Mayo Clinic Connect
Is there any one out there that has PF?
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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We found out in Feb.of this year my husband has IPF.He had a biopsy and that was how they found.We were just like you we were devastated.The pulmonary Dr.helped us with a Pharmaceutical Company and was given a grant for a medicine called OFEC,which is a clinical trial and it is suppose to slow the progession of IPF down.Without the grant we could never afford the medicine at 94000.00 a year.The side affects of the Ofec,are terrible but what else do you do.Through alot of sick times we have found a nap everyday and diet and exercise helps alot.Keep faith and take one day at a time that is what we do.Prayers for you.
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