Food for Thought: September weather and autumn recipes

Posted September 30th, 2014 by

Around the PatientsLikeMe office in Boston, the leaves are beginning to turn red, yellow, orange and gold, and everyone is starting to bundle up as the weather gets colder. In turn, PatientsLikeMe members have been sharing their favorite fall recipes and some thoughts about how the weather impacts the conditions they live with. Here’s what some have been saying:

 

I love fall. Cooler temps, brisk breezes, my favorite earth colors and long-sleeved tops with soft vests. The more clothes I put on, the better I feel. [I made] creamed chicken and peas with garlic toast. One of my favorites I only make when the husband is off visiting family.”
-Fibromyalgia member

I love recipes from Real Simple because they tend to be very…ah…simple. This is a crock pot one (yay!) and the potatoes are totally unnecessary if you are avoiding them.
-Mood member

“I will be making sautéed Kobach squash w/ onions, broccoli and some Jasmine rice. Spices turmeric, paprika, salt and pepper. Maybe a little scrambled eggs added.”
-Fibromyalgia member

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And don’t forget to check out our other Food for Thought posts if you missed them.


Every three minutes

Posted September 29th, 2014 by

That’s how often a person is diagnosed with blood cancer in the United States, according to the Leukemia and Lymphoma Society (LLS). This means that 156,420 Americans will be diagnosed in 2014, and hundreds of thousands more worldwide.

But that’s just the start of what everyone can learn during National Blood Cancer Awareness Month. Check out the Lymphoma Research Foundation’s (LRF) video below:

Did you know there are actually three main types of blood cancer? Each affects a different kind of cell in your body and can vary greatly:1

Leukemia is found in your actual blood and bone marrow, and it causes abnormal white blood cells to form and disrupt the normal immune system.

Lymphoma affects your lymph nodes and lymphatic organs, which are the parts of the immune system that remove excess fluid from the body and produce special white blood cells.

Myeloma is the cancer that is limited to plasma cells, which are cells in your blood that help produce antibodies and fight disease.

There are many subtypes of these three categories, including conditions like chronic lymphocytic leukemia, non-Hodgkin’s lymphoma and multiple myeloma, to name a few common ones. This month, get involved by participating in a Lymphomaton (a fundraising and awareness walk), finding a LRF chapter or even posting awareness flyers and posters on Facebook and other social media outlets.

 

Don’t forget to check out Bob’s blog interview – he’s a PatientsLikeMe member who shared about his life after being diagnosed with multiple myeloma and how he’s learned to manage his condition.

 

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1 http://www.hematology.org/Patients/Cancers/


Ovarian cancer – taking early action

Posted September 26th, 2014 by

Do you know why teal is the official color for Ovarian Cancer Awareness Month? It’s an acronym for Take Early Action and Live. This September, we can all do our part to help people understand what it’s like to live with this condition, including spreading awareness and education for early signs and symptoms.

In 2014, the American Cancer Society (ACS) predicts over 20,000 women will be diagnosed, and more than 14,000 others already living with ovarian cancer will die from complications. Here are the straight facts about ovarian cancer from the ACS:

  • 1 in every 73 women will be diagnosed with ovarian cancer at some point in their lives.
  • Ovarian cancer ranks 5th in cancer deaths among women.
  • The lifetime chance of passing away from ovarian cancer is 1 in 100.

If you’re in the area, you can attend one of the National Ovarian Cancer Coalition’s (NOCC) many events this autumn, and you can also share the TEAL poster on social media. And if you’re living with ovarian cancer, you can also connect with other women like you in the PatientsLikeMe community.

Share this post on Twitter and help spread the word for ovarian cancer.


The Patient Voice: Epilepsy member Letitia shares her story

Posted September 25th, 2014 by

 

 

What would you do if you were living with seizures from epilepsy since you were ten years old? And you weren’t even able to drive a car? Letitia turned others living with epilepsy on PatientsLikeMe and shared about her journey in a recent video. Watch above to see her inspiring story, and how she’s helping others through her own experiences and the data she’s donating on PatientsLikeMe.

 

 

Share this post on twitter and help spread data for good. And don’t forget to check out previous data for good member videos.


“Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge

Posted September 19th, 2014 by

Ice + water + video camera = a viral ALS awareness campaign that has spread over social media and the news like wildfire. Millions of dollars has been raised for ALS research while more and more, people are learning about this neurological condition. Recently, PatientsLikeMe member Steve (who has been living with ALS since 2009) took on the challenge, and we caught up with him to find out why. Steve shared about his own diagnosis experience, what he thinks about the ALS community on PatientsLikeMe and what he hopes to see come out of the IceBucketChallenge. Don’t forget to follow Steve on his own blog, too. He calls it Bachblog. 

Can you tell us a little about yourself and your diagnosis with ALS?

I first noticed an odd cramping in my left hand sometime during the summer of 2009 when I was 49 years old. That fall, I realized I no longer had the strength to use fingernail clippers with my left hand. At the time, I was playing pickup basketball two or three days a week. I began to notice that after one hour of basketball I was “wiped out” and that I was having difficulty taking longer shots.

In January 2010 I saw a doctor for a sports hernia related to basketball. At my wife’s insistence, I brought up the cramping in my hand. He took one look at me (I was shirtless) and noted that I had fairly significant atrophy of the left arm. He referred me for an EMG, which I had a few days later.

Within a couple of months I got my neurologist to reluctantly admit that she believed I probably had ALS. She referred me to the University of Minnesota ALS clinic and, about a year later in February of 2011, I was given a definitive diagnosis.

Because I am a U.S. Navy veteran and the VA treats ALS as a “presumed service-related condition,” I am very well taken care of by the government. I am very fortunate in this respect and I wish all PALs had a similar level of support.

I retired in August 2011 as a computer programmer/analyst and UNIX systems administrator. My wife and I (with, at times, other members of my family including two daughters) have traveled quite a bit since my diagnosis: Hawaii, Belize, the Dominican Republic, Costa Rica and a Baltic cruise. I feel fortunate to have enjoyed years of relatively good health. However, I have declined to the point where any significant future travel would be very difficult.

Closer to home, I continue to enjoy family, reading, writing, online and (occasionally, with help) club and tournament Scrabble, trivia competitions, birding, and the Minnesota Timberwolves and Lynx. In the past two years I have created crossword puzzles that I have shared on my blog. I have been very happy to walk both of my daughters “down the aisle” in the past year and to welcome two great guys to our family.

You called the IceBucketChallenge a “seemingly ridiculous internet meme” in your video. Why did you decide to take on the challenge?

At first I thought that it was a curious way to spread ALS awareness and not much more. Many of the videos I had seen barely mentioned ALS and few included appeals for donations. But that soon changed, and I began to read of the astounding amount of money being raised.

My team had raised around $7000 in two previous ALSA walks, but I was not planning to participate this year for a variety of reasons. I decided that I would use the ALSIceBucketChallenge to make a contribution this year.

There are a bunch of ALS organizations people can donate to. Why did you choose to call out ALS TDI in your video?

I believe that the ALSA, while not perfect, does a lot of good work on behalf of our community. But I know that only about 27 percent of money donated to the organization is dedicated to research. There are justifiable reasons for this figure, but in the spirit of this challenge I wanted to raise money specifically for research. I have been very impressed by the work and commitment of ALS TDI. I believe they offer a lot of “bang for the buck” and that their commitment to openly sharing what they learn is absolutely essential to the overall effort of finding a cure for ALS.

You’ve been part of the PatientsLikeMe community for more than 3 years! How has connecting and sharing with others living with ALS helped you?

I cannot begin to enumerate all that I have learned from the site. The experiences of PALs who have lived with this disease for longer than I have – and, sadly, those who have died – provide such a wealth of experience and advice. Every patient has a different experience with this disease, but there is nothing I have gone through or will go through that someone else has not faced. PatientsLikeMe has been and will continue to be a valuable resource as I struggle to meet each new challenge.

It looks like you update your Functional Rating Scale on PatientsLikeMe a lot. Why do you donate your health data? What does donating your health data mean to you and to research?

I try to update my FRS every time I have an appointment and am evaluated on the scale by healthcare professionals. If I had to do this over, I might have chosen to do it consistently every month.

During my participation in the dexpramipexole drug trial, my FRS scores should have been particularly helpful for researchers and PALS interested in the drug. I continue to contribute my numbers as I do not know how and when an aggregate comparison of participants’ scores may be useful.

We’re all working to find a cure for ALS, but what research advancements do you hope to see in the short term?

