• John L. – Thanks for your reply.  I will check again with the various foundations but all I have talked to have turned me down because income is above what they consider.  One foundation does not count 1 house and 1 car but adds in your retirement accounts (or the portion you are withdrawing monthly) to your income.  I recently applied for so…[Read more]

  • Charlene –

    Yes I was able to work 4 hours yesterday.  Scheduled a massage for July and another one for August.

    Marianne

  • John L and Charlene –

    Thanks.  By looking at Healthwell online I do not qualify for help from them as I am still working.  I can’t remember if I actually called them but pretty sure I did.  I will check with them again.  Are you retired or do you still have a full or part-time job?  I have Medicare as well as Supplemental Coverage and Part D Pres…[Read more]

  • Liver function panel is back before starting drug treatment.  All liver functions look good to me.   My doctors automatically release results of tests to me.  I haven’t yet heard back from my doctor as to which drug he would use to treat a member of his own family.

    Heading out this morning for a massage.  I so need that massage after a week of h…[Read more]

  • Update –

    Got an email today from my doctor.  I only need to have liver function panel blood drawn every 2 weeks for the next 2 months.  Still not sure which IPF drug I will end up taking.  I spent time on phone today trying to get some answers from insurance concerning pricing of Ofev and Esbriet.  Basically, they could nor or would not give me…[Read more]

  • Hi Everyone –

    I am trying to eat smaller amounts of food more often in the day.  In a nutrition class I learned it is better to eat 6 small meals a day instead of the traditional 3 – breakfast, lunch and dinner.  So far I am ok with eating but I am not on medicine yet.  I am getting a liver function panel blood draw and will decide shortly wh…[Read more]

  • Hi all –

    Third day of rehab finished.  Classroom part of rehab they discussed relaxation techniques.  Doctor has me pre-approved for both OFEV and Esbriet.  Finally got some answers today on prices.  Better than before but still fairly expensive.  I just have to decide which one I prefer.  Right now I am leaning toward OFEV because if I chang…[Read more]

  • Marianne posted a new activity comment 5 days, 14 hours ago

    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]

  • Marianne posted an update 5 days, 15 hours ago

    @jojo Hi JoJo –
    Many times a high resolution CT scan is enough to diagnose IPF. But in my case it was not. I had a VATS (video assisted) lung biopsy before they could definitely say it was IPF. The CT scan looked like a couple of different ILD – NSIP, UIP or IPF. Biopsy said UIP which surgeon and pulmonary doctor said meant IPF. I am in…[Read more]

    • 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]

  • Charlene –

    Second day of rehab is finished.  It was a bit more difficult today as I had to exercise longer but I was able to do it and keep my oxygen levels in the 90’s.  The education portion today talked about nutrition.   There were 7 people in the class for the nutrition session.  I am not sure but think many of them might have COPD.  I think…[Read more]

  • Charlene –

    Thanks.  My first pulmonary rehab was earlier today.  I thought it went pretty well.  I was able to keep my oxygen levels in the mid 90’s.  BP was really good before and after the session.  Since it was my first session I only had to go 6 minutes on each machine.  Plus we did stretching exercises with stretchy therapy bands.  There…[Read more]

  • Marianne replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 1 week ago

    Hi all –

    My pulmonary doctor has decided to prescribe pirfenidone instead of OFEV in hopes that the cost will be less expensive through my insurance.  He wrote the prescription for 267 mg – 3 times a day, then 534 mg – 3 times a day, then 801 mg – 3 times a day.  He also told me that he thought in 4-6 months that would be a generic form of p…[Read more]

  • Hi all –

    Latest news – My pulmonary doctor reached out to manufacturer of OFEV on my behalf awhile ago.  He has heard nothing so he wrote a prescription for pirfenidone to see if that is less expensive with my medical plan.  Now we will waiting to see what my insurance company decides.  I know if I change plans for 2020 my costs go down in re…[Read more]

  • Karen  ( @lks8081 )

    Do you take your rehab in the OSU network?  I will be taking my rehab at the Outpatient East location on Mon, Tues and Thurs.  I assume they want you to climb the stairs to get stronger.  I am not a fan of climbing stairs as it is harder for me to breathe.  I have only noticed the stairs affecting me in the past couple of mont…[Read more]

  • Gina –

    I don’t know the answer to your question.  But from what I understand about IPF many of the cases no not run in families.  I was just diagnosed in May 2019 with IPF.  To my knowledge no long in my family was ever diagnosed with IPF.  Many people in my family had cancer and heart issues.  I understand your desire to be tested as well as y…[Read more]

  • Cynthia –

    Yes Cleveland Clinic is a couple hours drive from Columbus.  Good luck at Mass General in pre-evaluation process.

    Marianne

  • Hi all –

    I went today for evaluation for pulmonary rehabilitation.  I did a 6 minute walk test.  One time I dropped my oxygen levels to 85 but with pulse breathing was able to bring the up again quickly.  My prior 6 minute walk test in December 2018 I dropped my oxygen levels to 89.  I begin pulmonary rehab classes 3 times a week for the next 8 w…[Read more]

  • Rayna –

    Here are some links that might help you connect with others that have a chILD

    Children’s Interstitial Lung Disease Foundation –

    child-foundation.org/what-is-child/

    National Health Lung Blood Institute…[Read more]

  • Rayna –

    Hi!  Sorry to hear of your son’s diagnosis.  I know there are wheelchair basketball leagues.  I am not sure of they are available for teens.  Does your son’s doctor know of other teens who have chILD?  Are there any support groups online where he could chat with other teens?  This is a hard disease for adults to accept and I can only…[Read more]

  • Steve –

    I must have had brain fog yesterday.  I take D3 2000  x 2 tablets every morning.  Will look into adding K2 (K2m7).  Thanks for the suggestion.

    Marianne

     

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