Marianne

Hi all –

It is something you need to discuss with your doctor.  I would suggest going on antifibrotics as soon as possible.  I was diagnosed with IPF in May 2019 and was started on OFEV a few months later.  So far it seems like the OFEV is keeping my lungs stable.  Usually I tolerate the medicine pretty well.  Occasionally, I have a flare up and…[Read more]

Hi all –

I have IPF – diagnosed in May 2019.  Taking OFEV.  In 2021 – I had 3 episodes when coughing up thick foamy mucous.  Pulmonologist prescribed steroids.  He said it was a slight flare up.

Hope this helps.  I usually have a dry unproductive cough.  I also have GERD.

Marianne

Hi Michael –

I have 2 adult children.  My youngest, a son & his wife, were with me when I received the diagnosis from my pulmonologist.  I was diagnosed in May 2019 after 8 months of testing.  One bright spot on my diagnosis day before my appointment they told me I was going to be a grandmother for the first time in January 2020.  My grandson arr…[Read more]

Hi – I believe different transplant centers have different requirements.  I know that Ohio State University – Columbus, OH has a cut off date of age 70 for a lung transplant but I have heard that isn’t always a firm decision.   I am quickly approaching that age.  I believe other centers will transplant up to age 72-73.  I do know that OSU is doin…[Read more]

I used to have cats and both my adult children have dogs or cats.  I do not have any animals now.  When having tests to determine which ILD I had it was discovered that I am highly allergic to dogs and cats.  So with having lungs issues I decided not to have any animals in my home.  Hope this helps.

Marianne

Hi Annette –

I was diagnosed with IPF in May 2019 after a lung biopsy.  It was a few months until I started on OFEV.  I have had a few stomach issues but nothing major.  I found with OFEV you need to definitely make sure you space the morning and evening doses 12 hours apart.  I am now on 2 lt of oxygen on exertion.  My lungs have been rela…[Read more]

Hi all –

Ordered the book in early December.  It has been shipped and should arrive this Saturday.  Not sure why it took so long to be shipped.  Looking forward to reading it.

Marianne

Hi all –

Not sure but think both Esbriet and OFEV require prior authorizations before patients can get either of these medications.  I live in the US.  I have been on OFEV for 2 1/2 years and I have a prior authorization that is good through the end of 2022.  I assume this is something your doctor fills out to show that you medically “qualify” fo…[Read more]

Hi all.  I believe in some of the public libraries in Ohio you can pick up a self-test free of charge.  Here the self-tests are flying off the shelves.  Stores and pharmacies get them in a couple times a week.  A few hours later and they are sold out.  I believe the cost of these is around $25, if you can find them.

Marianne

Hi Wendy –

We missed you.  Glad you are feeling a bit better.  Have you tried any over the counter nasal sprays?  I use Simply Saline Nasal Mist by Arm & Hammer.  It is drug free.  It seems to help me.  I don’t get any sore throat from it.  I only use it as needed.  Also, have sometimes use a saline gel and a lubricating gel which is water b…[Read more]

Hi all –

Time for another pulmonary visit this week.  Last week had arterial blood gas (ABG), high altitude simulation test (HAST), PFTs, liver panel blood draw and 6 MN walk test.  Assume by results I will need to increase my oxygen levels as dropped to 84 during 6 MN walk test.  PFTs dropped slightly.  DLCO is still extremely low.  Will let…[Read more]

Hi everyone –

I was diagnosed in May 2019.  Began taking OFEV later in 2019.  Take 150 mg 2 times a day.  Very few side effects.  Occasionally, I have a couple of days of loose bowels.  It seems like the OFEV has been keeping my IPF fairly steady until this year.  My last two PFTs haven’t been great.  After PFTs and 6 MN walk in February I starte…[Read more]

Marisa –

I wanted to welcome you to the forum.  Unfortunately, I don’t have answers to any of your questions as I have IPF and on oxygen on exertion.  I understand about your numbers going down.  One of mine PFT numbers took a drastic drop in February so oxygen was added.  Hopefully, someone on the forum will have some answers to your que…[Read more]

Joe  –

It is a personal choice.    Some people cannot tolerate some of the IPF meds.  After talking with my doctor, I decided to take OFEV over Esbriet.  My reasons for this were that some people who take Esbriet have to be extra careful when out in the sun.  I do not live in a sunny place (Ohio) but have family and friends in FL who I enjoy…[Read more]

Hi all –

I always have a dry cough.  I have IPF as well as GERD.  Last week cough became a very deep  bronchial and I began coughing up thick white colored phlegm.  He prescribed steroids for 7 days.  He knows I am not a fan of steroids as I have had adverse results from them in the past (before IPF).  He prescribed 20 mg instead of 40 mg. …[Read more]

Hi arice –

I was diagnosed 5/19, am on OFEV 150 and supplemental oxygen on exertion.  I have issues with rash usually on arms, legs and sometimes on my chest.  This rash comes and goes.  It is quite itchy.  I am not sure if it is related to the OFEV as I have in the past had eczema and was advised by dermatologist to avoid soaps, laundry det…[Read more]

Hi everyone –

I got back into doing crafts more since retirement and my IPF diagnosis.  Things I make –

1.  Fabric gnomes – usually make the hats out of t-shirt or stretchy material.  Made some for family with different hats so can change hat with the seasons.

2.  Ceramic coasters with paper napkins or fabric.

3.  Resin art pictures with seas…[Read more]

Hi everyone –

I was diagnosed with IPF in May 2019.  All my PFT and 6 minute walk tests were good until Feb. 2021.  On those tests I drastically dropped my DLCO levels and 6 MW test I dropped oxygen to 86.  Doctor prescribed oxygen on exertion – 2 lt.  I finally got a POC (portable oxygen concentrator) which I take when I go on long walks or to…[Read more]

Hi everyone –

I finally received my POC which the doctor ordered back in March.  I just got it last week.  My oxygen supplier transferred me to another branch of their company.  This one is even further away from where I live but it seems as this new branch is much willing to provide good customer service.

Another thought about exchanging eq…[Read more]

I was told to contact my electric company to inform then that I am using oxygen in case there is a power outage.  I know some people have generators in their homes.  My oxygen supply company gave me portable tanks of oxygen as a back up in case the power goes out.

Marianne