Recently diagnosed with IPF

Hi Travis:

I live in Canada.  We never have to go through this kind of BS.  You haven't given us any detail on when your Dad was first diagnosed. If it was recent then I don't understand his lung specialist saying there was nothing more they could do for him.  Could you give us more info?

Travis,  

How old is your father?  Is your father's lung doctor a Pulmonologist? Are you in a small town that there is not a lot of doctors that can specialize in this disease? What is the closest, larger city if you live in a small town?  There are so many questions to be answered here.  

There is a COE in Louisville at the university. Check with the PFF they have all kinds of links to COE's around the country.  www.pulmonaryfibrosis.org/

Is he still working or unable to work because of this disease?  If he is unable, apply asap for disability and get the ball moving.  Are you on Facebook?  There are a couple of places that will help you with this in obtaining information for your dad and to help you weed through the questions you are having.  I can direct you to a site that would benefit you on Facebook.

On Facebook search for Ultimate Pulmonary Wellness: COPD, PF, Pulmonary Hypertension et al.  It is a group that you need to join and wait to be approved.  There are so many on this site that can help with questions.  I have learned so much from joining this group as well as this site and Pulmonary Fibrosis 

Cleveland clinic in cleveland has a group of drs. That treat IPF.

[Respiratory function and alveolar biological changes under the effect of CDP-choline in pulmonary interstitial pathology: pulmonary fibrosis and sarcoidosis].[Article in French]

Pacheco Y, Douss T, Pujol B, Revol A, Vergnon JM, Biot N, Brune J, Perrin-Fayolle M.Abstract

Various anomalies of pulmonary surfactant have been described in relation to acute respiratory distress syndromes, hypersensitivity lung disease and pulmonary sarcoidosis. Phosphatidylcholine (PC) is the essential phospholipid component of pulmonary surfactant. Cytidine diphosphocholine (CDP-choline) is an essential intermediary in the biosynthesis of PC. The authors studied two groups of patients: one group consisted of diffuse interstitial pulmonary fibrosis and the other consisted of pulmonary sarcoidosis with parenchymal involvement. They observed quantitative and qualitative abnormalities of the phospholipid fractions of surfactant and more particularly of PC. The finding of a marked decrease in this phospholipid, especially in the cases of pulmonary fibrosis, justified the study of the therapeutic effects of CDP-choline. After one month of treatment with this substance, at a dose of 1 g I.M. per day, the PC fraction had returned to normal and, at the same time, there was an improvement in the PaO2 at rest and after exercise. Long term administration of CDP-choline appears to be valuable in the maintenance of the phospholipid equilibrium of pulmonary surfactant and in the improvement of the quality of alveolar gas exchange.