Meet Gus from the PatientsLikeMe Team of Advisors

Posted November 24th, 2015 by

Say hi to Gus, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Gus is someone who’s been very competitive and focused, has always felt that there was nothing he couldn’t accomplish or overcome, and spreads positivity wherever he goes. So when he was diagnosed with familial ALS, positive SOD1 gene – unknown variant, in May 2013, it’s been difficult both mentally and physically.

But even though it takes every bit of his energy, he refuses to waver. Over his 30-year career in the automotive industry, Gus enjoyed helping people – and now he’s bringing that calling into his new role as an Advisor and how he lives with his condition. He looks forward to bringing his positive energy and thoughts to anyone and everyone.

Here he talks about his greatest obstacles and has some sage words for those newly diagnosed.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Being told you have an incurable disease sets you back ten steps. I thought, I had it all figured out and then this happens. I had worked so hard and was mastering my craft, teaching others through examples and walking them through the processes. I talk about my career because I was focused and determined to succeed. Not only for my family, but all those who believed in me through vision and aspirations. I enjoyed having fun, and being with those who enjoyed life. I miss the Friday night dinners and dancing until midnight. My workouts, running 4 miles every other day with my son releasing the tension and anxiety, it would clear my mind and would help me refocus my thoughts and follow-throughs. And how my family felt, their thoughts and concerns hurt the most. I believe whatever happens in the future will be even better, why do I say that because I have faith and their is no other person like me, Mr. Optimistic, bad habits are hard to break. I believe what we are doing now will create the compassion and awareness world wide. We are not alone.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

I would say, listen and take it all in. Give yourself as much time to absorb everything. Understanding everyone is different and reacts differently. Your caregiver or partner will have as much or more input, simply because your thought process will take time. Have an open line of communication and don’t hold anything back, your concerns and how you are feeling mustn’t be held inside. Together and with family support will help you get through this. Have an open mind to trying different types of medical treatments. Your diet, is critical, and a holistic approach would benefit greatly.

How important has it been to you to find other people with your condition who understand what you’re going through?

It’s very important, simply because you can share your treatments or how you are dealing with it. Patient to patient interaction is vital and paramount, sharing your thoughts and concerns are key. Just talking to someone with the same illness you feel a sense of ease. It hard to describe but they know and understand exactly what’s happening. And for me, it’s half the battle I thought at the beginning it would be difficult but it’s not. So, I will run into the next question just a bit. PatientsLikeMe, and how wonderful this amazing site/ forum has helped me connect with those living with the same illness. Sharing our thoughts and treatments, and stories great stuff.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

As I mention earlier, this site/forum is my medicine where I can share how I’m feeling everyday, your physical body and mind. It’s the best thing out there, no other site or forum compares to this site. Sharing your stories and what treatments have worked or not, getting real answers and asking the tough questions only to be answered by those living with this illness. A site, filled with so much information and helping you follow your own health chart. And tracking and inputting your conditions will help others on the site as well. Your words uplift others like no one else can, because they see themselves in you. I call it sharing your “wins” and then counting them each and everyday, reminding yourself of what you have accomplished. Positive in and positive out.

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More than heartburn: GERD awareness around Thanksgiving

Posted November 23rd, 2015 by

To a lot of folks, this time in November means a holiday feast with all the trimmings – turkey, stuffing, mashed potatoes, pies and other rich foods. But for people living with gastroesophageal reflux disease (GERD), it might mean something different.

Today marks the beginning of the 17th Annual GERD Awareness Week (November 23-29). GERD is a common disease spotlighted each year during the week of Thanksgiving.  The International Foundation for Functional Gastrointestinal Disorders (IFFGD) first designated GERD Awareness Week in 1999 to raise awareness for increased research and understanding of the condition.[1] Chronic heartburn is the most common symptom of GERD, but there are several less common symptoms associated with GERD that might arise during the Thanksgiving holiday.

Digestive Health Alliance (DHA) has outlined several ways you can get involved and spread awareness during GERD Awareness Week, and the DHA – as well as IFFGD – have several available resources if you’re looking for more information about the condition.

During GERD Awareness Week and all year long, you can connect with more than 4,000 others in the PatientsLikeMe GERD community. Read others’ personal stories about GERD in the Digestive and Intestinal forum and connect with others by sharing your own story.

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Natalie shares her story as caregiver for her mother with Alzheimer’s disease

Posted November 21st, 2015 by

Natalie (center) with her mother, Maxine (left) and her mother-in-law, Pam (right).

When was your mom diagnosed with early-onset Alzheimer’s disease? What was your mom’s diagnosis process like for you, for your mom, and for the rest of your family and friends?

My mother, Maxine, was diagnosed with early-onset Alzheimer’s disease in April of 2010. She had been living on her own for about one year, following her separation from my father. We both started noticing drastic changes in her attention to detail, motivation to work, cleanliness of her home, etc. and were concerned for her well-being. It wasn’t until she started not answering her phone that we insisted on a change. She simply didn’t want to speak to anyone, because she herself couldn’t understand the changes going on with her mentally, and wouldn’t know how to explain herself. For outsiders, it looked like disinterest, depression and laziness. For myself and my father, we knew something larger was the problem.

What is one thing you learned about yourself as a caregiver for your mom? 

Caring for my mom has taught me so much – and hindsight is 20/20. However, I have found that my resiliency, despite challenging situations, is far stronger than I have ever given myself credit for. When people ask ‘how did you do it?’ I simply reply with the most honest answer I can – There was no other option.

How long and how often were you caring for your mom?

