Pulmonary Fibrosis Support Group

I have been diagnosed with interstitial pulmonary fibrosis last year. I wanted to deny it! However, the X-rays, C.T.'s, and bronchoscopy proved it was there as diagnosed. My dr. put me on prednisone and almost immediately my condition became better. I went on the internet and researched all the web sites re: pulmonary fibrosis. I looked at the NIH site and found that there are over 60 research projects going on now. Let me know if you can't find them. Also check the American Lung Association and other similar sites.
I think you should get another diagnosis at a major university hospital and perhaps they would accept you into a research program. NIH offers experimental drugs and they give you a very thorough examination - free. I know you feel helpless and hopeless but you can't wait to get worse. PLEASE fight this and try to be as positive as you can be. Call your pastor or any other person in your community and ask for their support and prayers. I will be praying for you and want to offer any research I have found.
Each day you wake up is a day worth living.

Thanks, Sawdusty. I never thought about being a guinea pig in a research program, but why not?! It couldn't hurt. I'll check out the websites again for NIH and American Lung Association.

I keep reading that everybody here who has IPF is on prednisone, but I told my doctor that I don't want to be put on it long-term. There are just way too many nasty side effects, and I'm already 75 pounds overweight. Gaining even more weight from the prednisone would only compound my mounting health issues.

My Aunt Susan told me to check into the Mayo Clinic. She used to work for the government and her insurance covered her carpal tunnel surgery there. She says they are the best.

I would be willing to look into alternate, experimental drugs because, as I said, prednisone (as well as the other anti-cancer drugs prescribed for IPF) really devastates your immune system, and I can't afford to get any sicker than I am right now.

I have my CT scan tomorrow morning right after I get off work, and in three weeks, after I'm off of the prednisone, I'm scheduled for full pulmonary lung function tests, including spiroscopy. And of course, after that, I imagine the next step will be a bronchoscopy.

I wonder what the chances are of getting a double lung transplant. If you have IPF in both lungs (as I do), wouldn't you have to have both lungs replaced?

So many questions......

I appreciate your keeping me posted on any research. And thanks for your sweet words. I want to live as long as possible, and as happily as possible, and if there is any chance at all for me to eventually get a new pair of lungs and a fresh start on life, I'm all for that!!!

I was diagnosed in 2001. Was told to get a will and put my affairs in order because I would never see my 34th birthday. Yes, big bummer right??? I turned 41 this July 4th. Doctors don't know everything. I haven't even needed to be hospitalized in the last 7 years. So, by all means stay positive in attitude and mind.

Well, honey, you obviously "still got it!" That's fantastic to hear!! My doctor is just the opposite. She won't even tell me I'm going to die. She acts as though I've just been diagnosed with a cold or something. Although I enjoy doing research on the Internet, sometimes it's really nice to get some solid information from your own health care professional.

The only thing she told me to do was quit smoking (which I haven't quite been able to do yet, although I did switch from Marlboro Lights to Marlboro Ultra Lights 72s (they're really short cigarettes). I smoke maybe four of these a day.

But then I cough, and up comes this dark phlegm, and I think it's because of the cigarettes. I thought I read that people with IPF have a dry, unproductive cough. Mine isn't, although I might still be dealing with the last dregs of bronchitis. But I've had bronchitis many times and NEVER coughed up dark brown/grey gunk before.

Were you able to successfully quit smoking? And if so, how the heck did you do it? When you were diagnosed, did they tell you it was from smoking?

