Oxygen is something that some pulmonary hypertension patients may need. Some patients need it more than others, some may only need it at night, and some don't even need it at all. I am one of those who was told to use it at all hours of the day, despite the fact that my oxygen saturation levels (sats) never get to 90%. Normal oxygen sats are from 95-100%. For me, because I have Eisenmenger's, it's pretty much my norm to be hovering in the high 70 to mid-80% range when at rest. When I exercise or vacuum or something more physical, I dip into the low 60s, sometimes even into the high 50% range. Yes, that would be deadly for any normal person, but I am not normal!! lol
I found out this past May that there isn't any proof that oxygen really helps Eisenmenger patients. I can actually understand why that is, since no matter how much oxygen I'm on, I will never get my sats into the normal range, and that especially goes for when I'm physically active. I thought hearing this news might mean that perhaps I could eventually wean myself off of oxygen. I've been wearing it for the past 10 years, though, so I was a bit leery. Now, I have always been able to take the oxygen off for awhile (and by awhile, I mean several hours) before I felt the need to put it back on. I've done it so many times, and I've never had major problems. But to go without it for a day? Hmmm, I'm not so sure about that!
So, backtrack to Friday afternoon around 3pm. I had come home after being out for a bit, and the oxygen guy was still at my house because his van wouldn't start. After I brought in my bags, I went out to say hi to him, and chatted for a few before he took off (someone had come to give him a jump by then). I went back in the house and filled the water attachments on the two large liquid oxygen tanks since they were empty, put the tubing on, and went about the rest of my day. Yesterday morning, I had a little bit of chest pain, which is unusual for me, and I tried to figure out what the heck I did to make my chest hurt. A few times, I've lifted something too heavy or did something too strenuous so that I ended up with pain the next day or two. I tried a heating pad for awhile, which didn't seem to help too much. But then I drove out to K.'s house in the afternoon around 2:30, and got back home after 10:30. I felt fine the whole time I was with him, but on the drive home, I could feel the pain again. So after taking a bath, I went to put the tubing back on. Now whenever I leave the house, or even take the oxygen off at home for a little while, I never turn the two tanks off. I just leave them running. So when I went to put the tubing back on, I realized no oxygen was coming out of the nose parts. I knew I hadn't turn the tanks off before I left for K.'s house. And all of a sudden, it dawned on me that I had never turned the tanks on from Friday after the oxygen guy left!!! I wore a cannula as decoration for 24 hours, with no oxygen!!! WHAT THE HECK IS WRONG WITH ME????? No wonder I had chest pain!! DUH!!!! Soooooooo, I went over to the tanks and turned them on to a little bit of a higher number than I'm used to, and since I've had it on since last night, my chest pain is much better!!
So the answer to whether or not I can eventually wean myself off of oxygen? I would have to say that is a no. It stinks to know that, and I kind of figured that I wouldn't be able to, but now I know for sure! I think what I need to do is start writing myself big notes to turn the oxygen on here and at rehab, since in the last several months there have been way too many instances of me wearing tubing without any oxygen coming out of it!! lol