 years. The CPAP revolution Medical researchers and scientists started to see the possibilities of this new form of treatment. Over the next 20 years, study after study built up evidence on OSA throughout the world. In 2000, four separate articles were published that demonstrated associations between OSA and hypertension. This was a turning point in sleep apnea studies. Treating OSA References: 1. Remmers JE, De Groot WJ, Sauerland EK, Anch AM. Pathogenesis of upper airway occlusion during sleep. J Appl Physiol 1978;44(6):931–8. 2. Sullivan CE, Berthon-Jones M, Issa FG, Eves L. Reversal of Obstructive Sleep Apnoea by Continuous Positive Airway Pressure Applied through the Nares. Lancet 1981;1(8225):862-5. 3. Shahar E, Whitney CW, Redline S, Lee ET, Newman AB, Javier Nieto F, O’Connor GT, Boland LL, Schwartz JE, Samet JM. Sleep-disordered breathing and cardiovascular disease: cross-sectional results of the Sleep Heart Health Study. Am J Respir Crit Care Med. 2001;163(1):19-25. A tracheotomy is a surgical procedure that opens up the windpipe (trachea). It allows people to keep breathing even when their upper airway is obstructed. It’s a relatively simple procedure but it can affect your speech, you can’t swim, can’t have a bath, and there is a risk of infection. It is still performed when necessary, but prior to CPAP therapy it was the only treatment for people with severe obstructive sleep apnea (OSA). research into the conditions associated with sleep apnea, and a training ground for sleep technologists. Bron and her co-workers used their experience to help improve the treatment, and worked with the researchers to understand patterns in the patients’ responses. “It was a really exciting time,” Bron says. “Nurses do not usually get to work at the cutting edge of a whole new area of medicine.” The unit conducted sleep studies on two people a night. The studies were tracked by large monitors, where each of the 16 channels was nearly the size of a current PSG. Bron describes these monitors and rolls her eyes. “They were very complicated, and I don’t have a wonderful relationship with complicated machinery, so that was a steep learning curve, but I became very adept at it. You didn’t have anything else.” When an alternative treatment was developed, using a mask to deliver positive airway pressure to keep the upper airway open, tracheotomies were no longer needed to treat OSA. Custom-built treatment After three or four days in the unit, the patients would go home taking the CPAP device with them. They would have their own mask by then, made from the plaster cast. The first sleep unit Dr Sullivan’s first sleep unit using the new positive airway pressure technique opened in 1981 and Bron Lehrhaft joined the unit three years later. Bron had completed her nursing training in 1967 and followed up with a cardiothoracic diploma at Royal Prince Alfred Hospital (RPAH), Sydney, in 1968. She worked in Germany and England for many years, returning to Sydney in 1984. Obtaining the job at the sleep unit set her onto a lifetime career. “I’ve had some really interesting work as a nurse, and I’ve always loved what I did and given 100 percent,” she recalls. “But with this job I just found my niche. It was just the most incredible experience working with Dr Sullivan and his little unit.” During the first year of the sleep unit in 1981–82, there were six patients on CPAP therapy. In 1982–83 there were a further 14, then in 1983–84 another 40 patients. So there were about 60 patients on CPAP therapy when Bron started. By the end of the next year, 1985 into 1986, there were more than 90 patients. The unit became a place for People were sent to the unit from all over Australia, even though the treatment was still being fine-tuned. “At that stage it was very custombuilt!” Bron explains. “Masks were made by just one person—Jim Bruderer in the University of Sydney Biomedical Engineering Department. He would take a plaster cast of the person’s nose and make a mask from that. The masks were glued on to the face with a Silastic™ type compound that had to be mixed. But on the first night of the study with a CPAP device, I would have to search through a box of spares and find a mask that fitted as close as possible and glue it onto the person’s face. And it might mean that five or six times during the night I’d have to reglue it because we wouldn’t want to waste that time, or money, in having the patient not using the CPAP device.” Bron describes the very earliest machines as using a paint compressor motor, with the motors reversed. Thick, white pool tubing attached the motor to double-ribbed, throwaway, respirator tubing that fitted to the mask. This machine could deliver anywhere between 4 to 20 cm H2O. But, as Bron says, “It was noisy as anything, had tremendous turbulence, and breathing against it was quite