I believe, as do such brilliant PALs and advocates as Steve Saling, Steve Gleason and Eric Valor, that until a cure or effective treatments for the disease are found, technology IS the cure. I hope to see continuing refinements of the high-tech solutions to many of the challenges presented by this disease.

Support for research into assistive technologies and for sophisticated but expensive ALS residences is important.

As more and more people learn about ALS through the IceBucketChallenge, what’s something you think they might not understand about the condition that you’d like to share?

I know that PALs who have lost the ability to communicate or who communicate with much difficulty are often assumed to be somehow compromised mentally. They are talked down to or assumed to be deaf as well as mute. In most cases, nothing could be further from the truth. I have not experienced much of this yet, but the assumption or even the appearance of the assumption that we are unable to think, feel, make decisions and speak (even if technologically assisted) for ourselves is profoundly discouraging.

Were you part of the PALS/CALS group that sent the letter urging the ALSA to donate their funds to ALS TDI? If so, can you explain a little about the letter and why the group felt it was so important to send to ASLA?

I did not contribute to the creation of this letter but I did sign it. I think it is important for the ALSA to honor the wishes of the vast majority of contributors to this campaign and spend this money on research.

Having said that, I do not believe that it is necessarily a good idea to spend it all immediately. This windfall will not happen again. It is important that any research efforts funded by this money are sustainable. A research effort that spends a large amount of funds upfront without a realistic prospect of continuing support is a dead end. I would like to see the ALSA commit to long-term support for a few of the best and brightest independent research efforts. To researchers who are open and committed to sharing their efforts. Big pharma need not apply. To give these independent researchers assurance that their support will not dry up next year or the year after that is critically important. Therefore, not all of this money need be spent this year. It does need to be committed to research and invested wisely. This will be a challenge, but it is very important. More than ever before, ALSA needs to be transparent and responsive to its constituents in this matter.


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)


PatientsLikeMe Develops Patient and Scientific Advisory Boards

Posted September 17th, 2014 by

Company Forms First Member-Based Team of Advisors,
Names New Participants to ORE Scientific Advisory Board

CAMBRIDGE, Mass.—September 17, 2014—PatientsLikeMe has formed its first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients. The company also named three new members to the Scientific Advisory Board for Open Research Exchange (ORE), a PatientsLikeMe platform where researchers design, test and share new measures for diseases and health issues. ORE was created with support from the Robert Wood Johnson Foundation.

A long-time advocate for the patient voice in medical research, PatientsLikeMe posted an open call for the patient-led Team of Advisors in its member forums and was overwhelmed with applications. “Our members are at the heart of our pioneering approach to research, and they’re very focused on sharing their experience to improve medicine,” said Executive Vice President of Marketing and Patient Advocacy Michael Evers. “Now their voice will extend even further as we continue to revolutionize the way that healthcare is developed and delivered.”

Team members are representative of the PatientsLikeMe community at large and include veterans, nurses, social workers, academics, and advocates. They range in age from 32 to 67 years old, and two thirds are female. They are also living with a cross section of conditions, including amyotrophic lateral sclerosis (ALS), attention deficit disorder (ADD), bipolar II, epilepsy, Fabry’s disease, fibromyalgia, lupus, major depressive disorder (MDD), multiple sclerosis and Parkinson’s disease. Members named to the team include: Letitia Browne-James, Emilie Burr, Lisa Cone-Swartz, Charles DeRosa, Amy Fees, Geof Hill, Dana Hunter, Rebecca Lorraine, Kitty O’Steen, Steve Reznick, Karla Rush, and Deborah Shuman. Bryan Kincaid, an initial member of the team living with idiopathic pulmonary fibrosis (IPF), passed away last month. “The data that Bryan shared on his condition and his contributions to the team live on and will continue to have lasting impact,” Evers said.

The Team of Advisors has already met in person and will spend 12 months providing feedback to PatientsLikeMe’s research team. As part of their work, they will develop and publish a guide that outlines standards for how researchers can meaningfully engage patients throughout the research process. Amy Fees, who is living with Fabry and lupus, said: “I feel encouraged that the particular people chosen for this team share a passion for making something more out of their diseases than an affliction and a curse.”

PatientsLikeMe also added three advisors to its ORE Scientific Advisory Board. The group was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE. New advisors include:

  • Dr. Helen Burstin, Chief Scientific Officer of The National Quality Forum;
  • Eugene Nelson, Professor of Community and Family Medicine and Director of the Dartmouth Institute’s Population Health Measurement Program;
  • Ken Wallston, Professor of Psychology in the School of Nursing, Vanderbilt University.

