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    • #28781
      Kay Robertson
      Participant

      I am new to this forum so please forgive any missteps.  I am 76 years old and been blessed with past excellent health. This past March, 2021, I developed a chronic dry cough so went to a Pulmonologist. CT scan showed Bronchiectasis, pulmonary fibrosis and honeycombing. I was prescribed two nebulizers, Brovana ad Lonhala, and vest therapy.  I had no improvement with the vest so the doctor now wants to try the Hillrom Airway Clearance System. Is anyone familiar with this equipment?

      Extensive blood tests show my immune system is in overdrive and I am positive for Scleroderma.  I have July appoints with Immunologist and Rheumatologist.

      Feeling overwhelmed and stressed having to find cause of my PF.  I do have a early August appointment at Temple Lung Center for a second opinion.

      Thank you for allowing me to vent!

    • #28792
      Christie Patient
      Moderator

      Welcome to the forums Kay @rizzinator,
      So sorry to hear about your sudden diagnosis of this nasty disease. It sounds like you are in good hands in figuring out the best way forward, but certainly take advantage of a second opinion if you can. Look for a pulmonologist who specializes in interstitial lung diseases. There are two anti-fibrotic medications commonly used to treat PF by slowing the progression of the scarring (fibrosis). We have subforums for both of these medications, Esbriet and Ofev, if you would like to learn more.

      As for the vest, I have not heard of anyone with PF using one, but that doesn’t mean it hasn’t happened. Vests are commonly used by cystic fibrosis patients to help clear their airways of excess mucus that is a signature symptom of CF. Since PF is more about scarring of the tissues than about buildup of fluid, I can’t imagine it working too well, but your doctor must have a reason. If you’d like, I’d be happy to connect you with someone in the CF community to discuss this with.

      Lastly, we recently welcomed someone else to the forums who had PF and scleroderma. I wish I could remember who, but perhaps they will see this and say hello. I think it is fairly common to have some overlap there. The company that publishes this website also has one for scleroderma. They don’t have a forum but there are news pieces and columns there if you’d like to read up. You can find it here.

      I know this is scary and stressful, but you have found a a great, supportive community to help you through it. Don’t be a stranger 🙂

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