36 posts tagged “IPF”

Day-by-day, hand-in-hand

Posted February 28th, 2015 by


All around the world, everyone impacted by a rare disease is taking everything day-by-day. But they can take each day hand-in-hand with the help and support of others. Today, on Rare Disease Day (RDD), EURORDIS (Rare Diseases Europe) and its global partners are calling on everyone to lend a hand to anyone affected by a rare disease.

RDD’s international theme is “Living with a rare disease” because every patient’s story and needs are different, and only by sharing our experiences and raising awareness can we all hope to improve the lives of those living with a rare disease. It’s also about the million of parents, siblings, grandparents, aunts, uncles, cousins and friends that are impacted and who are living day-by-day, hand-in-hand with rare disease patients.1

Check out the official video below:

According to the Global Genes Project, there are 350 million people living with a rare disease around the globe. Just how many is that? If you gathered those people into one country, it would be the third most-populous country in the world. There are more than 7,000 identified rare diseases, from skin conditions to progressive neurological disorders, and more are being discovered every day.2 Here’s how you can get involved in spreading the word:

Rare diseases have a personal connection with PatientsLikeMe – our co-founders’ brother, Stephen, was diagnosed with ALS in 1998, and their family’s experiences with the condition led to the beginning of PatientsLikeMe. In 2012, we partnered with the Global Genes Project to create the RARE Open Registry Project to help those diagnosed find others like them in one of the over 400 rare disease communities on the site, and launched the first open registry for people with alkaptonuria (AKU) with the AKU Society in early 2013. We also accelerated our focus on enhancing the idiopathic pulmonary fibrosis (IPF) community through a collaboration with Boehringer Ingelheim. And now, the IPF community on PatientsLikeMe is the largest open registry with more than 3,700 members …and counting.

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1 http://www.rarediseaseday.org/article/theme-of-the-year-living-with-a-rare-disease

2 http://globalgenes.org/rare-diseases-facts-statistics/


PatientsLikeMe members to be highlighted in patient empowerment webinar

Posted January 13th, 2015 by

Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar.

On Tuesday, January 20th, at 2:00pm EST, the Partnership to Improve Patient Care (PIPC) is hosting their first “Patient Empowerment Webinar,” an online event focusing on the importance of patient engagement in their own healthcare and in health policy. Two PatientsLikeMe members, Ms. Laura Roix and Ms. Letitia Brown-James, will be participating in the discussion, and their experiences will be a part of the webinar. Here’s a little bit about Laura and Letitia, and more ways they’re already empowering others:

Laura is a member of the idiopathic pulmonary fibrosis (IPF) community on PatientsLikeMe, and she recently traveled to Maryland to speak at the Food and Drug Administration’s (FDA) Patient-Focused Drug Development Public Meeting on IPF.  Laura went with our very own Sally Okun RN, VP of Advocacy, Policy and Patient Safety and spoke about her journey and what it’s like to live with IPF. (She recapped her experiences in an October blog interview.) But that’s not all Laura shares – she’s a 3-star member on PatientsLikeMe, which means she is a super health data donor and always keeps her information up to date so others can learn from her.

Letitia has been living with epilepsy since she was little, but after connecting with the PatientsLikeMe epilepsy community she learned about new treatment options available to her, like surgery. She shared about her experiences in a video, and after receiving her surgery, she’s been living seizure-free for years. Letitia is also a part of the first-ever PatientsLikeMe Team of Advisors, a patient-only panel that gives feedback on research initiatives and creates new standards to help all researchers understand how to better engage patients.

The PIPC webinar is open to everyone, so if you’d like to join, please RSVP to the event coordinator via email. Hope to see you there!

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2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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“We are many” – PatientsLikeMe member Laura reports back on her experiences as a panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF

Posted October 17th, 2014 by

Just yesterday, you saw our very own Sally Okun RN, Vice President of Advocacy, Policy and Patient Safety, reported back about her experiences at the FDA Patient-Focused Drug Development Public Meeting on IPF. And today, we wanted to share the patient experience. For each public meeting, the FDA invites patients and caregivers to apply to be a panelist and share their real-world experiences with the disease – and Laura (LaurCT) was selected to attend! So, along with Sally, Laura headed to Silver Springs, Maryland and spoke to the FDA about what life if really like living with IPF. Check out how it all went below.

Laura was officially diagnosed with idiopathic pulmonary fibrosis (IPF) in May 2013, but was living with symptoms for years before that. She’s really an inspirational member of the community and always has her 3-stars (which means Laura is a super health data donor!).

Why did you want to be part of the FDA public meeting?

It was simple for me, I wanted to be part of the solution. When I was diagnosed with IPF I was quite the mess as many of us are. I’m a fighter. I just can’t sit back and do nothing. So, once I got over the total devastation I wanted to fight for me, for others and especially for my children. We all have our strengths and fundraising is not one of mine. I can stand up and tell how hard it is to live with this disease, not just medically, but the changes and decisions we all have to make that seem small to some but are huge to people who are living with this disease. It was important for me to be able to give back in some way to those that helped me through all this.