Information on all ORE Scientific Advisory Board members is available at https://www.openresearchexchange.com/advisors.

About ORE
PatientsLikeMe’s Open Research Exchange (ORE) was launched in 2013 as an online hub to help researchers design, test and openly share new ways to measure diseases and health issues. ORE involves patients at each step of the measure development process, enabling PatientsLikeMe’s members to guide and contribute to research so that it better reflects their needs. ORE is supported by grants from The Robert Wood Johnson Foundation.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
+1 781.492.1039
mcdelogne@patientslikeme.com


“Speak up!” PatientsLikeMe member Dee speaks about her journey with ALS

Posted September 15th, 2014 by

 

There’s been a lot of awareness going on for ALS with the IceBucketChallenge, and to help keep the momentum going, PatientsLikeMe member Dee (redrockmama) shared her personal experiences with the neurological condition. She made the decision to install a feeding tube early in her journey, and now she is managing her weight through overnight supplements. Read on to learn more about her ALS story and why she thinks every person living with ALS should become their own best advocate.

 

Tell us a little about yourself and how you are doing, Dee.

I am 62, married and a mother and grandmother. I have bulbar onset of ALS. I have always been very active and independent to a fault. I was raised horseback riding and still have a horse. I am told my disease is progressing slowly but of course to me it doesn’t feel that way.

Many people in the community talk about how finding an official diagnosis isn’t easy – what was your experience like? 

I actually found out fairly quickly. My symptoms started in April 2013. First doctor thought it was a stroke, second told me it was stress and of course they did MRI’s and blood tests, basic neurological exam and a stress test. Third doctor did an EMG. That was June 2013. Finally hearing someone say it out loud was initially a relief. That feeling didn’t last long.

In the ALS forum, you wrote about your decision to get a feeding tube in February. How has the operation changed your everyday life?

My first doctor told me I had to lose 15 % of my weight for him to order a feeding tube put in. Now understand, my first symptom was slurred speech and within days, difficultly swallowing. We had several issues with this doctor and clinic so we changed doctors. This was January 2014. He asked me several key questions, like; how difficult eating was, did I enjoy my meals or were they a chore, how did food taste, how often did I choke? He said his experience was that doing the feeding tube surgery earlier had better results. The stronger I was the better. We did it within two weeks of that appointment (February 10th). As of the end of May, I am no longer able to eat solid food at all. I have lost about 10 pounds but am currently maintaining well by having my supplement given to me overnight through a Kangaroo pump.

How has being a registered nurse shaped your perspective?

I’m not really sure except that I felt confident I knew what I had before any doctor was willing to diagnose it, and knowing what was ahead of me was frightening. It has made me good at being my own advocate. By being my own advocate, I mean when how I feel doesn’t coincide with what “the professional” is telling me, I speak up and or look for someone who will listen. We all know our bodies better than anyone else and every case of ALS is unique in some way. We have different symptoms, different rates of progression and some have pain, some don’t. Make sure you’re not being categorized. If what they say just isn’t what your gut tells you; speak up! Advocate for what you think is best for you and the way you want to deal with your disease. If you don’t speak on your own behalf who will?

What is one thing you have learned on your journey that you didn’t expect?

I have come to realize that our lives revolve around meals. We are all social beings, and we come together over food and drink. Not being able to do that is really a challenge and even makes the ones around you uncomfortable. Food is comforting and even though I have never been a big eater and I’m not ever hungry, I really miss the tastes and experience.

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Nola’s new bathroom

Posted September 11th, 2014 by

It’s rare that we’re surprised by the power of connection in the PatientsLikeMe community—we see members connect everyday and transform their lives through the exchange of information. This story extends beyond shared knowledge, though; it displays the powerful bonds of internet friends who offered truly life-changing support from opposite coasts. Below, listen to them tell their amazing story to our community moderators Sarah and Jeanette. Click to learn how Gary helped Nola regain her independence, her ability to clean herself, and most importantly, her dignity.

Nola (6.02x10e23) lives with progressive MS in California. In the past ten years, she’s gone from walking to slightly limping, to using a cane and then a walker. Now, she’s in a wheelchair and cannot use her right arm.

