Recently diagnosed with IPF

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My father has been diagnosed with ipf and seen a lung doctor. His lung doctor said they can't do anything else and referred him to mayo clinic. Mayo clinic would t take him because we are out of state and they won't bill out of state insurance. We live in southeast Kentucky and are 14 hours from mayo in Minnesota. Does anyone know of a good doctor or clinic we may be able to get him in? I guess I need recommendations on other doctors maybe closer to us. Any help with this is greatly appreciated

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  • Posted

    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?

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  • Posted

    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.  

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    • Posted

      He is 59 years old. Yes we live in a small town. The doctor is a pulmonologist in Lexington ky. Said it was over her head because he isn't responding to the meds. Needs to go to mayo clinic is what her opinion was. His insurance company is looking for other doctors right now. I was just looking for a recommendation maybe something other than mayo?

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  • Posted

    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.
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    • Posted

      I just noticed where you said he applied for disability. Was that with SSDI? If so I just last week got approved. It took 5 months, but from what I understand is that is fast considering they have a back log of over a million applications. Did he ask for a compassionate dispensation?
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  • Posted

    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 
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  • Posted

    [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.

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