Need for oxygen

[Iamqueenofeverything]

I am almost in need of a double lung transplant. One thing that is needed for me to be consider is my dependence for oxygen and I only use oxygen when I am in the hospital. From what I understand is that I need to be on oxygen all the time before I can be on the transplant list. Sometimes i feel like i need when i do to much exercise or laying down to sleep or when the weather Is constantly changing wgich makes it hard to bresthe. My question is this. How did you know that you needed to be on constant oxygen? What were the signs?

 

[beautifulsoul]

For me personally from what I can remember (since I was only 13) I think they did an overnight 02 sat monitor test to see what my levels were when I was sleeping. That's when I first needed oxygen. Then eventually (not sure about the time frame) I became increasingly to extremely out of breath just when walking from one side of the room to the other or walking down/up the stairs in my home. That's when they decided 24/7 oxygen was needed. I might have done a walk test to verify the low 02 sat while walking. Some people also use a bi pap machine at night while sleeping before transplant.

 

[nocode]

I did a sleep study and they confirmed that I needed oxygen during sleep because my O2 saturation average for the night was 86%. I have been on night oxygen for less than a year and don't notice any difference in terms of my energy when awake, but still I understand why it's needed (mostly for the long term condition of the heart).

I need oxygen during exercise and this need is very clear to me. My O2 levels go down immediately after I start working out, so I notice a difference. I don't mind using it because I exercise 3x a week at a physiotherapy clinic, so it's a "safe" environment and I know how badly I need exercise.

My O2 saturation at rest is, at best, 95%, so I don't need oxygen while at rest. However, I am short of breath as soon as I go up stairs, walk fast (or even normal), carry things, etc etc....and my O2 comes down to the 80s. My doctor however is not asking me to use oxygen during my day to day activities though. The reason might be that even though I get very tired during activity, I have time to pace myself and I can always stop and rest, take it easy etc, because I am not working and not usually in a rush.

So to summarize, I believe that we should be on oxygen when our saturation is around 88% or below and it STAYS THERE, not coming back up to the 90s. This is just my experience.