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Posts Tagged ‘Cedars Sinai’

If asked if the current state of your heart disease is acceptable, how would you answer?

It’s a tough one; I know.  Just yesterday I was asked this very question.  “If, when we first met, your chest pain and quality of life was terrible, 10 being terrible, what number would you assign your quality of life now?” asked my super-hero of a doctor, Dr. Bairey-Merz.

Looking her straight in the face, I responded, “That’s a tough thing to quantify”.

How do you assign a number to the quality of your life?  Of course, I understood the question.  I realized that she needed a figure to determine where I am on my journey.  How else is she to know what to try next. 

Leaning back in my chair, I looked down at my hands and fiddled with my ring.  Slowly raising my eyes, I assigned a number to my life. 

“I estimate my quality of life currently to be a 3”.  Her face relaxed a bit, but I saw no smile.  “About 75% better than when we first met; would you agree?” she asked. 

That’s when it occurred to me.  Her face gave her away.  This was the best it would ever be.

The Best Compared To What?

Every six weeks I visit my wonderful doctors.  With each passing week, however, something very interesting has happened.   My visits with both Dr. Bairey-Merz and the fabulous Dr. Margo Minissian focus more on managing my condition and less on curing me.  ‘Curing me’….  Only now am I beginning to realize how stupid I was to think that I would be cured.  After all, I have Microvascular heart disease.  You can’t operate on the tiny vessels around your heart. 

Why Compare?

I know my life will not be returning to the old ‘normal’.  To be sure, 75% better is better than 0% better.  Even still, the problem isn’t so much in the number assigned to my quality of life as in having to assign a number. 

It’s hard not to compare.  But remember; comparisons do one of two things; they either make you feel bad because others have it better than you or make you feel better because others have it worse than you.  Either way you lose.

So, I will stop comparing my current self to my old self.  I will stop comparing what I could do then to what I can do now.  I’ll stop comparing — period. 

Call it a compromise if you will.  But life is worth living.  Nothing compares to that.

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As I exited the Cath Lab, I felt a sense of relief wash over me as I realized the procedure was over.  An angiogram with adenosine-stress cardiac magnetic resonance imaging isn’t the most comfortable procedure to endure; especially if you have to ‘use the bathroom’ twice during the procedure.

Wheeled on a gurney into recover, my two doctors, Drs. C. Noel Bairey Merz and Chrisandra Shufelt followed.  Once I came to a stop, Dr. Bairey-Merz leaned in and said, “Well, the good news is we know what’s wrong with your heart”.  That’s all I needed to hear.  While the doctors continued to talk, I didn’t hear a word.  Ten minutes into it I looked at Dr. Shufelt and asked her to promise me that she would find my husband and son in the waiting room and explain to them what I couldn’t comprehend.

This was the culmination of five years of searching for a doctor who could find what was wrong with my heart.  As a young woman experiencing chest pain, I was told time and again that ‘I was too young’ for heart disease or perhaps I needed to ‘lower the stress’ in my life.  In actuality, all I needed was a doctor with the skill set and mind set to listen to me objectively.

That is exactly what I found in Dr. Bairey-Merz and her staff at the Cedars-Sinai Women’s Heart Center.  These fine doctors have been leading the way in women’s cardiac research for several years now.  Under their care, I am now participating in my third Research Study.  Each study I’ve participated in has greatly bettered my situation.

As of December 2007, I have had the piece of mind in knowing the name of my condition;  formerly known as ‘Cardiac Syndrome X’,  better known as Coronary Microvascular Disease.  I can honestly say that, had it not been for these fine doctors and the research they’ve done, I wouldn’t be telling you this story right now.

It is now my focus in life to get the word out about Ischemic Heart Disease and where women in a similar situation can get the care they so desperately need.  There are a lot of us out there; they are waiting to be found.

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Why in the world would a person choose to admit herself into a hospital to undergo scary tests on her heart?  What!??!  This doesn’t sound like fun?  Well, you are right there.  It’s not fun.  In fact, it sucks.  But, if the results will one day contribute to the ‘betterment of womankind’, count me in. 

That’s the line my cardiologist used to get me onboard for the first Clinical Study.  I say ‘first’ because, as it stands, I’m currently involved in my third study with the good folks at Cedars-Sinai Women’s Heart Center.

It’s probably the altruistic attitude of my doctor and all those I’ve met there that has prompted me to share what I’ve learned with you all.  But, I digress.  What we will discuss today is two of the major cardiac procedures I underwent when participating in a Study.  But first…

 Why Choose To Participate

Interesting question.  I imagine that for each of us, the answer would be different.  Are there holes in your diagnosis?  If so, are you willing to try new therapies?  Are you near enough to a research hospital that you could participate?  How will this affect you and your family?  The list goes on and on.  Let’s just say, however, for the sake of argument, that you do enlist in a Cardiac Study.  Here is what you can expect from my limited experience.

Testing

You will undergo tests to make sure that you meet the criteria for participation.  Included will be a brief physical exam, a review of your medical history and a blood draw. 

Depending upon the type of  Study you’re involved in, you may have to undergo a Coronary Angiogram.  The link provides all the details; what is done, what you can expect as far as recovery time, etc.

For my second Study, I underwent a Cardiac MRI.  This test is certainly a bit more state of the art.  If you are prone to claustrophobia, there are MRI machines with openings, which help a lot.

I know that ‘womankind’ will certainly benefit from the finding in the Clinical Studies I participated in.  Even now, my symptoms have significantly decreased because of the findings of and adjustments made to my medication.  But, as with anything, its good to know what you’re getting into before you get involved.  Don’t you agree?

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Women’s Heart Disease is experiencing an identity crisis.

Perhaps you read the article in the Los Angeles Times.  As it stands, all heart disease is referred to by the medical terms of coronary artery disease or coronary heart disease.  This is a serious problem for women.  Women experience and display different symptoms than men.  Additionally, the current focus of treatment for heart disease centers on obstructive coronary artery disease.  While this is fine for men, women have less obstructive disease but higher rates of ischemia.  To make matters worse, women with heart disease have more microvascular dysfunction – affecting the small blood vessels of the body – compared with men.

A lot of bad news, right?  Well, to clarify matters a bit, a name change has been recommended which may help doctors tailor diagnostic tests and treatments to better suit the female patient. 

The good folks behind the W.I.S.E. Study at Cedar-Sinai argue the term ‘Ischemic Heart Disease’ should be used to describe the illness experienced by women. 

Until this is understood and accepted by the medical community as a whole, however, we need to be prepared to offer a bit of education to our treating physician.

So, what questions might you have prepared for your doctor should you believe your chest pain may be microvascular in nature?

Questions for Your Doctor

 Whether this is your first trip or a follow-up visit, be prepared with the following questions:

 1.)     What kind of tests will you recommend / perform? 

2.)     What results do you expect to find?

3.)     Can these tests detect ischemia in the small vessels?

4.)     Are you familiar with ‘Syndrome X’ a.k.a. Microvascular Angina?

5.)     What further testing is available should initial testing fail to find anything?

 Be prepared with research in hand to accompany the above questions.  The following web links should help:

 http://www.americanheart.org/presenter.jhtml?identifier=4739

http://www.downloadheart.us/how-to-deal-with-microvascular-angina.html

http://www.hearthealthywomen.org/index.php?view=article&id=73&Itemid=1&option=com_content

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