Time For A New Machine

Been a few years since my last post but once got all the information I could and a machine that worked with best results they trials of doing home healthcare for a disabled wife, trying to work with myriad of health issues from broken and ruptured disks in lumbar, thoracic and cervical spine plus left leg rebuilt from titanium following a bad evening involving a deer and a motorcycle plus both shoulders rebuilt, one elbow and one knee with a hip to come soon along with a pituitary cancer but that caused adrenals, thyroid and more to go loopy life is doctors offices, surgeries, caring for wife and trying to work enough to pay the bills. Also my doctor advised that the less I obsessed about my sleep disorder the less it would have me rattled and flipped out as bedtime approached. I am a researcher and have a habit to learn too much and often scare myself as learn the long term effects of some of my issues such as living off multiple medications to keep adrenal, thyroid and testosterone levels in the safe zone along with relatively recent prostate issues and worry about cancer coming back with at least a dozen pain management outpatient procedures per year with sedation.

Somehow even though use a UPS to protect my BiPap ASV from power surges, spikes, brown outs and power failures my machine has died. Current machine was a Phillips Respironics System One BiPAP autoSV Advanced till recently died and using my old BiPAP as wait to see the durable medical equipment people. Doc believes my complex sleep apnea is caused by heredity, severe head injury at base of skull from fall off cell tower and pinched nerves in broken neck and possibly the treatment when had the tumor radiated and chemotherapy.

Before I meet the representative to discuss new machines would like some other complex apnea users opinions on equipment. I require a full face mask and have never fully adapted to the machine used past six or so years as wife said it looked like I was wrestling with it every night often throwing the mask as far as hose allowed. I best describe it as a lobster holding on to my face holding a fire hose trying to drown me. Are any of these newer machines less aggressive or at least slower to ramp up and go from comfortable idle to sudden attack of an industrial air compressor? What are you complex apnea patients requiring an ASV liking these days?
Thanx, Michael

You still pretty much only have 2 manufacturer choices when it comes to ASV machines....Respironics and ResMed.
Between the 2 the Respironics is the slightly gentler unit in terms of pressure changes and such.
There is now a newer Respironics model ASV from your old System One. Called the DreamStation ASV but they didn't really change much in terms of the internal algorithm or how it goes about doing its job.
There might be a couple of added comfort settings which could maybe be tweaked a little to maybe help with the problems you have with the machine in terms of how quickly it responds. Maybe get you so that the machine is a little more in sync with your breathing.
Several "maybes" but it's not like you have any choices anyway. Sorry.

As Pugsy said -- you've got Resmed and Respironics.

I don't know the Resmeds, but I've had the Remstar ASV, the System One 950 ASV (which is now my travel machine) and a Dreamstation ASV.

All have worked well for me, though they've required a bit of tweaking here and there.

Some people consider the Resmeds better.

I wish you luck in finding a system which will work better for you -- you have a hard row to hoe with everything you have on your plate.

Had a hard time but much I did to myself living hard and fast climbing mountains all over the planet, racing bicycles and riding motorcycles when knew deer were active and should have been parked an hour earlier. My sleep apnea was diagnosed by a doctor took as a client guiding on a trip to Peru. My main climbing crew and I would take as many clients as could get for first 14 to 17 days of a trip and acclimatize while guiding them up minor peaks or trekking the Inca Trail, especially the highest section called the "Trail to the Sun". After clients went home we would be fully acclimatized and stay anorher three or four weeks climbing taller technical peaks where I learned not to go to sleep above 16,000 ft or would wake suddenly feeling like I was drowningl We had a solid group of locals which we always took over the same hotel when first arrived in Lima then on to Huarez which is located at 14,000 ft then porters and cook crew in rhe mountains. Many cooks didn't understand hygiene especially with us sensitive gringos and many climbers trips were ended with horribe stomach viruses.

Once we got into the mountains I slept in my own tent as all my climbing partners would not share a tent with me above 14,000 ft. Said my regular rythmic loud snoring would stop and it would wake them to discover I was turning grey or blue and still as a corpse. They would roll me and said would hack a couple times and go back to snoring. The doctor client on one trip asked another of the guides why I had my little one man single wall tent and set up away from group. He told him if I slept near the other tents my snoring would keep people awake then if in tent with others when stopped snoring and turned blue or grey it was freaky. He asked to rearrange sleeping one night as wanted to observe me and discovered when was snoring different body movements he interpreted as hypopneas and when stopped turning colors had stopped breathing completely and heart rate was dropping into near death zone. He encouraged me to get a sleep study when got back to U.S.A.

