Archives for the month of: November, 2011

In the Cardiac Intensive Care Unit, coping with the shock of double bypass surgery to repair postpartum spontaneous coronary artery dissection (SCAD), I kept having an overwhelming sensation of being impaled. Particularly late at night. In the dark, I would struggle with sharp, agonizing pains that seemed to go straight through me, into my back. Not truly understanding what open heart surgery entails (for it was my first-ever surgery), I didn’t realize it was the chest tubes, placed to drain fluid. When the mattress undulated to help prevent clots, I could barely stand the pain.

While waiting for the nurse to bring relief, I would challenge myself to not feel the pain by thinking about a truly remarkable man and Vietnam-era prisoner of war, Paul Galanti, Cmdr. USN (ret). Galanti was shot down in 1966 and held captive by the North Vietnamese in the “Hanoi Hilton” prison camp for almost 7 years. He endured unspeakable torture. When I was a teenager, I babysat the Galanti’s children, and although he and I never discussed his time in captivity, he gave me open access to his journals and notebooks. I would pore over them each time I babysat, trying to grasp the mental strength — let alone physical endurance — of Galanti and other POWs.

Nearly 25 years later, I concentrated in my hospital bed:  what I am going through is nothing compared with their ordeal. If they could withstand torture as POWs, I could make it through this. I distracted myself with stories I had read in his journals, stories of determination and ingenuity. Mental toughness kept them alive. I was just waiting for pain meds.

Solitude can be torture too, and those long nights alone without my family had a lasting effect. Back at home, my recovery from SCAD and bypass were physically difficult, but also spiritually and emotionally depleting as well. Because of complications, I needed a lot of help the first year. But no one around me could understand my sense of outrage at what had happened to me. Even worse, they tended to agree with my cardiologist, who said, “Just be glad you’re alive.”

At my first follow-up appointment, I had been ready with questions: “What causes SCAD? How do I prevent another from happening? What about my sons — will they have dissections too? What does the research say?” My cardiologist replied, “There is no research.” I literally thought I’d heard incorrectly, so asked, “What do you mean?” The world stopped — I felt it — when he said, “There’s nothing to research. You either die, need a heart transplant, or get lucky, like you.”

In time, my outrage morphed into resolve — a twist on don’t-get-mad-get-even. Just because doctors said it was rare, didn’t mean it was rare. Throughout history, women have died in childbirth, and our various cultures just accept it as an occupational hazard. Perhaps SCAD was why all of these women died. Maybe the answer was right in front of us, but no one was looking at the obvious. And if I had survived, others had too. I just had to find them.

My search was another time I remembered Cmdr. Galanti’s experiences. At various points in captivity, he was in solitary confinement and at others, he and other POWs were housed in small adjoining cells. They were not allowed to communicate and punishments were severe, gruesome. But the men created a communication system through a tap code on the cell walls. Without knowing who was on the other side of the wall, they “spoke” and supported each other.

It was a similar sensation when I began my Internet search into SCAD. I was totally alone, but I KNEW others were out there. I couldn’t see them, but they were there. Tapping away on my keyboard into the vast unknown of the Internet, I was determined to find SCAD survivors. It didn’t matter how long it took, I just knew I had to find them and someday convince someone to research SCAD.

At first, I found outdated abstracts or “ask the doc” message boards. But when I stumbled upon the WomenHeart Support Community, a slow trickle of SCAD patients turned into a steady stream of motivated survivors. When Inspire.com began hosting the WomenHeart site in 2007, the increase was almost overwhelming because it proved that my hunch was correct:  we were all “out there” tapping away, desperate to be heard.

While forging relationships on the community, I wasn’t aware of the term “social media.” I would talk with my husband about “my SCAD friends” or “my online friends with SCAD.” They were just as real and important as any “in-person” friend in my life. Even today, our taps on the cell wall usually don’t translate to our families or social circles. But in the world of social media, we truly communicate and gain understanding of our fears, confusion and struggles.

In learning about www.webicina.com, I was awestruck by its mission: further empowering patients and medical professionals with free social media content in their own languages. So far, my SCAD friends and I have communicated in English, but I’ve wondered over the years. How can I reach the SCAD survivors in countries around the globe whose languages I don’t speak?

Social media turned out to be critical to my recovery, and through webicina, it may well open up a new universe of SCAD exploration for me. I’m ready.

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This abstract reports on the largest series of SCAD patients to date ever analyzed at a single medical center. It is a retrospective study of 70 former patients at Mayo Clinic, Rochester, MN. The study was presented at the American Heart Association Scientific Sessions in Orlando, Fla., on November 15, 2011, by Marysia S. Tweet, MD, at the “Unstable Angina, NSTEMI and STEMI: Prognosis and Pharmacologic Therapy-Focus on Coronary Intervention” session.

