Marsha

It’s no secret that idiopathic pulmonary fibrosis (IPF) is an exhausting illness for patients, both mentally and physically. I am very protective of my Sundays lately and do not commit to doing anything except things around the house that will set me up for a successful work week.

I enjoy a hot cup of coffee out of a cup (vs. a travel mug…[Read more]

I really enjoy reading along to many of the conversation topics that are started on this site. I looked closely at the Prednisone and Vitamin D thread, as I am vitamin D deficient and take a prescription dose of 50,000 IUs once per week. Surprisingly, many of my fellow IPF patients I’ve spoken to have also discovered they are low on vitamin D.…[Read more]

To my fellow IPF patients: is weight something your doctor discusses with you at routine appointments?

I’ve heard from some patients it is, whereas other people say their doctors never bring it up. I wanted to write this forum post about how difficult it is to maintain a healthy weight while living with IPF. Whether the goal is to gain or lose…[Read more]

I enjoy celebrating Rare Disease Day (RDD) each year, which falls on the last day of every February. That means RDD is today! This day gives me a chance to help raise awareness for the rare disease that complicates my life; living with idiopathic pulmonary fibrosis (IPF) as a young adult is hard. It’s hard for all of us who deal with this…[Read more]

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]

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]

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]

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]

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]

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]

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]

Winter in Canada is known for its bitterly cold temperatures and significant snowfall amounts. While this is expected in December through March, it seems unseasonably early to be dealing with so much snow and cold in November. 

Each year I spend time thinking about this and am always curious: how do other IPF patients proactively protect…[Read more]

Like most of us, I ended up catching COVID-19 despite my best efforts to avoid it. I had COVID early on in the pandemic, and again in spring 2022 … and I’ve paid for it! 

My last pulmonary function test (PFT), which was shortly after COVID round 2, revealed a cumulative lung function loss of over 10%, which had my pulmonologist conc…[Read more]

Arguably, the hardest part of living with idiopathic pulmonary fibrosis (IPF) is the physical implications this disease imposes upon people living with it. Simple tasks become difficult due to shortness of breath, chronic cough, and debilitating fatigue. As a result, it’s really hard to feel rested while living with this disease.

I wrote a…[Read more]

As a patient living with idiopathic pulmonary fibrosis (IPF), a life-threatening and rare lung disease, I feel a sense of pressure to educate others on what it’s like to live with this disease.

Part of that education feels like it’s constantly helping others understand that transplant is not a cure for IPF. It certainly is a great a…[Read more]

We talk about living with idiopathic pulmonary fibrosis (IPF) on these forums a lot, and I am so grateful for the people willing to share their experiences, knowledge, and valuable insights on this difficult topic. As a co-moderator of these forums, I often hear feedback that patients learning from other patients on this site is deeply…[Read more]