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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.

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frane1939 | @frane1939 | May 25, 2018
In reply to @frane1939 "My husband was just diagnosed with IPF and we are just now trying to digest what..." + (show)
Profile picture for frane1939 @frane1939

My husband was just diagnosed with IPF and we are just now trying to digest what this means. He has all of the symptoms in the brochures we were given except the fingers and/or toes becoming flat on the tips. He will be starting on one of the meds as soon as it arrives. I will be checking into this group to learn anything I can about what to expect as this disease progresses. Sad to be writing this. Fran Eaton

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Thanks for your post. Yes, he plans to join this support group. He has been reading the post on my tablet.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 25, 2018
In reply to @frane1939 "My husband was just diagnosed with IPF and we are just now trying to digest what..." + (show)
Profile picture for frane1939 @frane1939

My husband was just diagnosed with IPF and we are just now trying to digest what this means. He has all of the symptoms in the brochures we were given except the fingers and/or toes becoming flat on the tips. He will be starting on one of the meds as soon as it arrives. I will be checking into this group to learn anything I can about what to expect as this disease progresses. Sad to be writing this. Fran Eaton

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Hi Fran, I'm glad to hear that your husband is also part of these discussions. I removed his email from your post. I did this because Connect is a public site and I don't want his email shared publicly. See the Guidelines on using Connect Safely here: https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/

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dogwood928 | @dogwood928 | May 29, 2018

I would love to hear from anyone 70+ and has had a lung transplant.

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6 replies
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rcfan9 | @rcfan9 | May 31, 2018
In reply to @alexander "My name is Larry - I have recently been diagnosed with Interstitial lung disease, which I..." + (show)
Profile picture for alexander @alexander

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?

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Just read this thread. How are you doing today? Are the scars gone and how is your breathing

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frane1939 | @frane1939 | Jun 3, 2018

Does anyone else with IPF have hoarsness. My husband gets this when he is too warm (Florida climate) . That is to say, it use to be that, now it does not matter if he is too warm, he gets really hoarse. He does find not speaking tends to help, Thanks, Fran

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3 replies
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paulallen | @paulallen | Jun 6, 2018
In reply to @frane1939 "Does anyone else with IPF have hoarsness. My husband gets this when he is too warm..." + (show)
Profile picture for frane1939 @frane1939

Does anyone else with IPF have hoarsness. My husband gets this when he is too warm (Florida climate) . That is to say, it use to be that, now it does not matter if he is too warm, he gets really hoarse. He does find not speaking tends to help, Thanks, Fran

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I have had IPF for 18 months. I have just developed hoarseness sometimes. Paul

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Walter Berg | @bergw2818 | Jun 7, 2018
In reply to @frane1939 "Does anyone else with IPF have hoarsness. My husband gets this when he is too warm..." + (show)
Profile picture for frane1939 @frane1939

Does anyone else with IPF have hoarsness. My husband gets this when he is too warm (Florida climate) . That is to say, it use to be that, now it does not matter if he is too warm, he gets really hoarse. He does find not speaking tends to help, Thanks, Fran

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Fran,
I think you have the perfect marriage!
Sorry, couldn’t let that pass!
Check with a pulmonologist and he may order a throat spray that may help such as
symbecort; then again, it could be something else. Got to check with a throat/ lung doctor but do it now while you’re ahead. Only gets worse!

Good luck! Walt
Have IPF for a few years!

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frane1939 | @frane1939 | Jun 7, 2018
In reply to @frane1939 "Does anyone else with IPF have hoarsness. My husband gets this when he is too warm..." + (show)
Profile picture for frane1939 @frane1939

Does anyone else with IPF have hoarsness. My husband gets this when he is too warm (Florida climate) . That is to say, it use to be that, now it does not matter if he is too warm, he gets really hoarse. He does find not speaking tends to help, Thanks, Fran

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My husband has had the hoarseness for well over a year. It is getting worse however. I suspect IPF was not diagnosed earlier as what I am learning, it is a rare disease. Even though a year ago when he had a TIA, his lung x-ray showed cloudiness in his lungs. They treated him for pneumonia. Just got the news today about the med he will be taking, Anxious to get it started. Good luck Paul

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Rosie82 | @rosie82 | Jun 24, 2018
In reply to @richardlande "hi any one out there with this problem,? i have had for several years now, bad..." + (show)
Profile picture for richard lande @richardlande

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.

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Diagnosis-- severe

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