• Brian Thomson posted an update 3 years ago

    Having problems with waking up every day with no energy,not really sure what is going on inside my body but I do not like it.I was inToronto yesterday with family and I took 2 mobile oxygen tanks plus my large tank inside my truck.I find that I tire very quickly and seems that I always run short of oxygen.I talked to my home care nurse today and she says that I may have to slow down a bit and plan better.Its hard for me since I am not able to do the things I used to do I have a breathing test plus x ray next Friday and should see my Dr.following this.I really need to know where I stand after 15 months of being diagnosed with I.P.F.Silly me I thought that oxygen would take care of my breathing problems.The good news is that the O.F.E.V.at the lower dose is working and I am doing better with the eating.I have much to learn about my new life.Thanks for listening to me.

    • Hello Brian, thank you for reaching out. The breathing test next week should establish where your current lung function is. Doctors tend to use the pfts as their gauge of progression or stabilization. Before my transplant my friend built me a contraption that held 18 tanks. I have a Silverado, and the box he built was double insulated and also fit under my cover. I always made sure I had enough o2. For me accessing the oxygen was fairly easy as the location was nearby. I don’t know your situation but getting more than you need is a possibility and the tanks are not going to go bad like a loaf of bread. I glad your ofev is treating better and I hope the cause of your fatigue is overdoing it and not progression of your disease. Keep us updated. Best wishes. Mark

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