1. Community
  2. Chest and lungs
  3. Pulmonary Fibrosis

Recently diagnosed with IPF

Posted , 5 users are following.

travis_68409
travis_68409

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

0 likes, 13 replies

13 Replies

  • bob80691
    bob80691 travis_68409

    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?

  • rebbyreb99
    rebbyreb99 travis_68409

    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.  

    • travis_68409
      travis_68409 rebbyreb99

      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?

  • rebbyreb99
    rebbyreb99 travis_68409

    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.
    • travis_68409
      travis_68409 rebbyreb99

      Posted

      He has applied for disability and he is unable to work and yes I'm on Facebook

    • rich1mac1
      rich1mac1 travis_68409

      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?
  • rebbyreb99
    rebbyreb99 travis_68409

    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 
    • rich1mac1
      rich1mac1 travis_68409

      Posted

      Try the Pulmonary Fibrosis Foundation, They have many links to help. Sorry they are moderating my first post for the link to this non-profit organization for people with PPF.
  • adrienne35302
    adrienne35302 travis_68409

    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.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.