What did it mean to be accepted?

When I filled out the summary I felt no way will I be accepted so I’m not going to worry about it. When I received that email from the FDA that said, “We would like to extend an invitation to you to present your comments during the panel discussion on Topic 1,” I had to read it twice. My next reaction was of total humility, to represent so many patients on a panel and to tell people what we all face was such an honor. My next reaction was to share the good news with Sarah on PatientsLikeMe because I knew she’d be just as excited for me.

What was it like being there as a patient representative speaking at the FDA event? Did you feel like your voice was heard?

It was amazing! I wasn’t alone – there were 8 panelists who have been affected by this awful disease and 4 of us were IPF Patients. As panelists were speaking on their experiences, I would look at the FDA representatives and I could see that they were moved. That is what we went there to do and I truly believe we accomplished that.

What did you learn when you were there?

As many of us have had to do, I have had major changes this last year. Changes that really impacted me. After our panel was done there was a break and people were coming up to me and talking to me about their own experience or thanking me.  It was an unbelievable experience. I learned that I still could contribute in some way. It is good to know what we were doing was important. It gave me a bit of that feeling of accomplishment and purpose that I’ve been missing lately.

How do you feel about your pursuits as an advocate for IPF after having this experience under your belt?

I’m still whirling from the experience. I would love being an advocate for IPF, getting the word out is so important. I was just at the COE I go to for the clinical trial I’m in and I was telling them about my experience and showing them the pictures. There are opportunities to be interviewed by some doctors and the center said they would give out my name when the opportunity arises.

When I completed the summary for the FDA I thought ‘I can really do this!’ So, when I was asked to participate in an afternoon education session for 2nd year medical students at UCONN School of Medicine I said yes. The discussion will be on the impact of chronic diseases on patients and family. You can bet I will tell them the disease that I have. It’s exciting to get that word out so when they become practicing medical professionals and they hear idiopathic pulmonary fibrosis or pulmonary fibrosis, they will hopefully remember what it is.

I just want to add the biggest thing the experience gave me. The in person support groups are few for IPF. In my area there is only 1 and it’s quarterly. The virtual support groups like PatientsLikeMe have been a life changing experience. Many of us feel compassion for each other and cry when they cry and laugh when they laugh and praise those who have accomplished milestones like increase in PFTs or Pulmonary Rehab. It was these virtual groups that got me to a COE and on my journey to living with IPF and not dying with IPF. It still brings me to tears remembering looking out into the audience and seeing over 100 IPF patients some that I have spoken to online and seeing them in person literally takes my breath away to know I really am not alone and that we are many. I got to talk to them in person.

The pictures – UGH! I hate my steroid looks but as Diane, another patient said, this is our new normal. So the selfies are there! Sally taking a picture of me at the FDA podium ~ we got to sit when we spoke with Dr. Lederer from NY Presbyterian Transplant Team, with Diane another IPF panelist and with Sally from PatientsLikeMe

PatientsLikeMe helps so many diseases online and we can think of it as just another online place and not realize there are people behind the scenes that really care for us. Meeting Sally from PatientsLikeMe and seeing her stand up and speak with such compassion about IPF puts a face to such a wonderful organization. I want to thank you for giving me the opportunity; you can’t imagine in a million years what it meant to me. I will be forever grateful.

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Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF

Posted October 16th, 2014 by

On September 26th I was at the FDA for the Patient-Focused Drug Development Public Meeting on IPF. This is one of 20 meetings that the FDA is holding to learn directly from patients and their caregivers about daily life with the specific condition’s symptoms and treatments. (You can learn more about these meetings here.) I have attended a number of these meetings and often have meaningful data to share from our own PatientsLikeMe members. So far, however, the FDA has only allowed patients and caregivers to present and participate as panelists.

So to get as much of our members’ real-world health data in front of the FDA as possible, I take full advantage of the public comment period at the end of each meeting. It’s a short 3-5 minutes of time, but it’s a chance to share insights from PatientsLikeMe members and to reflect on some of what’s been discussed during the public meeting. In addition, we submit a full report to the FDA’s public docket that is open for comment two full months following the meeting. The report includes a community profile and the results of any polls PatientsLikeMe members have taken part in prior to the meeting.

This meeting was different
It was my pleasure and privilege to meet and spend time with a member of our PatientsLikeMe community who was selected by the FDA to be one of the panelists. LaurCT did an amazing job sharing her challenge in getting an accurate diagnosis – which took a number of years. She also shared with the FDA and all the folks in the room that she did not learn about the Center of Excellence for IPF located only an hour from her home from her now former pulmonologist after finally getting the diagnosis of IPF – she learned about it from other IPF patients on PatientsLikeMe. (Thank you for sharing Laura!)

