• Jojo posted an update 4 months ago

    @mark-koziol thanks for your info on Ofer, it appreciated 🙂

  • Jojo posted a new activity comment 4 months ago

    Hi Mark, thanks for replying. I might have confused the issue. I have had all my tests etc including a visit to surgeon who explained biopsy procedure if needed. My respirologist in Toronto advised yesterday that there was no need for a biopsy as all tests and scans have clearly and definitively show if. I have been given the choice of which of…[Read more]

    • Hello Jojo, I was also given the facts about each medicine. They basically do the same thing but the side effects are different. I chose the Ofev. I like to be out in the sun and if I took Esbriet it would severely affect my sensitivity to the suns rays. This has to be your choice and I am glad your doctor gave you the options. Some people can’t t…[Read more]

  • Jojo posted an update 4 months ago

    Have been diagnosed with ipf. Now having telemedicine call with university health network Dr and not sure what to expect I’m in early stages and would like feedback on how long I may have to wait to try Ofer or eisbret. Or dr might Oder lung biopsy has anyone gone thru this procedure where they take two wedges from lung area for diagnosis. P…[Read more]

    • Hello Jojo, from recollection I think you have to be diagnosed with moderate stage ipf in order to be prescribed. I did have the lung biopsy and several pieces of my lungs were extracted. I recovered very well from surgery. I was discharged on my third day and did not suffer any type of complication. If you have your ipf diagnosis I am wondering…[Read more]

      • Jojo replied 4 months ago

        Hi Mark, thanks for replying. I might have confused the issue. I have had all my tests etc including a visit to surgeon who explained biopsy procedure if needed. My respirologist in Toronto advised yesterday that there was no need for a biopsy as all tests and scans have clearly and definitively show if. I have been given the choice of which of…[Read more]

        • Hello Jojo, I was also given the facts about each medicine. They basically do the same thing but the side effects are different. I chose the Ofev. I like to be out in the sun and if I took Esbriet it would severely affect my sensitivity to the suns rays. This has to be your choice and I am glad your doctor gave you the options. Some people can’t t…[Read more]

  • Jojo posted a new activity comment 4 months, 1 week ago

    After many many tests my internal medicine doctor has advised ipf diagnosis. She also set me up with a surgeon to discuss biopsy, but I really don’t want to have this done if not absolutely necessary. I have a telemedicine appointment with Dr Shapera thru University Health Network as I live far from Toronto but in Ontario. So would anybody know…[Read more]

  • Jojo posted a new activity comment 9 months, 1 week ago

    Thanks Marianne appreciate the info. I am in all the tests stage. I had a ct thorax scan done which my Dr said showed IPF. But he now ordered a HIgh Resoltion CT Scan and a PTF Pulmonary Function Test in the next two weeks so I guess I’ll know even more then. I have had the dry hacking cough some breathlessness fatigue for over a year and half s…[Read more]

    • Jojo – Yes it is very important to get the right diagnosis because different diseases are treated with different medicines. Best of luck to you. I had the dry hacking cough for 5 years. Primary care doctor kept telling me it was acid reflux until I went back in September 2018. Then I was sent to a pulmonary doctor. I went out for a second…[Read more]

  • Jojo posted a new activity comment 9 months, 2 weeks ago

    Thanks Charlene! This is so new to me that it’s a bit scary.

    • No problem @jojo, I remember the early days of my diagnosis and how scary and confusing everything was. Be gentle with yourself during this tough time, and feel free to reach out and ask us any questions. This is a very supportive and caring group of people who will do everything they can to help you. Hang in there, and know that we’re all here…[Read more]

  • Jojo posted an update 9 months, 2 weeks ago

    Can anyone tell me if high resolution ct scan is enough to be diagnosed with IPF.

    • Hi @jojo, yes, from my understanding this is the primary tool used to diagnose IPF. Can anyone else confirm this?

      Charlene.

      • Thanks Charlene! This is so new to me that it’s a bit scary.

        • No problem @jojo, I remember the early days of my diagnosis and how scary and confusing everything was. Be gentle with yourself during this tough time, and feel free to reach out and ask us any questions. This is a very supportive and caring group of people who will do everything they can to help you. Hang in there, and know that we’re all here…[Read more]

    • After many many tests my internal medicine doctor has advised ipf diagnosis. She also set me up with a surgeon to discuss biopsy, but I really don’t want to have this done if not absolutely necessary. I have a telemedicine appointment with Dr Shapera thru University Health Network as I live far from Toronto but in Ontario. So would anybody know…[Read more]

  • Jojo became a registered member 9 months, 2 weeks ago

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