When my mother was diagnosed, the legal implications of her inability to care for herself came to light. Since her and my father were divorced, the State of New Hampshire would have taken control over her finances, healthcare decisions, etc., had there been no one else deemed a responsible party. And at age 20, I was not the ideal candidate. However the thought of the alternative was not something I could bear. Court appointments and legal requests for guardianship took months. When I was finally named her legal guardian, I took on a larger role in her care than I had expected (but was committed to fulfilling as long as I was needed). Additionally, I was her secondary caretaker, traveling from Boston to New Hampshire every weekend on Saturday mornings and returning back to the city on Sunday nights. I cooked, grocery shopped, cleaned the house, did laundry, refilled her medications, paid bills and made sure the caregiver schedule for the following week was set. It was a routine that was well-oiled, but didn’t leave a ton time for the typical weekend ‘R&R.’

How did you balance being a caregiver for your mom with other obligations (work, relationships, planning your wedding, etc.?)

At the time of my mom’s diagnosis and while we moved her back into the home I grew up in, I was an undergraduate at Northeastern University. I would travel back and forth from the city to the coast of New Hampshire to be with her and relieve my father and the other caregivers each weekend. Meanwhile, I was a live-in nanny for a family of three, whom I would care for during the week when I wasn’t at class. I also was just starting a new relationship with my now husband. For the next few years, that was my life. I spent more time in my car than I did in my bed. And while my friends were partying each weekend, I just simply wasn’t around. My priorities were so far removed from those of my age, and I was okay with that. After I graduated and started working full-time, her disease was quickly progressing. Instead of spending Friday nights with my boyfriend (at the time), he would come home with me and help. Once we were engaged, we knew we wanted to move quickly in hopes that she could see me get married. That was the light at the end of the tunnel.

Throughout your mom’s illness, what moment stands out to you most?

Natalie’s mother, Maxine.

A goal that was shared by my father and I was singular and authentic – we wanted to keep mom at home for as long as we were financially and physically able to. Luckily, we spent her money right and found so many helpful resources that were available to us – like the Rockingham VNA and Hospice. Despite her illness, my mom was never without someone by her side that truly loved her – a luxury that many others in a similar situation aren’t privy to. We are so grateful we were able to achieve that goal and to care for my mother at home, even until the day she passed. Selfishly, the moment I remember most vividly in my mind was having her at my wedding, just a month and a half before she passed away. That memory stays with me, and reminds me of something truly magical, even on my most difficult days.

What advice would you give to other caregivers trying to take care of a parent or loved one?

Don’t try to do it all on your own. You will reach a breaking point, and you won’t have the energy to pull yourself back together. Ask friends and other family for help. Have someone come over to relieve you for a few hours so you can shower without worrying the house will catch on fire (yes, I’m not kidding – things like this fall by the wayside). Be honest with others about your situation, because more often than not, they would love nothing more than to help.

If you’re caring for someone living with a chronic condition, you can connect with others who understand what you’re going through on PatientsLikeMe. You can also connect with others in the growing Alzheimer’s community on PatientsLikeMe.

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Meet Allison from the PatientsLikeMe Team of Advisors

Posted November 20th, 2015 by

Meet Allison, one of your 2015-2016 PatientsLikeMe Team of Advisors. Allison is living with bipolar II, has been a PatientsLikeMe member since 2008 and is a passionate advocate for people living with a mental health condition. Refusing to let her condition get the best of her, she partners with her family to self-assess her moods and tracks her condition on PatientsLikeMe where she’s been able to identify trends. She also gives back to others through her advocacy work on the board of directors of the National Alliance on Mental Illness (NAMI) in Dallas, where she lives, and currently with the Dallas police, helping train officers with the Crisis Intervention Training (CIT) program. Additionally, she works with the Suicide Crisis Center of North Texas helping to implement a program called Teen Screen and has shared her story of living with mental illness to groups and organizations all over the state of Texas. She even testified to the Texas State Legislators about the importance of mental health funding.

A former teacher, Allison is going to graduate this November with a master’s degree in counseling. Sharing about her journey with bipolar II has enabled her to live a life of recovery. This has also fueled her to empower others to share their own stories.

Below, Allison talks about her journey, advocating for herself and reaching out to others.

How has your condition impacted your social or family life?

Living with bipolar/mental illness has had a huge impact on every part of my life, social, family and work. My family has had to learn (along side me) how to cope with my changing moods. My moods do not change instantly but they can change within the day, week or month. When something triggers a mood change for me, and that trigger can be unknown, my physical demeanor can change. When I show physical signs of changing, such as withdrawing and I am starting to isolate (a sign of possible depression) or when my speech picks up and I start to lose sleep (a sign of hypo-mania) my family will ask how I am feeling, without being judgmental, as a way for me to self evaluate my moods. I have lost many friendships due to my depression. When I have isolated for months at a time some of my friends have stopped coming around. Nobody calls. It seems like I have nobody in the world to turn to and that just adds to the darkness of depression. I have learned it is my responsibility to let people know what I am going through so that they can be there for me when I need them most. The hardest part of this is letting people know that I live with this thing called bipolar and I need help from time to time. It is very frightening to be vulnerable because I do not know if people will be willing to stay with me through the ebb and flows of my illness.

Recount a time when you’ve had to advocate for yourself with your provider.

