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.
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)
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.
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.
My name is Larry - I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?
I was diagnosed with IPF in may 2016 I cannot hardly do anything I walk my dogs a half block on 4 liters o2 and I still have to walk slow and need to stop to do deep breathing I don't understand when I read people exercise am I doing something wrong ?
hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.
Hi. About one month today, simply by examining the chest x-ray, my doctor told me that I had interstitial pulmonary fibrosis.I wonder if stem cells will soon work miracles. I have been searching the net for whatever new research has been done in this area and would certainly like to know more about this.
hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.
Google everything on interstitial lung diseases and whatever you were diagnosed with I only read the medical sites it is surreal and I've read everything there is but unfortunately the progress of the disease is a guessing game so it's a wait and see which I have been having a hard time with I just started psychotherapy and it is helping prayers for you
Hello out there! A week ago I had a chest X-ray by my new doctor because I had a positive TB skin test. No TB but they found a scar on my lungs - IPF - idiopathic pulmonary fibrosis. Of course I googled all the information I could to find out more about this disease and what I've learned is devastating and unbelievable. No cure, no medication, 3 to 5 years after diagnosis? This had turned my world upside down and I'm looking for support from those who also have this disease. I have had several bouts of bronchitis and pneumonia in the past 2 or 3 years, don't smoke nor live with people who smoke, live in Honolulu, Hawaii. I am a 66 yr old new grandmother and desperate to live longer to enjoy my new role as Nana.
I just started psychotherapy and it's already helped very much in dealing with a fatal disease I'm at the moderate stage and I had to change my whole life very tough on the mind
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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)
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?
research site -has a lot of info egardng IFP
http://pulmonaryfibrosismd.comI was diagnosed with IPF in may 2016 I cannot hardly do anything I walk my dogs a half block on 4 liters o2 and I still have to walk slow and need to stop to do deep breathing I don't understand when I read people exercise am I doing something wrong ?
Have you been diagnosed with mild moderate or severe IPF?
I google everything there is a lot of information on the internet
moderate
Google everything on interstitial lung diseases and whatever you were diagnosed with I only read the medical sites it is surreal and I've read everything there is but unfortunately the progress of the disease is a guessing game so it's a wait and see which I have been having a hard time with I just started psychotherapy and it is helping prayers for you
I just started psychotherapy and it's already helped very much in dealing with a fatal disease I'm at the moderate stage and I had to change my whole life very tough on the mind
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1 ReactionHi Ray,
Tnx 4 that link. Nice to have a group that is only about IPF. Well written, too.