Biphasic Cuirass Ventiliation by Hayek Medical -- anyone have experience with this?

[jfaidley]

I wanted to check this out, as my husband uses the Trilogy 24/7 and experiences many discomforts due to the pressurized air being forced into his nose or mouth. Makes him congested and sneezy, which is an issue because he can't clear secretions easily. It's way worse when the humidifier is not in use -- and since there are apparently no humidifiers that don't have cords, using humidifier means being tethered to the outlet. He also has self-image issues about being seen with the mask on...

Anyway, a friend sent me a video of the above, and it seemed potentially very helpful. Uses negative pressure to expand the lungs (like an old fashioned iron lung), but portable. To me, it very closely mimics physiologic respiration, and seems like it would eliminate some of the above discomforts.

Has anyone else tried this? Would love to know if others have found it helpful or unhelpful. Our RT said he last saw equipment like this being used over 20 years ago -- and at that point, he said most patients found it cumbersome and ineffective. But of course technology is likely to have advanced since then. Thanks in advance for any feedback!

 

[lgelb]

The CoughAssist is the more modern version of this in a more episodic form. Your doc can write it for him to try. The Trilogy also has numerous modes and settings that your husband may find more comfortable, since congestion is a response to the environment as you say.

I can help you explore the options if you can post his settings and whether he perceives that his breathing is too fast/slow/short/long/deep/shallow. You might also try a nasal mask -- most people do not need a full-face version.

As for being tethered to a humidifier, see if the DME will let him try a portable CPAP with pressure relief (the Z1), or you could buy one to try -- there is a 15-day return period. There is a built in HME (humidifier moisture exchange) function in line with a max of about 3cm pressure relief that is auto-adjusting, so it's a BiPAP lite in that sense. We used the Z1 (there are 3 models now) when we went out [up to 3 weeks before he died], and during transfers, using the HME. You can rinse it instead of changing it every day (would get pricey) so long as you are not sick.

 

[jfaidley]

Thanks for the info. He's tried a cough assist, which does not work for him. (Though he did not give it much of a shot--he has about zero patience, so if there's not a pretty clear and immediate benefit, it's nearly impossible to get him to keep trying...) As for the Trilogy settings, that does not seem to be a problem -- for a person who is pretty un-accepting of discomforts in general, he adjusted without much trouble to having the machine breathe "for" him, and doesn't complain at all about the quality of the respirations. And he does wear a Dreamwear nasal mask that seems to be about the least obstructive option I've seen ... does not get in the way of his vision, for example.

We are trying to get insurance approval for the Hayek, as it is very expensive. If it's effective, I'll post our experience. But will definitely keep the CPAP/HME option in line for consideration. I had considered an HME, but the RT was not so encouraging, seemed to think they don't do a whole lot. I have to say, though, I've not been too impressed with the quality of the info I get from him so far, so good to have your perspective.

 

[lgelb]

No question, the HME humidification is not as robust as chamber humidification. But it does just enough, for many people. It is a little hard to explain, but the physics of the portable motor are such that even when there is the same "IPAP" on the machine, the flow is not the same, so not as much humidification is required.

 

[preacherman]

Back to the BCV..... while researching PAPs and such I ran across some info about BCV and it looked very interesting.
While I am not anywhere near ready to start worrying about Invasive ventilation (not wanting to say this too loud), what I have seen of BCV it looks like a very viable option to Invasive Ventilation and even to daytime bi-pap use.

I, too, would be interested to hear if anyone has spoken to their doctor about this or, even better, any direct experience with it.

 

[jfaidley]

Just an update on my status: I am seeking an appointment with a pulmonologist for further info - a bit of a hurdle since no clinician has much interest in a phone consult with a non-patient, and I am not dragging my husband anywhere (as it involves carrying him down the steps, and he does not tolerate cold well) until I know that they have at least heard of the system and would be in a position to evaluate its usefulness for him, personally. Sadly, the ALS Clinic he attends has been more than useless - has actually made my life hugely difficult the handful of times I've asked for their assistance. So leaving them as a last-ditch effort if this other strategy proves fruitless. Will definitely post if I get any info!

 

[preacherman]

I had an appointment with my pulmonologist the other day (regular scheduled visit). While I was there I just casually inquired about the cuirass to get his take.
He seemed surprised with my inquiry... he seemed to think that it was something no one would think of or suggest. His reasoning was that with all of the advancements in PAP systems, etc, that there was no real need for such an antiquated piece of equipment.
The 'Iron Lung', and anything that resembles one, is pretty much obsolete.

I asked about the small personal cuirass and he said that there were maybe three people in the whole U.S. who use them, and that you could get the same therapy with a PAP without all of the cumbersome equipment.

I told him that I agreed as long as NIV is sufficient, but what about such time that a trach would be necessary....
And what about ... assuming that you are having to use NIV day and night... using the PAP at night to sleep, but using the cuirass during the day so that the mask is not interfering with anything you are trying to do..... and what about the constant irritation of the mask on your face or nose with no relief?

