Basically about two years ago I was around say 20-23% and was not on oxygen and was managing fine day to day with sats in mid 90s when resting etc
Last year though I was put on 3-4l o2 which I still am on now
My current lung function was 17/18% and my oxygen sats are around 88-95 when idle
Now heres the strange part. A few months ago I was all the same stats as I am now above BUT if I took off the oxygen and stayed sitting or not moving much my sats would stay in the 80s and id feel brilliant.
The problem is now that they drop crazy fast when moving whilst on o2, like walking upstairs etc it will go to like high 70s and if you lets say do it twice without stopping it can go to 69 etc AND they drop rapidly even at resting if I take my o2 off which it didnt before
As soon as I sit down after movement they come up fairly quickly but sometimes I use a little cylinder on higher litres for a quick blast to recover quicker and then im fine again. I obviously need more o2 when moving but will have to sort that out next appointment
I just dont see how I could have been only a little better back then lung function wise but the situation is so different. I wonder if I'll ever be the same again or even at a stage where I can take off the o2 for moving around slightly and just sitting like before.
At the same time I have never been ill for years and last ivs were over a year ago, and mentally im so psyched to fight this but I lack energy and its so hard that ive become a couch potato because I dont want my sats dropping obviously so its a vicious circle.
Now more strange stuff:
I think I have an underlying infection but my sputum isn't picking up anything in samples but now its always green and I clear crazy amounts on a daily basis for months now and literally its like the amount when you vomit but all sputum and always dark green and some light green
The months before where I could take the o2 off, I was doing loads of exercise and I felt so good and want to get back into it so badly but cant. Im scared ill set my infection off or over do it and cause greater problems.
The reason for this is as before when I started doing exercise I got a little fever a day after and it lasted a good two weeks. it raised my heart and lowered my sats so I had to up the oxygen to get the same sats as I would normally get.
THEN one night I was trying to stay up to drink water and I fell asleep but woke up only half an hour later absolutely soaked in sweat BUT my heart rate had dropped backed to normal and my sats had risen loads back to how they were and I could turn the oxygen down etc it was literally like some demon had just left and everything was back to normal.
Being wary of this I didnt do any exercise but a few weeks after I went out and had a fairly busy day with lots of moving as opposed to sitting around and the exact same fever came back and the same things happened EXACTLY the same to a tee.
Once again after around two weeks the same crazy night sweat happened and every returned to normal so I thought it happened with exertion and was dead scared.
I was stupid though and a few hours after I went out for a few hours and what do you know it came back a day later.
This time though I didn't get a magical sweat and it didn't vanish but instead of going back to being totally fine like before, it only half went, so my sats didn't return to quite how good they were and my heart rate didn't drop back to how good it used to be.
Since then I've been dead scared every time I shower let alone doing exercise and mentally I need to get back fighting this how I was and was improving so much in all departmens but now im stuck
Sorry for the long post, any ideas?
Last year though I was put on 3-4l o2 which I still am on now
My current lung function was 17/18% and my oxygen sats are around 88-95 when idle
Now heres the strange part. A few months ago I was all the same stats as I am now above BUT if I took off the oxygen and stayed sitting or not moving much my sats would stay in the 80s and id feel brilliant.
The problem is now that they drop crazy fast when moving whilst on o2, like walking upstairs etc it will go to like high 70s and if you lets say do it twice without stopping it can go to 69 etc AND they drop rapidly even at resting if I take my o2 off which it didnt before
As soon as I sit down after movement they come up fairly quickly but sometimes I use a little cylinder on higher litres for a quick blast to recover quicker and then im fine again. I obviously need more o2 when moving but will have to sort that out next appointment
I just dont see how I could have been only a little better back then lung function wise but the situation is so different. I wonder if I'll ever be the same again or even at a stage where I can take off the o2 for moving around slightly and just sitting like before.
At the same time I have never been ill for years and last ivs were over a year ago, and mentally im so psyched to fight this but I lack energy and its so hard that ive become a couch potato because I dont want my sats dropping obviously so its a vicious circle.
Now more strange stuff:
I think I have an underlying infection but my sputum isn't picking up anything in samples but now its always green and I clear crazy amounts on a daily basis for months now and literally its like the amount when you vomit but all sputum and always dark green and some light green
The months before where I could take the o2 off, I was doing loads of exercise and I felt so good and want to get back into it so badly but cant. Im scared ill set my infection off or over do it and cause greater problems.
The reason for this is as before when I started doing exercise I got a little fever a day after and it lasted a good two weeks. it raised my heart and lowered my sats so I had to up the oxygen to get the same sats as I would normally get.
THEN one night I was trying to stay up to drink water and I fell asleep but woke up only half an hour later absolutely soaked in sweat BUT my heart rate had dropped backed to normal and my sats had risen loads back to how they were and I could turn the oxygen down etc it was literally like some demon had just left and everything was back to normal.
Being wary of this I didnt do any exercise but a few weeks after I went out and had a fairly busy day with lots of moving as opposed to sitting around and the exact same fever came back and the same things happened EXACTLY the same to a tee.
Once again after around two weeks the same crazy night sweat happened and every returned to normal so I thought it happened with exertion and was dead scared.
I was stupid though and a few hours after I went out for a few hours and what do you know it came back a day later.
This time though I didn't get a magical sweat and it didn't vanish but instead of going back to being totally fine like before, it only half went, so my sats didn't return to quite how good they were and my heart rate didn't drop back to how good it used to be.
Since then I've been dead scared every time I shower let alone doing exercise and mentally I need to get back fighting this how I was and was improving so much in all departmens but now im stuck
Sorry for the long post, any ideas?