Forum Replies Created

  • LARRY

    Member
    February 7, 2023 at 3:22 pm in reply to: Cost of Ofev

    I am taking Ofev at its maximum dose now for over two years. I recieve assistance in paying the bill through an agency called ” THE PATIENT ADVOCATE CENTER ” I believe that if your doctor contacts them they can help out. Between my medicare supplement and this agency it becomes VERY AFFORDABLE. IT IS A GRANT PROGRAM SO IF YOU ARE TURNED DOWN THE FIRST TIME KEEP TRYING. STAY ON YOUR DOCTOR TO KEEP AT IT. There are some side effects , but after retesting my lung capacity after 1 year of use I was at the same levels – NO DEPRECIATION IN LUNG CAPACITY. THE SIDE EFFECTS ARE SMALL PEANUTS COMPARED TO THE RESULTS. GOOD LUCK !!

  • LARRY

    Member
    May 5, 2022 at 9:14 pm in reply to: AFib Detection and Montioring

    I had a-fib about 9 years ago. It took 2 oblation to eliminate it ,but had not had any repeat a – fib until just recently. It is spotty, but comes during overexursion or breathing attacks. Very far between. 2 days in last 2 weeks. It does worry me though

     

  • LARRY

    Member
    May 5, 2022 at 9:07 pm in reply to: Painful side effects?

    I too am having trouble sleepping and itching ovetnight. Everywhere.

  • LARRY

    Member
    May 5, 2022 at 9:23 pm in reply to: Telling your family

    You must tell them. I told my children right away. I also told them to read up on it before jumping to any conclusion. I have had IPF for a little more than a year now. I started Esbriet 2 year ago and my oxygen tests inhaling and exhaling had only deteriorated 2% in 2 year. It is helping slow it down. Make sure you call them regularly, I would recommend weekly, and update them. My dr. Is very optimistic. Says I could maybe last 20 yrs. Not on oxygen yet. Hope your children can be positive and optimistic.  It sure has helped me. I am 65

  • LARRY

    Member
    May 3, 2022 at 3:01 pm in reply to: Telling your family

    Itold my children as soon as I was diagnosed . The first thing i had them do was to look up what it is, how it can be treated and last and probably most important that many patients live for over 20 years with this and that i would be able to take Esbriet to slow down the progression of the disrase. I keep in touch at least once a week with updates. 1 year on Esbriet and my deteriation was only 2%
    As long as you keep in touch and are honest with them, they will understand

  • LARRY

    Member
    May 5, 2022 at 9:04 pm in reply to: Painful side effects?

    I too have a pain in my middle section ,right side. Iy might be gall bladder .i didnt have it before i started Esbriet. Brain fog has definitely increased as well as short term memory. Not sure if Esbriet is the cause, but its getting worse
    Unlike others though. Im gaining weight
    Also having w e ird dreams