Many in the room acknowledged that a cure may not be found in their lifetime but they also conveyed to the FDA a palpable sense of urgency for treatments to slow the progression of the disease to reduce their symptom burden and increase their ability to participate more fully in life. What was startling was how often people shared how the lack of knowledge about IPF among physicians – even among pulmonary specialists – led to delays in their diagnosis and for some resulted in misdiagnosis and inappropriate treatment.

One specialist, Dr. David Lederer, co-director of the interstitial lung disease program at Columbia University Medical Center in New York City and well known to many patients in the room for his work in IPF, used his few minutes in the public comment period to call for therapies that help his patients “live longer, healthier, more normal and independent lives.” He provocatively said that “oxygen should be free” and called for more study of the benefits of oxygen combined with exercise which today are the only things that help people with IPF actually feel better. This was borne out in our poll as well.

A family thing
In addition, there is an important familial connection that many feel is not getting sufficient attention in research. One woman shared her family’s story starting with her father’s diagnosis and death followed by the deaths of each of his 4 brothers of the same disease. A number of people talked about family members who died over the years with similar respiratory symptoms and questioned whether they in fact may have died of undiagnosed IPF.

Your voices transformed
While the opportunity for patients to be heard cannot be diminished, I along with others in policy and advocacy circles remain concerned by the anecdotal nature of these FDA proceedings. At each meeting, there are a few polling questions with audience clicker devices, but there is no systematic way of transforming the very powerful patient narratives that are shared into meaningful and usable data. At PatientsLikeMe, your stories and your voices are best amplified and speak most loudly when transformed into data that is both meaningful and measureable.

All that said, it’s worth watching the free webcasts of the meeting, which you can find here.

PatientsLikeMe member SallyOkun

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Shining the spotlight on pulmonary fibrosis

Posted September 17th, 2014 by

 

You may have seen our post on Pulmonary Fibrosis Awareness Day, but did you know September is also Pulmonary Fibrosis Awareness Month? The Pulmonary Fibrosis Foundation (PFF) wants everyone to shine the spotlight on idiopathic pulmonary fibrosis (IPF), and many PatientsLikeMe members have already shared their stories – Lori documented her journey from diagnosis to transplant in a 4-part blog interview series, along with Barbara and John.

We also wanted to pause for just a minute to recognize PatientsLikeMe member Bryan. He joined the community in 2013 after being diagnosed with IPF and was an inaugural member of our Team of Advisors.

We are sad to share that last month, Bryan passed away, and all of our thoughts are with his family, friends and fellow PatientsLikeMe community members. But even though Bryan may no longer be with us, his memory and data live on. The experiences he shared will help drive change in IPF and in healthcare. We can think of no better way to pay tribute than to share his recent video with everyone. Bryan, you will be missed.

In Memoriam
Bryan Kincaid


(1947-2014)


Let the world know about pulmonary fibrosis

Posted September 7th, 2014 by

On Rare Disease Day back in February 2013, we announced our partnership with Boehringer Ingelheim to help enhance the online idiopathic pulmonary fibrosis (IPF) community. And by September 7th that same year, the community had grown to just over 1,000 people. Today, on the next edition of Global Pulmonary Fibrosis Awareness Day, the community stands 2,500+ members strong, making it the largest online gathering of IPF patients anywhere in the world. In just a year, the community has almost tripled in size, and everyone is sharing about their experiences so that other patients, doctors and researchers can learn more about life with IPF.

But what exactly is IPF? Pulmonary fibrosis (PF) is a medical condition that causes lung tissue to thicken, stiffen and scar over a period of time, and “idiopathic” means “no known cause.” According to the Coalition for Pulmonary Fibrosis, there are over 100,000 Americans living with IPF at any given time, and an estimated 40,000 will die from the condition every year. And besides a complete lung transplant, there is no known cure for IPF.1

Today, the Pulmonary Fibrosis Foundation (PFF) is encouraging everyone to educate, share, fundraise and start conversations about IPF. You can learn more about how to get involved through the PFF’s toolkit and guidelines for September.  And if you or someone you know has been diagnosed with IPF, join the community at PatientsLikeMe – let’s change who knows about this condition and promote a better understanding of IPF all year round.

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1 http://www.coalitionforpf.org/facts-about-idiopathic-pulmonary-fibrosis/


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

Posted August 3rd, 2014 by

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 mid April, Lori got the call – they had a set of lungs for her. We caught up with Lori one more time, and fifteen weeks post transplant, she’s nothing but smiles. Check out what she had to share and don’t forget to follow Lori on her own blog called Reality Gasps. (Thank you Lori for being so open about your experiences with IPF!)

 

 

What was your reaction when you got ‘the call?’ You mention a whole range of emotions on your blog.

