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… 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… 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… 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. … 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… 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… 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. … 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. … 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… 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… 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… 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… Read more

I seem to not fit in with this group although I have pulmonary fibrosis.   My oxygen needs are enormous when I stand or walk more than 12 feet.  I am old.  I’m on no medicine, nor am I in a trial.  Everything seems to be for idiopathic pulmonary fibrosis.

So, if you have radiation induced fibrosis which is getting worse, please get in touch with me.

anne

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… 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

I cant find a company to sell the 8L/min portable.  Do you know of any?

Douglas,

I just went on line to Inogen and saw their portable concentrator only goes up to 5 liters .like the other portable concentrators.  Please let me know the model # for your machine so I can find any  still available.

thanks,

anne

Bert, you are a good writer—I agree with your statement 100%

When flying and using a concentrator, you cant be in the first row, nor in the isle seat.  You can be in the 2nd row and have to be in the window seat.  The concentrator stays under the seat in front of me or in the middle seat (if available).  I keep an extra battery down with me and other batteries in the upper compartment of the plane.  If… Read more

My Respirontics portable condenser is only about 5 pounds, but you have to add the weight of the batteries.  It has a handle and a strap on it’s bag.  I don’t pay have a co-pay for mine.

anne

Randy,

There are no portable units that are strong enough for you to use.  If you want to walk, you’ll have to use the big O2 bottle and roll it around with you.  Or, even use a walker or wheelchair and have the big bottle in the chair and you push it.

The portable units are pulse and 5 is supposed to be like a 2.5.  I thought my 5 pulse gave… Read more

I know of no one who will try out a condenser.  You can get a refurbished on for about 1/2 price.  Again, if you have medicare, there’s no problem with trying it out.

You can put a 5 pound bag of sugar in a strap over your shoulder and wear it around at home.

If you use a walker, then the walker seat can carry the condenser for you.  I do… Read more

I have used the Respironics mini for the last 4 years.   I get mine through Medicare by Johns Hopkins pharaquip.  It seems to bread once a year and I immediately get a new one.  When I was over seas and quit, I had a hard time.

I am on 3 when I sit or am on my scooter, but have moved from a 5 to 7 when walking to the restroom from my chair or… Read more

Hi,

I was amazed that there are so many of us over 55 who have this disease.  I also am surprised to read about the heart rates around 50 when O2 is in 50’s and then bounce up to 110 or 120 as O2 rate goes up, then go back to your normal rate.  My hubby told me my heart rate of 50 wasn’t possible, it had to be an error with my tester.  Now I… Read more

I’m to go on a face to face with a doctor tomorrow.  I’ll see if he knows how I can order a medical grade pulse oximeter—that is, if I remember!!!  Thank you for your suggestion.  I remember asking my oncologist’s staff about ordering one, but they didn’t know.  Maybe my endocrine doctor will know.

I’m so excited to know that there really are other people besides me who go up and down so often with their O2 levels.

Again, where do you get your O2 readers that go below 60  in their readings and also, will read your low levels quickly.  (I have tried 4 so far and none of them really work for me) I sometimes am so out of breath after… Read more

oh, my goodness,  you’re O2 goes down to 55 while on your oxygen?  What number is your O2 set for?  I’m on 5 which works fine while seated — 93, but once I’m up and about it drops into the high 60s but goes back up once I’m seated.  Is your heart acting up with lack of O2?  What is your heart rate during your exertions?  And what are your… Read more

I have found an hour a day in therapeutic 93 degree water is wonderful in helping me exercise.  I am on oxygen and can only walk about 20 steps before my O2 level starts to plummet and my Heart rate goes up and the huffing and puffing starts for over 5 minutes while sitting.  But, in the water I can march, and run, and walk forwards and… Read more