@bill-mattila
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Bill Mattila and
A. Houghton are now friends 4 years ago
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Bill Mattila posted an update 4 years, 1 month ago
Running more out of breath. Going to doc. Next month.
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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.
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Bill Mattila and
Mark Koziol are now friends 4 years, 1 month ago
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Bill Mattila posted an update 4 years, 1 month 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. -
Bill Mattila posted an update 4 years, 1 month 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.
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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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Bill Mattila and
Laura Bush are now friends 4 years, 2 months ago
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Bill Mattila posted an update 4 years, 2 months ago
@charlene-marshall You found a new job in LIFE. LOL your hands are full. Did I tell you I have had this IPF for at least 15 yrs or more.
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I have found a new role since my diagnosis @bill-mattila, I agree. I never thought that my diagnosis of IPF nearly three years ago would open this door of opportunity for me, but I am so thankful it has as I’ve met so many wonderful people. I wish it wasn’t IPF that brings us all together, but I am so thankful for the members on this site, who…[Read more]
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Bill Mattila posted an update 4 years, 2 months ago
@charlene-marshall Not much to maintain. change filter in compressor. And keep vest clean. You have to adjust the straps on occastion. Doctor recommends vibrating twice a day . One hour total. It comes with pre programmed. Push button and shake it.
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Wow, really interesting Bill, thank you so much for sharing. I am curious if anyone else on the forums uses this method to help reduce the cough? Glad it is helping you and it isn’t too difficult to maintain. That is excellent! Your pulmonologist recommended it, or was it your GP, Bill? Thanks for answering my million questions 🙂
Enjoy your…[Read more]
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Bill Mattila posted an update 4 years, 2 months ago
@charlene-marshall Glad you are back. I love the forums. I have trouble getting oked for my OFEV. every three months same jump through the HOOPS.
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Bill Mattila posted an update 4 years, 2 months ago
@raymond-c-king yes Ray you probably can’t use the vest. Cause it does vibrate stomach too. It was prescribed by the doctor. Try the mucinex. Don’t take too much. I used to live on it before I was diagnosed with the IPF. I take the cheap stuff. Just Kirkland from Amazon 400mg quick release. One Ihave had the IPF for almost twenty yrs. two tak…[Read more]
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Hi, I cough up a lot of phlegm every day, and go through lots of Kleenex! Mucinex 12 hr release is what my doctor recommended and it seems to help a little. I have chronic sinusitis and bronchitis, so I’m also on Flonase, Singulair and saline rinses. My two cats like to sleep with me, so sometimes I take Benadryl before going to bed. I just…[Read more]
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Hi @bill-mattila,
Thank you for your reply. I appreciated your Vest and Mucinex comments.
WOW! You say you have had IPF for almost twenty years! I guess from what they say about IPF on the internet, you have really exceeded the life expectancy of three to five years by quite a bit. They do say that everyone if is different though! I was…[Read more]
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Bill Mattila and
Raymond C. King are now friends 4 years, 3 months ago
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Bill Mattila replied to the topic Dealing with Phlegm. in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 3 months ago
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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Bill Mattila posted an update 4 years, 3 months ago
Has anyone tried mucinex for your excess mucus?? It works for me and frees my breathing up.
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Bill Mattila replied to the topic Taking ofev a year! in the forum Ofev (Nintedanib) 4 years, 3 months ago
Do not take Ofev with stool softeners. HA HA.
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Bill Mattila started the topic Taking ofev a year! in the forum Ofev (Nintedanib) 4 years, 4 months ago
After a year of OFEV It has slowed the progress of the fiberosis a lot. It now costs 109 thousand a year. 9100.00 a month.
Thank GOD that my insurance co pay is only 42$ a month.
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Bill Mattila replied to the topic Indigestion & Acid Reflux in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 4 months ago
My acid reflux had a lot to do with my lung condition. Causing lots of inflamation.
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Bill Mattila posted an update 4 years, 4 months ago
Feeling good at times and so so at other times cant exersize at a hard level. Antibiotics are to be used only for infections.
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Bill Mattila posted an update 4 years, 5 months ago
Have been to doctor feeling so so at times and great other times. Asked doctor about antibiotics and he prescribed a regement of a week of 3 times a day for week. I was keeping for reserve for sinus or lung infections. Is this wise?
Also am excersizing at least bowling and walking. Could be worse. My saturation is good at rest and fair with the…[Read more]-
Hi @bill-mattila, thanks so much for your update and good questions!
When you mentioned you asked your doctor about antibiotics, did you do this as a proactive measure, just to have on hand in case you needed them, or were you feeling unwell at the time? I am a firm believer in not taking antibiotics unless I really need them, just because of what…[Read more]
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Bill Mattila posted an update 4 years, 6 months ago
Hi just a quick update about all. Yes it hasn’t progressed in a year. Yes short of breath on excersise. But breath deep and blow through mouth. It helps. Had a sinus infection, which doctor treated with 850mg amoxicillin twice a day for 7
Days. Made my lungs feel sooo much better. Anyone experiencing this would I would like to know. Thanks Bill -
Bill Mattila and
Charlene Marshall are now friends 4 years, 9 months ago
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