FAQ - Pulmonary Fibrosis
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Pulmonary Fibrosis?


my grandma was just diagnosed with Pulmonary Fibrosis, she hasn't had a biopsy yet but i don't really know what it is or how long you can live with it. can anyone explain a little i would appreciate it.
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Pulmonary fibrosis is the end stage of interstitial lung disease, a large group of disorders that cause progressive lung scarring. The current thinking is that pulmonary fibrosis begins with repeated injury to the lining of the alveoli, the small air sacs in your lungs. The damage eventually leads to scarring (fibrosis), which stiffens your lungs and makes breathing difficult.

No cure exists for pulmonary fibrosis, and current treatments often fail to slow the progress of the disease or relieve symptoms. A number of new therapies are in clinical trials, however, and researchers hope that better treatments will become available. In the meantime, a lung transplant may be an option for some people with pulmonary fibrosis.

Treatment:
The lung scarring that occurs in pulmonary fibrosis can't be reversed, and no current treatment has proved effective in halting the progress of the disease or improving quality of life. Still, many people diagnosed with pulmonary fibrosis are initially treated with a corticosteriod (prednisone), sometimes in combination with other drugs that suppress the immune system.

These medications can cause severe side effects, including diabetes, glaucoma, reduced production of red blood cells, skin cancer and lymphoma. For that reason, treatment is usually discontinued if there's no improvement after six months. About one in three people improves temporarily on immunosuppressant drugs, though it's not clear why some people respond and others don't.

Adding high doses — 600 milligrams three times a day — of the natural enzyme N-acetylcysteine to a standard regimen of prednisone and azathioprine helps improve lung function, but it's not clear whether this is because the acetylcysteine is beneficial or because it reduces the toxicity of the other drugs.

Lung transplants in younger patients have shown positive results.

Oxygen therapy. Using oxygen can't stop lung damage, but it can make breathing and exercise easier, prevent or lessencomplications from low blood-oxygen levels, and improve your sleep and sense of well-being. It can also reduce blood pressure in the right side of your heart. You're most likely to receive oxygen when you sleep or exercise, although some people may use it round-the-clock.

Pulmonary rehabilitation. This is a formal program for people with chronic lung disease that includes, but goes far beyond, medical management. The aim of pulmonary rehabilitation is not only to treat a disease or even improve daily functioning, but also to help people with pulmonary fibrosis live full, satisfying lives. To that end, pulmonary rehabilitation programs focus on exercise, on teaching you how to breathe more efficiently, on education, and on emotional support and nutritional counseling.

Treatments under investigation
A number of treatments for pulmonary fibrosis are being developed or are in clinical trials. You can find an extensive listing of clinical trials in the National Institutes of Health Clinical Trial Database on the Web. You can also contact the National Heart, Lung, and Blood Institute for more information. If you think you might be interested in participating in a clinical trial, your doctor can help you find an appropriate program.

http://clinicaltrials.gov/search/open/condition=%22Pulmonary+Fibrosis%22

Talk with your grandmother's Dr. about the possibility of looking into any clinical trials being done. The above link shows many trials are currently taking new patients.

To help your grandmother's chances, suggestions for better outcomes:

1.) stop smoking
2.) exercise
3.) eat a good diet
4.) get 8 hours sleep
5.) control Reflux or GERD symptoms

Prognosis
Pulmonary fibrosis is a progressive illness, producing increasingly severe symptoms, which generally has a poor prognosis

The median survival of biopsy proven IPF is less than three years. Most will die as a result of respiratory failure, but others will develop infections secondary to steroid therapy or right heart failure.

Poor outcome is associated with:
Older age
Male gender
Severe dyspnoea
History of cigarette smoking
Svere loss of lung function
Appearance and severity of fibrosis on radiological studies
Lack of response to therapy
Prominent fibroblastic foci on histopathological evaluation.
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I would advise talking with your grandmother's doctor to get the best information on her prognosis. Without knowing the specifics of your grandmother's case, it's hard to give a good educated guess on her future. I have heard really good things about current successes in this area with drug trials. After all the tests are completed, I would ask the doctor if your grandma might qualify for any of these.

Hope this helps, I know how stressful it can be at times like this. The best thing you can do for your grandma is do just what you are doing, find treatment information out for her. Try & make sure someone always goes to her appointments with her. There is usually so much info given out by the doctor that it can be over-whelming for the patient. Good luck!  (+ info)

pulmonary fibrosis?


