[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 use when I get home.

If you use a scooter or electric wheelchair, which I use both, then you wont need as much O2. Your scooter can carry your O2 tanks on the back of it.

Anne

[Anne]

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

[Anne]

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 is really hard for me to tolerate.  I have someone come in for 3 hours 3 times a week to help me dress, do laundry and pick up my messes.  I just find it almost impossible to deal with his “picks”, but some days or hours he is wonderful.  Any ideas on how to deal with him my main caretaker.  We dont have long term insurance, so everything is out of pocket.

[Anne]

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 continuous flow up to 5 and about $1000.00. I pack it in it’s own suitcase with undies stuffed around it. It flies as disabled equipment free along with my scooter.

I’ve bought from both the Oxygen Concentrator Store 888-505-0212 and Direct Home medical 844.798.0049

anne

[Anne]

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 haven’t found anyone who has radiation induced Pulmonary fibrosis. My pulmonologist only treats me with doxicycline (cant take cillins) or a Z-pac. My sputtom has some yellow or yellow green in it and I cough it up every 30 minutes—so I’m on doxicyline. I saw my cardiologist (I have swollen feet and calves). He said I was wheezing and fluid in my lungs so have the PUM. order me meds.

I’d love to keep in touch with what’s going on with your life. Do you have to take a big tank around when you leave the house? My friends or hubby get my scooter out of the trunk and bring it to the door for me. That works great and I’m only on 2-O2. I use a simply go mini.

I’m off on a cruise in a couple of weeks. I love heated pools and go twice a week for arthritis exercise. I can walk and kick and do everything in the therapy pool (93 degree)

[Anne]

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 riding my scooter. I can walk from the bed to the bathroom using a 5 (hightest my portable goes). I also use a 5 while seated in the shower, but I get winded while I’m splashing about.

How long have you have you PF? I’m 5 years in from the beginning of my Radiation induced PF. I’m getting worse and am trying to find a partner similar to me.

[Anne]

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. Then my pulse ox goes back to normal 94. I take 1 1/2 the required batteries with me when flying. I have even gone to Europe with my O2 condensor. I have used the Respironics condenser that goes to 5LPN. I have read about the Imogen going up to 6LPN

I take arthritic exercises in a therapeutic 93 degree pool. I use a handicapped chair to lower me into the pool and out. I park my scooter right by the chair to get to it using only two or three steps. I float my O2 condenser and the 7 foot canula to the side of the pool using 3 kick boards turned into a catamaran (PT taught me this). The condenser rests on the side of the pool and I can kick and turn with the rest of the crowd and have no problem with my O2. Once I’m seated in the shower, I huff and puff with only using a 5LPN, but get over it. It only takes about 10 minutes and well worth being uncomfortable for 10 to 15 minutes for showering and dressing.

I hope your mom doesn’t make her disease keep her at home. Take her to the movies, to museums, out to lunch and shopping. Using a scooter or electric wheelchair (I use both) so she can get around. Handicapped busses come and get you. I have a minivan with a lift for my scooter. I use the handicapped bus sometimes with my wheelchair to go play bridge.

You can purchase a condsenser or medicare will buy one for her if they believe it will work for your mom. Her pulmonologist has to request one for her. She should be able to rent a portable one–again with doctor’s request.

Anne

[Anne]

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 keeps me at 93/94  — 7 keeps me at 99.

Any suggestions???

anne

[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 use going to doctors, shopping, and other activities.  The two little bottles would not serve me for a whole day going out and about for lunch, bridge, and shopping or to movies.  I would need the concentrator and I have purchased several batteries to use.  I also have the car charger and plug paid by medicare.

 

Please contact your doctor and ask him/her to request the concentrator.  The staff will help with the wording if you MD doesn’t know how to word it.

[Anne]

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

[Anne]

@rammbo , @warlock

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

[Anne]

@rammbo

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

[Anne]

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

[Anne]

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 flying for a long period, I take 7 batteries, 15 hours of time usage.

I’m so sorry to hear your not back to feeling your best.

anne

[Anne]

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

[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 me more air than my 3 regular.  Now that I’m on 7, the 5 pulse is just NOTHING.

I go out in a scooter and can take pretend walks with the dog and my hubbie when we are traveling.  I get to the car using my condenser from the back door—– setting the tank on 7 L.  I keep one of the little tanks in my car to get to my scooter to go to the store or doctor’s.

I use the tank in my car to go back to my scooter.  I get the scooter off the lift, put my portable condenser on my scooter lift and close up the car—the tank of O2 stays with the car on the lift.  Then I scooter off all on my own using the portable condenser which gives me enough O2 to use while I’m sitting.  When I come back to the car from shopping or the doctors, I change over to my tank of O2 which goes up to 7L to use while standing or walking; put the scooter back on it’s lift; close up the mini-van back; walk around to the drivers door using my tank of O2 7L.  I switch back to my condenser of O2 plugged into the minivan—the unit I used while riding my scooter.

I know this is a lot of changing of tanks, etc, BUT IT LETS ME BE FREE!!!! I can do it myself and not have grumpy hubby fuss.

[Anne]

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

[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 whole time (2 to 10 years) or just take z-packs every so often?

I went to Cleveland clinic (2nd in US for Radiation induced PF-1st is Mayo clinic) I highly recommend them–all staff great!!! The doctor didn’t recommend any treatment for me.  Said the chemo for IPF had too many side effects–one of the main ones being diarrhea and I already have a horrible time with that (cant take any  oral diabetic drugs because of that) I get leaky diarrhea a couple of times a week even taking things to help me not—-so, no chemo for me.  She didn’t mention prednisone.  Oh, she told me to leave the Hopkins satellite office and go to the main Hospital and see an “old fart”.  I now have done that and will see my “old fart” of a doctor in December.

anne

[Anne]

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’m still about the same.  Maybe more prone to upper lung infections.

I know ‘my’ radiation induced PF came from having my lung with small cell lymphoma shot once a week for a couple of months with radiation to try and kill the cancer.  I was given a sheet to sign of all the bad side effects I could get caused by my radiation treatments.  Of course, I didn’t read them and never expected to get any of these weird things.  Well, PF caused by the radiation treatments was one of the bad side effects and I got it.

Some people who have breast cancer and radiation treatments can get radiation induced PF, too.  Not as many as those of us with lung cancer.

You’re more likely to develop interstitial lung disease if you:

• Are over 70.
• Were assigned male at birth.
• Smoke or used to smoke.
• Have a history of certain illnesses or conditions, like hepatitis C, tuberculosis, pneumonia, COPD or connective tissue disease.
• Work around substances that can irritate your lungs, like asbestos, silica, molds, fungi or bacteria.
• Have had chest radiation.

Hope this helped a little.  If you want more, let me know

anne

[Anne]

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.  You probably had good lungs before your radiation treatments and just a small part of one lung was effected so you’ll be lucky and not have problems.

I went for a CT scan once a year for 5 years and now every 2 years.  Remember, I had lung cancer, so they’re checking for that.

I went to arthritis arobics in the therapy 92degree water for a 45 minute class and loved it.  Came home and rubbed all my sweet furry babies and ate something really sweet. Thank you.

 

[Anne]

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

[Anne]

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

[Anne]

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 reading some of her articles.

Thank you again for letting me know about another radiation induced PF.

anne

[Anne]

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 to go on the old fashioned type of treatement used years and years ago.

 

anne