First night in the most inexpensive copay sleep lab my doctor recommended after checking in and getting wired up took my nightly Lunesta, pain pill so back would not wake me and laid a diazapam and glass of water next to bed to take if back woke me up. Fell asleep and woke to a technician bagging me and another prepping the defribulator as I had been not breathing and heart gone erratic for over three minutes before they were able to respond. This was while they were just transitioning from natural sleep to very low pressure to study sleep at natural state then ramp up pressures and see where I slept best. It scared the techs in the small lab so bad after a phone call they told me test was over and to go home. I had a Lunesta and pain pill still at full effect and they put me in the road and out of their clinic when my doctor said they should have called 911.

Now all my sleep lab tests are done in a major hospitals sleep lab where they are prepared for such. My first full night in this sleep lab my AHI was in the 180 range and they sent me home and had durable medical folks deliver a CPAP same day which I used for two weeks then the sleep techs analyzed my data, sent to doctor who ordered another lab which had me a BiPAP the next day which I used for two weeks. Took it in where they pulled the data and next day was called to schedule another sleep lab where I was moved to a BiPAP ASV which still have nights with AHI as high as 85 to low 100's but usually in the 30 to 50 range with machine leveling out a major event in under a minute. Without looking at the data can tell by when I wake and how I feel if it was a bad or good night. If was bad wake after three to four hours, go to recliner and usually nap off. They tested me in a recliner and with body elevated my AHI is half of laying flat so have a sleeping wedge in bed now that elevates me starting at waist to head about 30° and has helped keep my AHI down.

Insurance always wants cheapest way out and why said had to start with a CPAP, then BiPAP and then had to prove it wasn't working before buying a BiPAP ASV. Am using my BiPAP machine now as can't meet with durable medical equipment people till next week as have outpatient surgery on Thursday and they can't work me in before and I am relegated to bed rest for 48 hours following outpatient. Have been looking at current equipment and talking to doctor who recommended the Respironics Dream Station aSV. Of course will be the usual bickering with insurance but doctor will be insistent. My next question is travel a lot and moving a big machine is not only a problem, feel it may be part of what killed my Respironics System One. Have seen the $899 BiPAP ASV travel machines. Whill finances are tight with wife's $3,500 month bone medicine that medicare nor private insurance covering is the performance of the travel machines good enough to use away from home and save moving my primary machine. If could get a small enough machine that ran off batteries might be able to do some Rocky Mountain, Wind Rivers, Tetons and Cascades climbing again on short trips climbing fast as miss the mountains terribly.

Hi Hueyville,
I am a new CPAP user. I have not experienced enough with the CPAP machine. I have no suggestion to give you. But your issue and the given solution by other members has helped me a lot. In future, if I face such type of problem I will recall your thread.

hueyville wrote: ↑

Tue Sep 17, 2019 1:01 am

Now all my sleep lab tests are done in a major hospitals sleep lab where they are prepared for such. My first full night in this sleep lab my AHI was in the 180 range and they sent me home and had durable medical folks deliver a CPAP same day which I used for two weeks then the sleep techs analyzed my data, sent to doctor who ordered another lab which had me a BiPAP the next day which I used for two weeks.

The 180 AHI is hard to believe....that would mean you stopped breathing an average of 3 times a minute for the entire period you were tested. I think your heart would be severely damaged without oxygen that long.

Found sone old reports on phone from my BiPAP ASV. Doctor said what kept me alive was fact I had spent 30 years climbing high altitude mountains and racing bicycles from North Carolina mountains to the Rockies which kept me in top physical condition. My body was used to being under stress with low oxygen especially mountain climbing in the 16,000 to 20,000 ft above sea level range and often short roping (pulling a team member with a tight rope to relieve stress) a team who was running out of gas within sight of a summit. Spent more time training my body than most spend working and held down a full time manual labor job.