There have been a few times that I have had to advocate for myself while living with bipolar/mental illness. The one time that I will never forget and took the biggest toll on my well being was dealing with my insurance company. There is a medication I take that is VERY expensive and there was not (and still not) a generic form of this medication. There is however a medication that is in the same family/class as the one I need to take. The problem is, I DID take that other, much cheaper, medication for an extended amount of time and found myself in a mixed episode (when I was hypo-manic as well as depressed at the same time) and I was close to hospitalization. My doctor wanted me to try a medication that was fairly new on the market. To my surprise it was the medicine that worked for me. I became stable and life was good for a long time. Earlier this year (2015) my insurance company wanted to put me on the older medication, due to the price of the current drug. I explained the problems and asked that they reconsider their decision. I was devastated when then informed me that I would HAVE to go back to the old medication or pay out of pocket for the newer medication. My husband and I decided to dig deep into the wallet for a month and purchase my medication while attempting to appeal the insurance companies decision. We lost the appeal so I went back to the medication they chose for me (because I could not afford the monthly cost of the newer drug). It was no surprise when I started to feel the effects of the cheaper medication and felt like I may end up in the hospital because the depression was getting too bad for me to live with. I made another appeal and this time they told me the expensive drug was out of stock but when it became available I could have it. With relief in the air I dug into my wallet, yet again, to purchase another month of the newer drug to get me started until it became available. To my dismay they told me it was STILL on back order from their distributor. I am fortunate enough to have a friend who is a pharmacist in that part of the country, so I called and asked her. She did the research and found out it was never on back-order, but there may have been a recall for a different dose many months earlier and that should NOT have effected my request. I immediately contacted my insurance company with the facts I found out through my research and without question, I had my (expensive) 90-day prescription delivered to my door the next day with signature required. There were no questions asked. It infuriated me that I had to do that much work and put my mental health / well being in jeopardy for the sake of the dollar. Not everyone can advocate as I had to do, so when I can I will step up and help those who struggle and do not see a solution to their problem. I know how that feels because there was a period of time I did not feel there was an answer to my problem until I had to be creative and advocate.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?  

Words cannot explain the importance and the role PatientLikeMe has played in my well-being while living with bipolar and mental illness. I do not even recall how I found PLM in 2008, but when I did I started my work right away. I started charting and graphing. I have to say, part of it was because it was fun to see up and down on my graphs after a few days. Then it was a challenge to get 3 stars. When I fell to 2 stars I was frantic to get my 3 stars back and then it started to really come together for me. I started to see my actual mood cycles. After a few years I started to recognize my mood cycle in March and it is a time of year my doctor and I start to become proactive ahead of time. After all of these years I cannot possibly remember when I took a medication or why I stopped taking it. Now I am getting much better at giving myself better details about each medication, which in turn helps the community, as a whole, learn more. PLM has supported me emotionally by standing by my side as I do fundraising walks in my community for mental illness and suicide prevention. PatientsLikeMe has made generous donations on my behalf, sent team shirts for us to wear and in return I have been able to spread the word about PLM and what a difference it makes to me and thousands of others. I feel honored and blessed to be on this year’s team of advisers. I want to help make a difference in the lives of others, like PLM has done for me.

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“I am not a quitter, I never have been” – An interview with lung cancer member Jacquie

Posted November 19th, 2015 by

Jacquie today.

For Jacquie (Jacquie1961), a business owner and entrepreneur from New Mexico, 2013 was the worst year of her life – she’d lost two beloved pets to old age and then was diagnosed with lung cancer, which soon turned into colon cancer. After rigorous chemotherapy and the adoption of a new dog, Roman, Jacquie joined PatientsLikeMe this past

Jacquie in September of 2013, shortly before her diagnosis.

September and has been sharing her positive, never-back-down attitude with the rest of the community. We took time to connect with her recently and this is what we learned…

Tell us a bit about your life.

After a long career of juggling my own real estate firm and landscaping company, I decided to obtain my esthetician’s license in 2011. In late 2012, I opened a spa for skincare. It was in 2013, as I was building up my new business, that I got my first diagnosis of lung cancer.

What I didn’t know was that I also had cancer in my colon that went unnoticed by the first oncologist I had. I was getting sicker by the day, losing more weight, but no one even did any blood work on me or examined me for five months. I asked about chemo and was told every month that my doctor hadn’t decided on that yet. After Christmas of 2013, my parents urged me to change oncologists.

Jacquie with her boxer, Roman.

Because I was severely anemic, I spent a month and a half getting blood weekly before I could have a colonoscopy under the care of my new oncologist. In March of 2014, I was diagnosed with stage 4 metastatic lung to colon cancer. My surgeon told me that there were only 12 documented cases of lung to colon cancer and the prognosis for life expectancy was not good. I had the colon surgery with resection and started a hellish year of chemo. It wasn’t until May that I closed my business because my job was now to save my life!

I have a new dog, a Boxer named Roman. He is my rock! He’s a rescue and came into my life at the right time. He gave me a reason to get up in the mornings, take short walks, laugh and have a constant companion as most of my time was spent in bed if I wasn’t at chemo or the hospital or a doctor’s office. I never had children so animals to me are my family. The only good part of 2013 was finding Roman.

Jacquie and her father on her wedding day.

How has your life changed since your diagnosis?

Wow, I have to say I am not the same person I was before I was diagnosed and gone through everything I did. I don’t think anyone can. I find myself less tolerant of people who complain about the smallest of things like burnt cookies because they don’t matter.

Material wealth means nothing to me anymore. I lived well, worked hard and made good money. Now that is not that important to me. I’ve had all that and lost it due to cancer. And anyone’s life can be changed on a dime. So cherish what you have now, enjoy life and create memories. And take care of your health.

