HI Wizard – I am 72 with IPF. Live in Ohio. My pulmonologist wants me to pre screen for a lung transplant. I figured I was over the age limit. I know that The Ohio State University Hospital does transplants up to age 75. Also Cleveland Clinic transplants past the age of 70. I know at OSU your BMI has to be under 30. I was diagnosed 5…

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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… 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… 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… 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… 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”… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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

I have never thought of contacting my insurance agent regarding using oxygen.  I only use oxygen (a POC) when I am out and about.  At the present time I do not use oxygen at home during day or night.  I have a question about using oxygen when I am out and about.  My doctor prescribed 2 liters on exertion.  Recently when walking with 2 liters I… Read more

Hi Lora Lee –

Have you tried any receipts by Forks Over Knives.  They are vegan so not vegeterian.  I have found some really good recipes on their web site.  I was eating strictly vegan for awhile, felt better and lost some weight.  I got away from it.  I am not found of soy so that limited some of my meals.  I ate alot of beans for… Read more

So sorry for your loss.

Marianne

Hi all –

I was diagnosed with IPF in May 2019 after a VATS lung biopsy.  All other testing only told doctors I had a possibility of 3 different interstitial lung diseases.  I have been taking OFEV since mid 2019.  I take 150 mg twice daily.  I tolerate it pretty well.  All my PFT and blood work have been fine until Feb. 2021.  My PFT showed a… Read more

Karen –

Thanks for the note about BP.  I do monitor BP at home.  My BP is usually pretty good at home and at the doctor’s office.  Not sure why it was so high that day.  I did not know I was doing the 6 minute walk test until about 20 minutes before I did it.  Originally, my doctor was booked solid until the following month for the 6 MW… Read more

Elizabeth –

From what I understand most of POC go up to 4 or 5 liters.  There might be some newer units that go up to 6 liters.  In the US if you are on Medicare as primary insurance you can rent an older POC unit.  If you want a newer model, you must either rent it yourself or buy it outright.  They are great for walking and exercise but… Read more

Hi all –

I don’t have a caregiver yet.  I recently went on oxygen upon exertion.  I am still able to live by myself.  I have 2 adult children.  One lives 1 hour away from me and the other lives out of state – about 8-9 hours away.  My children have never wanted to take about my IPF before.  Now the one who lives 1 hour away wants to discuss me… Read more

Hi Char and everyone –

Update. I was getting so frustrated as oxygen supply company was not returning my calls I just stopped by their office yesterday to get some answers.  The POC has been ordered but has not yet arrived.  It doesn’t appear that it has been shipped yet.  I talked to a supervisor and voiced my opinion that they needed to… Read more

Hi all –

Most recent news concerning getting a POC from oxygen supplier. I got a telephone call on Monday 4-26-21 from oxygen supply company that they agreed with my pulmonary doctor that I “qualified” for a POC.  It would take 3-4 days to get one to me.  They will call back when they have a unit available.  So hopefully I will have a unit… Read more

Vince –

Sounds like your mum is getting the care and oxygen she needs.  I am in the US and having trouble getting the supplemental oxygen my pulmonary doctor prescribed.  It was prescribed March 5.  Apparently, there was some confusion as to what paperwork was needed.  The paperwork has down been sorted.  The oxygen supplier is waiting for… Read more

Cough comes and goes.  Think it is a result of GERD and IPF.  Sometimes a cup of hot water with lemon helps.  I also have allergies but not food related.  Some things that seem to set off my cough is laying down flat to sleep or rest, talking, drinking tea or a drink with caffeine (assume because of GERD).  Rarely does a day go by that I… Read more

Don’t have that issue but walking and exercising with a 10 lb. bottle of oxygen behind me is not fun.  Still fighting with oxygen supplier and hope to get POC soon.

Marianne

Sam –

Would it be possible for your head to be elevated with a pillow to get a scan?  Can you lay on your back at all?  I very seldom sleep on my back.  I can not lay flat because of GERD and IPF.  When I go to the dentist I have to have my head elevated when they clean and examine my teeth.  I also cannot lay down flat to get a massage.  I… Read more

Hi everyone –

I find it very interesting that so many of us are having body temperature issues.  I also find it I have more coughing that it also affects my body temperature – it makes me sweat and have a higher body temperature.  I recently started oxygen on exertion.  I do not yet need it at night but I am getting close.

Wow – it seems like… Read more

Bernard –

Sorry you are having issues with IPF and doctor availability.