The call took me completely by surprise. I’d been admitted to the hospital a week earlier because we just couldn’t meet my oxygen needs at home any more. I was literally 10-minutes away from starting a procedure to suppress my antibodies (to help increase my somewhat slim chances of finding a match) when the nurse walked in and told me they might have lungs for me.  Actually she said they “might, might, might, might, might” have lungs – normally they wouldn’t have contacted me that early in the process, but they had to cancel my procedure just in case. I felt an initial jolt of adrenalin and couldn’t help busting out in a huge grin. I quickly tamped down my euphoria, though. There was still a long way to go and anything could happen.

An hour later when I heard we were moving forward, I burst into tears. A year’s worth of pent up emotion poured out through those wracking sobs. I couldn’t believe my miracle was so close. But wrapped up in my joy was guilt that my chance to live was coming through the death of another.

Until the moment they put me under, my emotions continued to cycle from near manic joy, to fear that the lungs wouldn’t be right, to anguish for my donor and his family. Everyone says it’s a roller coaster, but like parenthood, you can’t really understand what that means until you live it.

What happens between getting the call and going into surgery?

Since I was already in the hospital, there was no mad dash for me. When the team decided to move forward, I was sent down for pre-surgery testing — a chest x-ray and blood work. Then we waited, and waited for a good 12 hours. Finally I was sent down to pre-op at 2:00 AM to get ready for surgery at 3:00. They inserted an arterial line and an IV. And they checked and rechecked my drug allergies and medical history. I was the only person in pre-op, but I still had to recite my name and birth date for everyone who came by!

My surgeon arrived and told me he’d heard about my surgery early enough to make sure he got a good night’s sleep with plenty of time for breakfast. I’d brought a disposable camera to get pictures during surgery, so he talked me through his typical “shot list”. I couldn’t wait to see those beautiful new pink lungs!

Just before I was to head to the OR, the doc got a call from the retrieval team that we were delayed for an hour. He said this was very common — they had to wait for all of the teams to arrive before they could start. We were delayed twice more as teams continued to fly in. When I finally made it to the operating room, I was surrounded by people and equipment. They explained each step as they got me situated on the table, and then the anesthesiologist placed a big mask over my face. Thankfully, I remember nothing until they removed the breathing tube three days later.

Fifteen weeks post transplant – how’s recovery and rehab going?

Full recovery takes about a year, but I am astonished at how far I’ve come in just three months. I went into surgery pretty weak because I didn’t have the energy (or the breath) to move much.  A lot of people told me to keep my legs as strong as possible and I quickly learned why. Post-surgery, I was on high-dose prednisone, which is very hard on the quadriceps – my thighs felt like jelly. Most people are up and walking shortly after their breathing tube is removed. I ended up needing a trach, so it was about a week before I took my first steps. I walked nearly 200 feet that first day and increased my distance and strength every time I hit the halls.

The day after I left the hospital, I returned for my first out-patient rehab appointment. I walked 15 minutes on the treadmill at a smokin’ 0.5 mph. Within a few days, I was up to 30 minutes and started to increase my speed. Now I’m walking two miles a day around the neighborhood and am working hard toward a 15-minute mile. It’s the hardest work I’ve ever done, but it is so worth it!

The one thing that really took me by surprise was the mental part of rehab. Before transplant, my body worked very hard to breath.  Shortness of breath meant my body needed more oxygen. But after transplant, neither one of those was true anymore. It was difficult to accept that I didn’t need to consciously breathe – my lungs could take care of that on their own.  After a week, I would periodically “forget” to breathe and be surprised to discover my lungs were working just fine. When I was walking laps around the halls, I would periodically get short of breath and start to panic – there was no valve to turn up my O2!  The pulse oximeter showed my sats were well into the 90s. I was short of breath because my body was weak, not my lungs. Thankfully, breathing is once again second nature!

What comes to mind when you think back on everything you’ve gone through – diagnosis to transplant?

I went through the same fear that most people do when they are diagnosed with IPF. The prognosis is pretty bleak: no treatment, no cure, progressive. But I decided early on that I was going to live my life as normally as possible – and do everything I could to prepare myself ready for transplant.

I continued to work for nine months, using oxygen at the office. But after two pneumonias, it was clear that my body was too fragile for the daily grind.  Without work distracting me, priorities and perspectives shifted. Everything suddenly had a sense of urgency. There might not be time “some day” to get back in touch with that friend, or tell my brothers how much they really meant to me. I had to let go of the things that had consumed me, like worry and regret, so I would have time and energy to do work on my life “to do” list.

