Pulmonary Fibrosis*

Posted by tetreaulta5 @tetreaulta5, Feb 25, 2012

Is there any one out there that has PF?

@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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I was diagnosed about 2 years ago with IPF. I was on night time oxygen immediately and as needed during the day. I did okay until a few months ago when I got a sinus infection that will not go away. I can not breathe through my nose and end up gulping air. After further testing I discovered that my immune system is so bad that I have to have weekly injections of antibodies from other people. I am almost 80. I am hoping that the treatments will make my immune system strong enough to fight off the sinus infection. Has anyone else in the group had a similar situation?

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@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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steve, I wouldn’t expect anything to happen in two months! I took it for about five years. It’s hard to answer your question exactly, but looking back, my breathing is no worse than it was several years ago, which is not what one would expect. I feel a lot better. I guess it all happened gradually.

I do also take other supplements. Black seed oil (please look it up) helps me to feel better overall, without being specific. Lots of vitamins and minerals,and NAC which keeps my cough loose. The serrapeptase was expensive, but the price varied depending on where you bought it. I found iherb to have the best prices.

Gentle exercise is very important also, I have come to realise. I used to think “I can’t exercise, I get too breathless”. But I have learned that being breathless does no harm, even though it is unpleasant.

If you would like to correspond with me further, you can email me: julwood at iprimus dot com dot au (safe way to put your address online). Obviously I can’t/ don’t give medical advice, but I’m happy to share what worked for me.

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@inspiration

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

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I have that horrible cough. Sometimes i feel like i am chocking and will throw up. For me its worse at night laying in bed. I am usinghydrocodone/chlorphen suspension at bedtinem and its helping. Its worth a try if your doctor agrees.

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@muskiemama

Thanks Colleen! We’re striving for 15 years too … my husband recieved a bilateral lung transplant yesterday, July 5. So thankful for the medical teams at Mayo and our hero, his donor.

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Miracles at Mayo Clinic!
Sending silent blessings.
Linda

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In reply to @loisblo "I have IPF." + (show)
@loisblo

I have IPF.

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I was diagnosed 2 yrs ago,but no it started 3 yrs ago.

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@loisblo

I first was diagnosed with pulmonary hypertension and in trying to find out what was causing that, they found it was IPF, So about 4 years since the beginning. Are you on oxygen yet?

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Not yet,thang goodnes. My last exam the tech told me my levels have gone down.

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@inspiration

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

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Hi @sophiasmom,
Let me be the first to welcome you to the pulmonary fibrosis group. I read in another message that you were diagnosed about 2 years ago. Can you tell us a bit more about yourself? What symptoms along with coughing do you find the most challenging? Are you on oxygen?

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@inspiration

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

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Hi Coĺeen, i have trouble with walking any distance,have trouble losing my breath. The tiredness really gets to me. I am not on oxygen yet. My levels drop into the high eighties when i make my bed or run a vaccum etc. If i rest they come right back up to 95 or 96. I’ m 65 yrs old and live in Florida. I will be flying next week to N.H. and I’m a little nervous about oxygen level. I haven’t flown since i was diagnosed.

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@inspiration

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

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Airplanes are pressurized to around 8000 ft. not sea level. Be sure your doctor knows you are flying. The air lines are really strict with people flying with oxygen equipment.

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@mairi

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.

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My pulmonary dr. prescribed a Z-Pak which worked great for the severe sinus infection I had.
Are you on oxygen at all? Your primary dr can prescribe med for you too. Hope you feel better soon –

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@mairi

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.

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Hi Tula:
I was also prescribed lots of ZPac
I eventually discovered it simply was not working!
I did research and read where zPac perhaps is not for everything.
A pulmonary appointment is what I answered my questions about my symptoms. Have you seen a Pulmonologist?
I’m so happy you found Connect!
Lindsy- mentor

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@mairi

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.

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I found ZPak did work that time but a Prednisone regimen in May of this year helped immensely and I am on a maintenance dose of 10 msg daily. My chest still gets tight & I have a croup like cough right now. Nothing has changed as far as meds get recently.

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@mairi

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.

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Actually, I have two pulmonologists on my team and I have a referral to go to Ann Arbor U o M to get an opinion from a larger group of experts. Info is about I have now because, as you know treatment for IPF is scarce, Esbriet side effect r too much for me & age precludes any transplant option. I’m thankful for this site and all the good people who r generous w/ Info.

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Where are the rest of the comments? I posted a reply to steve some time in the last week,(July 2017) but it has disappeared!

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Yes! I have IPF, was diagnosed about 5 years ago by my pulmonary doctor as COPD but a second opinion by Cleveland Clinic dIagnosed it as IPF. At present, I’ve been taking enzymes as prescribed by Pivital Health in Arizona. The pill regime has reduced the coughing and mucus considerably. Still have shortness of breath after little exertion. Doesn’t cure but helps until something better is developed!

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