Wednesday, February 25, 2015

Cybercondria and Pulmonary Hypertension Awareness

For this second guest blog post in our series of guest posts from PHA staff members, Jessica Armstrong, PHA’s Early Diagnosis Campaign Manager and a CTEPH patient, looks at an interesting Internet phenomenon called cybercondria and what it could mean for pulmonary hypertension patients.

Last summer I came across a new term that I'd never heard before: Cybercondria. As you might guess, it is defined by Wikipedia as “the unfounded escalation of concerns about common symptomology based on review of search results and literature online.” Put simply, a cybercondriac is that person we all know who gets a cold, googles their symptoms, and becomes convinced they’ve contracted the bubonic plague. Although funny to think about, what's interesting is the sheer number of articles and guides that have become available geared toward advising healthcare providers on how to calm the cybercondriac patient.

For patients with pulmonary hypertension, this phenomenon of the Internet age comes with a challenge: How does a rare disease patient differentiate him or herself from the cybercondriacs of the world? The answer is to be informed.

We've already learned the value of educating ourselves, of being good investigators, and in being knowledgeable about our health. We’ve used this knowledge in advocating for ourselves, and frankly, that's how many of us arrived at the point of being diagnosed with pulmonary hypertension. By now most of us have learned that the need for self-advocacy doesn’t stop at diagnosis, which is why so many of us have continued our efforts to learn as much about pulmonary hypertension as we possibly can. This includes learning our WHO group classification, being an active participant in our own health, and hopefully staying organized via the Empowered Patient Toolkit.

Today, with 12 PH therapies available, it becomes more and more likely that we’ll have to deal with other health conditions and concerns in addition to our pulmonary hypertension, and it remains important that we continue to be good self-advocates and good stewards for health, while at the same time not falling into the trap of jumping to extreme conclusions (which is easy to do when you already have one rare disease).

Over the next few weeks, PHA will be launching the newest addition to the Early Diagnosis Campaign, our Patient Self-Advocacy Toolkit at www.SometimesItsPH.org/PatientSelfAdvocacyToolkit (not live yet). Unlike PHA’s existing Empowered Patient Toolkit, this resource is intended for any patient experiencing unexplained symptoms.

The goal of the Patient Self-Advocacy Toolkit is to provide information and tools for patients who are at that point that many of us were at shortly before we were diagnosed with PH - experiencing unexplained symptoms, uncertain of what’s happening, full of unresolved questions and concerns. Some of these patients may have pulmonary hypertension and some may not, but the goal is really to equip them to figure out what the problem is and to help them be organized and prepared as they embark on the journey toward diagnosis. We hope it will be something you’ll be proud to tell your friends and family about.

And for those of us who have already received our PH diagnosis, we hope this resource will prove a valuable tool as we approach other health concerns along the way. In particular, I’m excited that the Toolkit will provide a guide to finding credible health information online. This resource, which will be found under the ‘Be Informed’ section, will offer tips that will hopefully make it easier to identify good quality resources on the web. We hope that this resource will be something that you continue to utilize not only in regard to diagnosis of new concerns, but also as you continue to learn about your pulmonary hypertension.

And the good news is, if you’ve suffered from cybercondria in the past, there will soon be a cure.

Wednesday, February 11, 2015

Let's Work Together to Advance the PH Cause

Over the next several weeks, I have invited PHA staff to offer guest blog posts about the work they are doing on behalf of the PH community. This first guest post in the series comes from Kim Lamon-Loperfido, PHA’s Patient & Caregiver Services Manager. Kim coordinates the Tom Lantos Innovation in Community Service Awards, and since its launch six years ago, the program has held true to the goals of supporting good ideas that can make a difference to the PH community. The Lantos Grants help patients and family members bring those ideas to reality for the betterment of all​.

