• Posted by gerri-tokay on October 7, 2019 at 10:19 am

    My brother-in-law, age 62, was diagnosed with IPF several months ago. They were referred to Temple Lung Center in Philadelphia and so far he has received no treatment or even diagnosis of severity of IPF. They have gone for advanced testing and have been told to come back in 4-6 weeks and they will have a plan- twice. His next appointment is Oct. 18 and my sister needs to have as much information as possible to know what questions to ask. Is this normal to take so long to diagnose and begin any kind of treatment? Is there a list of questions that they should be asking the doctor? Everything I have read says that the best you can do is slow the progression so I don’t understand why they would go months without getting him started on something to slow progression. He has been to the ER and admitted to the hospital 4 times since January. Thank you for any information or suggestions!

    gerri-tokay replied 4 years, 5 months ago 2 Members · 2 Replies
  • 2 Replies
  • mark-koziol

    Member
    October 7, 2019 at 2:29 pm

    Hello Gerri, there are questions to be asked and the pulmonary fibrosis foundation has an FAQ set of questions to be asked. Unfortunately the delay in between appts is normal for ipf patients. If his ipf is in the moderate severity range I would speculate they would prescribe an anti-fibrotic medicine like ofev or esbriet. I do know Temple is a high volume lung transplant center so I would assume it would also be a high volume pulmonary and ild clinic. I’m sorry about the wait. Best wishes, Mark

  • gerri-tokay

    Member
    October 7, 2019 at 6:34 pm

    Thank you Mark! I thought that I saw a set of questions but I couldn’t remember where-thanks for pointing me in the right direction.

    Gerri

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