Idiopathic pulmonary fibrosis

“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 her learn to better manage her condition and how she found support with the IPF community online.   “You get out of life what you make it. I had a lot of hardships but I still bounce back.”   A typical day for Anna involves rising early, taking her meds and then meditating. “I play my singing Tibetan bowl and meditate for a while and thank the Lord for another day.” She also loves to crochet: “I do a lot of it and you can never have enough yarn. Needless to say, my house has skeins of yarn lying all over the place.” Life hacks for managing her everyday When it comes to managing day-to-day tasks, she makes sure to be smart about how she spends her energy by dividing her cleaning based on the day of the week and on how she’s feeling. “I …

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Life-changing second opinion stories: “I decided to get a second and third opinion…”

Stories showing the importance of second opinions have been popping up in the media and on PatientsLikeMe. Check out the recent news headlines, hear a remarkable story of a PatientsLikeMe member who received a life-saving lung transplant after getting a second (and third) opinion, and share your own experience of piecing together your health puzzle. Extraordinary second opinion stories The Washington Post recently featured two powerful pieces related to second opinions — one about a man who got a second opinion at his mother’s urging (and received life-saving treatment for metastatic testicular cancer), and another about a woman who did not seek one and underwent unnecessary major surgery (removing her breasts and uterus). “I am damaged for the rest of my life,” the woman said. PatientsLikeMe member Theresa (Pipersun) recently shared her “whirlwind experience” and remarkable second opinion story in the forum. After two bouts of severe pneumonia earlier in 2017, a CT scan in June confirmed Theresa had a serious lung condition, idiopathic pulmonary fibrosis (IPF). While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected. “My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary …

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PF Awareness Month

September is Pulmonary Fibrosis Awareness Month, and in honor of that, we’re rounding up what members of the PatientsLikeMe community have shared about pulmonary fibrosis on our blog. First off, for those who don’t know – what is pulmonary fibrosis (PF)? It’s a chronic, progressive scarring or thickening of the lungs, which makes it difficult for oxygen to transfer from your lungs into your bloodstream. It may be caused by certain medications, environmental exposures or underlying diseases of the autoimmune system (such as rheumatoid arthritis, lupus or scleroderma). Idiopathic pulmonary fibrosis (IPF), the cause of which is still unknown, is the type of PF most people might’ve heard of, but there are many other forms of PF, such as sarcoidosis and cryptogenic organizing pneumonia. Now let’s take a look back at some blog posts about PF. In 2013, member Ian shared about his journey from having “stiff lungs” and getting diagnosed with IPF to undergoing a lung transplant. “I was bloody determined to have a transplant,” he said. Read more here. In 2014, member John_R discussed his adjustment to his “new normal” of living with IPF and using supplemental oxygen. “My oxygen use was quickly accepted at work,” he said. “There were a couple of double takes when people …

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Meeting PF patients where they are

Say hello to John (John_R), a father, grandfather and idiopathic pulmonary fibrosis (IPF) survivor. Sound familiar? Last year he shared his story about life after a double lung transplant and the importance of considering a lung transplant early. This year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences. “I am very passionate about honoring the precious gift provided by my donor family and in living a life worthy of their generosity.” John received a bilateral lung transplant on January 1st, 2015, and believes he’s alive today thanks to his donor family and care team at UT Southwestern in Dallas. Now, he’s committed to raising awareness for the needs of the pulmonary fibrosis community. Life after transplant John’s life before transplant included the use of supplemental oxygen 24 hours a day, and what he calls, “an eminent expiration date” in his near future. He couldn’t visit family in Colorado or the higher elevations of New Mexico due to the altitude, and every breath was a struggle. “The biggest thing about life after lung transplant is that I no longer have a firm expiration date, I can have hope. I can go to Colorado and …