“I had to keep adjusting slowly how I did any little thing. How could I write a check? How could I make something to eat? Or get something to drink? Or just get to the bathroom and back? It’s constant change and you have to accept the change and learn how to adapt and try to still be able to get things done that you want done. You’re going to have do it in some very different ways that might be uncomfortable or absolutely undignified. But you have to do what you have to do.”

As her MS progressed, Nola discovered that the 6-inch lip at the bottom of her shower was an impossible barrier. She could get one leg up over it, but she could no longer pull the other leg in, which prevented her from being able to get into the shower to fully bathe herself.

She hired a contractor to build her a handicap-accessible bathroom, and paid half of the money up front:

“He started the project, but he got ill. He lost his regular job and eventually lost his home. I had paid him ahead of time half of the amount, but then when all of these terrible things happened to him, I went ahead and paid him for the rest of the job, even though he had hardly started. He really needed the money. He’d come every once in a while and do a little work. As he got more ill, it just became impossible for him.

It ended up that I still didn’t have a bathroom and I had lost quite a bit of money. I did not have the money to hire somebody else to do this. I wanted to be able to stay in my home, but it was getting to the point where I couldn’t even take care of personal hygiene.”

Nola went 6 years without a shower, until:

“Members of PatientsLikeMe that are in this one particular group with me, we’ve all become close friends over about maybe the past 5 or 6 years. We’ve always relied on each other for moral support. It was my place to complain a little bit. Everyone knew the story and they’d all been rooting for me and hoping that I could get this bathroom done. It had been over a period of 2 years of waiting and waiting.

Gary, here, who works at a Home Deport, 3,000 miles away, on the other side of the country, got this idea. Home Depot sometimes does these charity projects. He suggested that I find out if they might help me.

Gary (1955chevy) did indeed help Nola from his home in North Carolina. Check out the photos on Pinterest below!

We told Nola we’d share some tips and tricks she learned from her PatientsLikeMe community for others to learn from. With a number of different products and limited resources, it’s hard to know what to invest in. Visit this thread to see some of the suggestions Nola has for you and to add your own.

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“Treat the person, not the disease.” An interview with nurse practitioner Phyllis Zimmer

Posted September 8th, 2014 by

Family Nurse Practitioner Phyllis Zimmer has a Master’s degree in Nursing and is a Fellow at both the American Academy of Nursing and the American Association of Nurse Practitioners. It sounds like Phyllis always knew she wanted to be a nurse, but truth be told, Phyllis wasn’t sure what her career path would be until she decided where to apply to college. Then it all came together.

Read on as she describes her passion for nursing, her own experiences as a patient, and some of the important questions patients should ask their doctors and nurses.

You seem passionate about nursing. Why did you become a nurse in the first place?

The short answer? I don’t know. Maybe it has something to do with my years as a Girl Scout, and always wanting to make a difference in my life.

When I was in high school, trying to decide on a college, I told my parents that I wanted to be a nurse, but I had no idea where that came from. Years later, I found out that my paternal grandmother, great aunt and her sister were all nurses. My family has a wonderful photo of the three nurses wearing long, floor-length pinafores, watches around their necks, and winged nursing caps.

Then when I was an undergrad, I saw nurses in action and thought, “I want to do that!” So I became a nurse, then a nurse practitioner and have practiced as a nurse practitioner ever since.

Tell us about what it means to be a nurse practitioner.

As a nurse practitioner, you have a huge responsibility to provide quality care, but also an amazing entrée to patients’ personal lives. People trust you. They’ll tell you things about themselves that you’d never dream you would learn about another person.

I feel so honored when people are comfortable enough to share both the joys of their lives – the births, the experience of being a new parent, as well as the difficult parts of their lives – something they’re afraid of, a new symptom or disease they are coping with, a sexual problem. People talk about intimate personal issues: domestic violence, concerns about alcohol use or fears about death or dying. They trust me to listen and to help.

The nurse practitioner role blends what I love best about nursing – the advocacy for people, patient teaching, and patient-centeredness of my profession – and what I love about medicine: making the diagnosis (solving the puzzle of what the symptom or problem is), the clinical decision-making, providing treatment that is medicine.

I also like the level of autonomy nurse practitioners enjoy. I’m accountable and responsible for my own practice.

Do nurse practitioners specialize?

