Chuck Harrison
Forum Replies Created
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I always find myself apologizing to others for me requesting some help .the guilt I feel for getting ipf is at times overwhelming I know is not my fault but for some reason I can’t stop apologizing . I hear, no problem , anytime you need anything just say the word , I’m not wired like that ! I try to do as much as I can , but for some reason it’s never enough , my wife is so understanding of this , she tries to comfort and says there is no shame in asking for help , well how I was brought up there is ! I just can’t reconcile this part of my life . And when I’m asked ” how are you doing ” I always say ” not bad , and you ? ” I just don’t want to bother other people with my ipf ,,I feel they have their own problems they don’t need to hear mine ! I hope and I feel you do understand .
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My experience with ofev turned out not only cramps but with some accidents . I was taking 150 a day x 2 300 per day . I ended up in the er because my pc looked at me and said I had to go . With all the diarrhea mutable times through out the day and night I was losing all sorts of minerals and such even with glucerna and gator I was losing fast. In the er I was giving fluids x2 bags , my pulse ox when I got ther was 78 , and my tact was 138 steady , I truly felt like I was on my way out , but they brought me around and the didn’t admit me .
The next day my wife called the ofev rep , great guy named John , and he said there would be no problem on taking a 2 week vacation from ofev , in that time he got together with my pulmonologist and had the ofev dropped down to 100 x 2 . I have been doing that for at least six months and just have had one occasion. But the rep and my pulmonologist had no problem with a two vacation from ofev .
Hope this helps someone ! It’s such a terrible disease ! Hope all have good days out there . -
My name is Chuck , 66 yrs old , diagnosed 2 yrs ago April 2016 , live in Conewango Valley New York , no were we live there is no support group , you guys are it . Ofev 100 * two a day , the 150s almost killed me lol, anyways that me . Howdy
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4:38am awake coughing madly m, this one of the things that anoy me , it bad enough during the day , but sleep interrupted I can’t afford , before I did this I would read and apologize to my wife for waking her . But now I can rant , I’ve tried many things to at least ease the cough Ricola will sometimes do that , but of late I have found anise hard candy does a much better job . I’m on so many meda now I am far from wanting anymore so over the counter I look . Any other I deals out there ? Oh one more thing before I shut down , please , please , have a good day , I know how hard it can be , but I wish you the best day that you can have .
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There isn’t a day that goes by that I remember I could this or that ! Mentally I feel I’m in a good place . I am a 66 yr old male had to retire in 2010 because I just could not do my job anymore . Head grounds keeper at a big hospital in western my . Retired early 58 yrs old . 2012 February triple bypass , I’m diabetic take go care of that. So after the bypass I thought I was doing ok , up on the treadmill , gardening ( love it ) but kept running out of breath . So it just kept getting worse went back to my cardiologist she said I needed a stent so that was done no really big change in symptoms ! I played at this time on the church baseball, basketball volleyball you get the idea . Come 2016 April 8th my pc sent me to get a ct, one weak later I find I have ipf ! What the heck is that ? Research plus a wife who is an Rn we found out what it was . Very little explanation from my pc . So I went to a suggested pulmonary doctor and in reality all he wanted to do is sell me a mask .! Found my own pulmonologist and I found a great Doctor . I know come on Chuck get to the point ! At this time I am on 4 liters of 02 24/7 ipf has racked my physical strength I went from 210 lbs in now 172 lbs weak as a kitten have trouble just getting out of bed can not do many , many things I used to do , log splitting and such . Mentally I get depressed I have Ned’s for that ( oh boy ) so I fall back on my faith ( Christian ) and it helps , I take ofev 200 x 2 just love the side effects , I do get around , not on hot and humid days though , some of the conversations I have border on madness ( I know have asthma , or allergies I don’t argue because for them those are big deals right ? And there are plenty of times I don’t make it to social events . Charlene the list goes on , the pain increases and I deal with it and them . But when you come right down to it I’m Chuck I’m a happy man
God Bless -
I wear mine curve side down , but when I wake up in the morning it’s most likely in my ear !
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Yes , I take ofev . Started at 150 twice daily , it was very harsh on my bowels , now I take 100 twice daily
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I find , we’ll let me start by saying hello , I’m chuck
When first told of my ipf I was 216 lbs , I’m now 170 . On. Top of everything else I have heart disease ( open heart 2012 , also diabetic since 1999 .
I find gloucerna goes down well , it gives me what I need and my wife ( Rose ) makes sure I drink it , she’s a good care giver . But yes gloucerna helps a lot .