Bob Rawlins

It was one of my major concerns before I decided to have a

double  Lung Transplant.

I concluded that it was better than the alternative. Fibrosis was not going away and it’s not fixable at this time.

There are lots of studies going on about that but it wasn’t going to happen before my chronic lung disease would take my life without a…[Read more]

Russell,

Keep the faith and strong positive attitude.

I was on Oxygen for 6 years with a different type of disease at first, hit me out of the blue, life changing.

last 2 years I moved into IPF state, took OFEV right up until my Double Lung Transplant, November 22, 2021.

Best decision I’ve made. 12 weeks out a couple of hiccups but no oxygen a…[Read more]

So sorry to hear this.❤️🙏

IPF is such a difficult disease that we are trying research in the healthcare community.

God Bless

Merry Christmas to you all!

Stay safe and healthy during this very crazy period of increased Covid and flu season!

looking forward to a better 2022

God Bless you all

Bob Rawlins

I use my phone and set alarms so I don’t forget.

When the alarm goes off I stop whatever I’m doing and take the meds.

making sure that if I venture out and it’s close to my time I have the meds with me.

especially with Lung Transplant eventually coming for me I can’t forget to take my meds at certain and specific times.

Hope this helps

John,

hang in there. I have been on OFEV for over 2 years and it has helped me for sure.

I changed from 150mg 2x a day to 100mg 2x a day

it has limited

most of the side effects for

me

good luck

Hi everyone,

This a great topic.

I struggle with keeping my nasal passages clear and believe being on oxygen 24/7 doesn’t help much either😂

I do take 2 allergy medicines all year!

I also use nasal sprays like fluticasone most days!

it helps but try using Breathe Right nasal strips! It makes me have much clearer nasal passage and less throat c…[Read more]

Interesting topic for sure.

I have experienced dizziness from time to time and mostly when I am over exerting my activity without the proper oxygen flow.

Amazing how I used to be able to do some normal chores but forget at times the oxygen I need to get certain things done. That’s when I can get light-headed.

I’ve been on prednisone for alm…[Read more]

Great feedback everyone!

I have been on O2 24/7 for almost 5 years!
Coughing has been a bit of an issue. Morning is the worst until I get my nose cleared. I believe there is nasal drip at night for sure.

But the things that come out of my nose each morning are nothing short of scary, lol!!

I use a saline nasal spray and once I’m clear use f…[Read more]

I get headaches from time to time as well.

I believe it is a side effect of IPF and Ofev

but I tried these Breathe Right strips you can buy at the drugstore.

they helped me quite a bit!

worth a shot I figured, Good Luck!!

Correction

pulsating models are NOT conducive to sleep on

sirry didn’t catch it before I posted

I hope I can help you here.

I have both a small portable POC and a larger one that has more flow and pulse settings.

To be able to travel you need to have the right POC for a plane. They require you to have enough battery power for at least 2x the flight.

Also when I travel overnight by car I make sure it can charge in the car. But you also…[Read more]

Once you get your Doctor prescriptions call around based on what you need.

i would suggest thinking about the kind of lifestyle you are or going to have.

This will give than and you the best expectations.

Good Luck!!

breathe-easy!!!

It can be somewhat tedious and confusing when it comes to picking an oxygen supplier.

i made the mistake of not asking enough questions and calling several companies before choosing a supplier.

i currently use Lincaire and I believe they are nation for the most part. They have been excellent for me out here In Ohio. Actually the delivery people…[Read more]

MaryBeth Palumbo,

thanks for the info, I too have cough, ugh!

i also have written many blogs about our journey.

cairemedical.com/blog

we talk about different things and coping

Good luck on your journey. It’s a marathon that can be quite rewarding!

#meetthechallenge

Yes I have participated in pulmonary rehab for over 3 years and it is the best.

Actually one of the reasons I am keeping consistent with my baseline while taking OFEV to help slow the progression.

unfortunately, since  Covid they have shutdown pulmonary rehab and I really miss it.

I go on more walks and have a stationary bike that I exercise…[Read more]

I have some of this RLS quite often and at night.

i started taking some Vitamin D and Iron supplements as suggested by my doctor and it seems to have them be more far and few between.

but, unfortunately it does make hard to sleep at night.

But I don’t get it as often now after about 2 weeks into taking the supplements.

I take OFEV 2x a day 150 mg

No issues with milk or any foods really.

but taking it with or right after eating has limited some of the nausea feeling I get once in a while.

my first tests after being on it 6 months is in June

Anxious to see if there is any slow down, feel the same