Cutting to the chase … “This descriptive single center analysis of the largest SCAD series to date reveals SCAD to affect a young, predominantly female population. Potential risk factors are identifiable in the majority. While in-hospital mortality is low, rates of long-term MACE and SCAD recurrence are notable, underscoring the need for close clinical follow up and additional research.”

So thankful to have this data to pave the way for the current SCAD research underway at Mayo: creation of a worldwide virtual registry and the DNA biobank of SCAD patients and family members.

Core 7. Vascular Disease: Biology and Clinical Science

Session Title: Unstable Angina, NSTEMI and STEMI: Prognosis and Pharmacologic Therapy-Focus on Coronary Intervention

Abstract 14504: Outcomes After Spontaneous Coronary Artery Dissection: A Long-Term Single Center Experience

Marysia S Tweet1; Sharonne N Hayes2; Sridevi R Pitta3; Sherezade Khambatta1; Patricia J Best2; Ryan J Lennon4; Charanjit S Rihal2; Rajiv Gulati2

1 Internal Medicine, Mayo Clinic, Rochester, MN
2 Dept of Internal Medicine, Div of Cardiovascular Diseases, Mayo Clinic, Rochester, MN
3 Cardiovascular Diseases, Schnitzler Cardiovascular Consultants, PLLC, San Antonio, TX
4 Div of Biomedical Statistics and Informatics, Mayo Clinic, Rochester, MN

Background: Spontaneous coronary artery dissection (SCAD) is a rare, non-atherosclerotic acute coronary event of uncertain etiology. Demographics, optimal treatment modalities and outcomes remain poorly understood.

Methods: A retrospective single-center study was performed to identify consecutive patients with angiographically confirmed SCAD between 1979 and 2010. Demographics, treatment modalities, in-hospital and long term outcomes were evaluated.

Results: Seventy patients with SCAD were identified with a mean age of 43.8 + 11.6 years. Fifty-four (77%) were women of whom 11 (20%) were postpartum and 10 (19%) were taking hormonal therapies. Other associated features included connective tissue disorders in 10 (14%) and extreme physical exertion in 12 (17%). There were no etiologic factors in 26 (37%). Clinical presentation was STEMI (50%), NSTEMI (40%) or symptoms without ECG changes (10%). Notably, 10 patients (14%) experienced life-threatening ventricular arrhythmias during initial presentation, and 16 (23%) presented with multivessel SCAD. Initial management strategy was conservative (39%), percutaneous coronary intervention (PCI, 40%), fibrinolysis (19%) and coronary artery bypass grafting (3%). There were no in-hospital deaths in those treated with an initial non-invasive strategy. However, of those who underwent initial PCI, the procedure was technically unsuccessful in 8/28 (29%) with 1 in-hospital death. Long-term follow up (median 44 months, IQR 17, 106) revealed recurrence of SCAD in 10.4%, death in 4.5% and heart failure in 4.9% at 5 years. The 10-year major adverse cardiac event rate (MACE) was 44.9% (death 8.5%, heart failure 11.2%, myocardial infarction 33.5% and SCAD recurrence 26%).

Conclusion: This descriptive single center analysis of the largest SCAD series to date reveals SCAD to affect a young, predominantly female population. Potential risk factors are identifiable in the majority. While in-hospital mortality is low, rates of long-term MACE and SCAD recurrence are notable, underscoring the need for close clinical follow up and additional research.

Author Disclosures: M.S. Tweet: None. S.N. Hayes: None. S.R. Pitta: None. S. Khambatta: None. P.J. Best: None. R.J. Lennon: None. C.S. Rihal: None. R. Gulati: None.

For a few weeks, I’ve been trying to summon the energy to write about a challenging time involving my son’s health a few years ago. I’m not there yet. As any parent can tell you, being poked, prodded, sliced, diced, and patched up is one thing when it happens to you. It’s a living hell when it happens to your child.

I think this is why I can’t get “Narratives from the NICU” out of my mind. The report tells literally heartbreaking stories of what families endured to save a life, a tiny life struggling to be a precious daughter or son. You can feel their pain — that of the family and the baby — as parents describe their months in the NICU. What the stories don’t fully reveal in detail is the release these parents must have felt after finding refuge in the Inspire Preemie Support Community.

As someone who has overcome a health nightmare with the help of the WomenHeart online community, I can describe the unique benefit of messaging forums as this: they allow individuals who’ve been through their own unimaginable hell to cast a line into a pool of likewise tested survivors to connect. It only takes that first leap of faith to write a post, agonize over it’s clarity and meaning, and then take a deep breath before clicking “post.”

And then, a reply comes. Out of thin air on your computer screen, a voice answers. It sounds as though you’ve known this person your entire life. Someone finally “gets it.”


www.inspire.com/static/inspire/reports/inspire-preemie-nicu-narratives.pdf

… a special report published for Premature Awareness Month.

