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.… Read more

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

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.

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.

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.

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… Read more

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… Read more

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.

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.

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

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.

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.

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.

 

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.

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.

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.

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

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?

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… Read more

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.