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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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rayhastings | @rayhastings | Feb 28, 2017
In reply to @alexander "My name is Larry - I have recently been diagnosed with Interstitial lung disease, which I..." + (show)
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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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I do have upf. I was dx about 5years ago. I started on Esbert about a year ago. I started on O2 about 4 months ago. I only use it for when I am doing things like excerise, walking, ect.

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rayhastings | @rayhastings | Feb 28, 2017
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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Should be IPF. Spell check got me.

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steve1948 | @steve1948 | Feb 28, 2017
In reply to @colleenyoung "@agullotti, getting a new diagnosis like IPF can be a shock. Here's more information from Mayo..." + (show)
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@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?

@loisblo, what is your exercise of choice?

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cold weather, high heat, and humidity I have found decreases my breathing capabilities. This is the first year I have gone to Florida for the winter (Live in Michigan) to get away from the cold with my condition. To start off, at least I can walk outside without a mask and not immediately begin my coughing spasms (something I did at home even with wearing pulmonary weather masks). The warm weather here doesn't cause the "particular" problem with me. When the humidity climbs and begins to rain it challenges me a little more. I don't know if the atmospheric pressure has any bearing on my breathing and coughing. I suppose I could begin a journal to find out, but never the less, it is what it is for me. I feel for you and wish you the best of luck.

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Colleen Young, Connect Director | @colleenyoung | Feb 28, 2017
In reply to @agullotti "I went in the hospital for what I thought was a heart attack it turned out..." + (show)
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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.

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Thanks Steve. Good luck with your ongoing personal rehab program. I appreciate your sharing your tips and progress.

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rayhastings | @rayhastings | Feb 28, 2017
In reply to @oliver22 "hi, do not despair! ask your Dr about Esbriet. i have been on it for two..." + (show)
Profile picture for oliver22 @oliver22

hi, do not despair! ask your Dr about Esbriet. i have been on it for two yrs and my results are very good. i have been diagnosed 6 yrs! do not believe everything you read on internet! You may require oxygen along the way, but that is doable too.

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PF is a tough dx.i was dx over 5 years ago. Although there is currently no cure, there a lot of research and tests of drugs that show promise. You need to see a pulmary specialists, one that is familiar with IPF. This condition is beyond the normal MD. One of the things that helps me is excerse. Hopefully there will be help for us in the next few years.

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lydoff65 | @lydoff65 | Mar 1, 2017
In reply to @colleenyoung "@agullotti, getting a new diagnosis like IPF can be a shock. Here's more information from Mayo..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@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?

@loisblo, what is your exercise of choice?

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You should try Arizona instead of Florida...warm, dry<br>

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Linda | @llwortman | Mar 1, 2017

I love your attitude to "Keep the Lungs Moving"
Attitude is everything! 80 is the new 55 isn't it?
Great work!
Linda

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agullotti | @agullotti | Mar 3, 2017
In reply to @oliver22 "hi, do not despair! ask your Dr about Esbriet. i have been on it for two..." + (show)
Profile picture for oliver22 @oliver22

hi, do not despair! ask your Dr about Esbriet. i have been on it for two yrs and my results are very good. i have been diagnosed 6 yrs! do not believe everything you read on internet! You may require oxygen along the way, but that is doable too.

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Hi Oliver I have just received all my results I have IPF early stages my lung tests at 89%, have bilateral scarring, some levels in my blood are indicating lupus. This is in my family's genes. I have some symptoms cough, winded after light exercise, I was just put on predizone 60mg a day. I have a future appointment at mayo jack later next month. I have been looking at the drugs and I have a ton of questions. I am 60 175lbs 5'10" how has the esbriet for side effects. I'm reading vomiting diarrhea sensitivity to sun. How has it been for you. Arty

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agullotti | @agullotti | Mar 3, 2017

Has anyone on the steam taken the drug OFEV I am wondering about side effects

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Linda | @llwortman | Mar 3, 2017
In reply to @llwortman "Hello thanks for sharing your lung story. I understand your fear and I am happy you..." + (show)
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Hello thanks for sharing your lung story. I understand your fear and I am happy you are brave to reach out to others on connect. I am a nine year lung cancer survivor. I also know about lung fibrosis.
You have made a excellent choice to work with lung health teams at Mayo. They are the reason I can now get outside and enjoy each day with activities because moving makes my lung feel better.
The brilliant pulmonary teams and support at Mayo have given me hope along with a great quality of life and desire to live well oand truly enjoy life and everything it has to offer ne day at a time!
Let's keep in contact in connect! We need each other's support. God bless you. You deserve a hug.
Linda

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Hi! How did your walk or workout go today?
Lw

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