Pulmonary Fibrosis*

Not yet,thang goodnes. My last exam the tech told me my levels have gone down.

Hi @sophiasmom,
Let me be the first to welcome you to the pulmonary fibrosis group. I read in another message that you were diagnosed about 2 years ago. Can you tell us a bit more about yourself? What symptoms along with coughing do you find the most challenging? Are you on oxygen?

Hi Coĺeen, i have trouble with walking any distance,have trouble losing my breath. The tiredness really gets to me. I am not on oxygen yet. My levels drop into the high eighties when i make my bed or run a vaccum etc. If i rest they come right back up to 95 or 96. I' m 65 yrs old and live in Florida. I will be flying next week to N.H. and I'm a little nervous about oxygen level. I haven't flown since i was diagnosed.

Airplanes are pressurized to around 8000 ft. not sea level. Be sure your doctor knows you are flying. The air lines are really strict with people flying with oxygen equipment.

My pulmonary dr. prescribed a Z-Pak which worked great for the severe sinus infection I had.
Are you on oxygen at all? Your primary dr can prescribe med for you too. Hope you feel better soon -

Hi Tula:
I was also prescribed lots of ZPac
I eventually discovered it simply was not working!
I did research and read where zPac perhaps is not for everything.
A pulmonary appointment is what I answered my questions about my symptoms. Have you seen a Pulmonologist?
I'm so happy you found Connect!
Lindsy- mentor

I found ZPak did work that time but a Prednisone regimen in May of this year helped immensely and I am on a maintenance dose of 10 msg daily. My chest still gets tight & I have a croup like cough right now. Nothing has changed as far as meds get recently.

Actually, I have two pulmonologists on my team and I have a referral to go to Ann Arbor U o M to get an opinion from a larger group of experts. Info is about I have now because, as you know treatment for IPF is scarce, Esbriet side effect r too much for me & age precludes any transplant option. I'm thankful for this site and all the good people who r generous w/ Info.

Where are the rest of the comments? I posted a reply to steve some time in the last week,(July 2017) but it has disappeared!

Yes! I have IPF, was diagnosed about 5 years ago by my pulmonary doctor as COPD but a second opinion by Cleveland Clinic dIagnosed it as IPF. At present, I've been taking enzymes as prescribed by Pivital Health in Arizona. The pill regime has reduced the coughing and mucus considerably. Still have shortness of breath after little exertion. Doesn't cure but helps until something better is developed!