Paul Caden
Forum Replies Created
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my Google watch 2 records Oxygen well on a consistent basis as I also test on my finger and they are very close to one another
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i have had IPF for four and a half years now started taking Esbriet or pirfenidone immediately and my condition has been stable. And I would encourage you to get on these anti-fibrotics ASAP Good luck
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Alex i really understand where you are coming from as I got diagnosed with IFP 4 1/2 years ago but I got on the antifibrotics immediately and I am so glad I did as i am still in relatively good shape. can go up several flights of stairs by taking pauses or go for walks and nobody notices me breathing more heavily ex in cold weather which negatively affects the lungs. After years of infantile indoctrination into Christianity i finally became a free thinker in my 40s and no longer have to pray any of the gods to get better. I wish you the best and please get on the antifibrotics ASAP I find that pirfenidone has been a real lifesaver for me.
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hello George your story touches me a lot because, just like you, i am a free thinker, since about 20 years ago after years of deprogramming from my massive childhood Catholic indoctrination (almost became a priest) yikes. I’m prepared to return to Stardust and do not worship any of the 2,800 gods of history, nor worry abt being one of +90% of humanity who are supposed to burn in a giant furnace 24-7 for eternity for not worshipping the christian god. I hope I am courageous like you are when my IPF will get worse but as of now it is stable as I am on pirfenidone since the outset. Like you i have stayed close to our family, have been married 50 years do a wonderful loving wife. Thankfully I live in Canada where I can have medically assisted end of life treatment which I will be taking before i get into heavy duty suffering and no I’m not afraid to go having lived 74 wonderful years and counting. Stay brave and keep your mind occupied! Mine are sports & ancestry. I manage trees on both my wife and my side with a total of over 13,000 members going back to the 1400s. Our two children really appreciate this and have told me they will follow up on it as well as our sisters and brothers, they might even remember me lol. Take care buddy Wish you the best, stay strong…
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Firstly, I disagree with rik who says that mass are no good against viruses which is completely wrong. We always were at least NK94 and preferably N95 masks whenever in crowded areas, stores airports, especially airplanes. No colds whatsoever in 4 years almost and we avoid big parties. Our entourage all know that I have IPF and we trust them to not come if they have colds
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Hello Annette, I read most of the replies and I would just like to add that I have had IPF for two and a half years and have been taking Esbriet 3x/day for most of the time. I push myself to do cardiovascular sports as much as I can such as cross-country skiing cycling skating hiking etc All in an effort to keep my lungs working.So far I am not on oxygen but I do notice diminished endurance because of my lungs, but hopefully I can continue a couple of more years before getting on oxygen.Most of the time I try to forget I even have this horrendous sickness. Try and stay happy and healthy live your life and routinely follow your treatments without dwelling on your plight and park it in your mind until u need it 🙂
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I have been on esbriet for 2 years now and must admit that I take about 6 glasses of wine a week avg and have been lucky to have good liver tests. the one score which has being going down is DLCO. FVC etcetera have been fine do lots of sports and eat well hopefully I will stay healthy for several more years.
