[Kristie]

I saw my pulmonologist yesterday and told him about the  O2 saturation of 47 and how my heart rate went down to @ 50 when that happened.  He said it something he sees all the time, in the hospital, just before someone has a cardiac arrest.  He said STOP doing that.  It can make you DIE.  If your oxygen drops down in the low 80s and stays there very long you are doing organ damage. There are some people who can adjust to lower oxygen levels, however, As a general rule, if it goes lower than that and your heart begins to slow, you are in danger of having a cardiac arrest.
So, your pulse O2 isn’t necessarily wrong.  Don’t risk it.  Stop before you drop low.  I need to stop before I’m even feeling out of breath.  This disease sucks so much.

take care of yourselves out there.  Exercise can be deadly if we aren’t careful.

Kristie

[Kristie]

I have Pulmonary Fibrosis but it is of known cause. (Avian proteins and mold). I was diagnosed 12 years ago and have been on supplemental O2 for 2 1/2 years.   When doing walk tests I am always made to sit down when my o2 levels drop into the 80s.  At that point I’m not even breathing hard and don’t feel O2 deprived at all. I have always wondered what it goes down to when I AM breathing hard and feel that I’ve got to stop. When I’m breathing hard I’ve never noticed my heart pounding hard at all but I have to stop because I get dizzy and feel faint.  My O2 is 98-100 if I’m sitting perfectly still, but any amount of movement, even talking, causes my levels to plummet. I normally use 4L of supplemental O2. I recently got a pulse O2 sensor and decided I would check to see what the level goes to when I work hard.  So I did some stuff while wearing my backpack with 4L and when I was breathing hard and had to stop I put on the oximeter and it was 47 my heart rate was 50.  As I sat, over the next 40-60 seconds the O2 climbed back up to 99. During the climb up, when it hit @70, my heart rate sped up to 139 and slowly returned to normal.

I learned that your heart has to have enough O2 to actually beat hard and my idea of working hard is actually doing too much. So, you are not alone in having normal O2 levels at rest and really bad levels when you do things.

[Kristie]

I fixed the face rubbing problem, I bought a completely different cannula.   It is made by a company called Oxy-tech.  It is a one sided nasal cannula they call an oxy-breather .  It uses a Bluetooth looking earpiece thing  to fit your tubing into and lightly pinches your septum. It is one sided.  There is a clip to keep the weight of the hose from pulling it off.  I’ll include a link to their sight so you can check it out.   https://oxy-tech.com/testimonials/

I put up the testimonials page because they have a photo  I’m not sure I’ve adequately described it.

Ive been on oxygen 24/7 for 18 months now.  I was diagnosed with PF in 2009.  Had been doing great until an exacerbation in February 2017 left me needing supplemental oxygen.  I resisted using it at first, I was only 48 years old.  I finally gave in, but I hated wearing it in public.  I still did it, but it was depressing.  The “face straight jacket” is the worst.  I felt conspicuous and ugly.  I’m much too vain to allow that to go on, so I searched and found this. I’ve been using them ever since.  They are definitely worth the expense.   The only problem I’ve ever had with them is a tendency for the nosepiece to slip a little when I’m sweaty or have a runny nose ( yuck).

This sounds like a commercial I’m sure, but I can’t say enough.  The earpiece is no different than wearing glasses.  I don’t even feel it and I’ve worn sunglasses overtop with no problems.  Best of all, it doesn’t even touch my cheek.   It gave me back my face.

Ive got no magic for cold weather though.  I also suffer from Raynauds, so I avoid cold.  My tubes don’t get cold because I keep them and myself warm.

Kristie