I went in the hospital for what I thought was a heart attack it turned out to be a false alarm although when my dr came in to discuss the cat scan told me I had IFP kinda through me for a loop I have a consultation set up for later this week and a second appointment set up in 5 weeks which I believe will be for another c scan or image to see the progression he did mention that it is very early because I have no symptoms. I have acid reflex for the past 10 years or so.
Recently diagnosed with IPF too have not smoked since 1975 then light smoker but around smokers thur years. Wondering how fast this disease progresses do not have appmt. with pulmonologist until end of March hope he can give me more info
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?
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?
you can investigate sites like this but the bottom line is that there is currently no cure for iPF. There is a lot of drug trials going on that look promising. there is a weekly IPF newsletter that list current and proposed drug trials. The government has a listing of all current and proposed studies and drug trials. do a search for government drug trials to get the url. this site won't all me to post it.
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 am taking the drug for over a year now. there is no way to tell if it is doing anything. it is very expensive and i have to take 9 caps a day. the only thing i can say is that it sees to have slowed down the progression. I was dx in 2008 and am still alive. the main things i have found useful is exercise, treadmill 15 or 20 minutes a day. I have recently stated on 02 which helps quite a bit when excepting.
I was diagnosed with IPF 16 years ago. Since then I have only been taking acid reflux pills (2) per day. I work out in a gym 3 times/week and don't seem to lose my breath. When walking, I do. My doctor advises that I should take Esbriet but I am reluctant. My heart is strong and I sleep 7-8 hrs./night. I am at an impass as to what to do. I am 76. My symptoms increased slightly in 2013
I use an over the counter drug to control the acid reflux. prescription drugs have a lot of side effects which i dont think it is worth the risk to take when the over the counter drugs work fine.
My husband has IPF. he is on perfidenone 3 three times daily (9 in total). Next week he has appointment to discuss using Nintedanib instead. Would appreciate comments as to advantages (if there are any). Have read that Nintedanib blocks the effects of important proteins that tell the lung to make scar tissue.
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?
Hi @rayhastings, welcome to Connect.
As a security feature, first-time posters are not allowed to post URLs. This helps us minimize spam. You will be able to post the link to the newsletter in a couple of days. I encourage you to do so, as it will certainly interest the others here.
I went in the hospital for what I thought was a heart attack it turned out to be a false alarm although when my dr came in to discuss the cat scan told me I had IFP kinda through me for a loop I have a consultation set up for later this week and a second appointment set up in 5 weeks which I believe will be for another c scan or image to see the progression he did mention that it is very early because I have no symptoms. I have acid reflex for the past 10 years or so.
I was wondering if anyone in this group has asked their doctor about pulmonary rehabilitation? I was just reading about it on the Lung Association site http://bit.ly/2mo2Mmc
@agullotti, getting a new diagnosis like IPF can be a shock. Here's more information from Mayo Clinic http://mayocl.in/2jAEmAi I'm glad you found Connect to ask questions of people who are living well with IPF. What's your biggest concern?
I mainly walk but that is getting more and more difficult. I am having a bad time now not able to breath even with o2 especially at night. I am having to use O2 more during the day also. These "attacks" seem to be weathered related as it is cold and raining now. Does anyone else have trouble when it rains?
I went in the hospital for what I thought was a heart attack it turned out to be a false alarm although when my dr came in to discuss the cat scan told me I had IFP kinda through me for a loop I have a consultation set up for later this week and a second appointment set up in 5 weeks which I believe will be for another c scan or image to see the progression he did mention that it is very early because I have no symptoms. I have acid reflex for the past 10 years or so.
Hi Colleen,
FYI the doctor has to prescribe the rehab for insurance coverage. In addition if you're on medicare you only get so many weeks of rehab covered. I have had pulmonary rehab on two separate occasions in a two year period. It consisted of watching several videos of pulmonary (issues) on breathing properly to get the best use of my lungs. I did some light weight training, walking and biking (at a snails pace) to start with so they could measure where I'm at in my lung capacity. From there we progressed in intensity to get me to my optimum breathing without O2 (in my particular case). Several people did similar rehab routines but with O2. Upon completion of my routine they would use a percussion tool to vibrate my back and loosen the sputum. I found this to be quite helpful. The reason I had stopped the first time is that I fractured a rib coughing and it was to painful to do almost anything since I coughed so much. It took months for it to heal where I could go back to rehab. On the second time around they used the hand cupping method on my back to loosen the sputum, which (I think) wasn't quite as effective as the percussion tool. They were somewhat apprehensive about me pushing myself to the limits to where I'd get winded and start coughing. I understand that and that was why I discontinued my rehab for the gym. I saw a few patients who started rehab on my first time around and they could barely walk even with the assistance of a walker. When I went back the second time I was astounded at how much better the patients were and the progression they made. Where I live there aren't many pulmonary rehab places around and the closest location was a hospital with a waiting period to even get on the list for rehab, once on the list there was a waiting period before actually being called for treatment. Talking with former patients of that hospital rehab, they told me it was a group instead of individual rehab and it consisted mainly of stretching and a little bit of useless exercises. I happened to find a private one near me that just opened for business, visited it and called my rehab connection at my pulmonary clinic to get the business approved for treatment and referral. Lucky me huh? I have since continued on by pushing myself to go back to the fitness club for working out, as the rehab posed not enough challenge for me. Bottom line, I recommend doing some rehab whether it be clinical or on your own (just be aware of your limits). I use my portable oxygen tank to help me recover between sets on my weight lifting and have made acquaintances just out of the curiosity of me working out with the aid of oxygen, and my recurring cough when winded. They are truly concerned for my well being, yet supportive of my regimen after finding out my condition. Hope that helps in explaining my experience with pulmonary rehab.
