Bill Mattila
Forum Replies Created
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We come and we go. The same for all are equal. Now with lives lived we got in to bad habits. I quit
Them all. But to look back I can’t change a thing and wait for my higher power good luck and god
Speed.
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Is important that you make sure that the exacerbation is stopped.
It can go on and on as much as 6 mo.As that was I had read about
This disease. Go hospital if you have to. That what I read about this. Good luck WJM -
It helped me to carry the portable isn’t hard. If you want to breathe what’s the deal is. I had to talk myself into it. It’s
Crazy your life in a machine. Think about it you need air right. -
I am replying to my oxygen needs going up. You need to keep your needs even not letting your oxygen levels decline. I have read there is three levels in your body that need a certain level to maintain your body. Organs skin and whole body need proper oxidation. I hated to wear the cannala. But how can you live with low levels of oxygen ,cause you can’t. I have had to argue with myself after making myself sick from not getting my levels up which is stupid. I now have 3 machines in various forms to keep my blood levels up 24-7 of 90 + levels. I have had IPF for many yrs and has gotten worst over the last few years. So I take my machines with me. As at 80 yrs old I need to take care of me.
So I ask anyone can you hold your breath forever? WJ Mattila -
This is all true, but everyone is defensive about their Disability to move like they used too. You have to accept the reality of it????. I have to think about all the rest of my problems Catheter and all no breathe. I have had problems for 15+ years and still alive and almost 80. So I like to Whine about the Doctor that did a shxxxxd job on my prostrate…… Sincerely WM
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OFEV does cause bleeding ,so I stopped a number of times for procedures and too many side effects. Don’t fear a short stoppage.
Also see Doctor and and ask him or her.
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Bernard I’m sorry that they do that. I guess money is more important, we get Charged 11 thousand US dollars a month. My insurance is good so I only pay a low copay. I too suffer from side effects that most people do even the gas and bloating. I have had exrabations a few times it isn’t nice. I’ve had the IPF for at least 15yrs or so and I still have strength to do daily things, but a number of things keep me from other things.So I wish for you that don’t be scared of doing things, I do things slower and sit when you run low on o2 I use mine off and on especially at night. Don’t turn down the breath of life. I’m 78 and looking for today only. That’s all we can serve…. Good Luck mate. William Mattila
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I have fits with my mucus. I do Mucinex everyday at least the maximum (2400mg a day) so it’s a bear to regulate. I also have a vibrating vest that works. But you have to do it at least 1hr a day or more. I have had IPF for a long time, but didn’t do anything about it. I didn’t know I had it. So I went to lung man and got the news but now I’m on oxygen at times work etc. But I am learning how to read about what people do for themselves. Don’t be afraid to suggest treatment. You know what works and what doesn’t. At least I get the crap out of my lungs most of the time. Good luck everyone! William Mattila
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I had to kinda of remind my Doctor that I was short of O2 on working. He wrote a 2liter constant flow so now I haul a 22lb machine around with me. They said that the small machines won’t work on constant flow and where only on demand which was a lie.
They will do that and up to 5liter. Now I’m stuck with boat anchor.
Now should I spend 2000$ on portable. Any thoughts would be considered. William Mattila -
Dear suffering OFEV users. I have been on OFEV for 2.5 years. First year no side effects.
Now I have them all right down to the rash. Elevated alt and my thyroid test is messed up a little. I take 15omg twice a day I have diarrhea and sickness too. I skip a dose to reset my tract. Will be calling Doctor about my rash and other meds cause sun sentivety. Am willing to put up with sideffects. I take crap meds with the Ofev at times with a anti nausea drug in with it works good but will slow down movements. Coffee bothers my stomach . Ofev has slowed my fibrosis to a crawl. But will get sick to my stomach if I don’t
Take lifesaver wintogreen is a must as is peppermint oil wiped on my mustache. So good luck every one. William Mattila
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I handle my excess with a vibrating vest. And mucinex works for me. I mentioned to the lung man and he agreed but don’t take too long.
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Do not take Ofev with stool softeners. HA HA.
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My acid reflux had a lot to do with my lung condition. Causing lots of inflamation.