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“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 but nothing that the transplant team hasn’t seen before, and [they] handle it immediately. It was scary for me but the team is great in communicating that these [post-transplant] issues happen to some and not to worry. I like that communication because it sets my mind at ease. How long had you been a candidate for a lung transplant?  I was evaluated at Brigham and Women’s Hospital (BWH) in January of 2014 and accepted into their transplant program. At the time, I was classified as too healthy to be listed, however I was being watched and met with them every four to six months. In October 2016, BWH suggested I be re-presented and get listed on UNOS (the United Network for Organ Sharing waiting list) for a transplant. After finishing some additional testing, I was listed in Boston Region 1 on December 16, 2016. I also …

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Meet Glenda from the PatientsLikeMe Team of Advisors

  Meet Glenda (gagafor2), a member of the 2016-2017 Team of Advisors. Glenda is a wife, mother and grandmother who finds great joy in making others happy. She’s also living with idiopathic pulmonary fibrosis (IPF). Recently, Glenda told us about coming to terms with the “unknown” in her future and coping with anxiety: “PatientsLikeMe became my lifeline to information and patients who knew what I wanted and needed to know.” Check out the rest of her story and learn how Glenda hopes to represent other members of the IPF community. What gives you the greatest joy and puts a smile on your face? I would have to say making others happy makes me smile. I love to give and do special things for others, it gives me great joy I get so excited when I can find that special gift or plan that special surprise for someone else. My family gives me the greatest joy of all. I have had a wild ride so far with my husband of 45 years and my children and grandchildren. We moved many times throughout the last forty years to different parts of the country, making so many incredible friends and have having such …

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PatientsLikeMe Welcomes Next Patient Team of Advisors

  CAMBRIDGE, Mass, November 14, 2016—PatientsLikeMe has named 11 members to its patients-only 2016–2017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners. “Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.” More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington. John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and …

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Patients as Partners: Member Laura on launching a PF support group

Over the past few months, the Team of Advisors has been sharing how they use the Partnership Principles in their personal health journeys. Laura, who’s living with IPF, recently sat down with us to talk about the New Britain PF Support Group she launched in Connecticut, and how important it is to have a community of people who know what you’re going through. Check out the Q&A below to see how she helps patients, caregivers, and their families understand that they’re not alone. Tell us a little about the New Britain PF Support Group — who’s involved and what’s the goal? The New Britain PF Support Group had the first meeting September 2015. The meeting is for the patient and caregiver, plus family and friends who may be interested in understanding what their loved one is going through. The goal is to provide information on PF/IPF. Knowledge can empower the patient and caregiver to work with their doctors and professional team. Most importantly, the support group lets people know they are not alone — we are all in this together and we understand. How did you come up with the idea of creating the group? There was only one support …

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“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 connect with her recently, and here’s what we learned … 1. Tell us about your life. What are your hobbies and interests? How do you most enjoy spending your time? I was born 71 years ago in a town named Escondido, in Ca. My mother had been a Wave in the Navy in Washington, D.C. where she met my father, a career Marine. It was war time and he was transferred to Camp Pendleton Marine base in Oceanside, where he was immediately sent overseas to fight. I was an only child with no family living close by so my Mother and I were very close. My father went up through the ranks and was up for Brigadier General, and was honored to take over training the 7th Marines at Camp Pendleton in 1962. Two weeks later he died of a heart attack and my mother …

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Your data doing good: IPF treatment experiences

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need. During #24DaysofGiving, we’re highlighting some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing. Every year, the Food and Drug Administration (FDA) approves new medications that can help people living with life-changing conditions. But with new treatments come new questions. And that’s exactly what happened at the end of 2014 for people living with idiopathic pulmonary fibrosis (IPF). IPF is a rare condition that causes scarring in deep lung tissue over time and has no cause or cure, and before October 2014 no available treatment. That’s when two FDA-approved medications for the condition became available, simultaneously. They had the potential to make a difference in the lives of IPF patients, but how could they learn which medication might be right for them? If they started taking one …

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