I am in the US.  I was diagnosed in May 2019 with IPF.  I see a pulmonologist at a local teaching hospital which has a lung clinic.  He has been wonderful.  I currently see him every 6 months and have PFT every 6 months.  Blood work every 3 months.  My doctor always is… Read more

Sree –

Pulmonary rehab is excellent.  My doctor prescribed it and it was covered by my insurance.  I am in the US.  I believe I was on Medicare at the time.  My prescription was 3 times a week for 8 weeks.  Part of the class was learning about the various lung diseases and the other half was exercise.  We basically worked on treadmill, arm… Read more

Christie and Char –

Thanks  for the information.  I did not realize that Pulmonary Fibrosis Association helped with oxygen.  That is great to know.  My problem isn’t insurance coverage as I have Medicare plus a Supplemental Policy.  The problem is that the oxygen company does not want to supply what the doctor prescribed.  It is just… Read more

Bill Kelly 0

Thanks,  I did not know this fact.  I researched and it looks like there are only 2 companies in my area that charge the Medicare approved amount and accept assignment for oxygen costs).  One of them is on the list which my pulmonologist gave me .  I will check with them.

Marianne

Hi everyone –

Update on oxygen levels.  I have been using supplemental oxygen 2L when exercising and on long walks.  Pretty sure I am going to have to start using it more as I am dropping my oxygen levels when taking a short walk, plus running short errands – like to the grocery, etc.  I am still having issues with my oxygen supply company not… Read more

Hi all –

None of my doctors said anything about 3-5 years to live.  My pulmonologist warned me about the information on the internet.  Shortly after diagnosis – about 8 months I went on Ofev.  I  not all doctors are telling patients that they only have 3-5 years to live.  There are people on this forum who have lived much longer than 5… Read more

Hi Rajesh –

Have no idea.  I find it interesting that the Ofev stopped your mother’s cough.  I have been on Ofev about 1 1/2 years now but it has not stopped my cough.  I also have acid reflux so that might be part of the reason for my cough but my doctors have stated the cough is from IPF.  Actually my cough has been getting more frequent.  I… Read more

Hi all –

Any suggestions as to what to use to help with a dry nose?  I am not yet on oxygen at night.  I run a cool mist humidifer at night but still wake up with my nose very dry.  Doctor suggest KY Jelly and it seems to help a bit.  Have read somewhere that sesame seed oil is recommended.  Has any one tried it?  Saline mist nose spray?  I… Read more

Susan and Christie –

Thanks for the information on oximeters.  I live in Ohio – which is a bit cold in the winter.  The walk where I had the issues with the oxygen levels in the low to mid 80’s up to around 95 was on a warmer day around 60 degrees here so it was not the case of cold hands.  I am not underweight.  I actually need to lose some… Read more

Charlene –

Thanks for the reply.  I notice I am getting more short of breath when not doing much at all.  I have a feeling that oxygen at night and perhaps 24/7 is in the not too distant future.  I have a grandson who weighs around 27-30 lbs.  I get very short of breath if I carry him upstairs to his bedroom.  I visited with him and my son… Read more

Hi everyone –

I did an overnight oxygen test.  For now, I don’t need to add oxygen at night but doctor told me I was very close to needing it at night.  I know my numbers dropped into the 80’s overnight but came back up before 5 minutes.  My understanding is if your numbers drop below 89 and stay there for 5 minutes, then supplemental oxygen… Read more

Vishal –

Thanks for letting us know.  Keeping your dad and your entire family in thought and prayers.  This is a difficult disease for the person with the disease as well as their family.  I agree with Cindy that your love shows through in your posts.

Marianne

James –

Check with your pulmonary doctor to see if there are any local support groups in your area.  I am in Ohio but in a local support group that meets by Zoom.  They only meet 3-4 times each year.  Before Covid they met in person for a 1 hour presentation and then had lunch.  As I was working full time then, I never attended these in… Read more

Hi everyone –

Update from my pulmonary doctor.  He said he will do calculations from my PFT to correlate to RVSP and will get back to me if he feels I need to have a right heart cath at this time.  I am hoping I can avoid this procedure for now.  I am still adjusting to wearing the oxygen when on long walks.  Yesterday I walked .95 mile which… Read more

Neha –

Hi – I will have to check with my doctor and see if he will give me permission to share his presentation.  I will let you know.

Have a great weekend.

Marianne

P.S.  There were 11 people in the Zoom meeting – 4 pulmonary doctors from The Ohio State University and 2 other staff people from pulmonary/critical care department.  So 5… Read more