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  • Just starting this journey

    Posted by tracy78 on November 14, 2022 at 10:44 am

    In June went to doctor with shortness of breath, and cough. Had a chest Xray, after results of Xray doctor said I needed to get a CT scan. After results of CT scan doctor said I needed to see a Pulmonologist, also ordered some blood test.  I was positive ANA test, positive on Rheumatoid Factor, positive on CCP test. Doctor said I also had to see a Rheumatologist. After seeing Rheumatologist found out that I have Palindromic rheumatism. Pulmonologist says I have Interstitial Lung Disease with moderate lung scarring. Rheumatologist and Pulmonologist both decided to put me on Mycophenolate (2000 MG a day).  I have not had any side effects from the Mycophenolate. After starting Mycophenolate it seems my cough is better. In January I  go in for another CT scan and Pulmonary function test.

    Reading everyone’s experiences is a big help.  Tracy

     

     

    michelle-johnson replied 1 year, 4 months ago 2 Members · 1 Reply
  • 1 Reply
  • michelle-johnson

    Member
    November 15, 2022 at 6:45 pm

    I was Dx in 2018 I had gotten pneumonia and had a chest X-ray and a Ct that’s when they recommended I see a pulmonologist and get a lung Bx it told me I had pulmonary fibrosis no one ever told me that from onset that the average life span is three to six years of a life span that’s the average some people live longer some shorter I’m now on oxygen and have been for a few years my first doctor was a night mare he miss managed my care and I now have a great doctor who takes great care of me my old doctor never told me how serious this disease is and he made it sound like 10 years down the line I would get a transplant but even those don’t always go well and I’ve been informed that they are the least likely of all transplants to take and usually only last one to three years after is this really true see my old doctor told me that my insurance denied me twice for a transplant in 2018 and 2019 but I only just found this out because I had to get a copy of my chart from him for my second opinion so I read my chart and found all this information that was not true so I called my insurance company and I was told he never requested my transplant either time has anyone else experienced betrayed like this so mad the things sincerely michelle

  • michelle-johnson

    Member
    November 15, 2022 at 6:46 pm

    I was Dx in 2018 I had gotten pneumonia and had a chest X-ray and a Ct that’s when they recommended I see a pulmonologist and get a lung Bx it told me I had pulmonary fibrosis no one ever told me that from onset that the average life span is three to six years of a life span that’s the average some people live longer some shorter I’m now on oxygen and have been for a few years my first doctor was a night mare he miss managed my care and I now have a great doctor who takes great care of me my old doctor never told me how serious this disease is and he made it sound like 10 years down the line I would get a transplant but even those don’t always go well and I’ve been informed that they are the least likely of all transplants to take and usually only last one to three years after is this really true see my old doctor told me that my insurance denied me twice for a transplant in 2018 and 2019 but I only just found this out because I had to get a copy of my chart from him for my second opinion so I read my chart and found all this information that was not true so I called my insurance company and I was told he never requested my transplant either time has anyone else experienced betrayed like this so mad the things sincerely michelle

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