Scheduling my life around oxygen…

Living On O2 for Life

It’s amazing how much work goes into having a fun life. But it’s still very worthwhile. I try very hard not to schedule anything, especially doctor appointments, on the day of my oxygen refills. The company who refills my “Liquid Oxygen” is Lincare and they are generally very good with working with my doctor appointment schedule. There are times where I must schedule a doctor appointment on my oxygen refill day. In those cases, I either arrange for the oxygen driver to come a day before my scheduled refill day or just come a little earlier or later than my doctor appointment. Either way, it means an awful long day for me.

Scheduling my life around my oxygen needs is a constant chore. I’m always calculating in my head about how much oxygen I have in my portable liquid oxygen tank versus how much time I can play before needing to refill my portable. If I choose to go to a movie or a hockey game where I’m sitting down in a controlled environment, I can usually turn my oxygen down a liter (4 liters/min). However, if I’m walking around or talking a lot, I’ll need 5 liters/min. So, for example, I’ll walk into a movie theater using 5LPM and then sit to watch the movie on 4LPM. How much time does that give me on my portable? Well, how long is the movie? I know it seems a lot but it all factors in. Will I make it back to my vehicle where my 75lb reservoir of liquid oxygen is so that I can refill my portable tank if I’m going somewhere else after the movie? If I’m alone, will I have the energy to even refill the portable myself? Or will that just end the day and I’ll have to breathe straight from the reservoir and go home to rest?

I’ve had some scary moments though. I’ve actually locked my keys in my vehicle. Not cool because my purse was in there too. I had to go back into the place where I was at and ask to use their phone to call a locksmith. They had to be at my vehicle fairly quickly. I tried to be very kind when I explained why I needed them there quickly. ‘I’m on oxygen, I have X amount of time before I run out. If you can please send someone quickly, I’d really appreciate it.’ Sort of thing. Talk about having a panicky moment there! Yike!

I have AAA now which gives me a sense of relief and confidence when I travel. I’ve had a blow out in the middle of what seemed like nowhere. I called AAA and gave them a guestimation of my location and they had a representative out to help me within 25 minutes. He was a VERY nice older man who changed my tire and followed me to a gas station where he double checked my spare to make sure I’d make it to my destination. The number one priority when traveling is to have a cellphone and then using that cellphone to always let someone know when you leave your home, when you stop for a restroom or food break, when you get back on the road and finally when you get to where you are going. I check in with my husband at all these times via text messages. I also check in with whomever I’m going to visit. Checking in with my family is critical in allowing me to travel.

Life on oxygen is a challenge… sure… but it is better than the alternative. Am I right? Or what?

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