Mike, even as pissed as I am, (and you KNOW I am!) I don't think I would assign "cover-up" to this deal. My gut sense of it is that the MDs who do it are so focused on patients getting treatment, specifically CPAP in this case, and so many people are resistant anyway, that they worry that informing about possible side effects will scare people away from treatment.
I've seen the EXACT same thing happen with oncologists who over and over don't give patients information re: risk vs benefit prior to the patient starting chemo or radiation treatment. Then when some of the inevitable side effects begin, patients get really upset and anxious, and sometimes VERY angry when they find out that it's not unusual. The oncologists tend to say things like "If I tell them what the possible/probably side effects of (whatever treatment it is), they'll develop those symptoms". AS IF!!!
I didn't like it when I was working with cancer patients--I don't like it now. But I honestly don't know if it smacks as much of "cover-up" as it does terribly limited thinking, particularly specialists, re: patients rights to make INFORMED decisions. It's almost as if the more dangerous the illness is, the more the docs just want to treat and not talk about it much.
Don't get me wrong!! I'm NOT defending the practice--good God, after what I've been going through, I wouldn't wish it on anybody. What chaps my ass is that if I'd known what it WAS, I could have been handling it from the get-go instead of having 5 months of misery that, I think, was unnecessary.
Like I told you, before you posted this, my concern (always on SG) is for new people coming in. I don't want anyone to make a decision out of fear, based on what's happening with me. Despite the fact that CPAP is the contributing factor here, and probably will continue to be a chronic issue for me, I'm not even CONSIDERING d/c-ing treatment. I know too much now about how dangerous apnea is. AND I also already have heart disease so I'm double-jeopardy. But even if I weren't a heart patient, I wouldn't stop CPAP. There are just too many reasons to stay compliant.
So here we are again, on SleepGuide, hashing things out and trying to figure out how it is that we can find ways to optimize our (difficult) courses of treatment. How the hell do we navigate the health care system? I was a practitioner for many years and even knowing all that I know about communicating, here I am in a mess because, for whatever reason, I didn't realize I was gonna have to fight my caregivers for information.
It's not news to me, people!!!!! I've seen it happen to a gazillion patients!!!
My youngest son came within an inch of dying from pneumonia 3 years ago because two different MDs didn't listen closely to what was happening to him. WE knew he was desperately ill--they thought he had "a virus". I sat in the hospital with him, all night, every night, and watched him dying right in front of my eyes.....turned out his immune system has been compromised by Type II Diabetes. We didn't know that was even an issue at the time. The pulmonologist who cared for him (from ER on) said he was too sick to move to a hospital better-equipped to care for him, but he saved him anyway. Sweet Jesus.......another totally different scenario than apnea, but same problem. Communication, or rather the lack thereof.
Just my opinion, but I don't think the problem is only relative to sleep specialists. I think it's (probably) rampant among many MDs, for who truly knows what reason. ( I can just hear Dan Lyons right now: "It's a $$ issue--they're just out to make as much $$ as possible!).....lol Maybe he's right. I don't know. But sleep docs are the ones we're concerned with here, so what ideas do any of you guys have?????
I read on the internet that we shouldn't stay on CPAP with an upper respiratory infection (see!, that's the kicker for me--I KNEW on a gut level that I was having side effects although nobody would say that, but it never occurred to me that I have an infection--never even occurred to me. This doesn't have some of the features, at least not yet, of an ordinary sinus infection. But it's some kind of miserable, I know that.....). The kicker, as I understand what I read, is something about pressure on the ears with CPAP running. Don't quote me on that 'cause I didn't study the article, just read it.
I just can't reconcile in my mind a plan that includes stopping a treatment, that everyone says is keeping me from dying in my sleep, for a week. I can't imagine how that's safe. Months ago I'd have probably welcomed the chance to stop!, but not anymore. Now I get it. Now I'm more comfortable with that stupid mask on and the machine running than I am without it. But that's what new people don't know yet.
This is turning into my thinking out loud which probably isn't helpful for what we're trying to sort out, sooooo.....
