• Marianne replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 3 weeks, 2 days ago

    Hi Charlene, Mark, John L. and everyone –

    I am starting Ofev this weekend.  The medication will be delivered tomorrow.  I found no help at all on the cost of the medicine but decided to take my Social Security while still working.  I will use that to help pay for the cost of the medicine.  Seriously thinking of retiring by the end of the yea…[Read more]

  • Update guy listed for lung transplant had heart by-pass a few years ago, so he did not have a heart transplant.  He comes to rehab every week but really looks like he is exhausted most of the time.

    John L. – Are you still doing well with OFEV?

    I applied for SS and will soon start receiving payments from them.  I am still on hold on getting O…[Read more]

  • Coreeta –

    Not sure where you are located – in the US or Europe.  I am in the US and in my mid late 60’s.  I was diagnosed with IPF last month.  Not on meds yet or oxygen.  I started pulmonary rehab 2 weeks ago.  My oxygen levels are good but they are usually higher after exercise than before I start exercise.  We have lots of different ages in th…[Read more]

  • Marianne posted an update 1 month, 2 weeks ago

    @mtaba Medi – i saw that you have IPF and are not taking either of the IPF drugs. I have been recently diagnosed with IPF – May 2019. I have not yet started on either of the drugs. Could I ask you why you are not taking either drug? Is it because of the possible side effects? I haven’t started either drug yet due to the amount of money I…[Read more]

  • Hi Charlene –

    I will probably continue to work from home part of the time during pulmonary rehab.  We have a very small office.  One of the guys works remotely from home the majority of time.  The owner travels alot for clients and vacation.  When he is out of town, he prefers that I am in the office.  I assume I will try to return to work full…[Read more]

  • Charlene –

    It went pretty well working 4 hours in the office.  At today’s rehab we had 2 patients graduate.  They are finished with rehab and both were able to increase their 6 minute walk distances by 30% so that was great news.  I am working tomorrow in the office, then I have a longer rehab session in the afternoon.  I will let you know how…[Read more]

  • 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 2 months 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 2 months 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]

    • Jojo replied 2 months 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]

  • 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) 2 months 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]

  • Load More
Copyright © 2017-2019 All rights reserved.

©2019 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account