Carmen Lozada-Bruno (right) received a
Lantos grant to distribute Spanish language
posters in Puerto Rico with information on
symptoms, diagnosis and the causes of PH.
I’m looking forward to another successful year with the Tom Lantos Innovation in Community Service Awards program this spring. This program allows members of the PH Community to fund and bring into reality their ideas. Last year we had 25 applicants and 13 funded projects.

Some fabulous projects came from 2014 like Brittany Evans, who along with the Generation Hope advisory board, created notepads printed with PHA’s most important web links for both patients and healthcare professionals. Her first distribution of this project took place at one of the healthcare professional meetings at PHA’s 2014 International PH Conference. Another project by Carmen Lozada-Bruno of Puerto Rico involved distributing Spanish language posters with information on symptoms, diagnosis and the cause of PH across Puerto Rico’s pharmacies, emergency rooms, hospitals and government offices. She received nothing but gratitude and positive feedback throughout the process.

I have had conversations with several community members who have experienced the spark of inspiration, but aren’t quite sure how to turn that spark into a full project for their application. Through these conversations, we have explored the primary goal they are trying to work toward, and from there, we’ve filled in details on how they can reach that goal. I’ve encouraged them and I encourage you to watch our helpful webinar on the process, which takes you from brainstorm to application and, finally, to successful project implementation. But I’m also here to help through any part of the process, and I can connect you with previous winners who are more than happy to mentor you in the process.

This program is now in its sixth year of funding projects to advance our shared cause. It provides grants of up to $5,000 each, and both domestic and international applications are welcome.

Projects over the past five years have raised awareness of PH, created PH resources, and educated others about PH. Those wishing to apply for funding should know their projects can also replicate the efforts from previous Lantos Awards, for example introducing a project to a new audience or adding a new component.

The grant program is named for the late Rep. Tom Lantos, a longtime congressman from California who was the original sponsor of our bill in Congress after his granddaughter was diagnosed with PH.

For more information or for help with your application, please reach out to Lantos@PHAssociation.org. I am so excited to work with you as you turn that spark of inspiration into a full-blown project to advance the PH cause. Although applications are due by March 25, 2015 – let’s chat today!

Wednesday, January 28, 2015

PHA Accredits 11 New Pulmonary Hypertension Care Centers

When I came to PHA in 1999, there were about 100 doctors in the U.S. treating pulmonary hypertension. Today there are more than 10,000. While that growth is good news, it’s also a call for clear standards to improve quality of care for patients. That is the purpose of PHA’s new PH Care Centers (PHCC) accreditation program. The program was launched on Sept. 27, 2014, after three years of organization and development by committees of leading medical professionals.

Today's news is that PHA recently accredited 11 Pulmonary Hypertension Care Centers, bringing the total number of PHCCs to 17, in a program that seeks to improve overall quality of care and ultimately improve outcomes of patients with pulmonary hypertension. This includes promoting improved diagnostic and treatment standards in the field of PH, while creating unique partnerships between accredited centers and PHA.

PHA is still a relatively small disease organization. For us to now be accrediting PHCCs is a great accomplishment. I believe this comes from our unique relationships with medical professionals and patient populations working together to find a cure for this devastating disease. We have come a long way in changing the trajectory of this disease and improving the lives of patients in the race for a cure.

These first phases of accreditation are open to centers applying as Comprehensive Care Centers (CCC). We expect that to result in more than 90 applicant Centers. (We are currently over 35.) In 2016, applications for Regional Clinical Programs (RCP) will begin to be accepted as RCP criteria requires collaboration with regional CCCs. By linking accredited CCC and RCP centers together, the program will improve knowledge among professionals and patients about where to seek quality care.

PHCC accreditation signifies that a PH program has demonstrated a dedication to making a proper diagnosis and has the capacity to appropriately and comprehensively manage PH patients through a set of criteria. Both CCCs and RCPs will be accredited by PHA after undergoing a thorough evaluation and satisfactorily meeting the respective standards set forth in the PHCC Criteria. In accordance with the program’s vision, all PHA-accredited PHCCs will be expected to uphold the principles of delivering appropriate and effective care, offering research participation opportunities and providing appropriate support to PH patients.

