Stitch by Stitch

“And I’ll give you all my pieces broken
In your hands, there’s nothing that you can’t fix
My heart is frayed, my scars are open
So put me back together now stitch, by stitch”

– Javier Colon

More to come … still absorbing all of the wonder and excitement of my time in NY for the Woman’s Day Red Dress Awards.

 

A Pretty Blouse

“… you can still wear a pretty blouse.”

These words were spoken by a gentleman cardiologist on a mind-bending afternoon at the Cardiovascular Technology Conference. To me, they generalize the lack of understanding many women experience as heart patients.

It all began with male and female cardiologists. In several different presentations, the speakers made reference to the idea that off-pump bypass was preferable for “a better cosmetic result.”

Back it up. Are they saying what I think they’re saying? That all we women-folk care about is a plunging neckline?

I reprogrammed my ears and tried again. Nope. The remaining speakers expressed the same concept. Off-pump or beating heart bypass offered the benefit of superior cosmetic result. No mention of reduced pain, stress, and potential complications during recovery.

Not a single cardiologist or surgeon mentioned improved PHYSICAL outcomes. It was all cosmetic.

Later, when a cardiologist attending the conference stopped at the WomenHeart information booth, I brought the topic up. It was so interesting, I suggested, that the speakers viewed women’s sole concerns as superficial, not physical. I explained I’d had bypass and ended up with two additional surgeries to complete a sternal closure because of complications.

He gestured to the scar peeking out of my neckline and said, “Well, it looks good.”

I attempted to drive my point home: “But think of the extra recovery time, not to mention medical expense and anguish, involved with a sternotomy.” I added it was surprising not one single doctor had mentioned these benefits to off-pump in the earlier talks.

My query fell on deaf ears. “Well, you can still wear a pretty blouse.”

Interesting.

Dare to be RARE

As cardiologists investigated my heart attack symptoms over the course of several days in hospital, the long shot diagnosis – the “fourth possibility” – was extremely rare. In fact, #4 was so rare it didn’t even have a name at first. It was just this “rare complication” that almost never happens to women after childbirth. We were told not to worry. The cardiac catheterization scheduled for two days later would sort it all out.

Once the cath revealed #4 truly was the cause of my heart attack, the cardiologist told my husband the diagnosis: spontaneous coronary artery dissection (SCAD). Double bypass surgery and the associated shock wiped me out physically and mentally, so I didn’t realize #4 had a name until a few days later.

But what I remember clearly was the term “rare.” And I also remember feeling unhappy about it. I did not want to be rare. I was not an exotic animal, a bird nearing extinction, or an undercooked steak. Why in the world would a type of heart attack be rare? If people have heart attacks left and right in the U.S., why should theirs have an explanation and not mine? How could a “rare” heart attack that had never been researched possibly exist in the year 2003!?!

Being classified as rare did nothing to ease my mind. It just turned things up a notch.

Oddly, in Merriam-Webster’s online, the first definition of rare is “marked by wide separation of component particles,” as in rare air. The second definition is “marked by unusual quality, merit, or appeal.” Not until the third entry do we see SCAD’s “RARE disease” rare: “seldom occurring or found,” more simply, uncommon.

Well, one man’s uncommon is another man’s under-diagnosed or misdiagnosed disease. If a med student learns that SCAD is rare and never occurs, the outcome is foretold: the possibility will never cross his or her mind that heart attack symptoms in a younger woman are caused by a dissected artery.

My hope is to reclassify SCAD as “M.U.D.D.” You guessed it … Mis- and Under- Diagnosed Disease.

For everyone who is labeled RARE, let’s find answers through awareness, compassion, and research. To better understand the true heroes coping with the unknown of their diseases, please blog-hop on through this link: http://www.linkytools.com/thumbnail_linky_include.aspx?id=127101

More on 1 Million for RARE, Global Genes Project

• 30% of children with RARE disease will die by their 5^th birthday.
• An estimated 350 million people are affected by rare disease worldwide.
• 1 in 10 Americans is affected by rare disease.
• 75% of rare diseases affect children.
• Almost 80% of rare disease is genetic in origin.
• There are more than 7,000 rare diseases.
• There are NO cures for any rare disease. Only 5% of the diseases have any type of treatment.
• Over 50% of Rare Diseases have no foundations, advocacy group or community support.

Take Action

• Help unite 1 Million for RARE on the Global Genes Project Facebook page so that we can increase awareness to the rare disease community.
• Wear That You Care (wear jeans to call attention to genes that can cause rare disease) on World Rare Disease Day, February 29, 2012, and encourage others to do so too. Include your schools, sport teams, places of worship, friends, family and coworkers! Share your photos on Facebook. Tag Global Genes Project.
• Donate a bracelet to the 7000 Bracelets of Hope campaign and bring hope to a child/family living with rare.
• Are you living with rare? Sign up to receive one of the 7000 Bracelets via the Global Genes website and also join the R.A.R.E. network.

http://rareproject.org/blog

http://www.globalgenesproject.org/

follow on twitter @GlobalGenes, #1Mil4RARE

Allies in the Exam Room

How many times in life have you lamented, “This would be so much easier if you could read my mind!” Well, what if our doctors could read our minds? Or, what if technology allowed the effect of doctors knowing our thoughts? What a huge difference that would make in the exam room!

