As a Courtesy -- My Mask Situation

[Madalot]

I am planning to take a break from here, but I realized that my mask situation, as far as the board is concerned, is still pending. People have been very kind and helpful and it's important to me to let those people know how it finally worked out. And if anyone else runs into this problem, they might benefit from this --

Remember that my F&P 431 was suddenly leaking badly from the two holes on the valve. Every 431 I have did the same thing.

I met with the owner of my DME on Monday morning. He is recovering from surgery, but came in to try to help me figure out what was happening. We spent about two hours there, trying everything we could think of, including hooking everything up to a backup ventilator he has to see if it was my ventilator. It was kind of neat being the ONE that knew how to set up the second ventilator -- There were numerous people watching to see what I was doing on the settings. And I learned a lot about the ventilator because it was set up for a different patient and I could see what options came up based on their settings.

Because I need a full face mask and the 431 is the only one I've found that works, we opted to try something a little unconventional and probably not terribly accepted --

My DME figured out that if you plugged ONE of the two holes, it seemed to stop the hissing and worked okay. He was concerned that plugging one of those holes would cause the buildup, so he told me to PLEASE hook up for 15-30 minutes before going to sleep and make sure I didn't start feeling weird or anything.

So, we taped up ONE of the two holes -- and I'm back to sleeping fine and doing okay.

[ozij]

I've just seen the original thread on this problem here:
viewtopic.php?p=546808#p546808

Okay -- I got it. The exhale ports are higher up and I'm very careful at night not to block them. The leaking is coming from the two holes ON the valve itself. If you plug them, the hissing stops. What my husband said is the valves are not closing like they should -- they should only open when there is a drop in pressure and you need those holes to breathe (right)???

But we took a new valve from a brand new mask -- and it's doing the same thing.

It's the next morning --

We tried every 431 I had -- all brand new. They all did the same thing -- hissing like crazy from the valve area. I'm going to clean the 431 I've been using really well and see if that makes any difference, but I don't have a lot of hope for that.

F&P use the same antiasphyxia valve for all their full face masks.

Back in June of this year I posted the following:

F&P non - rebreathing valve malfunction?

I'm trying the F&P full face mask that I got today -- a Forma.
Unlike other FFM masks I used, in which the non-rebreathing valve snaps shut with a "pfutt" - when pressurize air comes in this one does not, and air keeps coming out of it. That doesn't seem right to me --
I'd appreciate comments from other who use Fisher & Paykel full face masks. The non rebreathing valves are the same on all models.

My starting pressure is 7.2

Thank you
O.

The replacement valve I got was just almost as bad -- I have hardly used the Fisher & Paykel mask because of that -- and the Hybrid turned out to serve me fat better. Looks like F&P have a bad batch of safety valves.Since this is an antiasphyxia valve, the DME's solution means that should power fail, and should the valve open as planned, you'll be getting fresh air through that single hole.
The valve is upposed to be firmly shut when you're on the machine, but its supposed to pop open when the machine in not functioning. If I were to try that fix, I would try breathing with the machine off and the mask on (is that what you did?), and I would check my oxygenation when doing that. Does your vent holler when it uses power? If it does, then I don't think you have reason to worry about that fix. If it does not, then if it were me, I'd get an alarm that starts making a ruckus when it loses power. That way, my breathing wont depend on a semifunctional anti-asphyxia valve made by F&P.

I remember reading a user comment, on cpap.com, that that he has to replace the valve every 2 months(!) which is bad enoug. But this sounds ever worse.

Your courtesy, Madalot, may be a big help to someone.
All the best to you during your break.

O.

[Madalot]

Ozij --

Thank you for this information. Based on this, I have contacted my DME and asked them to contact F&P and inquire about the valves. IF F&P acknowledges a problem with the valves, I would hope they would replace the ones I have.

During all the testing we did, we did hook me up to the mask without the ventilator on, but did NOT do a pulse ox during that time.

The ventilator has two batteries which will run the machine for an additional 6 hours during a power failure. There shouldn't be an interruption in function, but even if there is, it should only be a few seconds.

The ventilator will display an Event Alarm (not audible at this point, but it WILL show up on the display) if there is a power loss. If it happens during the night, the screen saver will go off and I'll see the light -- I'll know if there is a problem.

