WARNING!!!

[socknitster]

xyz,

You seem to be taking a lot of quotes from me completely out of context. If you read the whole text of my post, you will see that I acknowledge that oceanpurl or anyone who is immune compromised could get sick from just a few germs in a cpap system. But I also did say, most reasonably, that under normal running circumstances with good care, not much should grow within a cpap system that would harm someone with normal health and function. Both statements are true.

I'm not advocating disregard for cleanliness. I'm advocating doing the best you can with the knowledge you have. You better believe that everytime I take the humidifier out of the chamber I inspect it and anything suspect is immediately taken care of.

Anyone seeing mold or cloudy water should immediately take action and reevaluate their cleaning and disinfection system. As you can plainly read here, even dme's--who are supposed to be health care professionals--are only advocating cleaning for some of their clients. Cleaning is not the same as disinfection (but may be enough for most folks under most circumstances.)

Cleaning will remove a large number of disease-causing organisms, but only by an order of magnitude. Soap and detergent does NOT kill germs--it merely washes most of them away. Those that are left are free to multiply if conditions are ripe for it.

Disinfection actually kills most disease causing organisms depending on what type of disenfectant is employed.

Your article about this LA water treatment plant is interesting. They put the water under the cover of darkness to prevent things from growing or chemical reactions from occurring. Last time I checked, my M-series humidifier was also in the dark to perform the same function.

We all do have to be careful. Being cavalier can get us into trouble. But we also have to remember that we are sufferers of sleep disorders--we can sometimes be tired and less likely to do some of the things we know we should. I know I have certainly been guilty of that.

I have learned to live with less humidified air for example in order to keep my tubing as dry as possible. As a 9-
month pregnant woman, I have had to take disinfection more seriously as well because my immune system is less functional now. I recently tried using RO water instead of distilled, but abandoned that as soon as I discovered it was possibly supporting some bacterial growth and I took a day and cleaned AND disinfected all my equiptment very thoroughly.

By the same token, germs are EVERYWHERE. We are kidding ourselves if we think we can keep them out of our homes and our bodies. The idea is to keep them at a minimal level so that their disease-causing potential is minimized. Those who are aware of their own immune-compromised positions must be even more vigilant.

THAT is my point.

Jen

[tildafish]

Thank you for your answers. After reading them.....

I immediately dumped my HH again, bleached it, washed it again, rinsed it over and over, am soaking it in water for awhile, and will then let it dry out until bedtime. I will not fill it all the way anymore, since I now must dump the distilled H20 daily and am on a very tight budget.

Yes, I am allergic to penicillin.

Luckily, I am seeing my PCP this afternoon and will have her examine me. I have a long list of topics already, so I hate to add another one,but as you said, this could develop into something serious.

It is not fair that they give ten minutes to my husband, who feels fine and is only going there because she requires him to come as often as I do to get his prescription renewed,. Then I can only get ten minutes, when I need twice that much to get through all the things that are going wrong since my last visit. He would be glad to give me his ten minutes, but procedure must be followed. Modern medicine....sigh.

I thought my post had not shown up, so I started a new topic under a guest name. Sorry about that. I hope it does not confuse anyone. Now it is not letting me submit this under my normal username, so I had to use the guest one. VERY confusing.

I have not been on this forum since I started using CPAP, over 1 1/2 yrs. ago, and had trouble getting the system to recognize me this time. I was on here a lot at the start, since I could not tolerate masks. Once I switched to the Breeze, I have had no trouble at all until now.

Thanks again for the help!
Klutzo

[socknitster]

Best wishes to you tilda/klutzo. 10 minutes is not enough, I know. I'm 9 months pregnant and didn't even get that long with my ob this morning because he was backed up. I had a million questions and concens because I will have to be induced on monday if I don't go into labor sometime in the next three days--for personal reasons that I won't go into here this was scary for me.

My doctor is awesome and I know he cares about me as a person--but he had about 8 pregnant ladies waiting for him. So, I had to suck it up and not let my emotions get the best of me. I wish the healthcare system could see that spending more time with us on each individual visit--in general, meaning most cases--could lead to us needing fewer visits in future. Certainly I wonder if my doctors 10 years ago might have discovered my sleep apnea sooner if they had done more than a cursory look at me! Might have saved a lot of doctors visits and unnecessary tests and medications over those 10 years!