I worried that after transplant, when things returned to normal, I would soon forget the lessons I’d learned. This whole experience has been a journey toward gratitude, and I realize now I will never be the person I was before – physically, emotionally or spiritually. Every morning I give thanks for my first waking breath. Throughout the day, I find the most delightful surprises – like watching a mama squirrel move her babies to a safer home. And sometimes I just stop and marvel at the air passing in and out of my lungs, lungs that once breathed in someone else’s chest. I spent three years quietly saying goodbye to all the things and people I loved. Now I get to spend the rest of my life saying “hello” again!

Additional comments from Lori

We just returned from our celebration trip to Sanibel Island, one of my favorite places in the world. For the first time since my diagnosis, I was able to walk the beach without tanks in tow. The image of Sanibel’s shell-strewn beaches and the memory of that rich briny air kept me pushing forward as first I struggled to breathe in ICU, and then sweated my way through PT and rehab.

At least once a day while we were there, my husband whispered to me “No oxygen”. It felt like a dream, a wonderful, amazing dream. We’ve been going to Sanibel for 25 years. It’s a huge part of our family tradition, and making it back there was an important milestone for me. A plaque on the wall at our beach condo read “If you’re lucky enough to be at the beach, you’re lucky enough.” That’s pretty much the way I feel about everything now!


The Patient Voice- PF member Bryan shares his story

Posted July 10th, 2014 by

 

Since we announced #dataforgood back in March, many PatientsLikeMe members have been sharing about why they donate their own health experiences. Becca (fibromyalgia) and Ed (Parkinson’s) already shared their stories, and now we’re hearing from Bryan, an idiopathic pulmonary fibrosis (IPF) member. Check out his video above. Miss Becca or Ed’s? Watch them here.

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Food for thought: May edition

Posted May 30th, 2014 by

Just last month, we shared about some of our community members’ favorite foods, and about how what they choose to eat can impact the conditions they live with every day. We heard from the fibromyalgia, type 2 diabetes and multiple sclerosis communities – and to keep the series going, we’ve got three new hot, or cold if you like a good scoop of ice cream, forum threads to share. (If you follow our blog, that hot/cold play just made you smile… again. ☺)

ALS forum thread: tips on how to gain weight while eating healthy?

“… the bottom line is that I need to put on weight. I eat organic foods when possible, no sugar and a little if any wheat.”

“I rely on high calorie fruit (but all are good) such as bananas, mangoes, blueberries, etc. I just blend them up (using one fruit) to make smoothies.” 

“You might try using Ensure, Boost or other nutritional food extras.” 

Idiopathic pulmonary fibrosis forum thread: Primal blueprint

“The basic premise is that we should be eating like our pre-agricultural ancestors and eliminate grains and sugars from our diet. I need to lose weight to get on the transplant list…”

“And it becomes very surprising to find out how wheat is found in many unexpected products.”

“Men do demonstrate the ability to lose weight quicker and faster than women … although I prefer the word ‘program’ to ‘diet’” 

PatientsLikeMe forum thread: Nutrition questions anyone?

“Someone mentioned to me, and I am wondering if it is a concern to others, that the skin of fruit nowadays might have too many toxins from sprays, etc. … do others that eat non-organic worry about that?” 

“Juicing is a wonderful way to gulp down the 10-20 servings of raw fruits and vegetables that many are encouraged to intake.

“My intestines are very sensitive to fibre, I would have to build up the fibre content very slowly, or they would go straight through me …”

Jump into one of these forum threads or you can always start your own with a favorite recipe, general diet tips that have worked for you or a question you think the community can help answer.


“Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF

Posted May 19th, 2014 by

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 living with IPF below.

Some PF members report having difficulty finding a diagnosis – was this the case with you? What was your experience like? 

My journey started back in 2005, when after my first chest cold that winter, I was left with severe coughing spells and shortness of breath. An earlier chest x-ray didn’t indicate any issues, so I was referred to a local community-based respirologist (what we call a pulmonologist here in Canada) who wasn’t concerned with my PFT results. I also had a complete cardiovascular workup, again with no alarming results.

Then, in 2008, I had another chest cold. Growing up in a family of smokers and being the only non-smoker, I seemed to have managed to miss having chest colds, but 2005 and 2008 were definite exceptions. Again, a normal x-ray, another visit to the respirologist and another PFT that didn’t send up any alarms [although looking back at both 2005 and 2008, I can see where there was a definite indication that I was heading towards restrictive breathing problems]. Inhalers only made the coughing worse. The respirologist said I had “sensitive lungs” – gee, doc you think?

Then, in November 2010, I was laid out with another chest cold, coughing my lungs inside out, barely able to walk 10 feet. So the new family doctor calls me. This time, the x-ray report came back that I was showing signs of interstitial lung disease (ILD). What? So onto the computer and in to see the family doctor. When the doctor suggested sending me back to the local community-based respirologist I had previously seen, I said NO BLOODY WAY!