I am also now in the process of starting a new business with my father – a pawn and antique shop. It’s coming along slowly, but we’ll get there soon to open.

Cancer is a mentally and physical life altering journey. Mine was pretty extensive, but I am sure there are a lot of other women and men who can identify with this. If you approach it with knowledge and a positive attitude the transitioning is much easier.

In 2013, Jacquie was recovering from lung cancer surgery and her family wouldn’t let her be without a Christmas tree. Knowing her love for the ocean, they brought her a white tree. In 2014, after recovering from lung and colon cancer, Jacquie added 2 smaller trees as symbols of her strength in fighting cancers.

I lost all of my hair head to toe in the first few treatments of chemo, but I made it work with hats and an assortment of wigs. Cute hats, wigs, and learning ways to use makeup can make a huge difference in how you see yourself and how you feel about yourself. I still went to charity dinners, events, and I’ve done several fashion shows for cancer even on chemo. No one was the wiser that I was even wearing wigs. I never liked looking at myself in the mirror but accepted it as part of my “job.” My hair is growing back in and I’ve gone out in public. It’s not me at all, but it’s who I really am right now.

Now is the part where I pick up the pieces and put myself back together. How do I deal with the hair growing back? I let it breathe, use some cream to style it and a headband. I wear my wigs or a cute cap when I am running errands. I am trying to put together a monthly course to teach women how to apply makeup and wear scarves. I am lucky that I already have the experience, but it surprised me how many women do not know what to do with themselves so they stay home. Not right…Getting cancer is bad enough but having to feel ugly shouldn’t be part of it.

You mention that you had to be your own advocate with doctors. What would your advice be to others who must advocate for themselves?

As I explained above regarding my first oncologist, I learned from that experience that I better watch out for myself. I didn’t have anyone who had experience with cancer to tell me what to do. Having been through this and seen the mistakes made with my care, I’m adamant that if something is not right with me or I don’t feel right I talk to my doctors about it. I read every scan and I ask questions. Doctors are very busy and it’s easy to get lost in the shuffle. Keep a file with all of your tests. Keep a journal of things you need to have done. I know every three months I have to have scans and a colonoscopy. I often have to remind my doctor that it’s time. Keep track of your scripts as well.

You’ve said in a recent forum post that you’re “a firm believer in keeping up a fight even in the face of adversity.” What keeps you going? And how would you encourage others in your situation to keep going?

I am not a quitter, I never have been. Even given a diagnosis I may not live very long, I was sure to prove the doctors wrong. And yes, I am still here. I was ready to start living life again and then recently hit another bump in the road with a diagnosis of coronary artery disease. My cardiologist will decide whether to put in stents or do bypass surgery. Okay, whatever it takes. And now, I’m also supporting father – my best friend – through his first experience of chemo. After a bout of bad health, I took him over to my doctor and she diagnosed him with non-hodgkins follicular lymphoma stage 4. Since I’ve been through this, he is now my patient.

This August, Jacquie modeled for a local cancer charity, CARE. All funds raised go to people of her town for assistance with bills and medical expenses.

Some days I think my world is falling apart, but I still keep going. I think there is more work for me to do on this earth and God picked me to do it. I’m not a religious fanatic by any means but I have had a world of prayers around me. Everyone is different in how they handle traumatic and life-changing events. I try to tell people to find strength within, that there is light at the end of the tunnel. I see the beach at the end of mine and know I will get there someday soon. People need goals, baby steps – and remember that tomorrow is another day. Every morning and day is a gift that was not promised. Take that gift with gratitude. And spread it!

It doesn’t have to be a curse or a death sentence. It is an illness. You’ll have good days and bad days. If people find themselves depressed or anxious and unable to cope there is help. Find a support system, a therapist, a best friend, a forum like PatientsLikeMe. Surround yourself with positive people. You are a survivor and that is something to be very proud of. I have a group of friends and we call ourselves the Warrior Women. We are a tough group who’ve fought the beast and we are winning.

You’ve been very supportive to other members in the PatientsLikeMe forums. What has been your experience on PatientsLikeMe?

I’m very glad that my mother actually told me about this site. It makes me feel good to think that just maybe I can help someone else because of my experience. Or maybe I know of some way that their journey will be easier on them. I’ve enjoyed conversing with several other women. I’ve also learned more about lung cancer than I knew before through others’ experiences and how they are dealing with it now. I know it’s better and helpful to talk or converse with others who’ve experienced the same thing you have or similar. It’s hard with family and friends as I believe one can’t truly understand what you have been through unless they have gone through it themselves. PatientsLikeMe brings like-minded people together.

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The Schwartz Center for Compassionate Healthcare names their National Compassionate Caregiver of the Year Award recipient

Posted November 19th, 2015 by

Last night, our partners at the Schwartz Center for Compassionate Healthcare announced the recipient of their National Compassionate Caregiver of the Year (NCCY) Award, a national recognition program that honors outstanding healthcare providers who display extraordinary devotion and compassion in caring for patients and families.

Of six nominees, this year’s NCCY Award recipient is Rick Boyte, MD. Dr. Boyte currently serves as a physician and division chief of pediatric palliative medicine at Batson Children’s Hospital at The University of Mississippi Medical Center, and is responsible for starting the pediatric intensive care unit and forming the palliative care team at the hospital. Dr. Boyte also chairs the hospital’s Ethics Committee and leads its Schwartz Center Rounds® program.

“Dr. Boyte listened to us and got to know us and our heart’s desires for our precious daughter,” said a patient’s mother. “He was sensitive to our every emotion, from joy, celebration and hope, to sorrow, grief and pain. He supported us in unimaginable ways. And I’m sure he would say he was just doing his job.”

