- Joined
- May 29, 2014
- Messages
- 1,013
- Reason
- Lost a loved one
- Diagnosis
- 04/2014
- Country
- US
- State
- VA
- City
- Poquoson
My wife, Darcey, chased a diagnosis of CIDP for over a year. Breathing was becoming a challenge at night, when laying down. Initial "cannot ignore symptoms" happened in November of 2012. In February of 2014, we were referred to and seeing a specialist at Johns Hopkins in Baltimore, MD. During his eval, he discovered that Darcey had lost over 100 pounds of weight over the previous year and that she was finding it uncomfortable to lay flat on her back to sleep at night... as she would often feel out of breath which would wake her, even as tired [exhausted] as she was. He almost seemed angry as he asked about how she felt during the day. "I fall asleep, often. I can even fall asleep in the middle of a conversation", she said. He said, "You are losing so much weight because you are having problems breathing. CO2 is building up because your lungs are having difficulty doing the proper exchange. So you're working overtime to try to breathe better [enough] at night... and it is like you are running a marathon each night while trying to sleep and rest up. You are not resting and you're burning calories that you need to be holding onto." No sleep study necessary. He immediately ordered a BiPAP.
I use a BiPAP for sleep apnea. I had an extremely difficult time adjusting to it. Today, I can't sleep without it. And even if I could sleep without it, I would not. I was concerned that Darcey would have difficulty adjusting, too. SHE DID NOT. Immediately, she was sleeping better through the night. Immediately, she was no longer falling asleep during the day. Immediately, she stopped losing weight. For her, it was a saving piece of equipment (one of the many she would come to appreciate during her ALS journey).
A month later, she was scheduled for a MRI on her head. She was unable to lay down without her BiPAP. They tried to give her O2... but that just didn't cut it. Ultimately, she had to reschedule and use an MRI that allowed her to be upright during the process.
I hope you're able to get providers correctly in line to provide you with the equipment that will be the most helpful to your every day well-being.
Jim
I use a BiPAP for sleep apnea. I had an extremely difficult time adjusting to it. Today, I can't sleep without it. And even if I could sleep without it, I would not. I was concerned that Darcey would have difficulty adjusting, too. SHE DID NOT. Immediately, she was sleeping better through the night. Immediately, she was no longer falling asleep during the day. Immediately, she stopped losing weight. For her, it was a saving piece of equipment (one of the many she would come to appreciate during her ALS journey).
A month later, she was scheduled for a MRI on her head. She was unable to lay down without her BiPAP. They tried to give her O2... but that just didn't cut it. Ultimately, she had to reschedule and use an MRI that allowed her to be upright during the process.
I hope you're able to get providers correctly in line to provide you with the equipment that will be the most helpful to your every day well-being.
Jim