To see the full list of nationwide accredited PHCC Centers of Comprehensive Care, please visit our website.  In looking at this information, it's important for everyone to understand that this process is just beginning. Many excellent Centers have not yet been reviewed or begun the complex application process.  It will take well over a year for PHA to work through national-level accreditations, after which Regional Center accreditations will begin.

The PHCC online application portal was also launched this month with high interest in the program resulting in a steady increase of application submissions. Many site reviews are being scheduled for the coming months. Centers interested in applying can access the online application at the PH Care Centers Site Application Portal.


For additional information on PHCC and the application process, go to: www.PHCareCenters.org or email PHCC@PHAssociation.org.

Please join me in congratulating the newly accredited centers. With the hard work and dedication of these Centers, the diligence of the medical community and patient population to get the best care possible, and the work of our staff at PHA to coordinate initiatives and raise awareness about PH, we are closer to a cure than we have ever been.

Wednesday, January 14, 2015

Defining the New Normal



I’ve been interacting with PH patients for a long time – about 15 years now – so you might think I would no longer be amazed by the strength, creativity and perspective they bring to their disease. But I am. Case in point: Colleen Brunetti, the first Generation Hope member to serve on PHA’s Board of Trustees, has published an honest and thought-provoking book about her experiences living with PH, Defining the New Normal: A Guide to Becoming More than Your Diagnosis.

Writing a book is no small chore, and in addition to living with PH, Colleen is a wife, mother, certified holistic health coach, teacher and fundraiser. Yet she made the time and found the inspiration to produce this book which takes those with all forms of chronic and critical illness step-by-step through the areas of self-care that Colleen believes are crucial to patients’ overall well-being. Learn more about Colleen’s motivation to write the book and how you can get a copy of your own.

Tuesday, December 9, 2014

Awareness Month…planes and trains and other things

Zebra in the Fresno crowd
PH Awareness Month...  

It’s a footrace – an important footrace – with a lot of zig zag.  To explain, I’m using this blog to fill out what I wrote in earlier blogs and talk a bit about what I saw and did as I traveled for PHA just before and during this important time for building PH Awareness.

Personally, Awareness Month is also a time to feel the pulse of our community and better understand the effectiveness of current programs and future directions.

When I first came to PHA in 1999, there was little time or financial ability to travel but I was struck by the Awareness Week (that’s what it was then) pioneers who were tabling at several hospitals around the country.  They were the backbone upon which we built the great Awareness Month activity we are seeing today. 

As always, my November Awareness Month travels began in late October.  On the 23rd of the month I made my first stop in Denver to attend the induction of Dr. David Badesch into the Colorado Pulmonary Hall of Fame.  Dr. Badesch is one of the great clinicians and researchers in the field and a friend who helped build medical side of PHA’s work.  It was wonderful to see him receive this great honor.

After less than 24 hours in Denver I went on to Fresno, California.  Many months earlier, I had promised Dr. Vijay Balasubramanian, Director of the PH program at UCSF Fresno, and Perry Mamagonian, the very active Fresno support group leader that I would be there.  The night before the event, On October 24th, I had dinner with Dr. Bala as he is called and several administrators and staff at his hospital.  He said to me, “You know, we have worked hard to build a strong PH program here in Fresno.  When I looked at PHA’s PH Care Centers accreditation guidelines, I saw that we had everything needed…except a nurse coordinator.  I went to my hospital administrators and told them that I believed the accreditation program is important and asked their help.”  What he said next was striking in realizing how the new PHCC program is already improving quality of care for patients.  “My administrators supported me. Meet my new nurse coordinator.  She started last week.”  He went on to describe how his nurse coordinator was already tapping into connections with other nurse coordinators from PHA’s PH Professional Network (PHPN) for mentoring.  Knowing all the work that has gone into building the PHCC accreditation program, it was striking to see how it is already beginning to impact practice for the good of patients.

