I took this forums advice

[KevinR]

I have been using my BiPap everyday for anywhere from 10-12 hours each night. This was not an easy task but the longer I used the machine and as my events per hour decreased I began to wake up feeling more like myself. While that feeling doesn’t last all day and by seven pm my body begins to just shut down. My last doctors appointment they discussed upgrading to an NIV or as I remember it a trilogy ventilator. My body doesn’t like change so I’m not sure if that’s for me? I was hoping for some feedback from this group before I make my final decision.

Next great thing I did was go with the PEG tube early in my disease. I lost 15 pounds and knew that without an intervention I was losing weight too fast. Kate’s Farms one to two a day. The issue is the gastric distinction and delayed gastric emptying. I fixed that by titration of fluids over two hours. Plus, I couldn’t get a pill down to save my life. As a retired nurse I have so much love and compassion for all those meds I crushed and mixed in applesauce and or pudding.

I know we all have different reactions to this disease but my constipation was the most pressing issue. I think the tube feeding has helped that but I also added one tablespoon of fiber and one tablet of the probiotic lactobacillus. My primary diagnosed me a neurogenic bowel and bladder which is common with motor neuron disease.

Again thanks for the advice and I’m looking forward to thoughts about the NIV.

 

[Nikki J]

What you are describing about the feeling better not lasting all day says to me clearly you need to be using respiratory support during the day. Have you tried using your current machine?

 

[KevinR]

It’s been recommended thus the NIV. In the mornings ( as long as I’m not struggling with constipation and or clearing secretions I have some energy and can walk some). But by five I feel like I’m out of gas.

 

[lgelb]

I'm presuming you're talking about going from a machine that uses AC power to one with a battery. Of course, that will help you use it more, when you're not tethered to a cord.

Many Trilogy machines have been recalled, but some DMEs are still circulating them. I would make sure if that's what you get that it's not on the FDA's list, but, more broadly, I would prefer any model except for the Trilogy (e.g., Astral, Luisa, Breas).