BTW, I am allergic to penecillin too and as a college student slept in a dorm room one year that had a mold/dust problem--there was access in that room to an attic space that was poorly covered--there was most certainly lots of air transfer between the spaces. These were the days before people knew mold could be such a health problem. I had tons of health issues one after another that entire year. That started the beginning of what are now life long problems with allergies (food and inhaled), sinus trouble, depression and eventually the apnea diagnosis. I have no idea if it was a coincidence that all that started then, but I have always wondered.

jen

[tildafish]

Hi Jen,
Congrats in advance on your new baby! I hope you won't have to be induced. Do you know if it's a boy or a girl?

It costs doctors so much to employ all those extra people to handle all the different insurance comapny claims that they have to see way too many patients. Some docs are leaving the insurance system and finding they can see patients for 30 minutes each for about $32 each time. Our copayments are $20 for the lousy 5 mins. we get now. Might not be such a bad deal.....

I can see why they might have missed your apnea from your picture. Like me, you do not have the typical wide neck. My neck is pretty darn scrawny actually! They only caught mine because I have fibromyalgia secondary to my Lyme Disease, and they often do sleep studies to see if FMS patients have alpha-delta sleep disorder (I have that too). I actually have hypopnea, not apnea, but the effects are just as bad, or so they tell me.

My PCP surprised me and did give me all the time, since my DH was doing fine. She thinks it was just algae and that my lungs are clear and that whatever I have in my mouth is not thrush....no sores or redness. So, we are waiting to see if it gets worse or not. I had wanted a shot in my right hip, but had to forgo it until we make sure, since supressing my immunity further would not be good right now.

I am thinking that since the distilled water did not prevent this growth, whatever it is, and since from now on I will be dumping, disinfecting (probably with vinegar) and washing my HH daily, that maybe tap water would actually be better, since it won't be in there more than 10 hrs. before I dump it and it is treated with chloramines (sp.?). I need to save money wherever I can. What do you think?

Best of luck for an easy delivery,
klutzo/tildafish

[ozij]

Tilda,
A daily rinse after use, and perhaps a swish in a vinegar solution should keep your humidifier from building up a mineral deposit. The mineral deposit is the only reason to use distilled water.

I assume you change your filter as frequently as necssary, but thought it worth mentioning.

I don't have as many reaasons to be careful as you - the one thing I am very cosistned about is disconnect my machine daily from the humidifier. I keep the unemptied humidifier far away from the machine - in light (not sunshine though).

Jen,
Well thought out posts - but I would think keeping the humidifier in the dark would by more conducive to the growth of mold. The bromate in the humidifier is a chemical, which, according to wikipedia is fromed as the rusult of a bromide + ozone interaction. "In the case of the Silver Lake and Elysian reservoirs, however, a combination of bromide from well water, chlorine and sunlight mixed to form bromate".
And once again, good luck with the baby.
O.

[tildafish]

Hmmm.....someone on the other thread just told me she distills her own water and the gunk you see when you distill tap water is so awful that I should not even consider using tap water. Now I am confused, but that is nothing new.

I plan on leaving it in two pieces, drying on my dish drying rack all day, which is right under a sunny window. I won't add water until bedtime.

As I mentioned on the other thread, this HH is a new and improved model they sent me a couple months ago. The coral growth was on the two areas that are configured differently from the older model. I do not believe in coincidence and have left a message for my RT at my DME. When she calls back, I will tell her this, and ask if there have been any other cases like mine.

Thanks to all for the ideas,

Klutzo

[tildafish]

P. S. to ozij,

Forgot to say that yes, I wash the black filter weekly and change the white filter at least once a month. Cat hair is the main problem.

tilda/klutzo

[socknitster]

Jen,
Well thought out posts - but I would think keeping the humidifier in the dark would by more conducive to the growth of mold. The bromate in the humidifier is a chemical, which, according to wikipedia is fromed as the rusult of a bromide + ozone interaction. "In the case of the Silver Lake and Elysian reservoirs, however, a combination of bromide from well water, chlorine and sunlight mixed to form bromate".
And once again, good luck with the baby.
O.

I'm not sure if mold is influenced by sunlight at all--but you may be right since sunlight would keep it dryer probably. I was thinking algae actually.

Letting the humidifier dry out daily is a good plan and in sunlight isn't a bad idea either--it will help dry it out faster probably. And while stagnant water in the sun would grow algae for sure, drying things in the sun has been known to have anticeptic qualities for millenia--look at raisins and and tea and the many other food products left iin the sun to dry for preservation.