 On Saturday October 25th, I attended the Fresno Annual Fun Walk.  I was impressed at how many people came and reminded how important it was to have a PHA presence at such events.  I truly wish we had the opportunity to attend all these great events…but with an annual calendar that includes 90 special events, 60 PHA medical education meetings, 15 Building Medical Education in PH meetings, 4 regional patients conferences and quite a bit more, that has become sadly impossible. We have grown to have one PHA meeting almost every two days.  All are important in our quest to change the history of this disease…whether or not we are staffed to attend.

Later in October 25th, I flew to Austin, Texas for the annual conference of the American College of CHEST Physicians.  PHA attends conferences like this where we exhibit and connect with medical professionals, develop alliances and host our own committee meetings.  CHEST is always a good opportunity for all these things. In the Austin airport I saw the banner to the right.

After several days back at the office, I attended the Baltimore Zoo Walk on Sunday, November 2. Later in the day, I traveled to San Francisco for two days of meetings with our corporate partners at Actelion and Gilead.  It is an opportunity to let them know how we have used their financial support during the past year and where the organization is heading in the next.  At Actelion, I had the opportunity to speak to their staff at their Awareness Month Kickoff Luncheon.

On to New York City on Nov. 6 for two events.  First, a visit to NASDAQ where our PSA's played on the NASDAQ stock exchange screen (the largest screen in the world!). Then on to our New York Chapter Gala.  It was a terrific event honoring Dr. Evelyn Horn as a pioneer in PH and her patient, singer Chloe Temtchine and Shad Azimi.  Jeffrey Hayzlett, host of Bloomberg TV’s C Suite was a great MC.

After the New York Gala, I headed to Syracuse for the Sarah Smiles event, held at the Camillus, NY Fire Department.  It’s an event I had been hoping to get to for several years.  I had met Sarah Peek and her parents Michelle and David and little brother Nathan in 2009 at the Long Island Support Group Fun Walk.  Sarah was a lovely 6 year old whose spirit
really struck me…and whose loss in 2010 was deeply saddening.  It was great to see Michelle and David again at this annual fund and friend-raising tribute to Sarah – and to meet Sarah’s grandma, Bonnie Corey, who I’d previously spoken to by phone.

From Syracuse I headed back to the office for four days of 2015 budget sessions.  Twenty-two budget presentation meetings were held on Monday, Tuesday, Wednesday and Friday during the week of November 10.  Thursday was reserved for PHA’s Annual Congressional Luncheon.  This was a well-attended event which included encouragement from Sen. Bob Casey of Pennsylvania and NHLBI Director Dr. Gary Gibbons and Congressional office visits by the many patients, family members and medical professionals who attended.  Before the event, many of PHA’s members called their Members of Congress requesting that they or someone from their office attend the luncheon and saying that they would call back to hear how it went.  As always, our community’s efforts at the local level really helped build Congressional interest and attendance and our clout at the national level.
Shortly after the last budget meeting at 4pm on Friday November 14, I headed back to the airport for a late flight.  This time it was a little different.  I got to spend the weekend with my daughter and son-in-law in Germany before continuing on to Paris to meet with leaders of European PH Associations (including France, Germany, Italy, Hungary, Norway and the United Kingdom).  As the number of PH associations continues to expand globally, meetings like this help to us all to collaborate better and find ways to build programs of value to our communities.  While I was in Europe, PHA launched the first CTEPH Awareness Day as part of PH Awareness Month with great participation.  It was exciting to see that our European partners were already aware of and excited about tis new effort.

Following the European meetings, I flew to Chicago for PHA’s Midwest Chapter Hearts Phor Hope Gala on November 22.  I particularly wanted to be there to acknowledge Dr. Stuart Rich who was receiving an award for his career-long and ground-breaking work as one of the founders of the field of pulmonary hypertension.

