Keep the beast CLEAN!

torontoCPAPguy wrote:

BlackSpinner wrote:

DreamStalker wrote:
Sorry to hear about your bacterial experience. But how do you know the bacterial source was from your CPAP equipment? Did you actually have your equipment tested for being the source?

If you read his older posts you would know he had the infamous swine flu which ended up with him on cpap. His immune system is now very fragile and he is very right to be so concerned with the cleanliness of his equipment.

True and untrue; a mixed up story at best as we have learned over these past three years. Yes I did have H1N1... so did my entire family and the entire family that we sat with at an RCAC banquet in 2009. I am the only one that wound up in hospital with acute bacterial pneumonia. The reason? As it turns out, the reason was very likely UNTREATED sleep apnea, compounded by UNTREATED Atrial Fibrillation (likely linked to the apnea) and 'mild' Type II Diabetes being treated by a small dose of Metformin daily (likely linked to the apnea, believe it or not). This is what we have learned after three years of making the rounds of doctors, specialists, professors of medicine, reading many research and white papers, etc. The H1N1 was a mild cold-like flu and 99% of those that contracted it had it go away in a week or so. Many never even knew they had it and were carriers. It was the very young, the elderly, AND THOSE WITH COMPROMISED IMMUNE SYSTEMS or those that were simply 'run down' that had a chance of the bacterial gift left behind blossoming. I was one of those. 99% never had it go any further than a week of cold like symptoms.

During the investigations into my lung capacity after my life support stint and into my shortness of breath, we came upon sleep apnea. At almost the same time we came upon Atrial Fibrillation but did not recognize it as such and it was a fluke ECG at my family physician's office to 'test out' his new ECG machine at the suggestion of my wife that aFib was suspected and then confirmed after MANY rounds of tests. The diabetes 'came and went' like the wind. I had, at once, a family physician, an endocronologist, a respirologist, a cardiologist/electrophysiologist, a pulmonologist and more. As well as a host of technicians and clinicians. All running around in circles. They were sure I had allergies causing the shortness of breath at night, etc. I didn't believe a word of it after a while and began researching myself and putting my medical tests and records together to reach the point that I am at right now.

I thank you for your kind words and 2.5 years ago my immune system was indeed fragile; CT scans showed 'inflammation' everywhere. Pleural effusion (water on the lungs), cardiopulmonary effusion (water on the heart), liver and kidneys working at a fraction of their potential, bacterial intrusion into my stomache, etc. Oh, add a gastroenterologist to that list of doctors.

With the start of XPAP therapy and the 'perfection' of same, which we all strive for, things began to improve rapidly. With the diagnosis and proof of Atrial Fibrillation I began to supplement my diet and changed my diet to exclude almost all processed foods... I went on a "paleo-like" diet. No flower. No sugar. Etc. I stopped taking all statin drugs, unbeknownst to my family doctor, who commented on my cholestorol being 'in line' a year after I had flushed all my statin drugs down the toilet. He kept prescribing and I kept flushing and getting healthier. I have been on TIKOSYN for the aFib since December and have a follow up in August with one of the top cardiologist/electrophysiologists. We are hoping that my heart will be in shape after seven months of Normal Sinus Rhythm for me to have an ablation procedure to resolve THAT issue.

Funny thing is that much of what I am hearing, reading, discussing, focuses on the link between apnea and many, many other afflictions - and perhaps I am living proof (if not, check out aFibbers forum for more proof). Sleep apnea is not only a danger and deadly on its own.... it begets many other issues and if not addressed it WILL run you down and open you up for infection, afflictions and general "inflammation" as they call it on the aFib boards. My lungs are at 65% capacity today. Not much I can do about that. But my "inflammation" appears to be gone. No more stomache or intestinal issues. Kidneys and liver and major organs working quite well. No more pleural effusion nor cardiac effusion. Diabetes pretty much under full control with minor meds. And my last hill to conquer is that aFib.

Bacteria in the lungs is of itself a menace; but more so, detracts from the immune system's ability to fight other infections that are attempting to make headway in your body. What my CBC was two or three years ago is a far cry from what it is today. These are all common blood serum tests that everyone should be having at least annually at their physical. Know what your body is doing, where it is going and where you stand.

And for goodness sake, why would anyone introduce bacteria into the deepest and most vulnerable recesses of their body when it takes so little effort to avoid it? I am living proof of what that bacteria can and will do if your system is run down (i.e. by apnea) and how long and uphill the struggle back to good health can be. With the exception of having my tonsils removed when I was 4, I had not spent more than an hour in a hospital my entire life until that little bit of residual bacteria took hold and put me on life support. Regretably, that was MY fault. I knew I snored copiously and loudly. I knew that there were night sweats and sudden awakenings gasping for some air. I knew that I had not dreamt in 40 years (sign of no REM sleep) and that I was often tired on awakening, etc. And I ignored it.

I ignore nothing any longer. EVERYTHING is a big deal to me now. I intend to live to 120 years of age come hell or high water. A spot on my skin where there was no spot yesterday will take me to the family doctor to have it looked at. Ditto my wife and she has caught a couple of carcinomas that way in the past few years. (Did you know that they don't have to cut the carcinoma out these days? They have an injection and a cream that will kill the cancerous cells!)

So, again, thanks for remembering me and for the kind words. BUT, I am getting healthier by the day despite my brush with the grim reaper. And postulating over the past three years (three years and two weeks) there are a number of finite conclusions that I have come up with regarding apnea and my other afflictions, past and present. One of those is "cleanliness is indeed next to godliness" or.... put another way.... "let the shmutz and crap accumulate without cleaning it and you will find yourself next to God if you have lived a clean life".

user from Singapore wrote: Of course I agree that if you have complications after H1N1 and that it opens the door to bacterial infections - not mentioning the issue of low immunity - it can be very nasty. I can say I personally feel for you as my son was also seriously infected with H1N1 and him being asthmatic we were quite concerned.

My point was that
- many got infected without noticing it or showing symptoms. Therefore, the lethality was certainly over estimated and I fully agree with you that further complications can be a real problem when the patient has other issues.
- "normal" flu kills 18,000 people in US every year if I am correct but nobody cares. I think that there has been a lot of "noise" made on this subject. And a LOT of money.

archangle wrote:Sometimes the guy crying wolf is like the guy who kept saying New Orleans is a disaster waiting to happen before Katrina.