During his remarks at the dinner, Dr. Boyte conveyed that the ability to express compassion is within all of us. Compassion always matters and can make a profound difference for patients. And to Dr. Boyte, his patients have always been his greatest source of inspiration. “I share this honor with my colleagues back home, and I also share it with those who most inspire my work—my patients and their families,” said Dr. Boyte. “They are my heroes and the most courageous people I’ve ever met. They’re just getting through their lives. And the love and devotion I’ve seen from families is amazing.”

We featured all six finalists on the PatientsLikeMe blog. In case you missed it, check out Dr. Boyte’s full story.

If you have a caregiver you’d like to recognize, stay tuned for nominations for the 2016 NCCY Award, which will open early next year. If you’d still like an opportunity to say “thank you” to your caregiver, learn more about Schwartz Center’s Honor Your Caregiver program, which celebrates everyday acts of compassion.

You can also join in on the forum conversation and share about a time when you received compassionate care from a healthcare provider.

Let’s celebrate compassionate care, together.

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Getting “Patients Included” right Part II: Planning a patient-centric event

Posted November 18th, 2015 by

You may remember Part I of this blog that focused on the experiences of two PatientsLikeMe members who attended the Kidney Health Initiative’s (KHI) workshop, “Understanding patients’ preferences: Stimulating medical device development in kidney disease,” back in August. KHI is a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN). We recently spoke with patient Celeste Lee and Frank Hurst, MD, Medical Officer, Renal Devices Branch with the FDA, about the planning and consideration it took to make this event “Patients Included.”

While this was the first patient-centric event KHI has held, they’ve worked to include the patient voice in all aspects of the initiative. Kidney patients and kidney patient organizations are represented on the KHI Board of Directors, and this past year the KHI Board of Directors formed a KHI Patient and Family Partnership Council (PFPC) made up of only patients and their caregivers. The PFPC helps provide strategic guidance on how to engage and include patients, their families and care partners in KHI activities.

Celeste has had kidney failure from an autoimmune disease since she was 17. She’s been an advocate for decades and is now focused on patient-centered care. Celeste is also a board member on the inaugural PFPC and helps review potential projects from a patient and family member viewpoint.

“The way KHI works is that it brings everyone to the table – researchers, industry professionals, patients – and we ask what is it that we can do to improve research and clinical trials and ultimately, patient lives. We do this through specific projects like this workshop,” she says.

Involving patients from the get-go

As part of this particular workshop, KHI wanted to hear patients’ ideas and preferences on new devices to manage kidney disease. Before anything, though, they had to create an event that would provide the greatest value to patients that attended in person.

When we asked Frank and Celeste what goes into planning an event like this  they shared how they think it can be centered around the patient:

“Involving patients early helped us to realize the need to broaden efforts to educate patients on the topics of interest prior to having the workshop. This proved to be a critical step in the planning process,” says Frank.

“We realized it would save time to educate prospective attendees about the new devices via webinars before the workshop,” explains Celeste. “We ended up taking a three-step approach that started with a quick engagement video talking about what we wanted to do. We distributed this throughout the whole kidney community. At the end of the video, there was an invitation to sign up for the webinars. After the webinar we said – now we are going to have a day and a half workshop and we will provide travel grants. Over 50 travel grants were given, funded by KHI so patients could come from all over the country.”

Frank notes, “Although patients are medical device consumers, they rarely have an opportunity to influence products that come to market. The success of a new medical device is based on many factors, including the usability by patients. KHI provided a forum, which allowed stakeholders to hear about ideas and potential solutions directly from patients.”

Looking at it from all angles

While the main consideration was making sure KHI had set clear expectations to patients who attended from the onset, there were additional logistics to consider for the workshop to be as patient-centric as possible. The workshop agenda was arranged around patient treatment schedules and incorporated dietary considerations when planning the menu. Because some attendees are on dialysis or live with transplants, they needed volunteers on hand. KHI planners also made sure to ask for patient feedback throughout the entire event and had scribes in position to record it. This feedback was ready to be shared at the workshop’s closing and will be sent out in an executive summary as well.

“Patients especially enjoyed the small group sessions,” Frank says. “These were multi-stakeholder breakout discussions which tackled important questions such as unmet needs, device areas that need improvement, making clinical trials more patient-friendly, and assessing ways for patients, industry, and regulators to communicate and share feedback.  These sessions included many lively discussions where patients felt empowered to share ideas and come together to propose solutions.”

Patient advice for a patient-centric event

Celeste has simple advice for other organizations that want to have this level of patient inclusion in their events. “I think you start off with a really good planning team that includes patients so that they’re there to help figure out the challenges of bringing that population together. Most importantly – you need to prepare people to be a part of it. You’re not going to get anything of value if people come in cold. It’s about the patient being able to draw on their experiences to help move research forward so if they understand what’s expected of them going in, then the outcomes will be more valuable.”

Frank adds, “It is also important to consider the spectrum of the disease, and ideally include patient representatives from across the spectrum as they could have very different needs.”

“Then,” Celeste says, “the next step is getting them to share the developments within the greater community. Once patients are educated and engaged, they become empowered.”

For a look at the KHI’s 3-step plan, check out this presentation they shared with us! And of course, don’t forget to visit the site and connect with the more than 1,000 other PatientsLikeMe members living with chronic kidney disease.

