Posted by NikkiB on January 11, 2008 at 19:39:46:

Hi everyone,
It's been quite some time since I have posted, so I will do a short recap of what I have, in the hopes that this will make more sense.

I am 27 and have a neuromuscular disease called infant-onset Mitochondrial Myopathy (commonly called Mito) that is in the end-stages. As far as we call tell, I am the oldest living person with my specific type of infant-onset Mito. I am using a VPAP II ST-A 24 hours a day, currently with a Mirage Vista mask. I am totally dependent on the VPAP to do all my breathing for me. I started on CPAP therapy at age 10, switched to BiPap ST therapy at age 14, and switched to my VPAP II ST-A set in Timed Mode in 2002, when I needed ventilation 24 hours a day. In addition to the Mito, I have Congenital Central Hypoventilation Syndrome, which causes me to lack the instinct to take a breath. That combined with my totally atrophied lung muscles, I am in constant need of non-invasive ventilation. In addition to my VPAP I use a Pulse Ox while sleeping and for spot checks (every hour minimum) during the day. I also have a Capnometer used for spot checks and I wear it constantly when ill. I have a lot of other life-support machines and other equipment but won't get into them as they have nothing to do with this - I don't want to put you all to sleep! I have one machine bedside that I use while sleeping, another machine on the back of my wheelchair that is used during the day. My main settings are:

IPAP when awake and moving: 23
IPAP when sleeping: 21.8
EPAP (both machines): 4
BPM (Both machines): 10
IPAP Max (both machines) 2.2
Tidal Volume while awake and moving: 600
Tidal Volume while asleep: 500
I:E ratio (both machines) 37%
Set in Timed mode only on both machines

Because I am on the machine constantly, I am starting to try some different interfaces for different uses. I am going to try an angled mouthpiece for some daytime use, but I am also wanting to try the Oracle 452 by Fisher and Paykel. My pulmo wrote a script for it, I ordered it and it is in the mail (as are my angled mouthpieces by Respironics).

So my question is (And you thought i would never get there!!)

While reading up on the Oracle, it said it should be used with a heated humidifier. I am only going to be using the Oracle for short periods of time during the day, and only at nighttime when I am too congested to use my Vista. While awake I drink a lot because I get dried out even with my humidifier. I am using a simple passover humidifier right now and in my 17+ years of pap therapy, that is all I have ever used. I have never used a heated humidifier. The reasoning there is that with a heated humidifier there is a small - very small - increase in the risk of Pneumonia. Because my body is already in a very weakened state, and because any kind of illness tends to land me in the ICU, we try to avoid everything we can that can cause things like Pneumonia. My medical team decided that heated humidification just wasn't worth the risk.

But now I am really wanting to try this Oracle, but I can't use a heated humidifier. My Pulmo (who specializes in treating adults with neuromuscular disease related respiratory conditions) said that I am his first patient to try the Oracle, so he is unsure whether or not it CAN be used with a passover. He is going to contact Fisher and Paykel, but wanted me to do some searching also. Our big question is, is the heated humidifier an absolute *must* have for the Oracle or is it possible to just use it with the passover? I am unwilling to go to a heated humidifier, and would rather try other interfaces than risk getting Pneumonia. I haven't had Pneumonia since getting my Vest Airway Clearance System, but my lungs are starting to get a tad junky again. My pulmo ordered a CoughAssist though which should help. Basically I don't want to use anything that can cause Pneumonia, but I really would like to try this Oracle. Thanks for any help.

Nikki

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