The next morning, I flew home for more budget work and a very quiet and restful Thanksgiving!
There is so much that I saw during Awareness Month 2014…and much more that I could not see. 

PHA is based on the principle that a strong community can change our world for the better. 
Awareness Month is one important and vibrant proof of that principle.


Wednesday, November 26, 2014

A Year to be Thankful PHor

Throughout the year, these blogs are an opportunity to tell you about what PHA is doing with and for you.  As we approach the end of the year, this blog is a little different…

With Thanksgiving a couple of days away and the Winter holidays fast approaching soon after, I’ve spent some time recently reflecting on this year and all that we in the PH community continue to achieve. From celebrating our most successful International PH Conference and Scientific Sessions to date, to launching PHA’s accreditation program for PH Centers, to rapidly increasing PH awareness through our new PHAware program, to the continuing growth of our 245 support group network, to shining a new spotlight on Chronic Thromboembolic PH (CTEPH), and new PH research programs and grants, it is amazing to see what we have achieved together in 2014.

More than these successes though, I’m so grateful to be connected to this amazing community. You give so much to those affected by pulmonary hypertension. No matter how you have been touched by this disease, you go above and beyond to sustain our efforts to fight PH and support the PH community. Today I’m asking you to give back in a different way, through a tax-deductible donation to PHA’s end of year appeal that will support our continuing fight against PH.

Another way I’ll be getting into the spirit of the holiday season this year is by participating in #GivingTuesday, a global day dedicating to giving back to the causes that mean the most to you. I invite you to join us by making a donation to PHA’s end of year appeal on Tuesday, December 2 and continuing to spread hope for this community.

Now is a great time to give to PHA, because your donation will be doubled! Thanks to a matching gift from Actelion Pharmaceuticals, the first $25,000 in donations will be matched dollar for dollar. Make a gift today to double your impact.

If you have not already, please take a look at PHA’s 2014 Annual Report to see some of the ways this community put Hope in Motion over the last 12 months and our plans for the next 12. It is your support that makes all of this possible.


As I’ve said before, and I’m sure to say again, this was an extraordinary year for the PH community. Though there is still much to be done, we can be so proud of all that we accomplished this year, together.

Please make a tax deductible gift today, or mark your calendar for #GivingTuesday and support the programs that are sustaining hope and changing lives every day.

With hope for 2015,
Rino

Wednesday, November 12, 2014

Busting Clots and Myths: Why Early Diagnosis Matters

Early and accurate diagnosis is the key to improving patient treatment outcomes and quality of life. To save lives, doctors must be able to recognize symptoms and understand the correct process of diagnosis. PHA’s Early Diagnosis Campaign: Sometimes it’s PH is actively working to break down the barriers to accurate diagnosis through physician and patient education and awareness. By decreasing the time to diagnosis, we save lives. 

The following guest post by Dr. Manreet Kanwar tells the story of Angel, a chronic thromboembolic pulmonary hypertension (CTEPH) patient who went through the complexity of the health system to finally reach her diagnosis months after symptom onset. Her story shows the struggles patients must go through to get answers and proper treatment. In honor of PH Awareness Month and CTEPH Awareness Day on Nov. 18, please read and share Angel’s story for Better Understanding, Screening & Treatment (BUST) of CTEPH. Also, tune into the CTEPH Q&A webinar with CTEPH specialists Dr. Bill Auger, Dr. Gustavo Heresi-Davila and Crystal Weber, RN, on CTEPH Awareness Day (Nov. 18) at 5:00 p.m. ET. Register now for this webinar.


Until she is ready to share this story in her own words, let’s call her Angel…

I recently met Angel and her husband Bill in my clinic, and their story reminded me of why the focus on early diagnosis in CTEPH remains key in offering a potential cure for this deadly disease.

Angel lives in a small town in the Midwest with her husband, Bill, and their teenaged son. When Angel turned 40 a couple years ago, it was only the occasional migraine that could slow her down, but that would soon change.

