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    • #29276
      Marisa Beard
      Participant

      Greetings — I am new to the forum and new to all things wrong with me. Just curious if anyone else out there in forum land has the same or similar diagnosis as me. I am on oxygen 24/7, and I use a POC and at-home concentrator. Although I hate hauling the oxygen around with me, I would not be alive without it.  I am currently on 20 mg of prednisone and 30oo mg of CellCept (mycophenolate) – I just increased the CellCept a day ago, so I am trying to get used to the increase. I have gained 25 lbs since I started taking prednisone (the CellCept could also add to that weight gain). I am careful of what I eat, but the weight keeps going up — very frustrated.  My last PFT wasn’t very good — I had one in Feb and another one in June. All of my numbers had gone down.
      As one of my pulmonologists put it, the autoimmune disorders are attacking your lungs. We need to try and get that under control before considering a lung transplant.

      I learn something new every week (sometimes every day). I need to wear a Holter Monitor for 7 days, which I did wear for 4 days until it quit working. I get to start over this week. As a point for more information, I am 62 years old, and I still work full-time. I am blessed to work for a university that allows me to work from home when I need to (which is 10-30 hours a week, depending on my energy level.)

      I would love to hear from anyone who has the same or similar diagnosis as me.

    • #29284
      Christie
      Participant

      Hi @marisa, would you mind sharing what your diagnoses are? You provided a lot of great info about yourself that people will likely relate to but if you are searching for folks with similar diagnoses, it will be helpful to know what your doctors are thinking about your condition at this point. 🙂

      You mentioned autoimmune disorders–could you share which ones? There are people in the forums with sarcoidosis and scleroderma, and likely others. Have you been diagnosed with pulmonary fibrosis specifically, or are you still working toward an official diagnosis for your lung disease? Just trying to narrow down specifics so you can connect with similar folks. Thanks for reaching out!

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