Oxygen and CMT

[lowther1]

Does anyone have oxygen at night, and has anyone taken it on holiday with them? Also how does it effect insurance.?

[MommaWheels]

I have oxygen at night. As a result of the CMT my pulmonologist diagnosed me with restrictive lung disease and tests showed that my oxygen was going so low when I slept that my body's system were not working. It was so dangerous that they put me on the oxygen at night right away. I have a giant oxygen concentrator next to my bed that is very difficult to travel with. The company i get it from has slightly smaller ones that come in a rolling suitcase that I can rent when I go on vacation. Apparently I need the large ones because they give continuous oxygen versus the smaller pulse ones with are based on your breath.

I'm in the US so I'm not familiar with how insurance is in the U.K. I am still able to work with some accommodations so my insurance covers it except a $5 monthly copay.

Good luck with it. I was upset when I first got it but it makes a huge difference with how tired I feel and I wake up with MANY less headaches. I'm glad my doctor thought to test my oxygen levels!