Mouthpiece ventilation

[OneEternalSonata]

So, tomorrow I get a ventilator mounted on my wheelchair, as my breathing is very shallow due to Duchenne Muscular Dystrophy weakening my lungs. My body's CO2 concentration is high due to this, as well. Some of you may relate a ventilator to a trach, as a majority of ventilators are always connected to the patient. In these cases, the ventilation is on timed intervals, breathing without patient initiation. However, I'll be using a ventilator with a mouthpiece, which only mechanically breathes for me when I seal my lips around the mouthpiece and initiate it.

Does anyone on this forum have any experience with this equipment?

Admittedly, I have mixed feelings about it and, while I know in my head that it'll help me, I am a bit sad about it. It means my disease is progressing. At the same time, because of this technology my mortal life will be prolonged. That is a great blessing. I won't overlook that. I'm happy, too, that Heavenly Father inspired people to make such technology and made it accessible to me. Bitter when seen with "natural" eyes, and sweet when gazed upon with eternal perspective. Naturally bitter, eternally sweet.

[beefche]

Wow, such a mixed feeling going on. So sad that your disease is progressing, but glad that there is a treatment. I don't have any experience with this equipment.

I'm sorry Eternal. Let's agree that you and I will sit together in the next life when we take the class "Our mortal life--the Good, the Bad, the Ugly" by Job (I think Paul does a guest appearance).

[OneEternalSonata]

Sounds good to me!

[WmLee]

I have no experience with this one but your situation has hit the heart strings. As a father/grandfather/retired protector of the public my first reaction is to fix it for you and make it better. I can't, but I can tell you the short bit you've posted has helped me more than I can explain. If no one has an answer or an experience to share know that you've lightened my load today! Thanks.

[OneEternalSonata]

I don't often share personal things of this nature... but I'm glad my post lightened your load.

To think my Savior knows my pains and bore this burden, too, is a great comfort to me.

[FairChild]

I haven't had a client on a ventilator yet, so I can't tell you what I don't know cause I really don't know anything. I do know I am glad that you have an appliance that will help you do what you want to do. I know it will help you feel better and you will be able to do a bit more than you are now. I am so glad you come chat with us and that you are my friend. FC

[joel99]

I have nothing to add about the vent but out of curiosity have you looked into the trials they have using the drug Losartan to help treat your disease?

I have another disease which they're experimenting with this drug - I'm taking it but am not in a formal trial.

j.