My dad was diagnosed with Pulmonary Fibrosis in Sept 06. He seems to be on a rapid decline. He is in advanced stages and damage to his lungs is extensive. He is on medication but it doesn't seem to be helping and he has been refused oxygen as test showed that using it did not help him. I can only fnd a limited amount of info on the disease and I'm not sure what to expect. He is constantly breathless and can bearly walk around his home. It is so frustrating that nothing seems to be able to make him feel more comfortable. He sees a specialist every 3 weeks but inbetween appointments we just seem to be on our own. I know the outlook for him isn't very good. If anyone has experience of this disease then I would be grateful for any info.
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My mother died from it. If I had it I would try taking 400 iu of Vitamin E 3x daily and MSM 1-2 grams 4x daily. This may (no guarantees) slow down the scarring process.  (+ info)

What is the difference between asbestosis and pulmonary fibrosis?


My husband has been advised by his consultant to claim industrial disease allowance for his pulmonary fibrosis.Has he worked in shipbuilding with asbestos we expected to be told he had asbestosis!Should we be pleased or is it two names for same illness? He has lost a lot of former colleagues to asbestosis and so we and especially me, are very concerned about his quality of life in the near future.
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asbestosis is caused by exposure to asbestos asbestos fibres are thin and microscopic and easily pass through the filters in the nose and bronchi into the lungs it sticks to the lungs and scars the lung tissue it makes it harder for the lungs to function properly and gas exchange gas exchange in the lungs gets harder it can cause respiratory failure and can take years to develop
pulmonary fibrosis scars the tissue in the lungs eventually the air sacs in the lungs are all replaced by fibre or scar tissue this tissue is thicker and the tissuyes cant transfer oxygen to the blood anymore  (+ info)

What is the chinese herb that is an alternative treatment for pulmonary fibrosis?


It was used for pulmonary fibrosis and COPD type problems?
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Found this web page on the web: Experimental Study on Treatment of Pulmonary Fibrosis by Chinese Drugs and Integrative Chinese and Western Medicine ( It's in Chinese ... http://scholar.ilib.cn/Abstract.aspx?A=zxyjh200402010 ) - The last sentence reads: salvia miltiorrhiza treatment to Pulmonary Fibrosis has curative effect.

Doederlein's Spikemoss herb (Latin name: Herba Selaginellae Doederleinii) is use to cure lungs and nose cancer. You may try these two herbs combined. Consult your TCM practitioner before using them.  (+ info)

What is the life expectancy of a person with CRF, lupus, and pulmonary fibrosis?


My sister-in-law has all three diseases. She has had lupus since 1999, renal failure and pulmonary fibrosis since 2006. She now weighs a small 59 pounds at 36 years old. Everywhere I research and every doctor I ask can not give me an honest answer. All I am told is her "quality of life" speech. I need some answers. How much longer can she expect to live? Please no insulting remarks from anyone.
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The weight coupled with the diseases doesn't sound good at all. If her weight continues to drop her life expectancy is shortened dramatically. Prayers with your family.  (+ info)

Does anyone know of an online doctor of Pulmonary Fibrosis?


Hi! I live in a small city in Mexico where there's not much technology on treatment of Pulmonary Fibrosis. It would be of a great help if you could tell me about some doctor who offers consultations online about this disease. Thank U in advance.
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There are two organizations in the United States that may be able to help. They are:

http://www.coalitionforpf.org/
http://www.pulmonaryfibrosis.org/

Both of these organizations are patient advocates and if you need help, they are the best place to go. I know. I have pulmonary fibrosis and they have been a tremendous help to me and my family throughout our struggles with this hideous killer. Good luck to you and I hope they can help.  (+ info)

Would the British climate be good or bad for Pulmonary Fibrosis.?


My friends mother, who currently lives in the Mediteranian, has been diagnosed with Pulmonary Fibrosis. Would it be a good or bad idea to bring her to England?
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It depends since there are yet no effective cure pulmonary fibrosis right now..if you bring her to England on the countrysides and away from the inhaled environmental and occupational pollutants that are usually found in urban areas then it is okay..  (+ info)

Will pulmonary fibrosis reduce peak flow?


I know a peak flow meter is good for detecting an asthma attack.
Is peak flow reduced in with pulmonary fibrosis?
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Pulmonary fibrosis will likely NOT reduce peak flow. Fibrosis is a restrictive physiology whereas asthma is obstructive. Purely restrictive diseases typically do not reduce peak flow until the very end stages where exhalation times are short and flow then becomes a volume limited phenomenon.  (+ info)

Does anyone here have Pulmonary Fibrosis or know of someone? Do you know of any remedies for it ?


Pulmonary Fibrosis? Do you know of any remedies for it besides what a Dr. can do?
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Self-care
Being actively involved in your own treatment and staying as healthy as possible are essential to living with pulmonary fibrosis. For that reason, it's important to:

Stop smoking. If you have lung disease, the best thing you can do for yourself is to stop smoking. Talk to your doctor about options for quitting, including smoking cessation programs, which use a variety of proven techniques to help people quit. And because secondhand smoke can be just as harmful to your lungs, don't allow other people to smoke around you.
Exercise regularly. Exercise is a double-edged sword for people with lung disease. It can make symptoms worse, yet it's essential for maintaining lung function, reducing stress and improving overall health and well-being. What's more, strong muscles work more efficiently than weak muscles do, so they require less oxygen to accomplish ordinary tasks.

