Hello: your last sentence is great with your positive attitude! You may really enjoy looking up Mayo Clinic Dr Amit Sood "Brain" fun talk ! I highly recommend his newest book "Happiness". I am sure it is his life lessons that have helped me direct my positive attitude & daily gratitude as a 9 year lung cancer survivor.
I am a never smoker who was shockingly diagnosed with lung cancer by Mayo doctors. The advances in pulmonary care are light years beyond what they were onlym9 years ago.
Keep connected and keep up your great attitude, that's a huge part of the fight to have a great quality of life. I know, because I have had some of the challenges you shared. Keep Moving & know you are not alone!
Lw

hi steve_1948,
i have been on Esbriet too, since Mar 2014, the results have been very good. My case is different: i rarely cough! only slight mucous but exercise takes a toll on breathing, i uses twice the liers of O2 constant flow 24/7. i use Famotidine 10 mg taba. for acid reflux.as the Omneprazole caused me problem.i use no inhaler or nebulizer.i take Zyrtecfor allergies.i sleep a lot w afternoon naps.i am a never smoker! i have not heard of the sevier coghing you experience? keep the faith we will all go on with limitations!

I am recently diagnosed with IPF and shortness of breath was my only symptom until last fall. The cough and shortness of breath got steadily worse,the pft's revealed restrictive lung, ILD. The oxygen is a recent tool and it certainly helps greatly.
Esbreit is going to be used as soon as we get help with payment.I want to stay in touch with this group especially people that have been using this medicine. Thank you for listening. I will watch for your posts.

Hi Oliver, I am surprised you don't use a nebulizer (for me it's a blessing on helping me breath when it becomes a challenge throughout the day), however with this condition I suppose the doctors know best--. Two of my three docs encourage rehab as I shared earlier, but they seems afraid or cautious about letting me up my routine because of my coughing. I appreciated their concern but I needed a bigger challenge so I go to the fitness club for my routines. I can't overdue it since my lungs tell me when to rest and stop. Thanks for your post.

Hi Oliver, Yeah the doctors are puzzled with my coughing too as well as I am. We keep trying different things to see if we can identify why I cough so much. When I take my pft they tell me I have the lungs of a 90 year old. 90 YEAR OLD? I'm only 68---and a half lol. During the test I cough so much I border line passing out because of my inability to catch my breath (lack of oxygen and all that stuff), it's a wicked test for me to take. My 6 minute walk now requires me to do it with O2 at two liters. My nebulizer is a God send in aiding me to breath at my difficult time. Yes, it definitely limits us on our activities, but I make it. It's becoming a challenge between me and it, that's why I've gone back to weight lifting (with my O2 on-upped it to 3 liters for recovery). It was tough starting all over again but the feel of the pump is worth it to me. Thanks for the post.

Hi Tula, I'm so sorry to hear of your diagnosis. Gentech (the maker of Esbriet) I think has programs on helping with offsetting the costs. My first two bottles of Esbriet were complimentary and during the period of taking it they called me to inquire if I were in a position to afford the medication. It is very expensive I know, and I am fortunate enough to have been retired from the military and am on medicare, that my cost is where I can afford it. Hopefully you and Gentech can work it out. Now, does it work? The FDA has approved it for use here in America, so they must think it does. I get several pfts (pulmonary function tests) a year and my condition gradually worsens as time marches on. I don't have a clue as to how fast the progression is with or without Esbriet but it's no a cure all, and I am aware of that. It's the only thing on the market right now (in America) that they are using to my knowledge. I do know this, it is really rough on my digestive tract. It's suggested to be taken after a meal, but for me (even after over a year) it's still trial and error as much as a fluke on how it reacts to my upper stomach. I can tell within 3 minutes after taking it if I'm going to get (what I call heart burn) indigestion. So I keep antacids around all the time and it takes more than one to work (I don't use brand names, just a simple one from the Mart [if you know who I'm talking about]).
The ONE thing I have found that works for me is a shake that I make. Either a half or whole banana, milk (I use whole milk) and I take a protein powder (for my workout regimen). Never fails, no adverse reaction, glad I stumbled on that. I have met a gentleman (at a Gentech seminar) that takes it with water whenever without having to eat and he gets no side effects. Lucky him but we're all different. Hope this helps a little on explaining the Esbriet thing that I've experienced.

Good for you! Keep up the great work you are an inspiration!HugsLw

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)

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?

I have used esbreit for about a year. I think it has helped.the progression seemed to have slowed. The company has a web site with information about financial help.