Pulmonary Fibrosis*

Posted by tetreaulta5 @tetreaulta5, Feb 25, 2012

Is there any one out there that has PF?

@pd02

Hi. About one month today, simply by examining the chest x-ray, my doctor told me that I had interstitial pulmonary fibrosis.I wonder if stem cells will soon work miracles. I have been searching the net for whatever new research has been done in this area and would certainly like to know more about this.

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I google everything there is a lot of information on the internet

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@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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moderate

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@dfay

I was just told I have pulmonary fibrosis.need to know more about this .please help

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Google everything on interstitial lung diseases and whatever you were diagnosed with I only read the medical sites it is surreal and I’ve read everything there is but unfortunately the progress of the disease is a guessing game so it’s a wait and see which I have been having a hard time with I just started psychotherapy and it is helping prayers for you

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@myiokubo

Hello out there! A week ago I had a chest X-ray by my new doctor because I had a positive TB skin test. No TB but they found a scar on my lungs – IPF – idiopathic pulmonary fibrosis. Of course I googled all the information I could to find out more about this disease and what I’ve learned is devastating and unbelievable. No cure, no medication, 3 to 5 years after diagnosis? This had turned my world upside down and I’m looking for support from those who also have this disease. I have had several bouts of bronchitis and pneumonia in the past 2 or 3 years, don’t smoke nor live with people who smoke, live in Honolulu, Hawaii. I am a 66 yr old new grandmother and desperate to live longer to enjoy my new role as Nana.

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I just started psychotherapy and it’s already helped very much in dealing with a fatal disease I’m at the moderate stage and I had to change my whole life very tough on the mind

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Hi Ray,
Tnx 4 that link. Nice to have a group that is only about IPF. Well written, too.

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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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I can’t answer about exercise, as I was accidently found to have IPF last fall, and I am asymptomatic and can still walk 3 miles a day, +/-like I have for a long time. Best of luck.

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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 REALLY wish I had been told 16 years ago that I had IPF, instead of 5 months ago!! If it was 16 years after my discovery, I would only be 104, a rather ripe old age, right? 😉 I’m still symptoms free as to cough and winded. But I think about my condition during the day, altho there is as yet nothing to do about it.

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@nomi

Hi Ray,
Tnx 4 that link. Nice to have a group that is only about IPF. Well written, too.

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The woman that runs the site was trained at the U. Of Iowa health system, one of the best for IPF treatment.

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@steve1948

Hi,
new here. I was diagnosed with COPD and IPF (by biopsy at the Cleveland clinic in 2014), and have been using Esbriet (9 caps per day) since then. I now keep an oxygen tank with me (2 liters) and my nebulizer or inhaler with me at all times. I cough insistently and quite often violently. We’ve tried omeprazole for acid reflux and sodium chloride (with my albuterol in the nebulizer) all to no avail. I often get headaches from coughing so much and we ( my doctors [ I have 3 pulmonologists, one in my state, Cleveland clinic, and VA]) can’t figure out just why I cough sooo much.
I still do weight training (sometimes with my oxygen on) until muscle failure (I have longer rest periods between sets that’s all) but am unable to do any cardio. When I get winded I start my coughing fits. I also use a brand name menthol lozenger to help sooth my throat and somewhat control my cough.
I have sleep apnea and use a Cpap machine with 2 liters of oxygen infused during my sleep time. Yet I’m not bad enough for lung transplant consideration.
Climbing stairs is a chore and I get being out of breath a lot, but the coughing is the worse(I’ve fractured my ribs 5 times in two years because of it (I’ve learned to keep my mouth wide open when I cough to lessen the pressure on my torso, and it helps, although unsightly). My worse times (outside of my weight training) is first thing in the morning ( I am of the opinion that the mucus builds up while lying flat) and just before I go to bed for some reason (haven’t a clue why that is). I’d be lost without my nebulizer, as it is the best relief I get from my coughing. In addition I have a percussion vest I use twice a day to help break up all that sputum, although when I was in rehab, they used a vibrating tool which help much more.
I’ve snow birded this winter and just a city away from a lung institute and with a phone conversation they say I qualify for a stem cell treatment. They do it in two different way, stem cells from your blood, or from your bone marrow. As stated by someone else, it”s not insurance covered and quite expensive. My doc in Cleveland is skeptical about it, as well as I am (if it’s to good to be true……..). So with all this said, I do my best to try and control it as my as it control me.

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I have used esbreit for about a year. I think it has helped.the progression seemed to have slowed. The company has a web site with information about financial help.

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@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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Moderate IPF one year I was diagnosed have gotten crackling in lungs back again so fibrosis has gotten worse a little but twice already for me

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@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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How do you play golf when using oxygen?

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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 am curious about what over the counter drugs if any are used by people. I have chronic sinus infection which blocks my nose so I can not breathe. I use nose spray and prednisone 20 mg and nose strips and vicks and occasionally antibiotics. I would be fine if I could just breathe through my nose. Is this part of the IPF process or something else. What RX drugs are used by people. My doctor did not recommend my trying the IPF drugs as I am old and have a real touchy stomach. Thanks for whatever info is out there.

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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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Good question, @loisblo.
I don’t have IPF, but I used to suffer from regular chronic sinus infections. Like clockwork I’d get a terrible infection every spring and late fall. It usually got so bad that it had to be treated with antibiotics, which I don’t like taking. Now when I feel the infection starting, I’m usually able to nip it in the bud with nasal rinsing or cleansing with a neti pot. Sometimes I also use Flonase (fluticasone) a prescribed nasal spray if the neti pot isn’t enough.

Here’s a Mayo Clinic video on the nasal cleansing.

@rayhastings @kturchin @steve1948 @nancyligon @oliver22 @kelloggk @agullotti @dfay @llwortman @nomi do any of you experience sinus congestion?

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@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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Welcome to Connect, @dogwood928.
Do you have IPF? Do you use oxygen?

@kturchin, what do you mean by “but twice already for me”?

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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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.. good resource .. thank you Colleen! Did not know it existed .. you are such a font of wisdom! Katherine

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