It started slow. At first when Angel noticed that she had to stop and catch her breath every once in a while going up a flight of steps, she didn’t really think much of it, and gradually, it became a thing of routine. She promised herself that she would join a gym, guessing that she was just out of shape. Surely, she thought, that must be it.

Weeks went by and everyday activities started seeming like chores, until finally she could not ignore her symptoms any longer. After a visit to the family doctor, chest x-rays and a round of antibiotics, she thought she would be good as new. But the breathing just did not get better, and now Angel was starting to get and stay tired all the time. After another trip to the family doctor and some blood tests, there were still no answers to be found. She underwent a breathing test (she had some exposure to second hand smoke at work) and was prescribed a trial of nebulizers. After a few weeks, it was clear that these were not going to do the trick either. Since all her test results looked ok, it was decided that her symptoms were "probably just related to anxiety." Another three months went by, and now Angel was convinced that something was really wrong. After yet more blood tests and reassurances, Angel asked for a second opinion. This time, a CT scan of her lungs was ordered.

Shortly after undergoing the scan, Angel received a call to schedule an urgent follow-up appointment. She was told that her scan was "abnormal" and that she may have a condition called sarcoidosis of the lungs. This could be, she was told, the explanation for her symptoms. Since there are no blood tests to confirm sarcoidosis, Angel was referred to a surgeon for lung biopsy. She spent the next week reading all about sarcoidosis on the Internet.

On the day of her appointment, Angel and Bill arrived at the multi-specialty clinic only to realize that they had accidently made an appointment with another physician who happened to share the same last name as her surgeon! Luckily for them, he was a pulmonary specialist. He reviewed Angel’s CT scan and his words left them stunned. He told Angel that she did not have sarcoidosis but rather another rare condition called pulmonary hypertension. The next step was a series of tests to confirm the diagnosis.

Angel and Bill returned home more confused and concerned than ever and started reading up on PH. As she read the symptoms, she felt that they described her experience; but how could she have acquired this condition? They were determined to find out and made another appointment with yet another specialist.

The weekend before her appointment, Angel found herself feeling more tired than usual. As she got up from finishing a meal, she suddenly felt a wave of dizziness pass over her; and then, Angel passed out. She soon found herself in the ICU undergoing a flurry of new tests. An echocardiogram showed that her pulmonary pressures were more than 100 mmHg (normal is less than 25), and Angel’s pulmonary hypertension was soon confirmed via a right heart catheterization.

Angel was fortunate that the center where she was being treated knew to order a V/Q scan to rule out the presence of CTEPH. In her case, the scan confirmed that she had a number of old blood clots in both lungs. Angel finally had a diagnosis: chronic thromboembolic pulmonary hypertension (CTEPH). Angel was promptly started on blood thinners and IV drugs to lower her pulmonary pressures, and for the first time in a while, she felt “like her lungs could finally get some air.”

A week later, Angel was back on her feet and had been referred to our clinic to be evaluated as a potential candidate for pulmonary thromboendarterectomy (PTE) surgery, a surgical intervention that would potentially offer her a chance for a cure from this otherwise progressive and potentially deadly disease. As part of the evaluation, Angel also underwent several tests to rule out other potential causes for her PH and her blood clots.

Angel is currently scheduled to have PTE surgery this month.

Along the way to her CTEPH diagnosis, there were a lot of “what ifs” for Angel. What if the initial CT scan had been done with contrast? (In order for a CT scan to detect clots, IV contrast has to be used.) What if she had not accidently seen the “wrong” doctor who had her on the right path? What if she had not persisted in her quest to seek out the right answers?

But despite all this, Angel tells me that she is focused on the future, thankful that she finally understands why she felt the way she did and glad that she has a shot at a possible cure.

Last, but not least, Angel has promised that after she’s recovered from her surgery, she will share her journey in her own words, as a follow-up to this blog.

So, stay tuned!