Yes. Nurse practitioner programs are offered in specific specialty areas – family medicine, pediatrics, adult/geriatrics, acute care, psych/mental health, and so on. The broadest scope of practice is the Family Nurse Practitioner, who sees patients for health and illness concerns across the age span. The Pediatric Nurse Practitioner, in contrast, sees only children.

Your specialty determines the scope of your practice. Nurses choose their nurse practitioner specialty based on where they are most comfortable and have the most interest. The data says that nurse practitioners do a great job, and offer high quality care regardless of specialty.

I began as an adult nurse practitioner, and when the masters program became available I went back for my master’s degree and chose family medicine because I enjoyed seeing both adults and children, and wanted the broadest scope of practice possible.

Can you tell us about an experience that really affected you?

Definitely. One of the most impactful experiences I’ve had was as a brand new grad. I’d only been practicing for a short time, and I was given a referral to see a woman who had been diagnosed with lung cancer.

After she was sent home from the hospital, I was assigned to do her discharge and follow-up care. The family decided that she was not to be told she was terminally ill. She’d been doing well, and she was able to care for herself and get around for a while. I visited about once a month to check on her.

As she got sicker, I did home visits more often. From monthly visits, I moved to every three weeks, then every two weeks, every week, then every day, and finally several times a day. We became close. The family wanted to provide her care themselves, so we moved a hospital bed into her home, she went on oxygen, and I worked with the family to support them in caring for her.

It was a slow, gradual, downhill course. I still remember the day when she and I were in her bedroom, talking. She asked me why her family wouldn’t talk to her.

I asked what she meant, and she said, “I know I’m dying.”

As a nurse, I was treading on delicate ground. I had specific instructions from the family—I couldn’t confirm or deny anything. So I tried to listen, and tried to be a coach for her and help her feel comfortable raising the question to her family directly.

It was hard for her to talk with her family. There were a lot of tears. But then, it got so much easier. Feelings of fear, sadness, anxiety, all were shared. They had opened the door to communication, and each family member had an opportunity to share their thoughts with my patient. These were important final conversations. I realized then that this is how end-of-life care should be.

I understand you had surgery. Why? What happened?

I found a mass. It turned out to be benign, but it was big and needed to come out.

Actually, I found it in the middle of the night, and I was shocked. My husband’s a doctor, but I waited until morning to tell him and then went in for tests to find out what it was.

I was just like some of my patients – I didn’t want to deal with it!

School was restarting. I had a million things to do, with teaching and practicing. I thought maybe I could manage the problem medically for a while. That lasted a few months, and then I had a period of time where I had more pain than I’ve ever had in my life. So, two days after school got out, I had surgery.

I was scared to death.

I imagined not waking up from anesthesia. So I talked with the surgeon and the anesthesiologist and asked if there was any way to avoid being intubated and having general anesthesia. They said they might agree to do just an epidural instead of general anesthesia.

For me, that was the lesser of two evils. The choice was being intubed and having a longer recovery versus having an epidural (an injection into the spinal area), with a shorter recovery but being awake during surgery. I got the anesthesiologist and the surgeon to agree to the epidural. The biggest advantage of the epidural was that I had an incredibly speedy recovery, and I felt more in control. I also conned my hubby to be in surgery with me – and we talked during the procedure, which I found very comforting.

But there were definitely moments when I felt I had no control- and I was afraid. And the entire procedure of having surgery is tough. You feel a loss of privacy, you feel embarrassed. The gown is open at the back, and so you feel exposed, even though everyone tries hard to keep your modesty intact. You may need an IV or a catheter, or some other procedure to “prep” for the surgery, and you have to deal with it. In my case, everyone tried hard to be respectful and explain things, which taught me how much we, as patients, need that kind of support.

The only really negative part was that they asked me in admitting if I wanted to be an organ donor. I don’t think you should ask someone that on the day they’re having surgery!

Do you think your nursing background helped prepare you to be a patient?

All of my nursing experience is in outpatient care, and the hospital environment is very different. But, yes – it made the difference in helping all the parts come together. I knew a lot of what to expect from admission, to the surgery, and after. When you’re the patient and you have monitors beeping and IVs in your arm and you feel very vulnerable. But being in nursing helps you feel a little more in control. For example, I knew my discharge plan. I felt ok and not weak and dizzy, and I could do some things on my own. I knew what I couldn’t do when I got home. I had clear written instructions and knew who to call if I had a problem. I went home in 24 hours instead of in several days. My nurses made sure I could go to the bathroom, could walk and not fall over, and was able to eat and drink.