Indulge me a bit … imagine pre-appointment symptom reporting, in a relaxed setting, at your own pace – your own unhurried thoughts – direct from your uncluttered brain to your doctor’s laptop by video.

Doesn’t that sound like heaven? Communicating symptoms clearly, effectively, and comprehensively is a challenge on a day when everything in the universe is reasonably aligned. Now, just throw one wrench in the mix, and effective communication becomes an unattainable goal – particularly in the health care setting.

Why? Many of us have an across-the-board dread of doctor appointments. Each has his or her reason, but for starters, we’re sick! Or, we’re following up on a problem we truly don’t like to think about. One of mine main sources of dread, besides wearing nothing but a paper towel, is that it seems completely up to luck whether or not I truly communicate with my doctor. The deck is stacked against it.

See if this sounds familiar: you fight horrible traffic to the doctor’s office and are flustered on arrival. Or perhaps you are on time and all is well, but you grow frustrated waiting on the doctor who has been called to the hospital for an emergency. You eventually go into the exam room, recite your medications to the nurse and explain your symptoms. She may or may not transcribe the symptoms and concerns with 100% accuracy in the chart. But how would you know? Your chart is hanging in a file bin on the hallway side of the door. (I can’t count the number of times my hand has been smacked for peeking.)

After an additional waiting period, the doctor arrives and asks “so what brings you here?” or “so how are you?” Which means you describe your symptoms and concerns once more to him. Personally, knowing that I don’t have much time with the doctor, it can be nerve-racking to clearly explain myself or remember everything (I always bring a list, which helps a little). However, I’ve had doctors get frustrated with me because of my list! So now we’re both stressed out while I’m attempting to communicate details that may be vital to my health, but perhaps he’s interpreting as whining or hysteria.

So let’s take that whole mess out of the equation. Patients with video capability on their smart phones or computers could videotape a pre-appointment message of symptoms and concerns, which is then emailed (or uploaded to an account?) for review before the exam room encounter. Doctors and patients could work together to develop guidelines to keep the reporting on point and at a reasonable length. These video logs would be excellent documentation, also, of health status over time.

For those without computer capability, why not create a “video booth” in the office waiting room to provide the same function? After signing in with the receptionist, the patient goes to a private space where he calmly explains symptoms and concerns to the video camera before any of the actual stress of the visit begins. The video goes to the doctor’s laptop for review, and then the appointment can begin with each party ready to discuss solutions, not rehash symptoms. Hopefully, the video preview helps the doctor streamline patient assessment, while giving the patient confidence to participate in the process.

OK … step right up! Who will be first to tell me how implausible this idea is?! Yet, by exploring new technology and social media, there has to be a way to improve communication between patient and doctor.

Let’s create allies – not adversaries – in the exam room.

Cue the Violins: There’s a Woman in the ER

Why is it when a woman with chest pain arrives at the ER, the waiting room Muzak switches from 1980s soft rock to dramatic symphonic numbers that just scream daytime soap opera? Even if the collective eye roll isn’t as well orchestrated as the Musak, the staff is typically in sync with a weary sigh of “ANOTHER woman who thinks it’s her heart.”

I have a theory, and it’s based on what I was told by the ER doc who discharged me after coming to the hospital by ambulance with classic heart attack symptoms. As he explained, “It’s not our job to find out what is wrong with you, it’s to tell you what isn’t, and this isn’t your heart.”

Now that struck me as an odd perspective from a medical professional. It’s one of those surreal moments that still lives crystal clear in my memory. I was having a heart attack and required emergency double bypass surgery six days later.

The staff definitely determined what was wrong with the guy a few curtains over who was cracked out on PCP. Did they do a few scans and send him on his way, saying, “Go see your internist. This definitely isn’t all in your head”? No, he hung out all day and seemed to be having a fabulous time harassing the nurses and exposing his genitals as they monitored him.

So … back to my theory. Medical schools appear to be teaching our doctors that their commitment to patients is convincing us that our symptoms are not really symptoms. On more occasions than would seem plausible, it has taken three attempts at healthcare to get past the idea that I am either mistaken or at fault for my own misery. The source of this trend, I’m guessing, is a course future MDs are required to take called “Three Strikes You’re Out,” or alternatively, “Third Time’s the Charm.”

Last year, I saw three different doctors for an eye problem. I had severe pain in one eye, uncontrollable tearing in both, and blood-red irritation in the outer white area of each eye. The first opthamologist explained I had dry eyes, brought on by using the “get the red out” eye drops. Imagine my embarrassment to know I’d caused my own problem!

