@abyron888
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Nina Merendino replied to the topic Life span in the forum Diagnosis Information and General Questions 2 months, 2 weeks ago
I was diagnosed 4 years ago due to Md thinking I had pneumonia . One doctor gave me 5 years. It’s not true cuz I have no symptoms.!!! Changed doctors and still no symptoms. Open up to self healing! Meditate daily. I am having more blowing tests but after changing pulmonologist he said there is no way I can tell how long! Don’t believe the crap and…[Read more]
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Nina Merendino posted an update 2 months, 2 weeks ago
I just read the girls experience with Hataki? Where can I get it and Joe and daily? I was diagnosed 4 years ago without any symptoms. My books O2 is usually at 98. My blowing skills have improved once I switched MDs. The first one said I had about 4-5 years to live. Well that sent me into a wild ride of getting my things in order. Telling my sons.…[Read more]
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Wendy Dirks replied to the topic Welcome 2023! in the forum Living with Pulmonary Fibrosis: 50+ 2 months, 3 weeks ago
My favourite moments this year are hard to define as almost the entire year was spent in hospital or hospice care. I guess I have to say the last two months when I was at home and refused to go back into hospital. I’m now in hospice care and being treated to make me comfortable as I am now dying and the consultant thinks that time is short. I w…[Read more]
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Charlene Marshall started the topic Welcome 2023! in the forum Living with Pulmonary Fibrosis: 50+ 2 months, 3 weeks ago
Somehow another year has come and gone, and I remain as grateful as ever for the members on this forum. For another year, you have selflessly shared your personal experiences with others, inevitably making their journey a little easier. You have helped each other advocate for yourselves, laugh and virtually wiped away tears while navigating…[Read more]
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Steve Dragoo replied to the topic just want to share some of my experience in the forum Canadians Living with Pulmonary Fibrosis 2 months, 3 weeks ago
Hi Jaime,
I had phlegm but nearly stopped it by using Serrapeptase. Started it over 4 years ago and take 720,000 SU nightly on an EMPTY stomach and NO other meds for 3 hours on either side. You can start at 480,000 SU.
Serrapeptase sees pills as dead protein, it dissolves them faster. Did that once with niacin – wish I h…[Read more]
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Nina Merendino replied to the topic Hiatus Hernia in the forum Diagnosis Information and General Questions 2 months, 3 weeks ago
I was diagnosed with interstitial lung disease in 2018 and they did a endoscopy and found out that I had acid reflux as well. I have I have been put on oprazalam and doing fine. I have had acid reflux many times over my 69 years. Don’t think it caused the fibrosis.
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Steve Dragoo replied to the topic New Treatment in Phase 3 looks like it might be promising in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months ago
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Charlene Marshall started the topic Medication Storage & Transport in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months ago
Hello forum members,
I hope you’re all gearing up for the holiday season.Since being diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016, I’ve been on many different medications. Sometimes the dosage of one drug changes, other times I’m taken off a medication and put on another and lately, it feels like I just keep getting…[Read more]
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Steve Dragoo replied to the topic Personal emails: not on the forums please. in the forum Using Our Forums 3 months ago
I think of you often too – daily…
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Steve Dragoo replied to the topic Personal emails: not on the forums please. in the forum Using Our Forums 3 months ago
Hi Charlene,
I am doing as good as can be expected after 6+ years with our shared disease but my spirits exceed the physical dilemma that is slowly working its way into our daily lives.
We will continue to walk in faith – not so much for physical healing although that would be an incredible gift and miracle – but more for…[Read more]
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Charlene Marshall replied to the topic Personal emails: not on the forums please. in the forum Using Our Forums 3 months ago
Hi @steve-dragoo ,
Not a problem at all, we just wanted to post that reminder to ensure emails aren’t being left publicly, most importantly to protect our members’ privacy. In a PM/DM is totally fine!
Hope you’re doing as well as possible! think of you often.
Char. -
Dave Sabatelli replied to the topic Can’t do PFT in the forum Diagnosis Information and General Questions 3 months, 1 week ago
A CAT scan will show the level of fibrosis.
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Charlene Marshall started the topic Traditions & the Holiday Season in the forum Pre/Post Lung Transplant 3 months, 2 weeks ago
Whether or not you celebrate Christmas, the holiday season can bring mixed emotions for many. Depending on family relationships, sometimes it’s stressful to see non-immediate family members or the chaos of the holidays can leave folks feeling exhausted. This is especially true for those of us living with IPF!
On the flip side, the holiday…[Read more]
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Steve Dragoo replied to the topic Personal emails: not on the forums please. in the forum Using Our Forums 3 months, 2 weeks ago
Hi Charlene,
If I did that – apologies. I assume in a PM that is fine.
Stay well…
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Steve Dragoo replied to the topic Personal emails: not on the forums please. in the forum Using Our Forums 3 months, 2 weeks ago
Hi Charlene,
If I did that – apologies. I assume in a PM that is fine.
Stay well…
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Charlene Marshall started the topic Personal emails: not on the forums please. in the forum Using Our Forums 3 months, 3 weeks ago
Hi Everyone,
Thank you so much for your contributions to this site. It is so nice to see patients and caregivers interacting with one another, sharing experiences and knowledge that only those of us in the PF sphere can know; its truly wonderful to witness.
Just a reminder: it is against the forum guidelines to leave your personal email…[Read more]
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Steve Dragoo replied to the topic Serrapeptase and nattokinase and Ofev in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months, 3 weeks ago
Sorry Amit I just saw your question. This new format is not working well for us, I think.
Yes I take the Serra all at once – pure. It is generally considered safe up to 1,000,000 SU’s daily but much larger doses have been given for short term use.
Stay well…
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Steve Dragoo posted an update 3 months, 3 weeks ago
@artlamb PM generally means private message.
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Steve Dragoo replied to the topic Serrapeptase and nattokinase and Ofev in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months, 3 weeks ago
Hi Amit,
A short note about Serrapeptase – NEVER EVER take it with other pills as it will dissolve them fast. Did that with Niacin once – wish I hadn’t!
I have used Serra successfully for 4 years at 720,000 SU’s daily in the evening before bed no other pills empty stomach.
Natto is a blood cleaner and used it for several years…[Read more]
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Steve Dragoo posted an update 3 months, 3 weeks ago
@wranger Wesley, I received no Dropbox link. Thanks – Steve
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