Hi I have been asked to go into Queen Elizabeth hospital for 2 or 3 nights to get fitted for one of these , I am unsure to go in because of the Covid rates and the fact They cant guarantee I wont catch Covid. Is there no way they can do this at my home.
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Some clinics set up NIV at home, so it can be done and, as most machines can be adjusted remotely, bringing you in can sometimes seem over the top.
The specialist nurse from my clinic and a respiratory technician came to my house and set it up for me, easy and unstressful.
If you have recent enough pulmonary function tests or even a SNIP test, that further strengthens your case to have it set up at home, that said, settings for ALS are fairly standard and can be monitored and adjusted remotely. Add in a community or hospital nurse who can call to your house and get CO2 readings from your blood, and you've a case to make.
Good luck.Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Thanks Ellie for that . I have a Skype call with a Consultant from the respiratory clinic tomorrow. I had the sleep test thing last week when a nurse dropped the machine off and picked it up the following morning. My Carbon dioxide level is between 8 and 9 and they say a normal reading is 4 and I have too high a reading . and been pushing for me to attend the Queen Elizabeth in Glasgow. I am terrified its heaving with Covid,Comment
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