[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.

[Anne Philiben]

Even before Covid19 I had a woman at the health clinic hand me a mask.  I thanked her and explained my cough was due to IPF and I wasn’t contagious.

Interesting thing though I keep getting questionnaires  re: Covid19.  I have all the symptoms except the fever but I’ve had them for years.  I’m not filling any more out unless there is a place to explain first.

[Anne Philiben]

My pulmonary doctors have all said that I have unusual case.  Frankly I think I’m going to die from tripping over my oxygen tubing.   Shortly after I developed PH and before I learned to change my activity, I really thought the end was coming soon.  Now with increased 02 and decreased activity I am less stressed.   I guess either OFEV or Esbriet stopped my fibrosis from increasing.   I really wish we had better prognosticators.

[Anne Philiben]

My DLCO is at 32% down from 54% two years ago.  I think it is from PH.  There is less diffusion space in blood vessels.  I’ve also noticed a significant increase in 02 consumption.  since diagnosed with PH.  I would agree with GERD being a cause of IPF.  While DLCO and other factors have changed the amount of fibrosis seen on CT scan is not significant.

[Anne Philiben]

I’ve found that sleeping with the humidifier running cuts down on the mucus formation.  My mornings are much better since I started using it.  Also Pineapple juice as Karen Martin suggested.   I continue to rely on robitussin and dextromothorpan…which are the drugs in Mucinex.

[Anne Philiben]

I have found that sometime pineapple juice has been helpful.  Also Robitussin and codiene most effective at relieving dry cough.

[Anne Philiben]

Up till a year or so ago I didn’t have PAH…was diagnosed with IPF in 2013…and my FNP used to say she was glad I didn’t have PAH.  Well now I do and I still don’t understand the ramifications.  I’m a retired RN and should know better but sadly I don’t.

[Anne Philiben]

I am no longer on OFEV but did notice my hair thinning.  Didn’t know what was causing it. It doesn’t seem to be a problem now that I’m no longer on OFEV.

[Anne Philiben]

I have a real problem getting out of bed in the AM.  Fortunately I don’t have to be anywhere.   I sleep a lot and can fall asleep easily.

 

[Anne Philiben]

I have problem with dry heaves.  Have had to discontinue both Esbriet (GERD) and OFEV (diarrhea) and now rely on Mucinex for cough.  Dry heaves after some meds are a real problem.

[Anne Philiben]

Quite a bit over 50, I was diagnosed in 2013 and live in Bend. So a bit far from Newport.  I’m a perfinidone and OFEV failure.   The side effects Did me in.

[Anne Philiben]

I had to quit.  After months of not going out, staying home worried about diarrhea I went to family thanksgiving.  It was ruined.  I just can’t take it anymore.  I’m tired of the restrictions, the schedule, the diet changes.  It isn’t worth it to me.

[Anne Philiben]

How does Lung volume reduction eliminate the cough from IPF?  What is the physiology/anatomy that causes the cough?

[Anne Philiben]

I was told that my IPF and Agent orange exposure were not connected.   Should I fight?  I’ve already got 80% disability.  Interesting one of my friends also a Vietnam Vet had non-hodgkins and has now developed IPF. A discussion with friends two related  they knew people who had non-hodgkins and also developed IPF.  Could it be the chemo?

[Anne Philiben]

Before I was diagnosed with IPF I started to become ill every time I flew.  It went from URI’s to Pneumonia.  Flying just became a horror.  I spent my 3 days in Sydney AU in the hotel room.   I was going to take one last attempt at flying,  first class with a face mask.  Unfortunately I got in the wrong line and they wouldn’t allow me to board.   So I haven’t attempted since.  I now have a concentrator they say is FAA approved .but it is so big I would have to fly first class.  Also the Bend/Redmond airport doesn’t have a loading platform…I’d have to carry that 20 pound concentrator up a flight of stairs.   Wish I had some good tips.

[Anne Philiben]

We used to have a “Better Breathers” but the meetings were at an inconvenient time for me.  Now I hear they’ve cancelled it for lack of participation.