Sometimes it takes a "not so bad thing" to calm or quiet down something worse. I began taking 30 mg of prednisone about a year ago. I ate everything in the refrigerator! However, after the symptyms began to subside I decided to reduce the prednisone. I informed my dr. when I began to have an increase in my p.f. symptyms (additional coughing, shortness of breath-worse than usual, and an increased pulse rate (over 100). He wanted to see me and do a lung performance test. He wasn't too happy when I told him I had gotten down to 5 mg a day. I am now on 10 mg a day and haven't gained any weight. I had my gall bladder removed last week and am doing everything I did before the operation. I played two sets of tennis today with oxygen strapped to my back.
I'm also taking Serracor twice a day and seem to have more energy and less coughing and less phlegm. Serracor can be obtained from the website: biomediclabs.com. Serracor contains serrapeptase and nattokinase. Serrapeptase is reported to soften or eliminate the fibrins (scarring) and nattokinase is reported to reduce the production of fibrins. Check the website for testimonials. Read them for what they are worth to you - don't be misled or uplifted because the food supplements don't work the same for everyone. I am taking them because the just might work for me. I was particularly interested in the testimonial from a regular medical doctor who had a patient with p.f. who took these and became much improved. Hang in there and know that hope is as abundant as the air. Use it along with the prayers you are receiving. Sawdusty

Heather--it is so good that you are asking so many questions and gathering information--that's the first step to taking control of your health. And good for you for cutting back on smoking--I never smoked but my daughter does, and many people in my family have COPD from smoking and are or were on oxygen.

I have recently lost 25 pounds--was trying in May and started using a special chinese herb prescribed by my Traditional Chinese Doctor, Dr. June at Liferising.com--located in Chicago. However, I have not been taking the herb for over a month and am still loosing weight (8 pounds in 1 month without really trying--my appetite is just greatly reduced). I think now the weight loss might be a symptom of the Insterstitial lung disease.

Anyway, maybe traditional chinese medicine (herbs and accupuncture) might help you with your weight, diabetes, and also to manage the anxiety of the diagnosis. (I was just diagnosed last week, and the new regimin of herbs is really helping to drastically reduce my coughing fits already!) Just be sure to find someone who is reputable (you could check out liferising.com if you want to find a practioner close in your state).

Will keep you in my prayers...this has been a roller coaster ride for me and my family! But faith has helped steady my course....

Kauailover

I must try to keep track of all the different medications I keep reading about on this web site and look them up.

Well, I had my CT scan Wednesday morning. I was petrified. Plus, I thought it was like an MRI. I didn't know they were going to put an IV in me, make me swallow some kind of alka-seltzer stuff and then chase it with a glass of mint-flavored, white chalky stuff. Oh, and then he said, "Don't burp!" Burp?! I thought I was going to puke! Ick!! Then, when they put the idione (?) in my IV, that was so WEIRD! I could feel this warmth radiating through my entire body.

Afterwards, I was so freaked out and feeling rather nauseated, that I called in sick to one of my part-time jobs.

Is it true that PF can causes rapid heart pulse? Because I couldn't figure out why my heart was suddenly racing, especially since I'm on a beta-blocker which lowers my heart pulse.

You know, I wouldn't mind trying Chinese herbs or acupuncture, but my crappy student health insurance doesn't cover alternative or natural medicines, and as it is, I don't know how I'm going to pay for the CT scan or any of the other tests and procedures. My doctor gave me a pamphlet on pulmonary rehabilitation and I don't know how I'm going to afford that either.

Has anyone applied for and gotten on Social Security Disability because of PF?

Heather, Look at this website: Lenor:Polymyositis Pulmonary Fibrosis & Raynauds Phenomenon

It is the journal of a young woman with all this diseases. It's very encouraging. Bless you, I will pray for you.

My doctor told me that exercise is really important, and also keeping the weight down. I am 50 lbs over weight, and too short of breath to exercise. On oxygen at night and as needed during the day. I cough really bad with any exertion. I have 50% lung capacity. Am I just being lazy about exercise? Maybe I'm not pushing myself hard enough. Does anyone else have this problem? Bless you all - I wish you well.

Heather, I'm so sorry for your diagnosis. My husband was diagnosed with PF 4-1/2 years ago. I have learned a lot during this time. At present he is awaiting a transplant. You need the doctor's help and DO NOT wait at all if you get any kind of respiratory infection - get on an antibiotic immediately. My advice would be to begin even now to think about a transplant - it is the only option at present, and do not let any doctor tell you they have this disease under control - they do not. Just stay as healthy otherwise as you can, keep a positive, optimistic outlook, and a visit to National Jewish Research Hospital in Denver might be helpful to you - it was to us.