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Charlene Marshall started the topic The Importance of Patient-Centered Care in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 day, 14 hours ago

As patients living with chronic and progressive diseases like idiopathic pulmonary fibrosis (IPF), it is inevitable that we will experience hospitalization at some point. Whether that be proactively ahead of a test or procedure, or reactively due to an exacerbation, illness, or disease progression; it is likely something you have or will…[Read more]
Steve Dragoo and Jeff Molloy are now friends 2 days, 15 hours ago
Charlene Marshall started the topic How Can Others Support Those Living with PF? in the forum Living with Pulmonary Fibrosis: 50+ 3 days, 14 hours ago

As my disease progresses and my physical abilities lessen, I am often asked how others can support me. This is especially true in my workplace and oftentimes, I don’t know what to tell them.

Sadly, idiopathic pulmonary fibrosis (IPF) is mostly an invisible illness, with the exception of supplemental oxygen use if patients have progressed to…[Read more]
Steve Dragoo replied to the topic Who Has Inspired You? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 2 days ago

@charlene-marshall

Hello Friend,

I think of you every day and know winter is a struggle – for me, it is usually February as I get cabin fever and want to be outside even sleeping in the snow as I did when younger. On the other hand, every time I show my wife a picture of some beautiful snow-covered bucolic landscape her comment is, ”I will…[Read more]
Charlene Marshall started the topic Who Has Inspired You? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 3 days ago

Like Christie has shared, January is a difficult month for me every year. Here in Canada, January is a very long, cold, and dreary month and this year there is no shortage of grey days; the sun hasn’t been out for a full day since before Christmas! While I’m not officially diagnosed with seasonal affective disorder (SAD), I really struggle…[Read more]
Steve Dragoo posted an update 1 week, 3 days ago

@lizmanualosteopath
Hi Liz.

Where did you get your Class 4 and how do you use it?

Thanks,
Steve
Steve Dragoo replied to the topic Larry Runyon in the forum In Loving Memory 1 week, 4 days ago

Samuel,

You are not alone in this journey. Be blessed and reassured you will meet again.

Stay well…
Steve
Nina Merendino replied to the topic Has anyone seen the film "More Than Ever" about an IPF patient? in the forum Diagnosis Information and General Questions 1 week, 4 days ago

No
Nina Merendino replied to the topic Life span in the forum Diagnosis Information and General Questions 1 week, 4 days ago

I may have said this before but I was diagnosed in 2018. It is now 2023 and still no cough or SOB. I researched myself and take zinc and a chinese herb Teavigo on Amazon, red light therapy but don’t have the IV. I refinanced my house to put in a swim spa because I have another disease that currently is worse, called ankylosis spondylitis where my…[Read more]
Steve Dragoo replied to the topic Metformin Useage as Treatment for IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 2 days ago

@michael-lamkin

Hi Michael,

A number of pharmacies will provide metformin at a love cost probably about the same as the co-pay but I do not know if they require a prescription.

I have used metformin for 12 years and can’t tell if it has helped my IPF or not. I do use a bucket of supplements daily however.

Stay well…
Steve
Nina Merendino posted an update 1 month ago

Nothing ! Seeing pulmonologist for testing next week.
Nina Merendino replied to the topic Life span in the forum Diagnosis Information and General Questions 1 month 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]
Nina Merendino posted an update 1 month 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]
Wendy Dirks replied to the topic Welcome 2023! in the forum Living with Pulmonary Fibrosis: 50+ 1 month 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]
Charlene Marshall started the topic Welcome 2023! in the forum Living with Pulmonary Fibrosis: 50+ 1 month 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]
Steve Dragoo replied to the topic just want to share some of my experience in the forum Canadians Living with Pulmonary Fibrosis 1 month, 1 week ago

@jaimeluciano

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]
Nina Merendino replied to the topic Hiatus Hernia in the forum Diagnosis Information and General Questions 1 month, 1 week 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.
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 1 month, 2 weeks ago

@chris-1964

Thanks Chris
Charlene Marshall started the topic Medication Storage & Transport in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 2 weeks 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]
Steve Dragoo replied to the topic Personal emails: not on the forums please. in the forum Using Our Forums 1 month, 2 weeks ago

@charlene-marshall

I think of you often too – daily…
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