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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, 15 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]
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Charlene Marshall started the topic How Can Others Support Those Living with PF? in the forum Living with Pulmonary Fibrosis: 50+ 3 days, 15 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]
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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]
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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]
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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]
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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]
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David Ota replied to the topic Saw PF on xray now what in the forum Diagnosis Information and General Questions 1 month, 2 weeks ago
Chris, your diet and exercise comment made me laugh. Thanks! It really is a crappy disease. If you have not had a ‘formal’ diagnosis of PF you may want to grab some Term Life Insurance while you’re still insurable.
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Charlene Marshall replied to the topic Personal emails: not on the forums please. in the forum Using Our Forums 1 month, 2 weeks 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. -
Charlene Marshall started the topic Traditions & the Holiday Season in the forum Pre/Post Lung Transplant 1 month, 3 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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Charlene Marshall started the topic Personal emails: not on the forums please. in the forum Using Our Forums 2 months 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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Charlene Marshall started the topic Protecting Your Lungs From Cold Temperatures in the forum Canadians Living with Pulmonary Fibrosis 2 months, 1 week ago
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]
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Charlene Marshall started the topic C-PET Scan in the forum Diagnosis Information and General Questions 2 months, 2 weeks ago
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]
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Charlene Marshall started the topic Mindfulness & IPF in the forum Living with Pulmonary Fibrosis: 50+ 3 months, 1 week ago
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]
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Wendy Dirks replied to the topic Grief Support Ideas in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months, 1 week ago
There is a grief support counsellor at the hospice where I receive palliative care. She helped me immensely in dealing with the death of my son, my only child, at age 43. Afterward, I started CBT with her for managing my own grief as I have moved closer to my own death. The one thing she said to me about my own death was asking what it was about…[Read more]
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Charlene Marshall started the topic Helping Others’ Understand Organ Donation in the forum Pre/Post Lung Transplant 3 months, 2 weeks ago
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] -
David Ota replied to the topic My Journey After Lung Transplant in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 3 months, 2 weeks ago
Prabir
Double Lung Transplant at Dignity/St Joes in Phoenix. May, 2016, I was 55 years old at the time.
Have you received the Evusheld injections for the immunocompromised?
“AstraZeneca’s Evusheld, the only monoclonal antibody authorized as a periodic injection to prevent infection, has become an essential shot for roughly 17,000 Americans wi…[Read more]
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David Ota replied to the topic My Journey After Lung Transplant in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 3 months, 2 weeks ago
Prabir
From Phoenix, the 1st flight was to Florida, around 4 hours in the air. The next day Orlando to Aruba about 3 hours.
I have not not needed oxygen since the transplant.
Your flights are long flights!
I was diagnosed to be in rejection at my 4th anniversary clinic visit.
For me, there were no signs of ‘rejection’. The diagnosis was bas…[Read more]
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David Ota replied to the topic My Journey After Lung Transplant in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 3 months, 2 weeks ago
Prabir
Congratulations on dodging Covid for 2 1/2 years. I’m 6+ years post transplant and am in chronic rejection. I’m guessing a transcontinental trip means flying. My wife and I just got back from Aruba, we shut down any flying trips through the pandemic and finally got on a plane in July.
Tip 1. Bring enough medicine for twice as long as yo…[Read more]
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Charlene Marshall started the topic Speed Bumps on the Post-Transplant Journey in the forum Pre/Post Lung Transplant 3 months, 3 weeks ago
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]
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Charlene Marshall replied to the topic Medications Making Me Feel Worse – Is It Possible? in the forum Diagnosis Information and General Questions 4 months ago
Hi Charles,
There’s been a lot of conversation about Zinc on these forums. If you use the search feature by going to the top right-hand side of the page and start typing in Zinc slowly, all the conversation threads should come up. I don’t have any personal experience to share with you, but I know a lot of people have started or continued taking…[Read more]
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