Instead, through a friend who is a thoracic surgeon at the University Health Network (UHN) in Toronto, I got a quick appointment at the ILD Clinic at Toronto General Hospital (TGH) in January 2011. Since I hadn’t yet had a HRCT, I was sent for one and returned to the clinic in June. The initial diagnosis was probably IPF, but maybe NSIP since my HRCT didn’t show the UIP-pattern. The decision was made to treat as IPF so no harmful treatment was undertaken. A biopsy was discussed, but was considered too early for that invasive test and that instead my disease would be monitored via non-invasive tests.

My ILD/PF specialist continued to monitor me and after another exacerbation early in 2012 and the PFT showing a progression of my lung disease, we decided to send me for a VATS biopsy. The September 2012 biopsy clearly indicated the UIP-pattern of lung damage and the IPF diagnosis was confirmed.

Over the last few years, I’ve learned a great deal. I know that the road to diagnosis is often long and complex with not all the pieces of information presenting at the same time — seldom with one test or series of tests taken at one point in time. I feel I’m fortunate that first I had that very unsatisfactory experience with the local community-based respirologist and that through my husband’s work we had met and become friends with a thoracic surgeon who is on the lung transplant team at TGH.

So even though I “naturally” followed the recommended course of action to get myself to an ILD/PF expert, my path to diagnosis wasn’t instantaneous. My biopsy could have just as easily shown that I had a treatable form of PF — still not good news but a different path.

Now with a confirmed IPF diagnosis, I’ve been assessed for transplant (June 2013) and found suitable but too early. But another winter of exacerbations and my ILD/PF specialist is now talking about going on the waiting list.

Another PF member, Lori, spoke about her “new normal” – how did your diagnosis change daily life?

Yes, life with PF has certainly been a series of adjusting to the “new normal” but up until February 2013 when I started oxygen therapy, the changes were small. I had to explain to people why I broke into coughing fits while talking on the phone or in person. I had to explain to people who offered water that thank you but it didn’t help since it was just my lungs telling me to talk slower or shut up. I had to explain to people that I wasn’t contagious when coughing. I had to explain to people that the huffing and puffing were just the “new me” and that they didn’t need to feel they had to jump in — that I would ask when I needed help.

But since going on oxygen therapy with my new facial jewelry and my constant buddy, I don’t have to explain that I have a disease but some people still like to ask questions and I enjoy answering them.

Life with PF and supplemental oxygen is definitely more complicated. I started with high-flow for exertion (6 lpm) and liquid oxygen (LOX). So I can’t spontaneously take off overnight (I would have to make arrangements about a week ahead to have  equipment and supplies delivered at my destination) and I probably can’t fly. But I’m a homebody so that has affected me very little. But I can’t leave the house without considering how long I will be and how many of my LOX portables to take with me.

I still do my own driving, shopping, cooking, housework, and one or two 2-mile walks per day on the farm property — over hilly landscape — because I’m de-conditioned after this past winter. I’m currently having to use 8-10 lpm for those walks but I’m doing them. Use it or lose it!

What made you decide to get so involved in the PatientsLikeMe community and how has it helped you better understand your own PF?

Involvement with PatientsLikeMe was more of a knowledge-based decision. I believe that knowledge is power and knowing as much as I can about my disease helps me to manage the disease. For me, support is sharing what I have found and providing directions to that information for others. Then it is up to them to read the information and decide how, or if, it applies to them.

I believe in being my own medical advocate in charge of my medical team. I’ve probably had a natural propensity for that but my way of thinking in not being a traditional patient was affirmed by Dr. Devin Starlanyl, a doctor with fibromyalgia who wrote The Fibromyalgia Advocate. Fibromyalgia is a matter of living with and managing the symptoms and dealing with different medical specialties to achieve that BUT also accepting that you as the patient are central to treatment and management.

I believe that living with PF is that way as well. The doctors can only do so much. There is no single silver bullet that they can give us, no matter what type of PF, to make it all go away. We have a core set of symptoms BUT we don’t all have all the same symptoms. We have to take ownership for our disease management.

So at PatientsLikeMe, I seek to not only learn but to share what I’ve learned. If I can help one other person shorten their learning curve then perhaps I’ve helped.

On your PatientsLikeMe profile, you reported using a pulse oximeter in 2013 – how did you like it? What did it help you learn?

I found that I was having to slow down too much or struggle too much to breathe. My walking test was not yet indicating that I qualified for oxygen therapy but rather was on the cusp of requiring supplemental oxygen. I was concerned about the damage to my body.

I purchased an inexpensive pulse oximeter to check my saturation. I soon realized that being short of breath was not a reliable indicator that my oxygen saturation had dropped below 90%. Having the oximeter to give me a measure of my saturation helped me to better interpret and listen to the other biofeedback that my body was giving me.

The oximeter helped me to manage my activity so that fear didn’t turn me into a tortoise that either slowed way down or seldom moved. I got a better handle on just how much and how fast I could do things to keep active, to keep my body healthy, to exercise all the parts of my respiratory system, and yet to do it SAFELY!

