Pulmonary Fibrosis*

Posted by tetreaulta5 @tetreaulta5, Feb 25, 2012

Is there any one out there that has PF?

Interested in more discussions like this? Go to the Lung Health Support Group.

nomi | @nomi | Mar 25, 2017

In reply to @steve1948 "Hi, new here. I was diagnosed with COPD and IPF (by biopsy at the Cleveland clinic..." + (show)

@steve1948

Hi,
new here. I was diagnosed with COPD and IPF (by biopsy at the Cleveland clinic in 2014), and have been using Esbriet (9 caps per day) since then. I now keep an oxygen tank with me (2 liters) and my nebulizer or inhaler with me at all times. I cough insistently and quite often violently. We've tried omeprazole for acid reflux and sodium chloride (with my albuterol in the nebulizer) all to no avail. I often get headaches from coughing so much and we ( my doctors [ I have 3 pulmonologists, one in my state, Cleveland clinic, and VA]) can't figure out just why I cough sooo much.
I still do weight training (sometimes with my oxygen on) until muscle failure (I have longer rest periods between sets that's all) but am unable to do any cardio. When I get winded I start my coughing fits. I also use a brand name menthol lozenger to help sooth my throat and somewhat control my cough.
I have sleep apnea and use a Cpap machine with 2 liters of oxygen infused during my sleep time. Yet I'm not bad enough for lung transplant consideration.
Climbing stairs is a chore and I get being out of breath a lot, but the coughing is the worse(I've fractured my ribs 5 times in two years because of it (I've learned to keep my mouth wide open when I cough to lessen the pressure on my torso, and it helps, although unsightly). My worse times (outside of my weight training) is first thing in the morning ( I am of the opinion that the mucus builds up while lying flat) and just before I go to bed for some reason (haven't a clue why that is). I'd be lost without my nebulizer, as it is the best relief I get from my coughing. In addition I have a percussion vest I use twice a day to help break up all that sputum, although when I was in rehab, they used a vibrating tool which help much more.
I've snow birded this winter and just a city away from a lung institute and with a phone conversation they say I qualify for a stem cell treatment. They do it in two different way, stem cells from your blood, or from your bone marrow. As stated by someone else, it"s not insurance covered and quite expensive. My doc in Cleveland is skeptical about it, as well as I am (if it's to good to be true........). So with all this said, I do my best to try and control it as my as it control me.

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Hey, Steve48,
I am a newbie to you guyz thread, and the malady. Its terrific to read about your never ending positive attitude, Steve! I was diagnosed with interstatial pulmonary fibrosis after a CT scan in Oct '16 for a hernia; the scan also revealed fibrosis. I didn't know about it until I read mychart on the web about interstatial PF on Dec 26,'16. I did as much internet searching as possible about this shocker. Saw our family doc in early Jan '17. He and I looked at the CT, and I saw those 'lines', should I say, at the bottom of my lungs. My research gave me one possible cause: I told doc that for the past maybe 5 years or so I have told friends "I know now how I will die; I will choke to death." For 5 years I now realize I have been inhaling when shoveling food into my mouth. Once in a while, some must be going down my 'wind pipe', and into my lungs, and then I cough very hard for maybe 3', often leaving the table. Why I inhaled while feeding I have no idea. I now try very hard not to do this, and haven't choked for 3 months. Since none of us know each other, I will also admit I used to, for maybe the last 15 years, try and keep my weight down by occasionally barfing up meals where I ate way too much, which also occasionally made me choke for a couple minutes. False pride and basic male idiocy overcoming discipline. I no longer accomplish this feat, either. Another aspiration story: I have suffered reflux for more than 10 years. Occasionally I am waked up at 2am by a half teaspoon of hydrocloric acid rising into my mouth, for example. I was never careful about my diet, and used a prescription, tablets and baking soda to hold the reflux down. I am now trying to eat less food at one sitting especially at supper, and less acid causing foods. And I love chocolate, tomato sauce, and all the other Bad-for Me foods. Hoping against hope, some research says aspiration (food getting into the lungs) may be causing some Interstatial PB, and until I am convinced my condition is ideopathic (unknown cause) fibrosis, I'm sticking with my story. 😉 So far, I think I am symptom free. I speeded up the pace of my 3 miles/day walks with no wind problems, plus no cough. But, do any of you have very slight nausea in the mornings, like I do, that goes away after coffee? Not a symptom listed for our malady.

I am glad I am now in this group. I felt better after reading the whole thread. I also feel better that the "wondrous, much better health care bill" failed to even get a vote yesterday. Plus, now they don't know where the money for the huge tax cuts for the top 1% is going to come from, which the huge 'great health bill' money cuts was supposed to provide. (Sorry, I couldn't help it, folks)

Colleen Young, Connect Director | @colleenyoung | Mar 25, 2017

In reply to @steve1948 "Hi, new here. I was diagnosed with COPD and IPF (by biopsy at the Cleveland clinic..." + (show)

@steve1948

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Welcome @nomi. Thanks for introducing yourself to the group and sharing your story. Good for you for keeping up the walking and even speeding up the pace.

@steve1948 @llwortman @kelloggk and @agullotti will you join me in welcoming Nomi?

rayhastings | @rayhastings | Mar 30, 2017

research site -has a lot of info egardng IFP
http://pulmonaryfibrosismd.com