TRILOGY 100 SETTINGS - LGMD

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mshellt6
New Member
New Member
Posts: 3
Joined: Thu Oct 13, 2016 11:22 am
Diagnosis: LGMD
Diagnosed: 2013
City: tyler
State or Province: tx
Country: usa

TRILOGY 100 SETTINGS - LGMD

Postby mshellt6 » Thu Oct 13, 2016 9:03 pm

Dr. Bach, I have LGMD which effects my lungs and heart. My pulmonologist has put me on the Trilogy NIV, and this has been working well. I have recently had more shortness of breath, loss of energy, not sleeping well, and loss of appetite. I don’t think my ventilator settings are correct. My pulmonologist just isn’t knowledgeable with neuromuscular patients. I have made an appointment with Dr. Viraslav in Dallas, but that is not until Nov. 9. Are there any max/min settings for NIV that you could forward to me? Any help would be greatly appreciated. Also, they have put me back on O2 @ 2l all the time. My toes and fingers turn blue.
Last edited by mshellt6 on Tue Oct 18, 2016 1:31 pm, edited 1 time in total.

mshellt6
New Member
New Member
Posts: 3
Joined: Thu Oct 13, 2016 11:22 am
Diagnosis: LGMD
Diagnosed: 2013
City: tyler
State or Province: tx
Country: usa

Re: TRILOGY 100 SETTINGS - LGMD

Postby mshellt6 » Sat Oct 15, 2016 2:28 pm

Also, my pulmonologist put me on 2l O2 all the time. I am currently only using during the day while walking. But, my family thinks I need to be on the O2 all the time because of my cardio issues. My feet, toes, and fingers turn blue. When I get on my NIV, goes away.


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