As far as what kind of water to use, I would still stick with distilled. That is just personal with me. There is a lot of stuff added to tap water.

So, you have the new m-series humidifier? I have been out of the loop so long I don't know much about it. This is the first comment I have heard about it. Did they solve the O-ring problem? That is, when you take it apart it is hard to get it back together lined up perfectly without leaks? I hope so--I ruined a nightstand because of that.

BTW, I'm having another boy. Got my exam yesterday and I'm 3 cm dilated. I really hope he decides to come in the next 3 days so I don't have to be induced either. Going for long walks and squatting on my pilates ball whenever I can to try to help things along. It is a strange thing to not know when the baby is going to come--especially hard to explain to my 4 year old son! Feeling very crampy for the last 24 hours but nothing but a few random braxton-hicks contractions so far.

I'm glad you got some reassurances from your doctor. But I'm surprised he or she said algae. Algae doesn't grow in the dark because it is a plant and needs to photosynthesize and from my experience has always been green.

Exposure to mold is common both inside and outside the home, but some people are more sensitive to mold than others, especially those with allergies and asthma. Mold exposure may cause cold-like symptoms, watery eyes, sore throat, wheezing and dizziness, and trigger asthma attacks.

Reddish or pink molds are usually species of Fusarium.

These two statements are from the following website:

http://www.bre.umd.edu/agtopics/topics-marapr-22.html

It is entirely possible that the mold you found in the humidifier has NOTHING to do with how you are feeling. In fact, I think your doc is probably right that it is probably a very small chance. However, just in case he or she is wrong, it doesn't hurt to be vigilant! And I'm glad that you contacted the dme to talk to them about it too. They may have things to tell you that could help a great deal. If for nothing else than peace of mind.

Is it possible that the distilled you were using wasn't actually distilled but maybe you picked up the wrong bottle or it was mislabeled? I have a friend who is a milk devotee who says he routinely gets 2% in his gallon of skim. I wonder if water gets mixed up too?

Best wishes,

Jen

[TossinNTurnin]

Best wishes to you tilda/klutzo. 10 minutes is not enough, I know. I'm 9 months pregnant and didn't even get that long with my ob this morning because he was backed up. I had a million questions and concens because I will have to be induced on monday if I don't go into labor sometime in the next three days--for personal reasons that I won't go into here this was scary for me.

My doctor is awesome and I know he cares about me as a person--but he had about 8 pregnant ladies waiting for him. So, I had to suck it up and not let my emotions get the best of me. I wish the healthcare system could see that spending more time with us on each individual visit--in general, meaning most cases--could lead to us needing fewer visits in future.

The only question I have is this. Why is it that SOME Doctors manage to find the time for you (albiet, not many)? I've moved more than a few times in the last decade. A couple of times, I was lucky enough to find a doctor that managed to give me as much time as I needed. In one case, I switched doctors within the same practice. The first one was always rushing me out of the office, the second one, would sit and talk with me about how my life was going and would even talk politics sometimes.

So it CAN be done IF the doctor makes time with patients a priority.

Yes, most of it is the health care system that puts an awful lot of unfair stresses upon doctors. I don't deny that. But, SOME of it is simply how well managed the office is and whether the doctor considers YOU a priority as opposed to how many bodies he/she can get through the door at $XXX a pop.

[tildafish]

TOSSIN -

I agree with you that some doctors manage to still be human.

We have a cardiologist who gives each patient 15 minutes and talks with you about your whole life, not just your heart. He also has enough staff to do everything very competently and on time, unlike most offices ,which hire as few people as they can get away with.

How does he do it? For one thing, his wife is also a doctor, so they have a higher income, and for another thing, he is a very spiritual type of guy and sees patient care as most important.

Insurance companies see it differently.....they think he wastes time and spends too much on unnecessary procedures for his patients, so they won't allow him to join some of the better plans. In order to keep him, we have to pay $150 per month more for my husband's Blue Cross plan, since they won't let our doctor join the plan we would like to have.

This doctor saved my husband's life and kept him working full time, after another heart doctor almost let him die ,so we won't give him up. We can't afford the insurance much longer though, and may have to give up all but catastrophic coverage, and just pay as we go at the doctor's office. The whole system sucks.

Tildafish

[xyz]

o
> The mineral deposit is the only reason to use distilled water.

