Myasthenia Gravis News Community › Forums › Healthcare and Treatments › Just Started Ultomiris today › Reply To: Just Started Ultomiris today
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MemberTonya, thanks for your reply. The bipap machine I use is primarily a sleep apnea device and not a more complicated respirator like very advanced units. In 2008 my sleep test showed an AHI of over 140 apnea or hypopnea events an hour. Using my device I have reduced my events to 1 or less per hour. The pressures I use are quite low with EPAP of 8cm H2O and an IPAP increase 4 cm H2O. It is auto adjusting up to EPAP of 21 cm H2O and max IPAP of 25cm. Unless I use a nasal mask and experience mouth leakage it rarely rises more than 2 or 3cm. These low pressures do not cause central apnea events for me.
I have had many EKGs since 2020. In early February I undiagnosed Covid 19. Luckily for me and my wife Covid 19 hadn’t entered mainstream consciousness. We just knew that we were experiencing the absolute worst flu ever and did not seek treatment. We weren’t subjected to intubation on a ventilator and killed like so many were after the pandemic became known. My bipap did help me considerably. In October 2020 I had a pulmonary embolism that I blame Covid for. I developed atrial fibrillation which I didn’t realize until I bought a Smart watch which informed me I had a problem. Things progressed until I had bradycardia. My heart rate of 30 made thinking impossible and I spent a couple of years circling the drain until my WONDERFUL angel of a nurse at my infusion center literally forced me to seek a pacemaker. One week later I had my brain back and felt the best I ever had since my 1st bout of Covid.
Starting out at the ER seeking the pacemaker I have had many EKGs since then. On October 13, 2025 I started taking Zepbound as a treatment for sleep apnea and I have lost 75lbs to date. Since I started taking it at 420lbs, I felt that loss of muscle was an acceptable risk to ultimately get to a healthier state from which I will start recovering muscle mass from some weight lifting training. Currently that goal is hampered by an umbilical hernia that has become mandatory to repair. The weight loss is going to make my surgery much more survivable.
Dale