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Starting Ofev
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Hi Thom:
They won’t allow that here in Canada. I think its a tremendously expensive waste of money. We are approved here for OFEV under a special government program so it doesn’t actually cost individuals anything. Nevertheless given the packaging of this product, unopened packages should be taken back by the Pharmacy and redistributed. But they are not allowed to do it.
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Yes so unfortunately isn’t it Bob? I wish the solution could be bring sealed/unopened packages to an appropriate location like pharmacy or doctor’s office to re-distribute it. Feels like such a waste of money! I’m hoping Thom can find a solution similar to this that is allowed in Connecticut.
Take care, and hope the weather where you are today is as beautiful as it is here.
Charlene. -
Charlene, the forum seems to be dying.
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Hi @bobb
Can I ask what you mean by this? The forum is not dying and it’s not going anywhere for others.
Char.
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Hmm, feel as though I missed something here, buy not sure what it was.
HELP! Somebody fill me in. The forum is dying? What’s that about!
I’ve had my hands full that tropical storm that I can neither spell or pronounce hit hard around here. No power, phone service. After 8 days it finally returned. No AC was the worst in 95⁰ weather.
Now for the good news. I had a pft last week that turned out wonderful. Oxygen level is up to +-94. The Ofev is doing what is supposed to. About 2 months ago I decided to eat less and move around as much as I can. The humidity is brutal for breathing, but I’m succeeding. I’ll start Pulmonary rehab next week. They closed due to the virus. I’ve lost about 35 lbs, and went from a 42 plus waist to a 38 minus. It’s made a big difference for the double hernia, 3 compressed disks.
I simply not eating when I’m full! When the gas gauge says full, I cant put anymore in my tank.
I’ll keep e everyone up to date.
Thom
PS… I cant remember your name. You live on Staten Island and worked at WTC.
How are you doing?
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Hi @thom
I will respond to the remainder of your post momentarily, but no, the forum is *NOT* dying. I’m not sure what Bob meant by that, I will follow up with him.
Char.
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Charlene: My sincere apologies for definitely using the wrong choice of words. My intent was only meant to refer to the low level of postings in recent months. I’m so sorry for giving you and others the wrong impression.
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@bobb – I think it’s just the silent majority… – Steve
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Hi @bobb ,
No problem at all — my worry was actually that you weren’t able to see the forums on your computer anymore, or that it appears things were being deleted from the site! I’m glad that isn’t the case and it sounds like you can still access/see everything on the forums platform, is that right? 🙂
Yes, things are a bit quieter, you’re right. I suspect it is due to the summer months and people wanting to be outside/away vs. at their computer. It will likely pick back up again, thanks so much for clarifying.
Cheers,
Char. -
Charlene: Whew! I thought I might get banned!! Thank you.
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Steve: They certainly have been silent but I still chose the wrong words.
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@bobb
No worries – we will get out and vote…
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Not too worry @bobb ! I’m just glad you can still access the site by the sounds of it. I would imagine contributions will pick up again as the summer months fade out 🙂
Char. -
Hi @thom
So nice to hear from you and glad you’re doing ok post tropical storm! 8 days without power in this heat would be have been soooo difficult. Has everything been fully restored now? I’m currently preparing my concentrator batteries as we have a storm headed our way this afternoon. I don’t imagine longterm power outages, but want to be prepared just in case.
Amazing news re: the weight loss and increased movement! It can be so tough for those of us with lung disease to do this, but so important. I’ve recently made a commitment to take a closer look at what I’m eating – typically, I eat clean and well but there is so much hidden sugar in things so I’m trying to be more aware of that – and increase my exercise a bit as well. I just feel better when I do, so keep up the good work. We can maybe motivate each other 🙂 Really glad your PFTs were positive as well, excellent update my friend!
Keep in touch.
Char. -
Hello Charlene. Dont laugh, I dont remember if I replied to you?
Thom
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Hi @thom : I’d never laugh, friends don’t do that 🙂
I don’t see a reply to my note above (on Aug 16th) but absolutely no rush. I hope you’re doing well!
Take care,
Char. -
If we dont laugh, we will cry. Laughter is the best medicine.
I figured out what I did. I do recall replying to you, it was quite long too. My typical getting carried away with writing. The problem is I didnt write the reply here. Rather I sent email, it probably bounced back and went to SPAM. I suppose its lost in space now and a few years from now it may bounce back and have scientists wondering if a strange alien is sending earth a message.
That’s it for now. I have to be out the door at 5 AM to bring my wife to a hospital to get her cataracts removed. Not much fun for either of us.
When I can gather together more words I’ll be sure to put them up here.
Thom
PS. One thing I recall in the lost reply. I’m wondering how the young lady from Staten Island (who’s name I forgot) is doing. If you read this I’d like to hear from you. I think you mentioned you had worked at the WTC.
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Hello my friend!
Not too worry at all — I’ll check my junkmail for your email in case it landed there, but hopefully not. Write when you can, but no rush. Goodluck to you and your wife tomorrow. I’ll be thinking of you!
Hmm, I wonder if the woman you’re referring to is @Lorraine … does this sound like you Lorraine? 🙂 I’ll give some thought to who else it might be if not, Thom.
Char.
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Yes I think its Lorraine! Thanks.
My wife now has both eyes done, one week apart. She can see just fine. She noticed wrinkles, brown spots, windows need washing. I’ll stop there!
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Hi Tina,
Thank you so much for writing to us and sharing your experience with Ofev! I have no doubt this will help others seeking information on this drug. I really hope you remain side effect-free as well once you’ve been on the drug for awhile, that would be great and I’m glad to hear so far it is tolerable for you.
I know others will appreciate hearing your experience as well.
Thank you!
Char. -
Hi Thom,
Oh so glad everything went well for your wife this morning, that’s great to hear! Hopefully Lorraine sees your note, and can update you on how she’s doing. I think she might have been who you were referring to 🙂
Take care,
Charlene. -
@Thom and @charlene-marshall!!!
Greetings both.
All things considered, I am doing well and hope the same is the case on your ends.
NYC flattened the COVID-19 curve and altho some things are still not opened, I have been spending a lot of time outside with friends and family. In fact, I just returned from Lake George where I went for a couple of days. Of course we are concerned about a possible second wave and winter isolation.
Thank you so much Thom for reaching out and thank you Charlene for your help.
Looking forward to hearing from the two of you again.
Best wishes!
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Hi @lorraine
Oh it is so nice to hear from you!!! I’ve been thinking of you lots, especially early in the pandemic when my beloved NYC (I love that city!) was hit hard by COVID. Glad you’re doing as well as possible, and enjoying some time outside and with friends and family – we still need a life to live outside of the virus, albeit as safe as possible, good for you! I bet Lake George was beautiful, it’s so refreshing to spend time outdoors!
Best wishes to you and thanks so much for this update and letting us know how you’re doing 🙂
Take care and keep in touch.Char.
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Hi Charlene:
Want to wish you a Merry Christmas and a happier new year for all of us. I’m scheduled for a PET Scan on Thursday, the result of an indecisive biopsy finding on a Node in my right lung. It is very small but we need to define it and get on with any necessary treatment. I feel fine and i’m very confident. Stay safe.
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I have had PF since 2016, I took prednisone for the first 2.5 years. After swapping doctors I was put on Esbriet , 4 pills a day. I had terrible headaches every time I took one. I ask the Doctors to change my meds over to OFEV. Been taking it about 6 months. I was doing pretty good until I got China Covid in October. Now I’m on Oxygen 24 /7 Feeling weak. My Doctor says it will take months to get over the China Covid if I ever do.
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