“Narratives from the NICU: Neonatal intensive care units through the eyes of parents,” a special report by Inspire.com, sparked a memory of freelancing for Piedmont Hospital in Atlanta, Ga. Baseball Hall of Famer, Don Sutton and his wife, Mary, opened their world for me to write about their Miracle Baby, Jackie, born 16 weeks early, weighing one pound. I knew nothing about baseball — or babies — then, but it was an exciting time and they were very kind. Telling the tale also included the opportunity to attend a Preemie Reunion at the hospital. It was a heart-warming, inspiring event, and I learned about a new side of health care as nurses and physicians marveled at “their babies” who had come back to visit, so big and strong.

While reading the Inspire piece, it struck me that the preemie reunion was essentially a form of social media. Although technically public relations, this type of story and event was grass roots social media. The Public Affairs office arranged the event — a literal “social” of families, friends, and hospital staff. They communicated the story among themselves and strategized. The “media” truly was media, including coverage by local television and print news, as well as my article for the hospital’s magazine. The end result of this form of social media was the same as the electronic form today: spreading news, sharing ideas, and generating support, in this case for the NICU.

While pondering this concept during the week, I was surprised when a friend emailed similar thoughts of “early social media.” She reminisced about her struggles nearly 40 years ago:

“How times have changed … Compared with [social media], the childhood cancer ‘network’ we found when Laurie was diagnosed back in 1973 was the equivalent of the proverbial green eyeshade and quill pen. Word got around quickly at church, and the next day – I don’t think we had even had our first trip to NIH – I got a call from a woman in Annandale. She said her son had the same kind of leukemia as Laurie and that she would find us at the NIH clinic, which she did. Intros were made, so Laurie (just turned 4) and I suddenly had a crowd. What’s more, there was a Washington parents’ group, parents of kids from all area hospitals (but with NO hospital backing) that met on a regular basis at the Rayburn House Office Building. It was called ‘Candlelighters.’

Nixon was president and they were trying to get the National Cancer Act passed so in between treatments, we knocked on Congressional doors (i.e., lobbied), went on radio, and shared info about treatments (and results) around the country by phone and snail mail that included a mimeographed newsletter. We stood out front of the White House with little candles lit. We felt like we were doing something but it had NOTHING of the power of today’s social networking.”

Her story is very powerful to me. Those struggling families had to reach out physically and act, facing all the complications and challenges that entails. I hope social media does justice to the efforts of those who’ve gone before. Because when technology is taken out of the equation, it is the people who make the difference — always.

“Narratives from the NICU: Neonatal intensive care units through the eyes of parents” is on Inspire.com at www.inspire.com/static/inspire/reports/inspire-preemie-nicu-narratives.pdf

Candlelighters can be found online at www.candle.org

Health literacy. Who (or what) is to blame for our nation’s ongoing struggle with health care access, utilization and personal care management? Is the patient born equipped to navigate (or fail) the system? Should environmental forces shape (or stymie) each of us as a savvy health care consumer? Or are doctors failing miserably in an unspoken “not my job” syndrome of patient education.

Last night, @kdhoffman2 and @rv_rikard hosted a chat on #hchlitss regarding health literacy. We got into quite a rally regarding patient responsibility. Can a person whose environment, culture, and heritage predicate poor health and outcomes truly be expected to rise above and succeed? Or, should we as a society, stress personal responsibility and somehow mandate ownership of health issues and an individual’s path to literacy?

I appear to be using way too many question marks in this post, and that usually indicates a tough topic. Yes, there ARE two sides to this story, so many angles to consider. While playing a blame game may get us no where fast, we as a society cannot continue on a path of blatant disregard for medical science and expect group insurance — or worse, the emergency room — to handle our health care costs indefinitely.

Literacy is a challenging topic in any arena. Even fundamental literacy in our education system isn’t clear cut. In one of life’s uncanny coincidences, today I co-chaired our public elementary school’s Literacy Day (formerly RIF, before it was unfunded at the federal level this year). We chose the term “literacy” for a reason. I wanted the children to make the connection between reading and responsibility for their own learning, growth and future (a truly foreign concept to many).

Today they did choose a book — a free book, which is a thrill for any of us — but that book symbolizes more than just beating the system. It symbolizes a responsibility. I explained this to them. There were a few eyerolls, even looks of disbelief from the teachers. But yes, I gave 650+ children today the responsibility to take that book and somehow make use of it. To hone a skill and grow. And you know what I saw in their faces? “I can do it.”

Will some struggle? Yes. Will some fail? Yes. But will some who never thought they could, rise to the challenge and succeed? YES.

So after a long day, put me in the camp that sets expectations and measures responsibility for health literacy in our society. All stakeholders (e.g., patients, providers, education system, social services, insurance industry) need to up their games. Yet individuals are capable of far more than they are generally ever asked. I saw the light in those young eyes today. We can do it.