April is National Donate Life Month, an annual awareness effort to encourage Americans to register as organ, eye and tissue donors — and to celebrate those who have donated and saved lives. We recently caught up with IPF member John (John_R), who we interviewed back in 2014. At that time, John described what his “new… Continue reading “These lungs are a precious gift” — Member John shares his new “new normal” for National Donate Life Month
Category: Pulmonary fibrosis
“Don’t go it alone” – IPF member Christine shares about her health journey
Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below,… Continue reading “Don’t go it alone” – IPF member Christine shares about her health journey
“Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF
PatientsLikeMe member Barbara (CatLady51) recently shared about her journey with idiopathic pulmonary fibrosis (IPF) in an interview with us, and she spoke about everything from the importance of taking ownership of managing her condition to how she hopes to “turn on the light bulb” by donating her personal health data. Read her full interview about… Continue reading “Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF
“Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori
This is Lori’s third interview on the PatientsLikeMe blog! She’s been sharing her journey with idiopathic pulmonary fibrosis (a rare lung disease) with all of our followers here, along with her real-world health experiences on her PatientsLikeMe profile. Since the last time we caught up with her, Lori has lost 70 lbs., has made… Continue reading “Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori
“Life is good” – PatientsLikeMe community member John_R speaks about his new life after being diagnosed with pulmonary fibrosis
Several people in the PatientsLikeMe community use the phrase “new normal” after being diagnosed with pulmonary fibrosis (PF), and PF member John_R doesn’t’ think his new normal is all bad. This month, he chatted with us about getting diagnosed with PF, bringing oxygen to the workplace, and how living with his Sweetie keeps him focused… Continue reading “Life is good” – PatientsLikeMe community member John_R speaks about his new life after being diagnosed with pulmonary fibrosis
“Retooling my attitude.” An interview with idiopathic pulmonary fibrosis patient & PatientsLikeMe member Lori
As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Lori, an idiopathic pulmonary fibrosis (IPF) patient who started blogging about her journey back in October 2011. Her blog is… Continue reading “Retooling my attitude.” An interview with idiopathic pulmonary fibrosis patient & PatientsLikeMe member Lori
Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”
Over the last few months, Keith and Sarah have been sharing their journey with us. In this final interview of our three-part series, they talk about how he got on a transplant list and their “phones at the dinner table” policy. If you missed our first two interviews with Keith and Sarah, you can find… Continue reading Keith & Sarah’s personal journey with rare lung disease. Part III, “Bonus round”
Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”
In this second interview of our three-part series, Keith and Sarah talk about how their daily lives changed and the importance of connecting with others. If you missed our first interview with Keith and Sarah, you can find it here. What were the most noticeable changes you had to make in your daily life? [Keith]… Continue reading Keith & Sarah’s personal journey with rare lung disease. Part II, “Lungies”
“Make memories starting now!” An interview about idiopathic pulmonary fibrosis with Kim Durand
Many of you have seen our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. Well for the first time on our blog, we’re talking with a “Facebooker.” Kim started her Facebook page, Pulmonary Fibrosis Awareness, after her… Continue reading “Make memories starting now!” An interview about idiopathic pulmonary fibrosis with Kim Durand
Keith & Sarah’s personal journey with rare lung disease. Part I, “Fine”
As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Sarah and Keith. Sarah started writing about her fiancé Keith’s journey with a rare lung disease back in July… Continue reading Keith & Sarah’s personal journey with rare lung disease. Part I, “Fine”