difficult.” Improvements in the system Initially, patients arranged to come back to the unit after three or four months, but Bron felt that more immediate follow-up was needed. She initiated a problem clinic in early 1986 and found that patients who came to the clinic were doing better, because they were being seen more regularly. She advised “CPAP had made an enormous difference in their lives. Absolutely amazing differences.” patients to call two weeks after they had their sleep study and make an appointment to see her. “I discovered that if you left them longer than two weeks without any follow-up support then you had a greater chance of losing them,” she explains. “If you couldn’t deal with those problems in the first few weeks most of the patients would just give up and say—it’s too hard.” > continued on page 8 Snooze Newz 7 Designing for better sleep: an interview with Mark Bertinetti > continued from page 7 My wonderful career: an interview with Bron Lehrhaft Both sides of CPAP therapy Bron knows CPAP therapy from both sides now. She started using it herself a few years ago and it has given her some unique insights into the treatment. “We see people at our clinic who are not using their CPAP device properly so they think it doesn’t work and it’s not improving their condition. They might have a Ramp feature they can use to increase the pressure until they drop off to sleep, but they don’t know that. If the pressure starts off too high you’ll struggle against it, and every time you swallow you take in a gulp of air, which inflates your stomach, making you very uncomfortable by the morning. So you won’t keep the machine on all night. The Ramp feature lets you fall asleep before the pressure starts moving up.” “I still think that ResMed masks are, if not the best in the world, then they’re among the best in the world. You have to wear them firmly on your face, but if you do that they seem to suit the greatest number of faces. I’m not paid to say this—it’s what I’ve experienced. I’ve tried every mask myself for at least a week.” “ResMed’s latest, the S9™, fulfils just about every promise it makes. I use one myself and it’s an outstanding device, a totally new concept. The Climate Control on the tubing, the pressure delivery, all the other features. This winter was the first time since starting CPAP therapy that I haven’t had to put the sheet over my face to keep the tubing and mask warm.” 8 Snooze Newz … and the patients Her system was successful. In 1986–88 she did a two-year study of the patients who had been through the sleep unit and found that 89% were still using CPAP therapy. “There were some people who’d fallen by the wayside and never returned, or who lived too far away and didn’t come back, but the ones that came back were still using CPAP” she says. “And it had made an enormous difference in their lives. Absolutely amazing differences.” “I still get excited conducting a sleep study, watching the REM marching across the page then watching the obstructions and knowing that I’m holding in my hands something that will make them better.” The improvements that she observed included: less depression and more motivation; blood gas improvements; stabilization of pulmonary artery pressure; sleeping through the night; and reduction in skin problems. One of her observations about the diabetics in her care led to a study into the effect of CPAP on diabetes. The outcome of that study, Bron tells us, was that “CPAP will actually improve type 2 diabetes and improve the glucose levels in the blood, and obviously insulin levels as well.” Bron Lehrhaft is still working in the field of sleep, and is a Nurse Consultant, Senior Technologist in a private clinic. Her face lights up as she describes her work. “I still get excited conducting a sleep study, watching the REM marching across the page then watching the obstructions and knowing that I’m holding in my hands something that will make them better. I’m the longest serving sleep technologist in Australia—I don’t know if it’s in the world, but certainly in Australia. Since 1984 to now. And it has been just wonderful.” Each CPAP therapy device that ResMed makes is a completely new design, from the motor to the latches. What goes into making a new device? The first flow generators were big noisy boxes with pool tubing attached to handmade masks that were glued on to each person’s face every night. They blew air at a constant pressure all night, you needed a bank of monitors, and adjustments required an intimate understanding of the workings of a complex set of machines. Thirty years of design work have reduced these machines to tiny sleek devices that are almost silent and can deliver comfortable, individual treatment. They can tell you how many hours you were being treated, provide humidification without condensation, and attach to a