What were your nurses like?

I had three different nurses caring for me, and each had a distinct style. One was an older, really experienced nurse with a very “cut and dried” approach, and she was great. She got things done. One was younger, newer to the profession, sweet, very kind and caring. The third was a wonderful Irish nurse with a darling brogue. She was a blend of the other two, and she had a great sense of humor. Each of my nurses brought something different to my care. They all were competent and inspired trust.

And, my Mom came and sat in the room with me and read a book or knitted or whatever. She wasn’t talking with me much, but as a patient, it was hugely reassuring to have my Mom there. It made me think: As a nurse, do I welcome a family member, help them know what they can and can’t do?

How did your own experience change your practice, if at all?

My nursing career began as a public health nurse, and that background makes you think about care in the broadest sense- public health nurses look at community and family variables as well as the issues for the individual patient. I’ve always had that “holistic” mindset. But being the patient yourself, experiencing the fears, the questions, the difficulties of doing what you are supposed to do when you don’t feel well, makes you practice differently. I think it makes you more understanding, more empathic.

When I think about all the things I’ve learned as a nurse, and my experience as a patient, the most important lesson for me is to treat the person, not the disease. And remember that each person has people in their lives, family, friends, partners, etc., who are concerned about them. The patient needs care, but so do those who love that patient. They need attention as much as the patient does. My experience made me even more aware of how valuable nursing can be – the truly important role that nurses play in patients’ lives each and every day.

What advice would you give patients, from a nurse’s point of view?

I’d tell them, “Ask questions and make sure you understand all your options.”

If you’re given only one option, it’s not enough. Ask what the full range of possibilities are, and what are the pros and cons of each approach.

Personally, I’d ask: What is your best advice for me as a person, and why do you say that?  In other words, the best for me, not someone else. If I were your sister or mother or wife or friend, what would you advise?

The more you know, the better. Don’t be afraid to ask questions. If they use a word or name a med you don’t recognize, you absolutely have a right to know. It’s your body, your life, and these are your decisions, not our decisions.

My job is to support your choice. I don’t always have to agree with my patients, but I think I do owe them information about why I don’t agree. As a patient, you trust your health and well being to our care. It’s my goal to always be worthy of that trust.

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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/


Throwback Thursday: Jamie talks about the future of medicine

Posted September 4th, 2014 by

It’s Throwback Thursday, so today we decided to share a talk our founder, Jamie Heywood, gave at the Government 2.0 Summit back in September 2009. He spoke about how we can better answer this question for patients:  “Given my status, what is the best outcome I can achieve and how do I get there?”  Watch what else he had to say below:

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Food for thought: August edition

Posted August 28th, 2014 by

Are you trying to lose weight in time for the fall? Or are you hoping to gain a few pounds instead? Weight fluctuation is a part of everyone’s life, and PatientsLikeMe members have been sharing about their weight management in the forum, everything from the Primal Blueprint 21-day diet to alternative substitutes for pasta and carbs. Read what everyone is saying.

“Finished my first week on the diet, I lost 3 lbs and my psoriasis is not as bad, it has cleared up a little…I do miss carbs though.”
-IPF member

“I think I would very much like to increase my fiber intake in the form of soup made of tolerated vegetables. I think soup will be much more easily digested than some other ways of increasing fiber and maybe cause me less problems, I hope.”
-MS member

“I’m Italian, so that’s a major problem with Type II! I can’t go very long without a dish of pasta. Does anyone have a REAL suggestion for a substitute? Or am I going to have to tempt the fates once a month or so and have a dish of pasta? I tried spaghetti squash. It was like eating shoelaces!”
-Diabetes type II member

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And don’t forget to check out our other Food for Thought posts if you missed them.


Results! PatientsLikeMe diabetes members share about challenges and concerns

Posted August 25th, 2014 by

Earlier this year, more than 450 PatientsLikeMe members from the type 1 and type 2 diabetes communities took part in a new survey from our partners at Kaiser Permanente Colorado’s Institute of Health Research. (Thank you all for adding your voices!) Members shared about everything from the day-to-day challenges of living with diabetes to the difficulties of communicating with their doctors.

 

This is real-world, patient reported health data doing good; helping others living with diabetes learn more from people just like them and showing researchers where to focus their efforts in the future. Click here to view the results.

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