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Compassion for all: Terry Yoas, CNA – Schwartz Center NCCY Award finalist

Posted November 18th, 2015 by

Tonight, the recipient of the National Compassionate Caregiver of the Year (NCCY) Award, from our partners at the Schwartz Center for Compassionate Healthcare, will be presented to one of six nominees at the 20th Annual Kenneth B. Schwartz Compassionate Healthcare Dinner in Boston. 

Today we’re highlighting the sixth and final nominee for the NCCY Award. We’ve already introduced five of the nominees, including Rick Boyte, MD, Melody J. Cunningham, MD, Cheryl D. Kane, MEd, BSN, RN, Krista Nelson, MSW, LCSW, OSW-C and Jayne O’Malley, BSN, RN, OCN.

Terry Yoas, CNA
Santa Rosa Memorial Hospital (Santa Rosa, California)

“He ensures the dignity of our patients by going the extra step to make a connection with each person at an individual level.” – A colleague

Terry Yoas is well known for his cheerful Hawaiian shirts that have become his trademark and working uniform as a care partner at Santa Rosa Memorial Hospital’s oncology unit. For the past 16 years, Terry has created and continues to establish a welcoming, safe and caring second home for cancer patients and their families. Although becoming a certified nursing assistant was something Terry pursued later in life, it seems he was always destined to find his own home at Santa Rosa Memorial Hospital, where he was born.

“I feel like I didn’t choose oncology, oncology chose me,” says Terry, who believes that every encounter with a person is a chance to make a positive difference in that person’s life. “If you’re doing it right, you’re going to get just as much out of caring for that person as that person is going to get from you.”

For Terry, this isn’t just his job—caring for others is something he loves to do. He finds ways to connect with every patient, learning their personal story and listening attentively to their needs.

“Terry made it possible for me to start to step out of my depression. He gave me hope,” says a patient.

Terry also has a knack for remembering the small details that can make a big difference, like determining how a patient likes her coffee and having it ready each day. During his time off, Terry often comes to sit with patients who are having a rough day or at the end of life, or stops by the ICU to comfort patients and families who have been in his care and whose condition may have worsened.

“He instills hope through his gentleness, humility and the ever-present joy and pride with which he performs his work,” says a colleague. “Terry treats each person for whom he cares like a member of his own family.”

Over the years, Terry has formed many bonds with his patients and families. One poignant example of compassion was the time Terry came in on his day off to fashion a customized wheelchair with his own tools for one of his patients who had become increasingly dependent on IV medications, which made it a challenge to leave the room. After some teamwork and ingenuity, Terry and his patient rigged together a wheelchair that could carry all of the necessary medical equipment. Together, they wheeled to the healing garden and creek to enjoy the outdoors. Terry will never forget the big smile on this patient’s face, because to Terry, “compassionate care is the only kind of care.”
Stay tuned for the winner of the NCCY Award, which we’ll share on the blog tomorrow.


Let’s celebrate compassionate care, together.

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#ChatActChange: empowered to chat, act and make change – together

Posted November 17th, 2015 by

On October 28, Sally Okun, our Vice President for Advocacy, Policy and Patient Safety, participated in a Twitter chat – using the hashtag #ChatActChange – aimed at empowering people living with chronic conditions to advocate for policy change. Hosted by Diabetes Social Media Advocacy (DSMA), other chat participants included policy expert Susan Dentzer, Diabetes Hands Foundation and Novo Nordisk.

The chat generated some great conversation about what it means to be an empowered patient. 186 people joined the discussion, including patients, diabetes influencers and policy experts. 2015-2016 Team of Advisors member Christel, who is living with type 1 diabetes, took part in the chat, as did the American Diabetes Association.   

More than 500 users were reached with the #ChatActChange hashtag, and there were more than 1,154 tweets during the one-hour Twitter chat.

To check out a complete summary of the chat, take a look at this Storify. You can also contribute to the ongoing conversation on Twitter using #ChatActChange.

Let’s be empowered to chat, act and make change – together.

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Compassion for all: Krista Nelson, MSW, LCSW, OSW-C – Schwartz Center NCCY Award finalist

Posted November 16th, 2015 by

Today, we’re happy to introduce the fourth of six nominees for the National Compassionate Caregiver of the Year (NCCY) Award, presented by our friends at the Schwartz Center for Compassionate Healthcare. We’ve already featured Rick Boyte, MD, Melody J. Cunningham, MD and Cheryl D. Kane, MEd, BSN, RN. 

Krista Nelson, MSW, LCSW, OSW-C
Providence Cancer Center (Portland, Oregon)

“She finds power and strength in her patients. She works with them to maximize their strengths so they may achieve their hopes and dreams.” – A social worker colleague

Although caring for patients who face challenging diagnoses can be emotionally demanding for caregivers, oncology social worker Krista Nelson has discovered that finding laughter and joy in each experience ensures that everyone involved approaches challenges with more compassion and understanding. Krista reminds caregivers and patients to celebrate any “win,” big or small, and works hard to bring a positive, joyful attitude into each interaction.

“I fell in love with my job because it allows me to fight social injustice and inequalities, and it also allows me to get to know each patient personally and support them through their journey,” says Krista.

The foundation of Krista’s work can be summarized into one word: connection. Connection with patients, their families and her colleagues is what brings her joy and sustains her efforts. In her role, she provides individuals counseling, facilitates support groups and organizes retreats. After experiencing the effects of cancer on patients’ families, Krista helped with the development and coordination of a program for children who have a parent with cancer.

