Terry Moriarty
Forum Replies Created
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Yes, I have a concentrator at home. I use two long hoses linked together with a swivel joint. I think the long hose is safer because it’s almost always flat on the floor. I also have the freedom to move all around my 1500+ sq.ft. ranch-style house. I can even get to the back of my minivan in the garage. Sometimes the hose will get twisted up and I have to unravel it like yarn. But it’s worth some minor inconvenience to have the freedom of movement.
I was more worried about other people or my grandkids tripping on the hose snaking around the house, but so far, no falls.
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Hi Cliff,
I was working in Canberra when I was diagnosed with Hypersensitivity Pneumonitis, a category of IPF. That was in 2007. After doing a lung biopsy, the doctor put me on prednisone, 50 mg. I went back to the US in 2008 and in 2009, my US doctor started weaning me off it. So, 10 years ago, it was used in Australia. But they did the lung biopsy to determine what I had because the doctor didn’t like prescribing prednisone. Felt it was a dangerous drug, but the risk was worth it in my case.
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I’ve been on oxygen since 20012. For about 6 months, I commuted on the subway carrying the small tank in a backpack. What a pain that was. I had the larger tanks delivered to my office. That was fun too getting the delivery guy through security. My client was very understanding.
Then I got an Inogen 1 G2 and that was freedom. I got 4 batteries because I lived in California and worked in DC. I was flying all the time. I got the Inogen because it’s batteries lasted the longest and was the easiest to change on the plane. I went on cruises and could get a concentrator delivered to my room.
oxygen never got in my way until now. In January, I went up to 7lpm. I don’t think there are any POCs that go that high. So I’m back to tanks if I want to go out. My high flow concentrator is really noisy.
I got use to the cord pretty quick. I use 2 linked together with the swivel junction. I’ve never tripped on it. It does twist up sometimes, which is annoying. The worst is when it separates and I don’t realize it until I’m nearly passing out. Not good. Usually happens when the joiner gets caught on something, like the corner of my kitchen cupboard.
Kinks don’t seem to impact airflow. I’ve caught it in my car door and the flow wasn’t impacted. The kink at the connection point to the POC didn’t cause any problems either.
I really do miss my POC. It mean’t freedom to me. Now it’s packed away in my garage.
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Hi,
I’m Terry and I went on prednisone when I was diagnosed in 2007, 50 mg. I was on it for about 2 years. I was weaned off of it because I gain about 60 lbs. I had no other side effects. In 2011, the disorder became much worse and I went back on 50 mg. I had lost 30 lbs. This time I gained 100 lbs and totally craved food. It was all I could think about. After about 2 years, I weaned myself off again. I’m losing the weight, but it is a real struggle. I don’t ever want to go on it again.
Yes, it helped in the beginning. But, as time went by, not so much. Not worth the weight gain. I had no other side effects.
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I’ve only been on 50 mg of prednisone. I wonder if anyone could handle 100.
As to your question on appetite, I only had the cravings for food the second time I went on prednisone. The first time, I just gained weight. Given I was already obese, any weight gain was bad. In fact, the first time, I was trying to lose weight and succeeding, only to find out that weight loss was a symptom of my disorder. Seems to also be a symptom that IPF is progressing, which is happening to me now. I’ve been gradually losing weight, but I’ve been trying to. So is weight loss due to the diet or IPF? I hope the former.
All I can say is that the first time on prednsone I didn’t have these food cravings and the second time I did. When I went off prednisone the second time, those cravings went away.
As to puffy face, I’m obese, so I guess my face is always puffy (g). I didn’t notice that side effect.