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I was diagnosed in August 2019 and have been taking Esbriet since Dec 2019. ”Still here and kicking, ” like Karen have less energy than before, but happy to have this forum to turn to for information and support, as well. Do lots of outdoor sports to keep the body working, helps</span></span>
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I am 70, have been on Esbriet since December 2019. Moderate but not overly bothersome side effects as mentioned above, thanks to evolution. My lung condition has deteriorated 10% in past yr but I still have 80% lung capacity and can still do Sports which I believe are important to help us breathe easier. When on Esbriet the sun is not your friend and doing exercise and forcing your lungs are a necessity. Stay courageous
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I am 70, have been on Esbriet since December 2019. Moderate but not overly bothersome side effects as mentioned above. My lung condition has deteriorated 10% in past yr but I still have 80% lung capacity and can still do Sports which I believe are important to help us breathe easier. When on Esbriet the sun is not your friend and doing exercise and forcing your lungs are a necessity. Stay courageous
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Have been taking Esbriet now for one year. Briefly, you must always take it with a meal or a big snack or the nausea headaches tiredness Etc increase. Luckily evolution permits me to have a 90% normal lifestyle so far. Just went cross-country skiing today for the first time this year and noticed I had to stop more frequently to catch my breath but at least I can still have fun. I have about 80% lung capacity which is moderate deterioration. Now at an ipf Clinic in Montreal and may start some drug experiment programs in the next few years. Charlene does a fantastic job here and thanks. Try to get your tech team to put latest posts at the start and not at the end it would really be beneficial to all
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I am very thankful to nature and evolution as my side effects resemble yours but to a much lesser extent. I always take a meal or a big snack beforehand and lots of water during the day but not at night as I would be waking up making two many trips to the washroom. Have you contacted the company nurses who do follow up I find they are very helpful and respond quickly good luck my friend
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I have been taking Esbriet for +6 mths since Dec 2020. An article in a prestigious French pharma journal influenced me not to try Ofev . I have had mild side effects since the 6 months always taking my full daily dose: insomnia, tummy upset, frequent bathroom visits and mood swings but well worth it perhaps as my HRCT scans, spirology tests, blood all ok with little deterioration in FVC etc The drug is working for me. I can run, cycle, play pickle ball and skate often in winter. I know Esbriet will not fix the scaring but I am able to maintain a healthy daily life and hope Covid research will find us better meds to at least stop the scarring. Rumours say that 2023 could see 1 or 2 breakout meds, got my hopes up!
I honestly believe by pushing our bodies to move esp outdoors, slows this sucker disease down!
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have been taking Esbriet for 2 months now, few mild side effects (grumbling tummy, tired) also take about 6 glasses wine/week and 2 mthly blood tests have been fine. Will know if working at my March 3rd RDV, fingers crossed!
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69 yrs young, in top shape until now, I will be starting Esbriet later this week and am quite nervous. Was diagnosed early Fall w IPF. Was going to take Ofev until I read this article (in French) from a VERY respected non pharma influenced, European website;
https://www.prescrire.org/Fr/202/1843/56008/0/PositionDetails.aspx
Basically it says; for 2 yrs now they say don’t take Ofev (no mention of Esbriet) as risks outweigh benefits.
Will post again after a couple weeks on meds, the brave folks (including the monitors) in this forum are encouraging. Merci to all.
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Stu is right , having latest replies at start would be better and save time scrolling down
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Your interesting post mirrors my thoughts ex as a Freethinker I do not depend on any of the many gods out there and have the courage to face my fate as a guy who raised a beautiful family, 50 yrs married and will return to nature in an ecological resting place. Lots of love to all…
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very encouraging post, as a freethinker I am practical facing adversity , have a great wife of 50 yrs etc helps me on.
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Brain imaging shows dopamine as a response to belief. The same dopamine regardless of what god is believed, the same chemical summoned by similar emotions. As far as the brain’s location of reason and logic, scientists correlate it with studies that have shown logic and reason decline corresponds with the rise of religious belief.
https://neurosciencenews.com/memory-meditation-23414/
neurosciencenews.com
Unleashing the Mind: The Neuroscience of Meditation and its Impact on Memory - Neuroscience News
Evidence suggests meditation can stimulate changes in the brain, or neuroplasticity, potentially fostering structural growth in the hippocampus, a region vital for memory.
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As a freethinker I realize that It is obvious there is a spirit in our brains, as there have been about 2800 man-made gods in history. So there is a place for meditation or “god” in our brains. This latter fact is proven by MRI scans of brains showing increased blood flow in frontal lobes and language areas while praying, yoga, meditation, exercise, etc. Clinical tests prove people living chaotic lives, addicted, lost $, loved ones, etc, turn to symbols, gods, soothsayers etc bec of problems in the TPJ region of the brain.
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hope you are still doing well Mark That was a very touching story you had. As for me, being a free thinker i depend on science to come to my aid and indeed pirfenidone has been relatively easy for me to take and has protected me very well for the past 4 and 1/2 years. At the age of 74 i am mentally ready to face a return to stardust and glad to have had a happy marriage for 50 years and two wonderful kids.
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Hi Pamela I am in the same position as you but my strong belief in evolution and the good of other people as proven in sociobiology helps me face life with this dreaded disease and not have to believe in one of the 2,800 man-made gods of History
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I agree with Charlene that cold air hurts the lungs when I hike, cross ctry ski , skate etc in cold weather.