“You get out of life what you make it”: Member Anna shares her experience living with IPF

Meet PatientsLikeMe member Anna, who’s been living with IPF since 2011. Below, see what she shared with us about her diagnosis, how she fills her days with the things she loves, and how she’s learned to tackle daily tasks like shopping and cleaning while living with a chronic condition. She also touched on how PatientsLikeMe helped… Continue reading “You get out of life what you make it”: Member Anna shares her experience living with IPF

“I thank my donor every day for this gift”: Member Laura shares her lung transplant story

Meet LaurCT, an active 2015-2016 Team of Advisors alum living with idiopathic pulmonary fibrosis (IPF). She underwent a left lung transplant at Brigham and Women’s Hospital in Boston in January and recently shared her experience with us. How are you feeling these days?  I am feeling great. I’ve had a couple bumps in the road… Continue reading “I thank my donor every day for this gift”: Member Laura shares her lung transplant story

“These lungs are a precious gift” — Member John shares his new “new normal” for National Donate Life Month

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

“You may not like it, but make the MOST of it.” – An interview with IPF member Nikki

When Nikki (Nimiha) was diagnosed with IPF in 2010, she was already a survivor of both ovarian cancer and a heart attack. Staying positive and up-to-date on new information is now this retired RN’s best defense – and she’s been sharing it with her IPF family on PatientsLikeMe since March. We had the chance to… Continue reading “You may not like it, but make the MOST of it.” – An interview with IPF member Nikki

Still leading a full life – An interview with IPF member David

David’s (darbygreenboy) username comes from the village in the English countryside where he lives and is still an active member of the community. We caught up with this grandfather of 10 – a former business owner, mayor and leader of the town council to talk about living with IPF. Here’s what we learned … Tell… Continue reading Still leading a full life – An interview with IPF member David

“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

“No oxygen.” PatientsLikeMe member Lori shares about life after surviving idiopathic pulmonary fibrosis

It’s crazy to think how fast things can happen. The last time we talked with Lori, she was telling us about life on the lung transplant list and playing what she called “the waiting waltz.” And now – everything has changed. Just two weeks after we posted her third interview on the PatientsLikeMe blog in… Continue reading “No oxygen.” PatientsLikeMe member Lori shares about life after surviving idiopathic pulmonary fibrosis

“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

“Sleep has become a process.” Checking in with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

Some of you probably remember seeing her on the PatientsLikeMe blog before. Lori is living with idiopathic pulmonary fibrosis, and when we first chatted with her last July, she shared her experiences with blogging, the difficulty in finding the right diagnosis and how connecting with others has positively impacted her life. For our “Are You… Continue reading “Sleep has become a process.” Checking in with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

“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