That is -- objectively, not subjectively -- incorrect. The simplest response is that the earth is a huge place. Such an all encompassing answer cannot possibly be right for all tap water everywhere. More specifically, multiple people _in this thread_ have reported growth in their HHs.

The biology is simple. There is "stuff" in most tap water. Under the right conditions (e.g., a HH), and enough time (which relates to cleaning intervals), it will grow.

Using distilled water is a 7 cent per night decision that gives you some leeway. There is a _reasonable_ cleaning interval which is neither O-C (daily for a HH is O-C and bad advice from a DME) nor negligent/lazy. But that depends on the kind of water you use.

tnt
> Why is it that SOME Doctors manage to find the time for you

Because they are the good ones. They exist but are hard to find. Keep looking.

The others are not. When they look at you, all they see is "dollars divided by time". And their goal is to maximize the quotient.

[tildafish]

Hi Jen,
Thanks so much for telling me about the Fusarium. I will go and Google it after I get off of here. My doctor is probably just wrong and is no algae expert. She is far smarter than most doctors I've met, but is not perfect.

I did notice that my watery eyes were gone last night. I am used to getting up in the middle of the night and mopping my eyes for half an hour. I thought it was dust mite allergy, but time will tell. Maybe that stuff had been growing for awhile.

I also ruined a nightstand with the old M Series HH! The ruined part is under the machine, so I don't worry about it much. Yes, I think the problem is mostly solved in the new unit. There is a large, black plastic clamp on the top now, and two small groved slots on the bottom, as well as a thicker rim protecting the rubber part, arouind both sides of the rubber. It holds a bit less water as a result. It was the grooved slots, as well as a new semicircular shape inside the new HH that grew the pink stuff.

My DME has not called back. Probably afraid of a law suit!

I put the empty HH back inside the machine for half an hour so I could run the machine to get the headgear dry this morning. I had the HH turned off. I hope that was OK. I could not get the machine to run and dry the headgear without putting the HH inside it. I took it out and took it apart again afterwards and put it back on the dish rack. I guess people with masks don't have this problem, but nasal pillow systems have a separate thin tubing attached to the headgear and when you clean the nasal part, water gets in there.

I hope your new little boy will be here soon!

Tildafish

[socknitster]

Hi Jen,
Thanks so much for telling me about the Fusarium. I will go and Google it after I get off of here. My doctor is probably just wrong and is no algae expert. She is far smarter than most doctors I've met, but is not perfect.

I did notice that my watery eyes were gone last night. I am used to getting up in the middle of the night and mopping my eyes for half an hour. I thought it was dust mite allergy, but time will tell. Maybe that stuff had been growing for awhile.

Well, there you go! That is no small thing. I wouldn't expect a doctor to be an algae expert either! I can't imagine how they remember all the stuff about medicines and tests etc. etc.

Me? I'm not any kind of medical professional. I have a degree in biology from a small fine arts college. I studied it because it fascinated me and it continues to. That and my interest in medical and other scientific studies has served me well. It certainly pays to be able to read some of the crazy scientific terminology. I am one of those people with a voracious appetite for knowledge about just about everything.

I hope you continue to feel better. The mold could have been there a while before you saw it--it starts our microscopic, of course. Make sure you don't have any growing anywhere else in your house, OK?

Jen

[goose]

The o-ring problem still exists as far as I can tell....I get a new tank every 3 months because the old one has started to leak. I've gotten to where I don't take it apart.....I still haven't "activated" my HC150 HH as my table isn't wide enough for it to sit on.....Soon!!!!

I wouldn't think sunlight would be a good thing for that o-ring myself. The UV will cause it to deteriorate much more rapidly....

Just a thought
cheers
goose

[TossinNTurnin]

tnt
> Why is it that SOME Doctors manage to find the time for you

Because they are the good ones. They exist but are hard to find. Keep looking.

The others are not. When they look at you, all they see is "dollars divided by time". And their goal is to maximize the quotient.

True. I guess my point is, it's not JUST the system or the insurance companies, (but of course, to a great extent it is and I'm not marginalizing it).

I'm just trying to say, that presuming it's just "the system", means, in a way, that we don't have the power to expect better from our doctors.

But, there are SOME doctors out there that seem to manage to spend time with us at our appointments and fit us in when we need to see them in a reasonable amount of time etc...


It CAN be done. And doggonnit, I want to be one of those people who are lucky enough to have a doctor that can provide the kind of care I deserve.