Outside of work, Krista’s time is dedicated to serving others on a global scale. Krista and her team have shared the model they developed for supporting children of cancer patients with doctors from Japan, who now use the model to heal tsunami victims. Each year Krista travels to a clinic in Haiti and conducts the Schwartz Center Rounds® program, providing emotional support for caregivers from both Haiti and the U.S. Krista is also active in several professional organizations, and has previously served as the president of the Association of Oncology Social Work and as an invited director of the American Psychosocial Oncology Society. Currently, Krista serves as an invited director on the Board of Directors of the National Accreditation Program for Breast Centers and as a director of the American Clinical Social Work Association, where she advocates for compassionate care.

“I love big picture thinking with passionate colleagues around the world in order to enhance the care for those we serve daily,” says Krista.

Krista gives the same type of support to her colleagues as she gives to her patients, and feels honored to support the caregivers who are her teammates. Through her counsel, Krista’s team processes their often complex experiences and emotions so they can continue to provide the best possible quality care to the next patient they encounter.

“I have many moments of joy and laughter, and have the opportunity to learn how to live from these stories and those I serve,” says Krista. “I am reminded of the courage and strength of all of the individuals I have met, and live my life to the fullest due to them.”

The winner of the NCCY Award will be named at the 20th Annual Kenneth B. Schwartz Compassionate Healthcare Dinner in Boston on November 18.


Let’s celebrate compassionate care, together.

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Compassion for all: Jayne O’Malley, BSN, RN, OCN – Schwartz Center NCCY Award finalist

Posted November 16th, 2015 by

Tomorrow, the National Compassionate Caregiver of the Year (NCCY) Award, from our partners at the Schwartz Center for Compassionate Healthcare, will be presented to one of six nominees at the 20th Annual Kenneth B. Schwartz Compassionate Healthcare Dinner in Boston.

So far, we’ve featured four of the six nominees here on the blog: Rick Boyte, MD, Melody J. Cunningham, MD and Cheryl D. Kane, MEd, BSN, RN and Krista Nelson, MSW, LCSW, OSW-C. Today, meet the fifth nominee, Jayne O’Malley.

Jayne O’Malley, BSN, RN, OCN
Orange Regional Medical Center (Middletown, New York)

“It was obvious how much Jayne cared for my mom. She treated her with kindness, respect and love; her compassion was unending.” – A patient’s daughter

It can be very disorienting for patients who receive a devastating cancer diagnosis, or experience treatment side effects that impact their appearance, ability to eat, speak, see or hear. This is where Jayne O’Malley steps in.

“Everybody is deserving of compassion. Nobody ‘deserves’ a cancer diagnosis,” says Jayne, a nurse and lung cancer navigator at Orange Regional Medical Center. “My goal is to be there and offer support through the peaks and valleys that my patients face. When illness strikes, not only is the patient impacted, family and friends also need compassion and care.”

When Jayne sees a need, she takes it upon herself to research and propose a solution. She has been instrumental in introducing patient support groups and implementing a lung cancer screening program, which has helped countless participants.

“Jayne brings professionalism, confidence, empathy, passion, warmth, and energy to work every day, which not only assists and motivates her colleagues, but acts as a beacon of hope for her patients,” says a physician colleague.

She is also known to spend a lot of her personal time and resources to help her patients. She has bought a pre-paid cell phone so a patient could communicate about his treatment; helped a homeless patient deal with issues with his feeding tube; taken a patient to experience a beautiful waterfall; and has brought dinner to the homes of family members to ensure they were nourished.

A patient’s daughter notes that “upon meeting Jayne, there was an instant feeling of relief knowing there was someone guiding us along this very frightening and uncertain path. Jayne brought a sense of calm and reassurance that we were in the best hands possible.”

Jayne often creates strong and lasting bonds with her patients. She once had a cancer patient who met the love of her life and got engaged. “Jayne gave this patient hope, smiles, warm touches and encouragement in planning the wedding,” says a colleague. “Her prognosis was poor, but never did Jayne allow this patient to be discouraged and she helped her pull of their fairytale wedding, which they planned during her weekly chemotherapy sessions.”

Jayne was there on that special day, just as she was there in the patient’s home on the day she passed away. The patient’s husband donated artwork to the infusion center in honor of his wife, knowing she’d want to provide a relaxing scene for other patients to enjoy and help them feel at ease.

“There are great rewards that result from compassion,” says Jayne. “The lifelong relationships forged with patients and family members is something to be cherished.


Let’s celebrate compassionate care, together.

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World Diabetes Day: Act today to change tomorrow

Posted November 14th, 2015 by

Diabetes affects almost 400 million adults[1] around the world and contributes to nearly 5 million annual deaths[2]. November is American Diabetes Month, but on November 14, the entire world joins together to unite their voices against this disease on World Diabetes Day (WDD).

It was started back in 1991 by the International Diabetes Federation (IDF). And today, WWD is the world’s largest diabetes awareness campaign reaching a global audience of over 1 billion people in more than 160 countries. The campaign draws attention to relevant issues within the diabetes community and this year’s theme is “act today to change tomorrow,” with a focus on healthy eating habits and the importance of access to healthy, affordable food in reducing the global burden of the disease.

There are many ways to get involved – and stay involved year round – listed on the WDD site. How are you showing your support for those touched by diabetes this November, or in the months ahead? Share your awareness efforts and experience with diabetes in the PatientsLikeMe forum and connect with the almost 2,500 PatientsLikeMe members living with type 1 diabetes and nearly 18,000 members living with type 2 diabetes.

