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.