“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

“Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant

“Short of Breath? See your Doctor,” said the poster in the pharmacy. I’d been short of breath for some time, but put it down to an unhealthy lifestyle, being 58 and being overweight. The poster encouraged me to visit my doctor, which I did. He sent me for a chest X-ray and I could tell… Continue reading “Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant

Living with Idiopathic Pulmonary Fibrosis

What is idiopathic pulmonary fibrosis (IPF)? How many people does it affect? Do we know what the cause is? Can it be treated? If you don’t know the answers, you’re not alone. IPF is considered a rare disease by the National Institutes of Health and much of the research surrounding it is not definitive. So… Continue reading Living with Idiopathic Pulmonary Fibrosis

Give the Gift of Life on National Donor Day

Valentine’s Day is all about showing your love for your significant other.  But what if it were also about showing your love for perfect strangers? February 14th is National Donor Day, a day of awareness about how registering to be an organ donor can give someone a second chance at life.  Does your driver’s license… Continue reading Give the Gift of Life on National Donor Day

Preparing for Life After an Organ Transplant

Last week, we shared our interview with a liver transplant recipient who is living out her dreams post-transplant.  Today we’d like to add the insights of 32 organ transplant recipients who took part in an online discussion hosted by PatientsLikeMe.  Split equally in gender with ages ranging from 25 to 60 years old, our discussion… Continue reading Preparing for Life After an Organ Transplant

Have a Heart Today. Become a Donor.

February 14th is Valentine’s Day.  But it’s also National Donor Day. Started in 1998 by the Saturn Corporation and United Auto Workers in cooperation with the US Department of Health and Human Services (HHS), this annual event is focused on five points of life:  organs, tissues, marrow, platelets and blood.  All of these can be… Continue reading Have a Heart Today. Become a Donor.

Life with Cystic Fibrosis: Three Teenagers’ Perspectives

Unlike most of the health conditions we cover at PatientsLikeMe, cystic fibrosis is one of the few communities where the majority of our members are under the age of 29.  In fact, approximately 60% of our 440 cystic fibrosis patients report that they either fall in the 0-19 or 20-29 age brackets. What exactly is… Continue reading Life with Cystic Fibrosis: Three Teenagers’ Perspectives

PatientsLikeMe and Novartis Unite to Launch Community for Organ Transplant Recipients

Recognized by Fast Company as two of the 50 Most Innovative Companies in the World, PatientsLikeMe and Novartis have united to launch a new community for organ transplant recipients (including kidney, lung, heart and liver).  In the news release announcement, PatientsLikeMe President Ben Heywood and Novartis CEO Joe Jimenez discuss what impact this community could… Continue reading PatientsLikeMe and Novartis Unite to Launch Community for Organ Transplant Recipients