What do you guys think? I REALLY need some input here. I don't want this to turn into a bitch session, at least not endlessly--but I DO want to know what any and all of you think about the lack of upfront communication.....
Thanks for listening. I wouldn't have posted this till Mike really wanted me to. Now that he's posted it (with my permission), and now that I've started putting it down myself, I'm glad I did.
Thanks, MIke, for encouraging me to speak up about it. I truly DO trust this Forum and everyone on it--have for many months now.
Susan McCord (ain't go no smiles to give away at the moment--sorry.......)
I am sorry to hear that you have a sinus infection, I know how are miserable they are. Has your PCP started you on an antibiotic? I wonder why your cardiologist states that sinus infections are common for people on CPAP -- and I think that he is probably wrong. I have not seen any documentation or heard of people on various forums that they have had increased rates of respiratory infections. There are a number of people who have various type of congestion, and I occasionally see some people who blame their CPAP for a cold, but I see no pattern of infection. A CPAP would make a sinus infection more miserable and it may make some people more susceptible to respiratory infections, but I don't see that there is an issue.
WOW. And here I sit right now with a whopper sinus infection....the second one I have had in the 7 months I have been on CPAP. I always clean my machine and mask and hose. I feel horrible and had one heck of a time sleeping last night due to the sinus infection...probably going to head out for some antibiotics tomorrow...
Sure would have been nice to know that this is a common side effect. I will give my sleep specialist doc a call tomorrow. If I have something to repot I will post it as well. bee
Avoiding PAP therapy out of fear of getting a cold would be silly. And you get colds from other people, not from yourself.
Sure, you should clean your stuff for the same reason you wash your dishes after a meal. But there is no need to get too obsessive about such things under normal circumstances. A climate-controlled home is a different environment from the outdoors, but every home is different.
It is true, though, I think, that it is not uncommon for someone starting out with CPAP to get a whopper of an upper respiratory infection sometime during the first few weeks/months, because the pressurized air creates a new environment in the airway that the upper respiratory system has to adapt to. As it adapts, that window allows opportunistic bugs an opportunity to make it past the defenses in the sinuses. If it happens, it happens. No big deal. Being forewarned about the possibility wouldn't help too much, I don't think. The important thing is to get used to the therapy.
When that infection occurs, if a patient feels unable to make the decision about whether to discontinue use for a few days in that circumstance, the patient may want the input of his primary care doc or his sleep doc. But the answer may depend on a lot of factors. For example, if an otherwise healthy patient has relatively mild sleep apnea, a night or two without PAP, in order to help the body deal with the infection, won't likely do much damage. That person may choose to spend a few nights sitting up sleeping in a recliner, no big deal. On the other hand, a person with very severe apnea and a heart condition may want to think about things more seriously and not make the decision all on his own. So the answer really does depend on many factors.
PAP therapy can cause irritation to the sinuses. But with proper humidity and a good mask and some time and experimentation, most can find a way to make it work. It may take saline or nasal irrigation or maybe even a medicated nasal spray--but there are things to try.
There is no conspiracy, though. Personally I agree that compliance is more important than avoiding use of CPAP for fear of getting a cold. Such problems can be solved with good communication with docs and with one another here as patients as we help one another try solutions one at a time, scientifically and methodically, to get things as good as they can be.
That is my understanding as a patient based on what I've read in forums.
Does anybody have any links showing that CPAP increases the likelihood of respiratory or sinus infections? I have never seen anything that would indicate that this is a known problem -- and I have been reading about sleep apnea and treatments for the past 10+ years.
I just did a quick Google search and found one cite that has some information: http://www.ncbi.nlm.nih.gov/pubmed/11353913
"Nosocomial infections are recognized as a major problem in patients with endotracheal ventilation, but the risk of nosocomial pneumonia is less well known and considered to be lower for patients on noninvasive ventilation. ... The notion of a specific risk of noninvasive ventilation-related nosocomial infection is less certain although current data do show a risk level no higher than in non-ventilated patients. ..." I added the emphasis.