While I likely had mild apnea for a while the severe symptoms did not appear till fell off a cell tower during the big 4G change over where ever telecom was racing to upgrade and subcontractors could not only name their price but get all the work able to complete. We were racing up towers and got lazy one really hot day when doing a very easy and quick job, jumped out of truck and did not put on harness or helmet and somewhere between 30 and 40 feet up slipped while trying to unlock the ladder barrier that was designed to keep people off the tower if didn't have key to lock. Landed in manner hit rear of skull on concrete pad which broke C2/C3 vertebrae along with fracturing skull and damaging cerebellum which controls motor function plus doctor says good chance the damage to neck is impinging on nerves that send signals to lungs.

This was post pituitary cancer where had gone through radiation and chemo treatment to shrink the small tumor on pituitary gland which controls the endocrine system and the cancer tratment damaged the pituitary. It controls thyroid function, adrenal glands and reproductive system. After the cancer went into remission my thyroid now flips between hypo and hyper thyroidism thus at times produces too little and have to take a suppliment then others it will over produce and have to take med to slow it down. I can tell when it flips or flops as will suddenly find myself amped up like taking speed, hyper, or feel sluggish and not wanting to do anything, hypo, so call doc for blood work and switch med and dosage. We did blood work ever two weeks, then monthly and now every two months as I pick up on the flip faster than the blood test. My testosterone level went from normal to Free testosterone level of 2.0 when for age/activity level at time doctor said should be 12 to 30 and my Total was under 50 when should have been between 300 and 950 plus Bioavailable was 18 and supposed to be between 60 and 200.

Was also diagnosed with Addisons Disease which is when adrenal levels drop too much all due to a loopy pituitary gland which is in the worst place to operate right between the nerves that go from eyes to brain so even a small slip means blindness. Friend had recently had the surgery and doctor was only able to get about half the tumor which meant chemo/radiation anyway so I skipped the removal due to small size of tumor and risk. Have to take Hydrocortisone which dosage doubles in summer as work outside in heat and weather like this summer it's not uncommon for me to go into adrenal shock and pass out before able to give myself a glucocorticoid injection when begin to crash. Wear a medicalert bracelet but has happened enough that when someone sees me laying unconscious on a job site the local F.D./ambulance show up and hospital has them give me the shot in ambulance and by time reach hospital the on call usually checks vitals for 30 minutes and turns me loose. Luckily since worked 20 years as volunteer with EMA/911/F.D. they always pick up my tools, ladders and secure them in truck so not stolen while getting to hospital and back.

All of this supposidly complicates my complex sleep apnea and do have very high AHI. I still train within my limits and at age 56 am average 5 pounds under to 15 pounds over high school weight and swing 20 pounds from summer to winter. Put in 20 every winter as work slows and heat is not torturing me. By end of summer drop the 20 pounds, often more so have closet segregated into summer, winter and transitional size dress cloths for church and places need to dress nice plus work cloths in dresser in three sizes. 32" waist which are baggy end of summer, 34" waist for late fall and mid late spring then 36" waste for winter. Have a lot of good doctors locally, at Emory and Shepard Spinal Center that keep me alive and in the game. I follow directions and always do what can to keep fit which doctors say is key for me if want to live considering not only the issues but side effects of taking eight medications daily.

Found these from a while back and are screen captures from my BiPAP ASV data and represent common nights sleep even with the machime. If had time to sit at main computer where store decades of photos and images can find much higher numbers but seldom a night where AHI is under 50. Just like my urologist says from family history and two prostate biopsies my now normal PSA level is averages between 8 and 11 he is not concerned where most would be scheduling a prostate removal with those numbers. Get enough things going on in one patient and if a doctor is not familiar with their case history can freak out. Why have the medicalert bracelet plus a medicalert necklace with built in USB drive that keep last three years reports from all my specialists updated and all previous x-rays plus latest MRI's so if go into E.R. following an accident then doctor can figure out which is new damage, old damage and what normal vitals are for me. Do not have high blood pressure, resting heart rate in 50's and no hint of diabetes or other disease from poor eating or lack of exercise. Just a ton of stuff mostly related to many injuries sustained from life of high risk sports at competitive levels and physical labor related accidents. Have probably fallen off more ladders than most will climb in a lifetime as work on ladders every day I do get to work. Right now sitting on side of road waiting on client to be sure I put sign in correct place.









Try dragging your tail end out of bed to go work on ladders with 96° temperature like today with heat index of 108° factoring in humidity along with my other issues. I will hopefully work till die as enjoy working and have no plans to retire unless God tells me different.