PF as is cleared form your doctor's words is not clear, and as I know pulse oximeter , breathing tech, and physical assessment are very helpful in determining the stage and the capacity of the lungs and breathing norms, but is not the last determined solutions. As RRT from my experience I believe surgery would help, but first your doctors the one who will decide it for. I know that the post is posted early back to (2012), but it may help others who are in similar situation. Good luck!
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?
II am Paul and I am taking Perfinidone 9 capsules daily. It has slowed the progression. I have a problem breathing after any exertion. Nausea and fatigue are bad side effects.
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?
Fortunately no nausea. I have not found a way to combat the fatigue. It is with me all the time. I forgot to mention in my last post. You must avoid breathing anything but clean air. No breathing near smokers (hold your breath as you walk by them.), or in rooms where smokers have smoked, no perfumes, pre-shave or aftershave. Only paint with Zero Voc paints and any other type of painting, staining, etc done outside and downstream in the air flow, or if indoors, with an open window on either side of the work area and a fan to exhaust the hazardous air. Also,stand on the windward side of the gas pump when filling your car, etc.
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 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.
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 just received the results of my CT scan through my patient portal email. I haven’t seen my doctor yet who ordered the scan. I have had a terrible cough for years and take a lot of prescription meds for asthma. I had pulmonary embolisms in January 2015; and had a follow up scan in July 2015. At that time, my embolisms had been absorbed. There was no mention of scarring on the report from that scan. Of course, I am freaked out by what I have read on the medical web sites. My fibrosis was listed as “mild.” I was happy to find this group.
When I first saw and read my CT reports this June my first one also said my pulmonary fibrosis was minimal that was the 2014 report. But the VA never felt it was important to mention. Same thing for the other 2 CT scans. Never said a thing to me about the pulmonary fibrosis that had gotten worse over time.
Now I have a lot less time to think about a lung transplant. That is a big decision to make. Alan
I just received the results of my CT scan through my patient portal email. I haven’t seen my doctor yet who ordered the scan. I have had a terrible cough for years and take a lot of prescription meds for asthma. I had pulmonary embolisms in January 2015; and had a follow up scan in July 2015. At that time, my embolisms had been absorbed. There was no mention of scarring on the report from that scan. Of course, I am freaked out by what I have read on the medical web sites. My fibrosis was listed as “mild.” I was happy to find this group.
What a shock to get this diagnosis via a patient portal! I hope you will be seeing your doctor soon. There may be some treatment for you that may slow the progression or put you into remission. This group has been helpful to me as I Have not connected with anyone in my town with pulmonary fibrosis.
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PF as is cleared form your doctor's words is not clear, and as I know pulse oximeter , breathing tech, and physical assessment are very helpful in determining the stage and the capacity of the lungs and breathing norms, but is not the last determined solutions. As RRT from my experience I believe surgery would help, but first your doctors the one who will decide it for. I know that the post is posted early back to (2012), but it may help others who are in similar situation. Good luck!
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1 ReactionII am Paul and I am taking Perfinidone 9 capsules daily. It has slowed the progression. I have a problem breathing after any exertion. Nausea and fatigue are bad side effects.
Hi, @paulallen, and welcome to Mayo Clinic Connect. Thanks for sharing what's helping with your condition.
Have you found any ways to counter the medication's side effects of nausea and fatigue?
Fortunately no nausea. I have not found a way to combat the fatigue. It is with me all the time. I forgot to mention in my last post. You must avoid breathing anything but clean air. No breathing near smokers (hold your breath as you walk by them.), or in rooms where smokers have smoked, no perfumes, pre-shave or aftershave. Only paint with Zero Voc paints and any other type of painting, staining, etc done outside and downstream in the air flow, or if indoors, with an open window on either side of the work area and a fan to exhaust the hazardous air. Also,stand on the windward side of the gas pump when filling your car, etc.
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1 ReactionI have the fatigue but not the nausea. Fatigue seem to stay around.
Sorry I’ve gotten worse fibrosis in the last year and a half twice
I am only 9 months into IPF. Your post was very helpful and informative. Thanks !
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1 ReactionI just received the results of my CT scan through my patient portal email. I haven’t seen my doctor yet who ordered the scan. I have had a terrible cough for years and take a lot of prescription meds for asthma. I had pulmonary embolisms in January 2015; and had a follow up scan in July 2015. At that time, my embolisms had been absorbed. There was no mention of scarring on the report from that scan. Of course, I am freaked out by what I have read on the medical web sites. My fibrosis was listed as “mild.” I was happy to find this group.
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Like -
Helpful -
Hug
1 ReactionWhen I first saw and read my CT reports this June my first one also said my pulmonary fibrosis was minimal that was the 2014 report. But the VA never felt it was important to mention. Same thing for the other 2 CT scans. Never said a thing to me about the pulmonary fibrosis that had gotten worse over time.
Now I have a lot less time to think about a lung transplant. That is a big decision to make. Alan
What a shock to get this diagnosis via a patient portal! I hope you will be seeing your doctor soon. There may be some treatment for you that may slow the progression or put you into remission. This group has been helpful to me as I Have not connected with anyone in my town with pulmonary fibrosis.
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Like -
Helpful -
Hug
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