@anne-tarantino
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Anne replied to the topic Qualities of a Supportive Caregiver in the forum Caregivers and Spouses 1 month, 3 weeks ago
My caregiver said he’d try out one of the groups. Where can he find one–in person or on line?
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Anne replied to the topic Qualities of a Supportive Caregiver in the forum Caregivers and Spouses 1 month, 3 weeks ago
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]
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Anne replied to the topic BEFORE YOU START ON OXYGEN in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 4 weeks ago
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]
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Anne replied to the topic BEFORE YOU START ON OXYGEN in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 4 weeks ago
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
1020001I use is when I travel. It’s…[Read more]
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Anne replied to the topic BEFORE YOU START ON OXYGEN in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months ago
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]
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Anne replied to the topic BEFORE YOU START ON OXYGEN in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months ago
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]
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Anne replied to the topic Traveling with Pulmonary Fibrosis in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 months ago
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]
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Anne replied to the topic Too much oxygen in the forum Diagnosis Information and General Questions 1 year, 7 months ago
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]
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Anne replied to the topic all us old folks with radiation induced pulmonary fibrosis???? in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 7 months ago
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]
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Anne posted an update 1 year, 7 months ago
My radiation induced pulmonary fibrosis comes from treatment of my lung cancer 4 years ago with radiation treatements along with low grade chemotherapy. I was fine untile 6 months after radiation and then I needed oxygen — not too much. 4 to 5 when walking and 1 to 2 when sitting. This last year I couldn’t walk with a 5 any more (except…[Read more]
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Anne started the topic all us old folks with radiation induced pulmonary fibrosis???? in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 7 months ago
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
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Anne replied to the topic Portable Oxygen Concentators in the forum Diagnosis Information and General Questions 1 year, 8 months ago
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]
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Anne replied to the topic Portable Oxygen Concentators in the forum Diagnosis Information and General Questions 1 year, 8 months ago
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
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Anne replied to the topic Portable Oxygen Concentators in the forum Diagnosis Information and General Questions 1 year, 8 months ago
I cant find a company to sell the 8L/min portable. Do you know of any?
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Anne replied to the topic Portable Oxygen Concentators in the forum Diagnosis Information and General Questions 1 year, 8 months ago
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
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Anne posted a new activity comment 1 year, 8 months ago
that would be wonderful. I just dont know if a raising chair of 8 inches is better than one that lifts the feet a couple of feet–
anne
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Anne posted an update 1 year, 8 months ago
Is anyone familiar with an indoor electric wheel chair? I dont have enough O2 to walk around my house using 8L so I need something to help. I have to make sure I’m getting the features I need, not features I’d only use one or twice a year.
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Hi @anne-tarantino , good question! I don’t have any personal experience with an indoor electric wheel chair but I can ask some friends who have different rare diseases, who might have some experience with them if that is helpful? Please let me know and I’ll reach out.
Sincerely,
Char.-
that would be wonderful. I just dont know if a raising chair of 8 inches is better than one that lifts the feet a couple of feet–
anne
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Anne replied to the topic Portable Oxygen Concentators in the forum Diagnosis Information and General Questions 1 year, 8 months ago
Bert, you are a good writer—I agree with your statement 100%
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Anne replied to the topic Portable Oxygen Concentators in the forum Diagnosis Information and General Questions 1 year, 9 months ago
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 fly…[Read more]
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Anne replied to the topic Portable Oxygen Concentators in the forum Diagnosis Information and General Questions 1 year, 9 months ago
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
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