Looks like you use your profile tracking charts and reports a lot on PatientsLikeMe- why do you donate so much health data, and how do you think that will change healthcare for people living with PF?

Again, my propensity. I love learning! I love sharing what I learn! I keep my own spreadsheets with my medical data but that only benefits me. I know that one of the problems for researchers is accessing a sample population large enough to make meaningful inferences from their findings. And finding a large population in a given geographical area for a rare disease is difficult. Going outside the geographical area is expensive. So hopefully the remote sharing of information will be the answer.

We are all so very different and so many of us also have other health issues on top of the PF. So who knows what comparing us will show? But throughout life I’ve been amazed at how seemingly inconsequential, seemingly totally unconnected pieces of information can come together at a later point and TURN ON the light bulb!

So why not share my health data? It really is anonymous. Unless I provide more identifying information, I’m just a name and a face but maybe with enough names and faces we can get some answers that will benefit us all.

 Share this post on twitter and help spread the word for pulmonary fibrosis awareness.


Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Posted April 18th, 2014 by

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at how confident people are in managing their own conditions. More than 1,500 members from 9 different condition communities on PatientsLikeMe took part. They worked with our research partner Ken Wallston from Vanderbilt University to make the tool the best it can be. (Thank you to everyone that participated! This is your data doing good.) Check out the PMCSMS results and keep your eyes peeled for more ORE questionnaire results as we continue the series on the blog.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.


Uniting for hope on Rare Disease Day 2014

Posted February 28th, 2014 by

hopeToday, healthcare professionals, research advocates and many people living with rare conditions are coming together to observe Rare Disease Day. It’s all about raising awareness for rare and genetic diseases, improving access to treatments and learning more about what exactly makes a condition rare.

In the United States, a disease is considered rare if it affects less than 200,000 people at any given time. Rare diseases affect almost 1 in 10 Americans, and many times, they cause common symptoms that can be mistaken for other conditions.1

 

All across the world, people are raising awareness for rare disease. Here are just a few things you can do to join them.

  • Wear your favorite pair of jeans today to help the Global Genes Project promote the Blue Denim Genes Ribbon
  • Use the hashtags #CareAboutRare and #WRDD2014 and share them with @GlobalGenes on Twitter and Facebook
  • Find an event in your state and participate in local activities
  • Print out this flyer, take a photo of yourself with it, and submit it to Handprints Across America

Rare diseases have a personal connection with PatientsLikeMe – our co-founders’ brother, Stephen, was diagnosed with ALS (Lou Gehrig’s Disease) in 1998, and their family’s experiences with the condition led to the beginning of PatientsLikeMe. In 2012, we partnered with  the Global Genes Project  to create the RARE Open Registry Project to help those diagnosed find others like them in one of the over 400 rare disease communities on the site, and  launched the first open registry for people with alkaptonuria (AKU) with the AKU Society in early 2013. We also accelerated our focus on enhancing the idiopathic pulmonary fibrosis (IPF) community through a collaboration with Boehringer Ingelheim. And now, the IPF community on PatientsLikeMe is the largest open registry with close to 1,900 members …and counting.


1 http://rarediseaseday.us/about/


“We can and will do better” – An interview on pulmonary fibrosis with Dr. Jeff Swigris

Posted January 3rd, 2014 by

Just this past month, a few members of the PatientsLikeMe Team (Arianne, Dave and Rishi) traveled to La Jolla, CA for the Pulmonary Fibrosis Foundation Summit. It was quite the mixed crowd (with patients, clinicians and researchers), and it gave them (and everyone at PatientsLikeMe) a chance to learn more about pulmonary fibrosis (PF) from different points of view. Thank you to everyone who stopped by our exhibit booth and for sharing your experiences.

While they were there, the team had the chance to interview Dr. Jeff Swigris. He’s an Associate Professor of Medicine at National Jewish Health in Denver and has been working with PF patients for almost two decades. He’s published over 65 articles on interstitial lung disease (ILD), most on IPF, and he has a special interest in Patient Reported Outcomes (PROs) and patients’ Quality of Life (QOL). Dr. Swigris is also the Director of the Participation Program for Pulmonary Fibrosis (P3F), an online resource for patients, caregivers or anyone interested in learning more about PF. On the P3F website, patients and caregivers can also find out about studies they can currently enroll in. Right now, the P3F is currently enrolling for a study that aims to examine the effects of supplemental oxygen on patients with PF and their caregivers.

Why do PROs matter? And what questions are Dr. Swigris and his team at the P3F trying to answer? Find that and more in our interview.

Can you tell us a little about yourself and what led you to focus your research on pulmonary fibrosis?

