Anne Philiben

[Anne Philiben]

I’ve been puttering along thinking I just might live like this for years…slight increase in O2, decrease in activity.  Then Sunday night  (around 10PM) I went into my bathroom to get some pills, fell to the floor (Hypoxia?).  Got into bed and could not maintain my spo2 sats.  About 4AM in a panic I called for my brother to call an ambulance.  I really thought I was dying.   At the hospital I was given steroids, 15L forced heated O2.  My CT scan was a white sheet..ground glass opacities.  The Doc said I would not leave the hospital alive. But the steroids did their magic and I am home on 1.5 L. while at rest.  Need a bit more for walking.  The Doc (who is wonderful) reduced the prednisone to 60mgm a day today.   We will see how it goes. How Manny of these cliffs I will fall over we shall see.

On 2nd thought I don’t think I should have held off for all those hours.   Also probably explained to my brother that I haven’t found a rescue inhaler effective.  Boy the had a hard time with the 911 operator.

AND the care at the hospital was fabulous.

[Anne Philiben]

I also couldn’t tolerate the side effects.  Just stopped taking it cold.

[Anne Philiben]

Probably only result I had from the Fundoplication was I lost weight.  I believe my lung function diminished after general anesthesia. I’d try the omeprazole late at night first.

[Anne Philiben]

I’ve had two fundoplications and still have reflux.  I take long acting omeprazole at 11PM and that seems to work well. My fibrosis slowed after the first fundoplication.

[Anne Philiben]

I noticed that my hair started thinning while I was taking OFEV. It has been two years (almost to the week) that I stopped taking OFEV and the hair loss has stopped.  I was really sick and tired of the broken hairs being all over the place. Glad it quit.

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