Ozij -- thanks again for this information. This is why I LOVE this site and hate the fact that somebody feels the need to harass me.

[ozij]

Please let us know if F&P respond. Let's hope they will be better at serving their customer than Resmed were with the Swift LT pillows.

[Madalot]

Please let us know if F&P respond. Let's hope they will be better at serving their customer than Resmed were with the Swift LT pillows.

Will do. My DME has already responded and said they will have their people contact F&P and ask and will let me know. I'll post to this thread when I hear back.

This has helped me a lot with your reply, plus if it helps somebody else, it's worth coming in to post.

Thank you again, Ozij.

[DoriC]

Ozij --


Ozij -- thanks again for this information. This is why I LOVE this site and hate the fact that somebody feels the need to harass me.

We LOVE having you here, and there are hundreds of us and only one of him! You're a valuable asset to this forum and your post may be helping others right now who are having the same problem with their masks. I used to be uneasy posting here(not your reason) but as a spouse who wasn't really the patient. But after finding that sometimes my perspective as the caregiver/observer might be helping others in a small way I stayed, learned so much about my husband's therapy and feel at home here. I know it's easy to say when it's not me being harrassed but someone on the forum I admire once said to me, "Important problems will find you, unimportant ones will disappear unnoticed while you're doing something more important". It made sense to me at the time and I took it to heart. It turned out to be true. Keep us posted.

[Madalot]

Ozij --


Ozij -- thanks again for this information. This is why I LOVE this site and hate the fact that somebody feels the need to harass me.

We LOVE having you here, and there are hundreds of us and only one of him! You're a valuable asset to this forum and your post may be helping others right now who are having the same problem with their masks. I used to be uneasy posting here(not your reason) but as a spouse who wasn't really the patient. But after finding that sometimes my perspective as the caregiver/observer might be helping others in a small way I stayed, learned so much about my husband's therapy and feel at home here. I know it's easy to say when it's not me being harrassed but someone on the forum I admire once said to me, "Important problems will find you, unimportant ones will disappear unnoticed while you're doing something more important". It made sense to me at the time and I took it to heart. It turned out to be true. Keep us posted.

Thank you, Dori. As usual, you are kind, sweet and understanding - a real tribute to the true meaning of this site.

I intentionally came in this morning and posted about my mask because it occurred to me that I was leaving people hanging. By posting, Ozij saw it and provided additional information that may prove to be the key to solving the problem. And whatever happens, I will keep my promise and post if/when I hear from my DME or F&P about the valve problem. If we hadn't come up with a work around on Monday, I'm not sure where I would be right now -- up a creek probably. And if this experience can help someone else, I'm glad I had a lightbulb moment over it --

I agree that there are hundreds of good people and only one of "him" but it doesn't change the fact that he is relentless in his attacking behavior and despite the protests of many, ignoring him only exacerbated the problem. This troll is NOT going to go away on his own. And my departure (not that it's happened yet, but you know what I mean) resulted in his choosing numerous others to impersonate and pick on.

Dori, despite all this, your words are wise. Unfortunately, I despise bullies. And I have little respect for people that pretend a bully isn't doing anything wrong (not referring to you, my dear Dori, because I know you aren't saying that at all).

[jbn3boys]

Madalot,
I am a rather newbie on the board, but I too, will missing having you hear. You have been a wealth of information to me, and I will continue to refer back to posts that you have commented on. I pray your departure may be temporary, and that the troll is truly taken care of. I wish you a very Merry Christmas, and pray the new year will be wonderful for you (and that you'll come back and join us )
jbn

[Jersey Girl]

Dear Madalot,

Please don't leave the forum! Don't let one person chase you out when there are so many here who love you and care about you. Sometimes I think about this forum as one large family and as you know, there's always at least one in the family who's making trouble!

Please think about staying with us, since there are many here who care about you and truly value your posts as a wealth of information.