Originally from Illinois, I went to med school and completed much of my education in Ohio before pursuing subspecialty training in Pulmonary and Critical Care Medicine in California. What led me to focus on PF? Like many pulmonologists, at the start, my interest was in the critical care medicine aspect of the profession, because it’s so immediate: there’s an urgent medical need that requires an instant intervention, and you can see the results of your decisions right away. That pace/action drew me to the field, but as a resident, in the late 1990s, I did a pulmonary pathology rotation. This was around the time we were uncovering new and exciting things about interstitial lung disease (ILD) in general and PF in particular. The community discovered that, upon careful re-inspection, certain ILD patients that had been labeled with idiopathic pulmonary fibrosis (IPF) lived longer than expected, and their longer survival was driven largely by what was seen under the microscope—in lung biopsy specimens from these patients. When I landed at Stanford, I didn’t want to focus on pathology, I wanted to focus on ILD patients. There wasn’t a structured ILD program at Stanford when I first arrived, but IPF researcher and one of my mentors, Glenn Rosen, offered me the chance to help him start one. I realized no one in the ILD community was focused on ILD patient experiences and their quality of life (QOL). I wanted to focus on ILD patients as people and really understand their experiences (probably influenced by my training in osteopathic medicine, which offered me the perspective of looking at patients through a holistic lens). It was a gap that needed to be filled. I had found my niche. That’s how I got started focusing on the patient experience, patient reported outcomes (PROs) and QOL in PF.

For those who might not know about it yet, what’s the P3F all about?

The goal of the P3F is to create a safe, trustworthy online environment and informational resource for patients and caregivers and to provide a platform for conducting research that matters to patients with PF. In the current project, we’re trying to determine whether and how supplemental oxygen affects (benefits) patients with PF. We’re funded by PCORI, which is an amazing research organization. As mandated by PCORI, we’re getting everyone involved in this research: patients, caregivers, even oxygen prescribers. Above all, this project gives me a chance to work with very engaged patients, some of who are actually members of my research team.

Knowing what questions to ask patients, the when, how and why of the thing is really important. The first thing we needed to do for this project was to figure out what question needed to be asked—what question do patients with PF want to know about? We started the investigation by going to the experts—the patient- and their caregiver-members of our PF support group. I noticed all my PF patients ask about oxygen, and oxygen is a major topic at our support group meetings. My perception is that oxygen is generally perceived as a “bad” thing because it’s a marker/milestone that the disease is severe and progressing. When supplemental oxygen comes into the home, it affects the entire home environment and everyone there, particularly the patient, but also the caregiver. There’s a lot of equipment and planning involved, as patients know, and using oxygen becomes “a daily grind.” Supplemental oxygen can be a constant reminder the disease is getting worse, but the reality is we know very little about the therapeutic effects of oxygen for PF patients (and the majority of the available data has been mostly borrowed from COPD studies). Some questions we want to know about oxygen use are:

  • Do patients who use it feel better?
  • Does using oxygen allow people to be more active? Does this change the longer patients use oxygen?
  • Are people who use supplemental oxygen more or less likely to leave the home? Does this change the longer patients use oxygen?
  • Do patients who use it live longer?
  • Does oxygen use prevent pulmonary hypertension?
  • What are the downsides to using oxygen (eg, public stigma)?

I want to include patients in the process of filling this big gap in knowledge (about supplemental oxygen), and I needed patients to help us shape the goals of the study. (Sounds pretty in line with PatientsLikeMe!)

On PatientsLikeMe, the pulmonary fibrosis community has their own patient reported outcome measure (PRO) we call the PF Severity Score. Can you tell us a little about your own interests in PROs and how you see them being used in healthcare?

I believe the patients’ perspectives are incredibly important, and they will be increasingly used as endpoints in therapeutic trials. Improving lung function is one thing, but is that all we can do? NO! We want to allow patients to feel better and do more. Improved patient QOL should be a major goal, maybe the most important goal. The challenge is the rigorous development of PROs, so the clinical and research community can be confident the PRO is sound.

How do you think online communities like PatientsLikeMe can impact someone living with a rare lung condition?

For some patients, particularly those with rare diseases, it may be difficult or impossible to find other patients with the same illness. Even for common diseases, there is such comfort in knowing you’re not alone (online or in person, someone knows what you’re going through). Knowing you’re not alone gives you confidence, a sense of control, to persevere and keep living.

As an expert in the field, what’s ahead for pulmonary fibrosis research and quality of life advancements? (Any studies you’d want people to know about?)

As mentioned above, one of the big gaps in understanding of ILD is the benefits and drawbacks of supplemental oxygen. That’s what the current study on the P3F is focused on. People can find out more information on that here. We need disease-specific PROs that have been rigorously developed in the targeted patients. Continuing to borrow data from other diseases won’t work for the PF community in the long term. I’m definitely interested in learning more about how I might partner with PatientsLikeMe and use the Open Research Exchange to develop these PROs. If we all find a way to work together, we can and will do better for patients.