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Compassion for all: Cheryl D. Kane, MEd, BSN, RN – Schwartz Center NCCY Award finalist

Posted November 13th, 2015 by

By now, you’re probably familiar with the National Compassionate Caregiver of the Year (NCCY) Award, presented by our partners at the Schwartz Center for Compassionate Healthcare. We’re featuring the six award nominees here on the blog, leading up to the 20th Annual Kenneth B. Schwartz Compassionate Healthcare Dinner in Boston on November 18. We’ve already featured Rick Boyte, MD from The University of Mississippi Medical Center (Jackson, MS) and Melody J. Cunningham, MD from Le Bonheur Children’s Hospital in Memphis, TN. Next up is Cheryl D. Kane, MEd, BSN, RN.

Cheryl D. Kane, Med, BSN, RN
Boston Health Care for the Homeless Program (Boston, Massachusetts)

“Strong relationships of trust are a hallmark of the care Cheryl provides. It is Cheryl to whom we turn to instill and nurture that same sense of compassion in the next generation of nurses in our program.” – A physician colleague

After 23 years of teaching, Cheryl Kane decided to follow her lifelong dream and become a registered nurse. Now Cheryl provides care for the often overlooked homeless population as the Director of Nursing at the Barbara McInnis House at Boston Health Care for the Homeless Program.

Cheryl draws on the lessons she learned while teaching, including patience and encouraging others to be their best selves, when serving her patients. The former teacher notes that over the years, her patients have taught her a lot as well.

“The homeless patients I interact with keep me honest; they do not tolerate insincerity or phoniness. They’ve also taught me how to be compassionate, and have given me a greater understanding of what compassion is all about,” says Cheryl.

The majority of Cheryl’s patients have had lives full of physical and emotional trauma, and their capacity to trust is limited. Cheryl’s initial goal when meeting with a new patient is to develop a sincere relationship of trust, which allows her patients to tell her their story and where they’ve come from. Once Cheryl understands who they are and the unique challenges they face, they can work in partnership to create a healthier outcome.

Building strong bonds with her patients and colleagues is at the heart of all Cheryl’s interactions. She was working on the street team when a patient found out that she had recently lost her husband. The patient immediately asked Cheryl to go buy herself a cup of coffee, and put it on his tab, so they could talk about her late husband.

“I realized later that this was an incredible gift that this man gave to me. People would easily pass him by because of his exterior, but he was so gracious to me that day, and had a real concern for what had happened,” says Cheryl.

Both colleagues and patients alike emphasize how Cheryl’s ability to look at someone’s soul, rather than their exterior, has left a longstanding impression on them. Through humor, patience, a gentle touch and her kindhearted nature, Cheryl has become a source of support for those she cares for.

A nursing colleague says, “at Boston Health Care for the Homeless Program, Cheryl’s name is synonymous with amazing listener, the person who goes the extra mile for patients and staff, non-judgmental, extraordinary nurse, strong leader and advocate for patients and strongest of all…compassionate caregiver.”

Let’s celebrate compassionate care, together.

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Compassion for all: Melody J. Cunningham, MD – Schwartz Center NCCY Award finalist

Posted November 12th, 2015 by

We’ve already introduced you to Rick Boyte, MD, one of the finalists for the National Compassionate Caregiver of the Year (NCCY) Award presented by our partners at the Schwartz Center for Compassionate Healthcare. Today, we’re happy to introduce you to another nominated healthcare provider who has displayed extraordinary devotion and compassion in caring for patients and families.

Melody J. Cunningham, MD
Le Bonheur Children’s Hospital (Memphis, Tennessee)

“Melody’s character shines through her every action and her kindness is immeasurable. Her compassion for treating the whole family can not be put into words.” – A former patient’s mother

A series of losses, including the death of her father, during Melody Cunningham’s childhood taught her the definition of compassion and the depth of the human experience. As a pediatric palliative care and hematology/oncology physician and medical director of Threads of Care, the palliative care program at Le Bonheur Children’s Hospital, Melody treasures every individual she comes in contact with.

A winding path of jobs and experiences led her to oncology, where compassionate mentors taught her a powerful distinction: to look at medical relationships as human relationships.

“I teach our medical students, residents and fellows that it’s OK to be human, to make mistakes and to say we’re sorry. As caregivers, we can laugh with families and we can cry with families,” says Melody.

Caring for her team is just as important as caring for her patients. Melody often arranges for her team to gather at her house to prepare food for the week, drops off food at team members’ homes when she knows they’ve had a difficult week, and has also been known to provide free babysitting services for colleagues. An active participant of the Schwartz Center Rounds® program, Melody emphasizes that it’s important for caregivers to remember they are human and to take the time needed to process thoughts and emotions.

Together, Melody and her team work to make sure families feel like they always have a safety net. With a 24/7 phone line, caregivers are never out of reach.

“Throughout our son’s illness, Melody was available, day or night, to answer questions and provide comfort. Melody became our friend, caregiver, confidant and biggest advocate during the darkest period of our lives,” says a former patient’s mother.

Melody approaches her practice with listening ears and an empathizing heart. She often wears a bracelet with a pair of moccasins on it, which reminds her to step into the other person’s shoes and picture their journey from their perspective. Melody believes that listening to patients and understanding their point of view and how they define quality of life is integral to the healing process.

“Melody hugged us, cried with us, laughed and celebrated milestones over the course of our daughter’s illness,” says a former patient’s mother. “With Melody by our side, we never felt alone or incapable of caring for our daughter.”


Stay tuned for the remaining NCCY Award nominees as they’re featured on the blog leading up to the 20th Annual Kenneth B. Schwartz Compassionate Healthcare Dinner in Boston on November 18. 

Let’s celebrate compassionate care, together.

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