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Recently diagnosed with IPF too have not smoked since 1975 then light smoker but around smokers thur years. Wondering how fast this disease progresses do not have appmt. with pulmonologist until end of March hope he can give me more info
you might try the mayo clinic transplant department. in general transplants candidates have strictt criteria.
you can investigate sites like this but the bottom line is that there is currently no cure for iPF. There is a lot of drug trials going on that look promising. there is a weekly IPF newsletter that list current and proposed drug trials. The government has a listing of all current and proposed studies and drug trials. do a search for government drug trials to get the url. this site won't all me to post it.
I am taking the drug for over a year now. there is no way to tell if it is doing anything. it is very expensive and i have to take 9 caps a day. the only thing i can say is that it sees to have slowed down the progression. I was dx in 2008 and am still alive. the main things i have found useful is exercise, treadmill 15 or 20 minutes a day. I have recently stated on 02 which helps quite a bit when excepting.
I use an over the counter drug to control the acid reflux. prescription drugs have a lot of side effects which i dont think it is worth the risk to take when the over the counter drugs work fine.
I have seen the same reports and have not seen anything that show any measurable improvement based on user comments.
Hi @rayhastings, welcome to Connect.
As a security feature, first-time posters are not allowed to post URLs. This helps us minimize spam. You will be able to post the link to the newsletter in a couple of days. I encourage you to do so, as it will certainly interest the others here.
Do you have IPF? Have you had a transplant?
Welcome Donna (@kelloggk).
How IPF progresses and how fast it progresses is different for every person. You can read more about what to expect as it progresses from this article https://www.lungsandyou.com/facts/ipf-progression
I was wondering if anyone in this group has asked their doctor about pulmonary rehabilitation? I was just reading about it on the Lung Association site http://bit.ly/2mo2Mmc
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1 ReactionI mainly walk but that is getting more and more difficult. I am having a bad time now not able to breath even with o2 especially at night. I am having to use O2 more during the day also. These "attacks" seem to be weathered related as it is cold and raining now. Does anyone else have trouble when it rains?
Hi Colleen,
FYI the doctor has to prescribe the rehab for insurance coverage. In addition if you're on medicare you only get so many weeks of rehab covered. I have had pulmonary rehab on two separate occasions in a two year period. It consisted of watching several videos of pulmonary (issues) on breathing properly to get the best use of my lungs. I did some light weight training, walking and biking (at a snails pace) to start with so they could measure where I'm at in my lung capacity. From there we progressed in intensity to get me to my optimum breathing without O2 (in my particular case). Several people did similar rehab routines but with O2. Upon completion of my routine they would use a percussion tool to vibrate my back and loosen the sputum. I found this to be quite helpful. The reason I had stopped the first time is that I fractured a rib coughing and it was to painful to do almost anything since I coughed so much. It took months for it to heal where I could go back to rehab. On the second time around they used the hand cupping method on my back to loosen the sputum, which (I think) wasn't quite as effective as the percussion tool. They were somewhat apprehensive about me pushing myself to the limits to where I'd get winded and start coughing. I understand that and that was why I discontinued my rehab for the gym. I saw a few patients who started rehab on my first time around and they could barely walk even with the assistance of a walker. When I went back the second time I was astounded at how much better the patients were and the progression they made. Where I live there aren't many pulmonary rehab places around and the closest location was a hospital with a waiting period to even get on the list for rehab, once on the list there was a waiting period before actually being called for treatment. Talking with former patients of that hospital rehab, they told me it was a group instead of individual rehab and it consisted mainly of stretching and a little bit of useless exercises. I happened to find a private one near me that just opened for business, visited it and called my rehab connection at my pulmonary clinic to get the business approved for treatment and referral. Lucky me huh? I have since continued on by pushing myself to go back to the fitness club for working out, as the rehab posed not enough challenge for me. Bottom line, I recommend doing some rehab whether it be clinical or on your own (just be aware of your limits). I use my portable oxygen tank to help me recover between sets on my weight lifting and have made acquaintances just out of the curiosity of me working out with the aid of oxygen, and my recurring cough when winded. They are truly concerned for my well being, yet supportive of my regimen after finding out my condition. Hope that helps in explaining my experience with pulmonary rehab.
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