range of well-fitting masks. Each new CPAP therapy device has been designed by a team of engineers, often dedicated to solving a particular problem. For ResMed’s S7™, the challenge was to integrate humidification; for the S8™ it was to reduce the size of the machine and make it more portable. The aim for the S9™ was to make it easier to use, improve humidification and remove rainout in the tube, and to be less obtrusive in the bedroom. Translating the feedback Mark Bertinetti is the current Senior Industrial Designer for Sleep Product Development at ResMed. He has worked at ResMed for almost 10 years on a range of CPAP therapy devices and accessories. He describes his job as being a ‘translator’. “I work with the marketing team to gather information from CPAP users, sleep technicians, physicians, distributors and ResMed staff all around the world,” Mark tells us. “It’s great to speak with patients directly. They tell me what would improve the treatment for them, and what feedback they would like. I hear about their basic daily routine—whether they wash their masks every day, whether they pull off the tube, how they store things, what settings they use. Then I feed this information back to the electrical, software, mechanical and system engineers. I have studied design, marketing, human factors, ergonomics, web design, materials and a range of manufacturing processes so I understand a little bit of everything. This lets me translate what I hear from the users into useful information for the engineers, and vice versa.” “It’s very fulfilling to know that your work is making a difference to people’s lives.” Mark studied industrial design at the University of New South Wales, Sydney, and worked for a design company for a number of years before moving to ResMed. He says that two main things attracted him to this job. “I really wanted to be part of a company where you get to interact with all the major aspects of the design,” he explains. “The other thing about this job is that it’s very fulfilling to know that your work is making a difference to people’s lives.” Satisfying everyone For Mark, a CPAP therapy device has to satisfy a wide range of needs. He wants it to be a positive user experience for all the different people that touch it during its lifecycle. This includes the people assembling it on the assembly line, the physician or sleep technician using it to titrate in a sleep lab, the dealer setting it up for a patient, and finally the patient and their partner’s experience with it in their bedroom. As well as being easy to use, aesthetically pleasing and able to be > continued on page 10 Snooze Newz 9 Staying alive > continued from page 9 Designing for better sleep: an interview with Mark Bertinetti “As technology changes we’re constantly able to innovate and fix problems that we couldn’t fix before.” produced cost-effectively, each new CPAP therapy device has to meet stringent electrical, software, and mechanical requirements. Mark then has to consider how it is manufactured, shipped, packaged, distributed and stored around the world. It has to meet business needs, including environmental responsibilities. Mark describes the level of detail he went into with the latest model, the S9, to minimise its impact wherever possible. He thought about every aspect, from the number of pallets that are needed to carry it around the world, to the number of wires going into the motor. “We optimised the size of the S9 to fit more onto each pallet in a shipping container, so we can ship 75% more units in a 40 foot container than with an S8. Now we’re not shipping air around the world—we’re just shipping what we need to ship. We use the bag to hold everything in place during shipping, so that minimises packaging.” Mark and his team have thought about the whole lifecycle of the product. “Because the blower is so much quieter we can use less foam than we used to. All of the materials that are used are ROHS (Removal of hazardous substances) compliant. This ensures that our materials don’t have harmful substances like lead, so when you dispose of it and it breaks down it doesn’t release hazardous substances. The software and electronics—everything is minimised. There’s less wiring—for example, we used to have seven or eight wires going into the motor but now we only have three because the sensing is done externally.” Changes and challenges Some changes are made because people ask for them, but others only become possible when the technology develops. 