Warmly,

Jersey Girl

[Madalot]

Madalot,
I am a rather newbie on the board, but I too, will missing having you hear. You have been a wealth of information to me, and I will continue to refer back to posts that you have commented on. I pray your departure may be temporary, and that the troll is truly taken care of. I wish you a very Merry Christmas, and pray the new year will be wonderful for you (and that you'll come back and join us )
jbn

Dear Madalot,

Please don't leave the forum! Don't let one person chase you out when there are so many here who love you and care about you. Sometimes I think about this forum as one large family and as you know, there's always at least one in the family who's making trouble!

Please think about staying with us, since there are many here who care about you and truly value your posts as a wealth of information.

Wow -- I'm overwhelmed here with the sentiments being expressed. And I thank you both, and all, for them. I do NOT want to leave or even take a break. I find a lot of information, help and comfort here. But when I am so upset because some internet bully has targeted me, I need to get my priorities in line.

I guess the jury is out on this right now.

[DoriC]

Dear Madalot,

there's always at least one in the family who's making trouble!

Warmly,

Jersey Girl

JG, Are you speaking of my brother-in-law by any chance??

[BusyLyn]

Another newbie chiming in here. I haven't used chat here yet, but I don't plan on using it until the big bully is removed. The main part of this site has been wonderful so far and I've learned a lot.

I live in a private community and we are having problems with a few adult (in age, not behavior) bullies right now. Some people think the main bully is just great, most are in lala land, and the rest of us are beginning to fight back. As you can see, there are bullies everywhere, and we have to fight them everywhere. If you have to leave for a little while to get your inner self calmed down, then so be it. I hope however that your absence is only for a very short time, as the true members of this group will sincerely miss you!

But even without me asking you a specific question, you've helped me today by coming here to let us know the latest about your F&P mask problem. By posting here, and Ozij responding to your workaround, you two have given me some questions that I will bring up with my sleep doctor and DME next week when I go shopping for a new FFM mask. I'm seriously considering an F&P mask, but not if it will leak like a sieve.

Please calm down asap and be ready quickly to rejoin the rest of us battling the demons of sleep apnea!

Lyn

[chunkyfrog]

Madalot; Thank you for the info about the F&P. I had been considering a 431. As always, your knowledge is reliable and generous.
No wonder the troll found you a threat. Know this, that we care for you and value you; and even negative actions directed toward you are more an indication of the troll's weakness and insecurity--and indirectly also a compliment. (I know, hard to believe)
Sleep well and remember you are blessed by many.

[Madalot]

Madalot; Thank you for the info about the F&P. I had been considering a 431. As always, your knowledge is reliable and generous.
No wonder the troll found you a threat. Know this, that we care for you and value you; and even negative actions directed toward you are more an indication of the troll's weakness and insecurity--and indirectly also a compliment. (I know, hard to believe)
Sleep well and remember you are blessed by many.

You are very kind. Please know that despite this recent problem, I still love the 431 -- it's the ONLY mask I have ever been able to use consistently -- I'm sure we'll get this leak issue resolved.

[Madalot]

Another newbie chiming in here. I haven't used chat here yet, but I don't plan on using it until the big bully is removed. The main part of this site has been wonderful so far and I've learned a lot.

I live in a private community and we are having problems with a few adult (in age, not behavior) bullies right now. Some people think the main bully is just great, most are in lala land, and the rest of us are beginning to fight back. As you can see, there are bullies everywhere, and we have to fight them everywhere. If you have to leave for a little while to get your inner self calmed down, then so be it. I hope however that your absence is only for a very short time, as the true members of this group will sincerely miss you!

But even without me asking you a specific question, you've helped me today by coming here to let us know the latest about your F&P mask problem. By posting here, and Ozij responding to your workaround, you two have given me some questions that I will bring up with my sleep doctor and DME next week when I go shopping for a new FFM mask. I'm seriously considering an F&P mask, but not if it will leak like a sieve.

Please calm down asap and be ready quickly to rejoin the rest of us battling the demons of sleep apnea!

You are very kind -- and I appreciate the kind comments. I'm glad that the posts between me and Ozij have helped. As I said in the previous post, I love the 431 and it's the ONLY mask that I have really used consistently. I'm hoping that Ozij is right and the valves are faulty -- that can be fixed.

Thank you for chiming in here. It's nice to know that my coming in today to post about this has helped a few people. That's what this site is all about.