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  • I’m so happy you wrote this post!

    I’m almost embarrassed to admit, that as a physician, I didn’t see the point of having a social worker on our team at the CF clinic at University of Pittsburgh… UNTIL I needed her.

    There are so many programs out there to help children/adults with chronic healthcare needs but you rematch need an experienced e…[Read more]

  • My apologies. I rely primarily upon voice recognition to “type” and made a blunder.

    Did not mean to say “not many deaf INDIVIDUALS have proper training in medical terminology”.

    Should’ve read… not many deaf INTERPRETERS have proper training in medical terminology, not deaf individuals”. (I know that you do by this point in your life.)

    I…[Read more]

  • I’m a physician and have done “spinal taps” in a fluoroscopy suite, similar to an OR, on a large number of occasions. they are usually done in a procedure room, or if there is a real need, in the OR.

    I was also injured while serving in the U.S. Army Medical Corps, suffering a spinal cord injury. I’ve had lumbar punctures done on myself on a…[Read more]

    • Hey Dr Hoh. Thanks for your insight! Yes, I’ve had a lot of punctures at this point (including the headache and a blood patch- luckily just once), and just once before birth with my second daughter, as I had my first naturally. They have varied in whether I’m laying face down and cant see or hear anything, to sitting up and leaning over (like…[Read more]

  • I’m a male physician who has a 12-year-old with cystic fibrosis.

    Keep in mind that males who go into pediatric pulmonology are not forced to do so. They recognize that cystic fibrosis will be a large part of their practice and knowing that CF is much more common in females for an unknown reason.

    In other words, they’re choosing a specialty…[Read more]

  • Sounds a lot like obsessive-compulsive disorder. OCD can be a serious condition and is a very common anxiety disorder in chronically ill.

    Talk to someone you trust about it and get a referral for an evaluation.

    I can tell you from my own experience, you can totally change your life. I used to stay up all night worried about presentations or…[Read more]

    • Thank you for this W! I really appreciate your insight. To be honest, I have some strong OCD inclinations with very specific things (rituals and paranoia and control about the cleanliness of the utensils/food I eat), soooo…. you’re probably right on the money. Though I’ve never sought treatment for it, nor had anyone point it out back to me for…[Read more]

  • Salt intake, not old intake.

    Forgive the typo, I must rely upon voice recognition due to a service-connected disability. Thank you.

  • Paul is wrong about’s old intake. People with CF do need to take extra salt in addition to what they get in a normal American diet It’s a well-established fact. but don’t trust me, some random guy on the Internet… Listen to your dietitian in your CF clinic.

  • W. Hoh became a registered member 4 months ago

    • @drwill Hello and welcome to the forum. Thanks so much for joining us here. I’m Jenny, one of the forum moderators. You’ll soon be meeting my friend and co-moderator, Bailey. Both of us have CF, are mothers, are are in our 30s. We each experience CF differently and talk about our individual journeys here. Together, we strive to make the forum an…[Read more]

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