10 Snooze Newz Mark and his team are always looking into new technologies and this has led to significant improvements in CPAP design and comfort. “For example,” Mark says, “the new ClimateLine™ heated air tube delivers optimal temperature and humidification all the way to the mask while virtually eliminating rainout. This was only possible thanks to some incredible engineering and a new process that enables us to wind wires into the tubing’s helix and capture tiny sensors in the cuff. Prior to these technologies it wasn’t possible to cost-effectively make an automatically controlled heated tube. As technology changes we’re constantly able to innovate and fix problems that we couldn’t fix before.” Change has also occurred in the group of people who are treated by CPAP therapy devices. The wide range of devices can now treat many more conditions, from basic OSA through to Cheyne-Stokes Respiration and respiratory failure. Added to this is a broad population of well-informed people seeking out CPAP treatment. “There’s been a definite shift towards treating much younger users. Medical practitioners and the public have become more aware of the effects of sleep-disordered breathing. Youth obesity is increasing, lifestyle stresses are increasing and diagnosis methods are improving. The older, larger users haven’t gone away, but a lot more younger, socially active, working people are using CPAP. It’s been recognised that women have different symptoms of OSA, so there’s a higher proportion of females than ever before. As we treat people with different needs, the design will evolve to accommodate a greater range of lifestyles, medical conditions, aspirations, gender differences and social pressures.” This is a challenge that Mark Bertinetti welcomes. Jody Chaitovitz is a retired judge, living in Columbia, Maryland (USA) with her husband Marty and their cat, Moee. It was a pleasure to interview Jody – a woman who is passionate, energetic and enthusiastic while coping with a very painful disability. Jody has been married to Marty for two years now, but she insists that “without my ResMed VPAP™ [variable positive airway pressure device], the wedding would never have happened.” Her central sleep apnea was so bad that she could not stay awake during the day. “I was afraid to drive because I would fall asleep at the wheel, and any time we went to the movies, I would sleep through the film. The night that Dr. Schwartz and Chris Kane tested me on the VPAP, I slept through the night like a baby. When I woke up, I felt as if the world had been washed clean. I called Marty and told him that I was coming over to pick him up. ‘Yeah, right,’ he said. And when I showed up, was he ever surprised! Things went from good to better, and we married on December 27, 2009!” “Without my ResMed VPAP the wedding would never have happened.” “When I woke up, I felt as if the world had been washed clean.” Her physician, Dr. Alan Schwartz, Director of the Sleep Center at Johns Hopkins, diagnosed her central sleep apnea (CSA) and Jody worked with him to treat it. “CSA is a form of sleep apnea where”, as she cleverly puts it, “my brain sometimes forgets to tell my lungs to breathe.” She became the first patient within the Johns Hopkins system of hospitals in Baltimore (USA) on Adaptive Servo Ventilation (ASV) therapy, using a VPAP device. ASV therapy continuously monitors and analyzes a person’s breathing pattern, then provides the variable positive airway pressure support that they need. It was created specifically for the treatment of CSA in all its forms. Jody had some challenges adjusting to therapy and getting a proper seal on her mask, but worked with ResMed’s Chris Kane to resolve the issues. She hasn’t looked back since. Now, Jody says she “owes her life back to her ASV and ResMed”. Since starting therapy, Jody has noticed a drastic improvement in her quality of life and has even lost 120 pounds (54 kilograms). She says it’s not unusual for her to sleep 9–10 hours each night, “with dreams in living color” as she puts it. Jody’s perseverance was helped by her very good understanding of medical conditions. As an Administrative Law Judge for the US Dept of Labor, rising to Deputy Chief Administrative Law Judge for the New England area, she heard Black Lung, Long Shore, Whistleblower and Mine Safety cases, among others. Her career was cut short only when she became disabled by the autoimmune disease, Polyarteritis Nodosa. She describes this as “a disease which attacks the arteries by shutting them down. Whichever organ system or nerves were served by these arteries, including my lungs, were often disabled.” It also affected the nerves of her legs, which made walking both difficult and painful. She tells how her rheumatologist, Dr. David Hellmann, Chairman of the Department of Medicine at Hopkins Bayview, told her of his old mentor, “who described Polyarteritis Nodosa as ‘a hurtin’ disease’, a description more apt than I would care to take someone’s word for!” Jody is still using her original VPAP machine.