Carlo De Pellegrin
Forum Replies Created
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How do we find out more ?
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Good morning all,
I just wanted to let all know that I am scheduled for he covid booster shot tomorrow October 1. After trying my respirologist and MD i called York Region Health Care Unit and booked the appointment on the phone! You need to be persistant with the choices on their email system!!
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Allan, so sorry to hear this. I was hoping to try it!! I think I’ll wait until after my breathing tests in December and then re consider.
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Lnour, Ben, Pete, Jerry and William,
Thank you very much for this information. I live in Canada, in a suburb of Toronto. Is there anyone in Canada that will undertake this procedure, if any of you happen to live here and does anyone of you know the cost of the procedure(s)?
God bless you all, Carlo
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Good morning all,
I have been on 9 Esbriet since November 2020. I have most I’d the side effects mentioned in this discussion chain. I have no idea about the effects of reducing the dosage would be but can suggest three things that seem to have helped with the nausea and fatigue.
1. I take the meds religiously with every meal at least 4.5 hours apart and take them one at a time through out the meal. Eat slower then before and space out each pill.
2. stay outdoors as much as possible. The outdoor air seems to make such a difference to me.
3. stay active almost to the point of exhaustion. I play golf four times a week, I’ve become a lousy gardener, I’ve become an unhandy, handyman.
I still have the lousy Esbriet side effects but not nearly as bad as before.
GLTA
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Hey Steve,
Thank you for the reply. What are you taking it for? What does it do for you?
Thanks again, Carlo
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Hey Steve,
Thank you for the reply. What are you taking it for? What does it do for you?
Thanks again, Carlo
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Interesting article on MLB. Hope to see more comments. I have not tried it.
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condolences to family and friends.
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I have not, but would love to hear from anyone who has. Does it reduce the fibrosis or only slow down the progress as Esbriet is supposed to?
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Hi John, I wish I knew the answer to that. I was diagnosed about 8 months ago and have issues with shortness of breathe and nausea and fatigue. I did have carcinoid cancer in my upper right lung in 2012 so I have had CT scans at least annually since the. My recent diagnosis implied that the disease was there 5 or 6 years ago and has progressed to where the FEV1 is 65 to 70% of predicted. I can’t find the last test result right now. Have another breathing test this coming Friday and that will be an indicator of progression with the Esbriet I’ve been on since last September.
You’re right! it is in his hands, but I to would like to know
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Ben, good luck! Keep us all in the loop. I am considering more research on this Wei Labs stuff after CT scan and breathing test this month.
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oops!! where did my post go about WEI???
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Cheryl, I look forward to the comments from your pulmonologist.
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Augusta, Glad to hear your optimism! I have a similar history. I was diagnosed in September 2020 at which time it was noted that I was probably with IPF in 2015. There has been some progression in the disease in the 5 years but at a slow pace…good news to me. I have a CT scan and breathing tests coming up in April so we will see what effect Esbriet has had on the disease progression.
Live one day at a time as much as the good Lord gives you…..
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I just registered in York Region for my first shot March 28 and my second shot July 18. There was no definitive definition that would have given me any priority due to my IPF even in the second Phase, which was supposed to start in April. So the progress is going faster then expected, due either to overly pessimistic government projections or some older people not getting vaccinated, or both.
The issue as I see it now is the second shot which I’m being told should not be a four month delay. so we’ll see what happens.
The registration process was not perfect , but not terrible either.
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Thank you Christie! I have a CT scan and a breathing test in April, so we will see what we need or could do to get that up a bit. I need a challenge to stay motivated….
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Manzurul, that’s terrific! How do you get the inspiration to walk every single day? I am a 73 year old and was diagnosed in September 2020. I am struggling at 3 times a week. I walk at 115 steps per minute for 40 minutes at 2.8mph. So that would be 13,800 on my treadmill. Your total steps at my rate would be almost an hour and a half per day. Geez, if I could get to half rate??
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John, thank you very much for sharing. A ll best to you.
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John, might you share your experience with all on this site? i certainly would be interested as I’m sure many more would.
thank you so much….
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Hey Ben, I’m hesitant to try Wei because of the cost. What are the 19 veggie capsuls and the CL for two months?
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Charlene and anonymous, I used to be a one or two glass of red Italian wine almost every day. Since the IPF in September 2020 and the Esbriet I have reduced that to one 6 ounce glass 4 0r 5 times a week either red or white depending on the food. It is a little pleasure in life…..:):):)
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Hey Steve and Charlene, you both seem to very active and experienced in various matters relating to IPF. I am relatively new, being diagnosed September, 2020 and have been on Esbriet since then.
My original local respirologist retired in November last year and met a new one ( virtually) in March this year who thought that part of my lung issue was caused from smoking for 20 years that I quit over 0ver 30+ years ago. He prescribed Spiriva which I have been taking for three months with no ill effect but I don’t think any benefit. I will continue this for six months, assuming no ill effects, until I meet the local guy again. Any comments appreciated.
I also recently bought a couple of bottles of EGCg, because someone on this site or another, not sure where recommended it. AFTER buying it I did more research and saw a bunch of negative comments about the bad effects this stuff may have on one’s liver!!
Any comments appreciated.
Be well both of you, Carlo
PS Had my second Moderna vaccine today with no real side effects except very tired this afternoon. Better now…..
in addition
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I did not know that throat clearing is a sign of the progression of the disease??? Can someone comment on this for me please? I am clearing my throat much more in the couple of weeks but attributed it to spring seasonal allergies.