A few months later, with worsening symptoms, the partner in that opthamology practice said, “no, it’s an allergic reaction to something you’re using.” Again, how embarrassing! What a fool I was, to pay for an office visit when I was causing my own symptoms! I threw away mascara, changed face creams, berated myself for poor housekeeping skills, and had my husband flush our water system.

When I absolutely couldn’t take the pain any longer, I consulted a third opthamologist at a different practice. He diagnosed the problem as episcleritis and gave me an effective treatment to control the inflammation.

This scenario of patient “convincing” a doctor to provide care has played out too many times in my life, in varying degrees of seriousness (obviously, the eye ball debacle is not life threatening). I always joke how different life as a cardiology patient would be if cardiologists were cracked open like a crab in medical school, wired shut, and then sent right back to their daily routines … without cardiac rehab. They’re young! They’ll bounce back, right? Sure.

I’ll be accused of doctor bashing, I’m sure, but I do not blame the doctors. Something fundamental in physician training is “broke” and must be fixed. We must determine why doctors low-ball patient concerns. What mechanisms can we put in place to supplement poor communication skills in both parties? How can compassion be built into the system, regardless of personality traits and prejudices? Design an app? Videotape patient concerns for the doctor to view before stepping into the exam room?

Doctors’ perspective of patients must change. This isn’t just a matter of thinking outside the box; this requires an entirely new space — a sphere of ideas. Doctors need to understand what it is to be a patient, in every sense of that word. How to achieve this? I don’t know, but it’s time to try.

“It’s not our job to find out what is wrong with you, it’s to tell you what isn’t, and this isn’t your heart.” I can still hear those words, with a crescendo of violins in the background.

The Sledge Hammer of Social Media

Don’t be fooled by Twitter’s blue bird of happiness logo. Hell hath no fury like a Tweeter scorned!

Actually, scorned is way too melodramatic. “Disagreed with” is more accurate. No, even that’s an overstatement. When it comes down to brass tacks, what I did was NOT agree with a tweet.

Who knew I could be so wrong in under 140 characters? You’d think that would require proper spelling, grammar, and punctuation. But no, seems all it takes sometimes is stating a contrary view to unleash a torrent of entitled bombast.

Others have explored this in a far more eloquent fashion, but let’s consider: I would not berate a total stranger on a bus with every piece of evidence on my hard drive or in Google’s reach to verbally vaporize his stated preference for Pepsi over Coke (blasphemy, I know, but for example’s sake).

So why does the long black veil of cyberspace give people the arrogance to deny a person his or her opinion?

Anonymity is powerful. And with power, to paraphrase Franklin D. Roosevelt, comes responsibility. So, tweet responsibly!

SCAD Research Inc.

Spontaneous coronary artery dissection (SCAD) is a rare and poorly understood cause of acute coronary syndrome, heart attack, and sudden cardiac death. A spontaneous tear inside one of the layers of a coronary artery creates a flap, or subsequent clot, that blocks blood flow to the heart muscle.

Cardiologists typically have never seen a SCAD, but may remember the term from medical school. Twice online, I’ve communicated with women who’ve been discharged from the hospital after a heart attack with no clear diagnosis. After they’ve returned to their cardiologist and suggested the possibility of SCAD, a review of their angiogram does indeed confirm a dissection. I firmly believe the SCAD diagnosis is missed on a regular basis. SCAD just is not “on the radar” of cardiologists in our ERs.

SCAD was first documented in 1931. The following key points summarize what we know about SCAD today:

• The vast majority of cases occur in people with no known risk factors or underlying conditions.
• SCAD is more than twice as common in women than in men.
• SCAD causes heart attacks and can result in life threatening arrhythmias and sudden death.
• Pregnancy is a risk factor for SCAD; 30 percent of SCAD cases in women occur near the time of delivery.
• Seventy percent of SCAD cases occur in people under age 50.
• The average age when SCAD occurs is 42, but it has been documented in a 19-year-old.
• SCAD is an emergency and requires urgent treatment.
• SCAD can recur; up to 10 percent of patients experience two or more events.
• Most frightening of all, we don’t know why.

With true research underway at Mayo Clinic, now the challenge is finding more SCAD survivors to participate in the virtual registry and DNA biobank. So, with heartfelt thanks to a gentleman who turned his tragic loss into an opportunity for others, it is a thrill to introduce SCAD Research Inc., a 501(c)(3) formed to advance awareness of spontaneous coronary artery dissection and support research to improve diagnosis, treatment, and outcomes.

As you encounter stories of unexplained heart attack, please remember spontaneous coronary artery dissection. Your awareness may lead to answers for someone else.

The “Tap Code” of Social Media

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.

Largest Single Center SCAD Study EVER

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.

How online communities support

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.