Anne

I use a portable concentrator when I leave the car and I ride my scooter. I am fine with a low number of O2 when I sit. In order to get into the car, I use a 50 foot or 75 foot tube (depending whether I am driving or riding) from my 10 unit in the house plug into the wall concentrator all the way to the car. I leave the tube in the garage to…[Read more]

It’s nice to know about the prednisone treatment for people who just get RIPF.  When I got my RIPF 6 years ago no one put me on steroids.  I had an oncologist, a radiologist and a pulmonologist.  I hope you are doing well with your treatment.

anne

Wow, you really do study our type of fibrosis.  I hope you will continue to read up on it and keep me informed on what you find.  I’ve never been told my fibrosis could get worse and that I need prednisone.  Although I’ve been prescribed it over the last 6+ years for upper respiratory infections.  Would you need to stay on prednisone for the who…[Read more]

IPF have a shortened life span and the new drugs are helping people.  IPF sometimes get lung transplants and get better.  There is no reason that people get IPF. Pulmonary fibrosis is a type of interstitial lung disease.

I dont believe those of us with radiation induced PF have a much shortened life span.  I’ve had mine for 6 years now and I’…[Read more]

what a wonderful last paragraph.  You are quite the writer.  Thank you.  Now, about Radiation induced PF.  No, the new drugs wont help us.  Ours came from the radiation and it “killed” some area of our lungs.  Our fibrosis does not grow like the IPF does.  I’m hoping since you’ve gone a few years without needed oxygen, you wont ever need it.  Y…[Read more]

Joe,

I had chemo and Radiation for my small cell lung cancer.  My cancer was cured and I was fine, then 6 months later I got PF in the area I had the radiation.  I’m called Radiation induced PF and interstitial lung disease.  The new drugs (5 or 8 years new chemo) are not given to people like me.  I’m told to loose weight and exercise.  HAHAHA!

anne

Radiation induced Pulmonary fibrosis is not like IPF in treatment and life expectancy.

My caregiver said he’d try out one of the groups.  Where can he find one–in person or on line?

I have had radiation induced pulmonary fibrosis for the past 6 years and am getting worse.  I have needed a dominate shoulder replacement, but the anathesiologist wont “put me under”. Therefore, I need help dressing and undressing and my hubby is sometimes very nice and other times picks at me.  I have trying to get him to understand his picking i…[Read more]

thank you so much for letting me know about Kim Fredrickson’s articles. I just finished reading most of her first one and see myself in a couple of years, except she walks and I ride a scooter. Therefore, my O2 intake is quite low while I’m out and about. I can only walk 10 steps without needed more than 8 to 10 L-O2.

I’m going to finish…[Read more]

My pulmonologist gave me Pharmaquip which is Johns Hopkin’s oxygen people. I have a big brown one which goes to 10 continuous flow and a simply go mini which is a 5, but not continuous flow.

I have bought 2 of the
Respironics EverFlo Home Concentrator
Philips Respironics Authorized Dealer
By Respironics
SKU
1020001

I use is when I travel. It’s…[Read more]

I try to walk from the house door down 3 steps and about 15 steps to my car. I sit and huff and puff for a few minutes. My machine only goes to 10 and I think I have it at 8 when I go to the car. I use an electric wheelchair in the house and a scooter when I go anywhere else.

It sounds like you’re a little worse than me, but we are similar. I…[Read more]

I Have flown all over using simply go mini and 6 batteries I have purchased. I’ve been seen plugging into a wall or phone kiosk. I had too many problems with swelling and am now on only US flights. I, too, purchased a portable that I bought a suitcase for travel. It plugs into the wall or the ship or hotel room.

I use a 2 when seated or…[Read more]

I have radiation induced pulmonary fibrosis. I have been flying for the last 5 years. I need 2LPM for riding in my scooter or electric wheel chair or sleeping. I use 8LPM when walking, showering, or pottying. When I’m out, I use a 5 when walking, pottying etc. I huff and puff and I go down to between 78 to 84 pulse ox for a minute or 3 or 4.…[Read more]

I’m still confused about too much O2.  I have been moved to 7 since I plummet when I walk over a minute.  Even the 7 doesn’t.  My pulmonologist has been taken to the hospital and I dont see my new doctor (a 2nd opinion doctore new practice) for a couple of months.  Anyway, I think 7 is too much for sitting since a 3 keeps me at 91/92 and a 5 kee…[Read more]

My fibrosis was caused from my ration treament used to get rid of my lung cancer along with chemo.  It is something that is more often seen in breast cancer  around the muscle or heart.  All of these treatments are not used much anymore.  If fact, even my treatment isn’t used, but I had such yucky lungs and my tumor was right on the heart, I had…[Read more]

I have one stationary concentrator for 24/7 use, 2 small bottles and a refiller to use with the stationary concentrator, one large standing O2 tank for use when the electricity goes out, and a small portable battery operated condensor all paid by medicare.

My pulmonologist requested 24/7 O2 in house.  He also said I needed portable O2 for use…[Read more]

I have a respironics mini portable condensor and medicare covers it and it is not a portable cylinder tank.  Perhaps if you go back to your oxygen provider and get someone further up in their “line of command” you will be able to get you a portable condesor rented and paid by medicare.  You pulmonologist has to prescribe it for you.

anne