If you're already exercising, don't stop. And if you're not currently physically active, consider starting with a moderate workout, such as riding a stationary bike or walking. For instance, you might begin walking at a comfortable pace for just 10 minutes a day. Once you can walk the entire time without stopping to rest, increase the length of your walk by a minute or two each week. Many people with severe lung disease eventually can walk at least 30 minutes nonstop. If you've been prescribed oxygen for regular use, be sure to use it when you exercise.

You might also ask your doctor for a referral to an exercise physiologist, who can design an exercise program specifically for you. Most of all, don't allow friends and family to talk you out of getting the exercise you need.

Eat well. People with lung disease may lose weight both because it's uncomfortable to eat and because of the extra energy it takes to breathe. Yet a nutritionally rich diet that contains adequate calories is essential. The type of food you eat, the time of day and the size of portions can all play a role in getting the nourishment you need. Because it's easier to breathe when your stomach isn't completely full, you may want to eat smaller meals throughout the day rather than two or three large ones. You might also try choosing lighter fare, such as fruit and salads, rather than rich or fatty foods, which take more energy to digest. A dietitian can give you further guidelines for healthy eating.

Get plenty of rest. Getting at least eight hours of good-quality rest every night can boost your immune system and sense of well-being.

Control GERD. If you've been diagnosed with GERD, it's essential to keep it under control. You can help reduce acid reflux by waiting at least three to four hours after eating before lying down, eating smaller meals, avoiding any foods that trigger your symptoms and maintaining a healthy weight.  (+ info)

Does anyone have tips to help a sufferer with pulmonary fibrosis?


I was diagnosed about eighteen months ago following a very serious lung infection (pseudomonal aeruginosa).I spent a total of two months in hospital in an isolation unit,because the disease produced identical symptoms to multi drug resistant tuberculosis.The doctors were fantastic and finally managed to kill the infection just in time before it killed me.Unfortunately,it left behind a horrific legacy in the form of pulmonary fibrosis which is both progressive and incurable.While I have accepted that it is only a matter of time before it kills me,I intend to fight it all the way to the end.I certainly have no intention of laying down and dying just yet!
I get extremely breathless at times at the slightest physical exertion,and terrible chest pains when I try to take deep breaths to couteract it.
But,by far the worst symptom is that I never actually wake up properly anymore,even after a really good sleep.
Has anybody got any advice to help my day to day life please?
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Michael, sorry to hear about your diagnosis. I was diagnosed in 2003 with IPF, and I am actually hanging in there. When I was first diagnosed, I lived in Salt Lake City, Utah and the air quality and altitude made my life miserable. I was on oxygen 24 hours per day and like you, could not catch my breath. The doctors put me on prednisone and my weight ballooned 60 pounds. I finally reached a point where I couldn't work anymore, so I took long term disability (oxymoron for someone who is terminally ill) and moved to the Oregon coast. I am now off prednisone, lost 38 pounds, and only use oxygen when I exercise (I walk two miles every day). I use supplemental oxygen from a concentrator when I sleep (I also use a CPAP). This gives my lungs a chance to rest a little at night, and also gives my other tissues benefit from the additional oxygen. While there is no treatment, you can learn to live with this. If you will email me at support@terminaldisease.com and put "attention Barry M." in the subject line, I will send you an electronic copy of a book that might help you as you continue this journey.

The other responder mentioned transplant, and while that is an option, it isn't a good option for me. I would only be trading the problems I have now for another set of issues and my chance of survival is not what I would deem optimal. Drop me a line and I'll send you the book.

Keep fighting. Don't do long term goals, they only depress you. Try to keep your goals more realistic. If your wife has a birthday in 2 months, make that your goal - to be alive and kicking in 2 months. If you have an anniversary in six weeks, make that a goal - to be alive and kicking in six weeks. While the pain and lack of breath are horrible, that is your life now. Don't think about what it used to be, embrace what you have now and adjust your expectations. While I can't do a lot of the things I used to do, I can still do a lot of things. It takes me quite a while to walk two miles everyday, but so what? I'm not in a race with anyone, and by being ambulatory, I am helping myself live one more day. Your attitude and support group are the most important things right now. My wife makes sure I don't sit around feeling sorry for myself. She kicks me in the a** every day and makes sure I get up and get going. Good luck and keep fighting the good fight!

If you want additional information, you can go to:

www.pulmonaryfibrosis.org or
www.coalitionforipf.org  (+ info)

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Last update: September 2014
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