* “On the few occasions I fall asleep without it, I wake up with severe headaches and nausea, and have terrible nightmares,” she says. “I still love it as much as ever, and to tell you the truth, I don’t know if I’d still be alive today if I didn’t have it.” It’s not just the VPAP that keeps Jody alive—her cat Moee has played a vital role as well. She describes Moee—a seven and a half year old, almost 20 pound (over nine kilograms) Maine Coon cat—as her ‘assistance’, or ‘service’, cat. Jody had been worried about what could happen if she fell asleep when she wasn’t using her VPAP and the CSA caused a failure to breathe that lasted too long. “But on two occasions,” Jody tells us, “when I fell asleep at the computer, I felt a tap, tap, tap on my leg, both times waking me up fairly quickly. Another two times, having fallen asleep reading, he jumped up on the table, and head-butted me awake! This is not just ‘cute’. This was brought home to me when I saw an obituary of a 37-year old man who died of sleep apnea, leaving his wife and four children. Dr. Schwartz shows that obituary to his patients as it’s not about someone ‘rich and famous’ but an ordinary man who was everything to his wife and children. He told me, ‘Now maybe they will listen!’” * Jody is currently using ResMed’s VPAP Adapt SVTM, available in the USA and Japan, and will be soon moving to an S9 VPAPTM Adapt. Snooze Newz 11 ResMed products receive award accolades ResMed staff members walked away happy from the 2011 Australian International Design Awards. In the Medical and Scientific category, the S9™ Series of flow generators and the Mirage™ FX nasal mask both won a Design Award, with the S9 Series named “Best in Category”. The Quattro FX™ Full Face Mask also starred, being commended for “Good Design”. The Design Award recognises superior innovation, while the Good Design category signifies good levels of form, function, quality, safety and sustainability. ResMed’s Worldwide Offices: Global Offices The right kind of support can make all the difference to CPAP treatment. Whether you are new to treatment or have been a user for many years, there are times when you need expert advice and encouragement. Join ResMed’s free sleepVantage or Realsleep* programs to get the most benefit from your treatment at all times, with a free customer support telephone line to answer your questions about CPAP. As a sleepVantage or Realsleep member you won’t ever have to feel alone with your treatment. Go to www.sleepvantage.com.au or www.realsleep.co.uk and join today, or contact your local ResMed office. * Currently sleepVantage is only available in Australia and Realsleep in the UK. 12 Snooze Newz United States ResMed Corp. San Diego CA USA Tel: +1 858 836 5000 or 1800 424 0737 Fax: +1 858 836 5001 [email protected] Australia ResMed Ltd Bella Vista NSW Tel: +61 2 8884 1000 or 1800 658 189 Fax: +61 2 8883 3114 [email protected] Belgium Tel: + 3215 305 673 Hong Kong Tel: +852 2366 0707 Portugal Tel: +351 210 865 760 China Tel: +86-10-68492133 India Tel: +91 11 2645 3592 Singapore Tel: +65 6284 7177 Egypt Tel: +20 3 546 8825 Italy Tel: +39 0331 931 707 South Africa Tel: +2711 793 2356 Finland Tel: +358 0 9 8676 820 Japan Tel: +81 3 5840 6781 Spain Tel: +34 916 393 579 France Tel: +33 4 26 100 200 Netherlands Tel: +31 348 411 164 Sweden Tel: +46 520 420 110 Germany Tel: +49 0 89/99 01-00 New Zealand Tel: +0800 737 633 Switzerland Tel: +41 61 564 70 00 Greece Tel: + 30 210 876 4817 Norway Tel: +47 67 11 88 50 United Kingdom Tel: +44 1235 862 997 AN IMPORTANT NOTE TO YOU, THE READER Snooze Newz publication is the subject of copyright owned by ResMed Ltd, all rights reserved. Requests for permission to reproduce contributions from Snooze Newz should be addressed in writing to the editor: [email protected] Snooze Newz is a trademark and servicemark of ResMed Ltd. Snooze Newz is intended to serve as a forum for topics of interest to people with SDB and their families. Contributions by the editor and authors may contain information or opinions that have not been verified for accuracy or completeness by their authors or the editor. You should make your own independent inquiries before relying on Snooze Newz contributions and accordingly neither the ResMed Group of companies nor the editor offer to, nor will accept liability for, the consequences of any reliance you may place on Snooze Newz contributions. Opinions by authors in Snooze Newz contributions are not intended to be the opinions of, nor are they endorsed by, the ResMed Group of companies or the editor. While the editor has striven to make correct attributions of authorship and to acknowledge ownership of copyright any omission or error is unintentional and the editor invites the notice of any suspected omission or error. Sullivan IV, S9, AutoSet, S7, S8, VPAP, Mirage FX, Mirage Quattro, Mirage SoftGel, VPAP Adapt SV are trademarks of ResMed Ltd © 2011 ResMed Ltd. 1015038 2011-11 Global leaders in sleep and respiratory medicine www.resmed.com