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Libby Fisher

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@travelingnana

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  • Profile picture of Bill Mattila

    Bill Mattila replied to the topic Using supplemental oxygen in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 week, 5 days ago

    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.

  • Profile picture of Bill Mattila

    Bill Mattila replied to the topic Oxygen Delivery System when needs go up in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 weeks, 1 day ago

    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…[Read more]

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    Bill Mattila posted an update 5 months, 3 weeks ago

    Short of b all time now machine’s do my ox2…. 2 be continued I hope👀

  • Profile picture of Bill Mattila

    Bill Mattila replied to the topic Why the Word 'Rest' Triggers Me in the forum Living with Pulmonary Fibrosis: 50+ 5 months, 3 weeks ago

    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…[Read more]

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    Bill Mattila replied to the topic OFEV and Surgery in the forum Ofev (Nintedanib) 8 months, 3 weeks ago

    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.

     

  • Profile picture of Bill Mattila

    Bill Mattila posted an update 8 months, 3 weeks ago

    I haven’t been commenting on my ipf cause it is worsting. Time to use my oxygen more.
    I have other issues that I’m dealing with too. Like a subcatheter and bleeding from my line and going to get it changed. Not a good feeling. But the right MA does a good job.
    Shorter breath is hard to accept, but part of disease. So I posted some news.wjm

  • Profile picture of Bill Mattila

    Bill Mattila posted an update 1 year, 4 months ago

    Well I have a new attachment in my life as a doctors bone head misQ on a procedure has given me a A life time of misery, called a catheter direct to my bladder;( with all the
    rest of my issues that’s all I needed. Nothing new as I spend attached to a line. That I have stretched TOOFAR now have to heal it up. I have the same issues that the o…[Read more]

  • Profile picture of Bill Mattila

    Bill Mattila and Profile picture of Libby FisherLibby Fisher are now friends 1 year, 11 months ago

  • Profile picture of Bill Mattila

    Bill Mattila replied to the topic Progression of IPF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 11 months ago

    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…[Read more]

  • Profile picture of Bill Mattila

    Bill Mattila replied to the topic Phlegm in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 2 months ago

    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…[Read more]

  • Profile picture of Bill Mattila

    Bill Mattila replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 2 months ago

    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…[Read more]

  • Profile picture of Bill Mattila

    Bill Mattila replied to the topic Side effects of OFEV in the forum Ofev (Nintedanib) 2 years, 8 months ago

    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…[Read more]

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    Bill Mattila posted an update 3 years, 1 month ago

    Also Charlene THANK YOU for hosting this forum. You are a god sent angel.

  • Profile picture of Bill Mattila

    Bill Mattila posted an update 3 years, 1 month ago

    Got use to cpap machine yeah ! Also read I too take simvestation . Have taken statins for many years now. Who knows
    What helps anymore? Take my meds and feel good for what is wrong and not worry about everything…..

  • Profile picture of Bill Mattila

    Bill Mattila posted an update 3 years, 2 months ago

    My Ofev has slowed my IPF way down. But now Cpap machine is helping me breathe So I do it every night. I hate it but so welcome to disease. At least it has a good side effect.

  • Profile picture of Bill Mattila

    Bill Mattila and Profile picture of A. HoughtonA. Houghton are now friends 3 years, 10 months ago

  • Profile picture of Bill Mattila

    Bill Mattila posted an update 3 years, 11 months ago

    Running more out of breath. Going to doc. Next month.

    • Profile picture of Charlene Marshall
      Charlene Marshall replied 3 years, 11 months ago

      Hi @bill-mattila, so sorry to hear this! Are you keeping track of your 02 sats when you’re feeling this way? It might help a bit to bring to the doctor’s next month, if you have a bit of a log. Just a piece of advice that was really helpful when shared with me. Keep us posted, and hang in there.
      Charlene.

  • Profile picture of Bill Mattila

    Bill Mattila and Profile picture of Mark KoziolMark Koziol are now friends 3 years, 11 months ago

  • Profile picture of Bill Mattila

    Bill Mattila posted an update 3 years, 11 months ago

    reply about the taking of OFEV Seems that it gets your gastric moving from a hr after until next dose. I try to take it on a full meal. Not always the
    situation you will be in. Good luck everyone.

  • Profile picture of Bill Mattila

    Bill Mattila posted an update 3 years, 11 months ago

    My taking Ofev is getting interesting. I now have more side effects. Take Ofev with your meal. That’s my plan lots of food take at same time everyday. Gives me sore butt too. Sorry about that.the terminology.

    • Profile picture of Mark Koziol
      Mark Koziol replied 3 years, 11 months ago

      Hello Bill, during my experience with OFEV I found it beneficial if I ate a banana before taking my medicine. I also ate a protein when taking my meds. I had to lose weight so I ate 5-6 times a day. I considered these meals my mini-meals. I had a gastric episode probably once a month. I did take my meds at the same time every day as you have…[Read more]

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