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Jun 21, 2017 · Pulmonary Fibrosis* in Lung Health

Thank you! I will call tomorrow!! I don’t know why my doctor didn’t give me more information when he gave me the diagnosis of IPF. When I went home and looked it up on the internet, I was floored! I didn’t know that the prognosis was so dire. I want to at least stay at the same level, not get worse. I want to start any treatments that may be available and start them right away. I don’t want to waste any time! Thank you for the information. –Ann

Jun 20, 2017 · Pulmonary Fibrosis* in Lung Health

Oxygen isn’t that bad. Sleep with the concentrator plugged into the wall. You can get around outdoors with the portable oxygen concentrator (POS). You wear it on a bag on your shoulder. Look around at the grocery store. I bet you’ll see two or three of them. I wear mine like a purse strapped across my body. It isn’t bad at all. I’m 63 so I’m not as vain about using it as I might have been when I was younger. There isn’t a cure, but you could possibly take meds that will stop the progression. The one I checked into was Esbriet. I am willing to try but I need to get approved for a grant or some kind of trial. Good luck to you. Fighting is a good idea. I think you have the right attitude.

Jun 20, 2017 · Pulmonary Fibrosis* in Lung Health

Whatever you can do is not wrong. Keep walking with your dogs. Being active and getting out of the house is helping me. My favorite exercise is swimming. I use a tank at the side of the pool and a 50-foot breathing tube. I don’t even bring my portable concentrator outside because I don’t want it to get wet. I turn the oxygen up and I just paddle around. It is good exercise and helps my arthritic pains lessen. You aren’t doing anything wrong. Please don’t be hard on yourself.

Jun 20, 2017 · Pulmonary Fibrosis* in Lung Health

May I ask how your husband got this medication? According to my pharmacy, it will cost me nearly $3000 a month. I want to get on a study or a grant but even though I have sent my information to them online and filling out paperwork at a seminar, I have not yet heard from the pharma.

Jun 20, 2017 · Pulmonary Fibrosis* in Lung Health

I am in the same position as you. I was diagnosed two months ago. I am scared but also willing to fight. I went to a seminar on taking the medication Esbriet. I signed up and hope they will contact me. Without insurance, the meds cost $8000 a month. With insurance, the cost is near $3000 a month. There are grants and studies that you can apply for. I am on 2 liters of oxygen 24 hours a day. I would be happy to share any information I find with you. I think this is a good website. –Ann

Jun 20, 2017 · Pulmonary Fibrosis* in Lung Health

You could lengthen your cannula cord and keep your portable oxygen concentrator nearby. I don’t see much of a problem. I swim with the tank and regulator in a safe place at the side of the pool. You can’t get the regulator wet. I don’t want my electronics-based concentrator anywhere near the water. I don’t see a problem with golfing, just get a long breathing tube. You can go up to 50 feet without any dropoff of oxygen.

Jun 11, 2017 · IPF How To Cope with Sick Feelings in Lung Health

Ray, I hope that you are a good caregiver for your wife. It is so hard and so very important, especially when traveling. I feel guilty having my husband lug all of our baggage and carry my tanks and other heavy essentials. He doesn’t ever complain so I must say that I am very lucky.
I don’t want to sit around feeling sorry for myself. I need to get moving and push myself harder. Where have you traveled to? Have you found some places easier than others? What have you found to be helpful, as in wheelchair, or walker, portable oxygen concentrator? It would be nice to hear some traveling tips. I am lucky to have a wonderful husband, but we have yelled, screamed, and cried at each other more over the past 3 months, since my diagnosis, than ever throughout our marriage. It seems so easy to take out our frustrations on those we love. I need to stop showing my frustrations towards him and I need to stop playing the counterpart when he is angry Not easy to do. –Ann

Jun 11, 2017 · IPF How To Cope with Sick Feelings in Lung Health

It is good to hear that you have taken the bull by the horns and that you are getting rid of old trash around your house. I have only just begun checking out information on this site, but I see a lot of support and caring. It sounds like your life is going to be one of great change. I hope that you can make those changes create a better life for you. I wish you the very best. — Ann