The oxygen man (also know as a respiratory therapist) showed up for a consultation yesterday to make sure that I was doing ok with my oxygen. He obviously disliked his job or co-workers or someone because as soon as he came in, he asked me who was paying for the oxygen because his form said that I was private pay. I said that I was covered under the NS CF plan and have had that confirmed with both Vital Aire in Toronto and NS. He replied that I was probably wrong and that they will only bill NS for 3 months and then I have to pay from pocket.
He then went on a huge rant about how his co-workers never provide him with the right information and billing shouldn't be part of his job. He called two of his co-workers and left them passive aggressive messages about how he didn't have the right information and could they please do their jobs better. It was all a little more drama than I was expecting from the oxygen man.
While he was waiting for a response, he took my vitals with and without oxygen and had me go for a walk down the hall connected to the machine without oxygen and after 5 minutes my levels super dropped to below 88%. Arg! (I was 98% on oxygen, 94% on room air, 95-100% is the normal range, below 88% is not good news)
I've been told that I should be using oxygen for every day walking around but no one had ever shown me the proof so it was easier to ignore. Now I have empirical evidence that I should indeed need to be on oxygen even while casually wandering around the city. Because when I did the same walk with the oxygen, my oxygen levels barely moved.
The problem is that I don't really notice when my oxygen levels go super low. I mean I know I get short of breath when I'm walking up stairs or a hill or something but I don't notice when I'm just walking on flat ground. However, just because the side effects aren't super obvious, it obviously isn't good for my body to be deprived of oxygen. It means my heart and body has to work harder to get enough oxygen to my limbs and brain. This makes me have endurance as I'm working harder to do 'normal' activities and in the long run, weakens the heart. It also can cause swelling in the feet and skin discoloration but I haven't noticed those side-effects yet. But basically, it is bad to be oxygen deprived so I really do need to start hauling my oxygen around everywhere.
But I really don't want toooooo. *whinny voice* I hate feeling like a sick person and hauling oxygen around with me everywhere is going to make me feel and be treated like a sick person. I know rationally I am sick but it makes me feel better when I don't have reminders of it on my face. Come on big pharma, get off your butts and make me an oxygen pill (non-suppository please).
Before the oxygen man left, after finding out that I was right about not having to pay from pocket, he told me that the way most transplant people with CF end up having their transplant because they have flare-up which boosts them too the top of the transplant list. I said, 'yes but that means you aren't as healthy for the recovery process so I will try not to go that option'. He responded that getting sick is the best way to get the transplant so if I have a cough, be sure to tell the hospital that I am sick so I can be jumped to the top of the list.
Thanks oxygen man for those words of encouragement!