He kind of tried to avoid any further conversation about it. Guess that was pretty much his opinion then.
Undeterred I pushed further so he went into the Trilogy... his opinion is that if you are needing a bi-pap constantly what they would recommend would be to have two Trilogies... one in the bedroom for sleeping with a mask, and the other as kind of a portable unit with either a mask or sip-and-puff set up. With the sip-and-puff you could get the support you need without having to use a mask 24/7.

I told him that was all ok, but what about in lieu of a trach?

His thought was that if you were that far advanced and you chose to continue with invasive ventilation a trach would be much less restrictive than a personal cuirass.
Not to mention the discomfort of having this 'shell' around your mid section all day.

All makes sense I guess, but I would still like to hear what others have to say about it.

 

[lgelb]

Re the constant irritation of a mask -- you do not have to wear the same mask all the time, and a light nylon fabric mask over your nose (not plastic) may be more comfortable. We also discuss paper tape, liners, etc. for greater comfort. Anyone who finds their mask a problem that keeps them from BiPAP hours should be looking for another mask. cpap.com and other sites frequently have masks with free return privileges if it doesn't work, and you can also pay a few dollars more to get return insurance with other masks.

 

[jfaidley]

Preacherman, I got the same general feedback from the RT who provides our Trilogy, but he admitted that he had not had any experience with any more updated version of the technology, so could not comment on that. I will continue to look into it, as I think the "iron lung" concept is theoretically sensible (ie, breathing "naturally" by chest expansion -- albeit with help -- rather than having air forced into your lungs). It seems to me someone has seen fit to re-visit and update a technology that has been in the dustbin for a very long time (probably for good reason), and they may have a hard time shaking the "old fashioned" label.

Re: masks, we have tried all types of masks, and he dislikes them all because, well, they're masks! Sort of reminds me of middle school when I was trying to convince my trumpet teacher that I really, really wanted to quit playing the instrument -- he kept coming up with solutions to my objections, until I finally said, "Mr. Schneider, I just don't like to BLOW!" So I think the only mask that he would find acceptable is a non-mask. This is the (frustrating) case with most of the technology he needs nowadays, but since there is a possible alternative in this case, I want to try to get some firsthand info before giving up.

I did ask the vendor if she had any local clinicians who have experience with this device, and she is planning to connect me with some hospitals who are using it. So am waiting to see how that shakes out. Will continue to update if/when I get any useful info.

 

[affected]

You might talk to the vendor about a free trial so that you can write a testimonial for them?

 

[preacherman]

, and a light nylon fabric mask over your nose (not plastic) may be more comfortable. We also discuss paper tape, liners, etc. for greater comfort.

any idea who makes or supplies such a thing?

My RT knows nothing about them (big surprise)..... though she is still really not speaking to me anyway.

 

[lgelb]

Circadiance. Available at cpap.com, et.al.

 

[jfaidley]

Update on this: the RT who is a rep for the vendor (Hayek) will be in NYC next week, and is coming by so that we can try it out. Will post about the experience after...

 

[jfaidley]

So a little late with this update...I'm sure everyone on here will understand how that happens! We had a trial run of the BCV/Cuirass (Hayek medical) negative pressure ventilation system, so here's what we found:

1) Looks like a clear, hard plastic turtle shell that fits over the whole torso, on the front, and fastens around the back with two velcro straps. Goes over clothing, not right against skin. There's a foam strip running around the edge of the plastic (where it fits against the torso) for comfort, and to help form a seal. So not a complicated piece of equipment. The turtle shell portion did create somewhat of an obstruction on my husband's lap, which is sort of precious real estate for him because of his very limited arm and hand function. He rests his cell phone here since he can't hold it up -- and the shell portion would get in the way of that.

2) No mask. Awesome! He tried it out for 5 minutes or so, during which he seemed to be breathing comfortably and said he felt comfortable. So to me, seemed great not to have something over his face or nose. My hope is that it would not provoke the frequent sneezing/mucus issues that the PPV seems to, but we did not try it long enough to have any idea whether this would be the case. Anyway, this is the principal benefit of the system...

3) He said he had some trouble talking, but the rep said people adjust to that pretty quickly -- ie, synching your speech with the artificially-induced respiratory effort.

4) It's not portable, has to be plugged in. So not useful for going out, and could definitely be a pain for someone who moves from place to place a lot. The rep said the company has plans to develop a portable unit, but for now, you're tethered by the cord. So maybe good overnight or for someone who is not moving around much. She also said they usually get the insurance companies to authorize both systems. (I'll believe that when I see it...looking forward to a battle with United Healthcare/Oxford!)

5) For PALS who are fairly dependent on respiratory support, you'd definitely need to have a PPV system as a backup, because you need to remove the turtle shell for bathing and changing clothes and stuff

I think that covers the main points. I'm reading over this and thinking, "Wow -- way more downsides than upsides!" But I guess for PALS (like my husband) who hate, hate, HATE the obstruction and respiratory passage irritation of the PPV system (despite trying most of the helpful tips that are out there), and whose insurance company is willing to authorize, it could be valuable to spend some part of each day unencumbered in that way. I don't think it would be a major benefit to PALS who are pretty accepting of and comfortable with PPV.

Hope that's helpful!