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Archive for the ‘Research’ Category

What’s worse; suspecting you have heart disease or knowing for certain that you do?

If you answered that fear lies more in suspicion, you’d have research to back you up.  But do we really need research to tell us what we already know?

Stating the Obvious

Congratulations, Science!  Another fine example of useless information disguised as ‘research’.  It’s ridiculous to think that good money was spent researching what we already know to be true.  Of course we fear the unknown; especially when it comes to our health.  When something goes wrong, we turn to a doctor.  We ask questions.  When answers don’t come, our minds run wild.  Then we question ourselves.  “What is causing this?  Can they operate?  Am I going to die?”   

Deliver Answers; Not Sound Bites

Anymore it seems that we, Joe Patient, need to rely more on ourselves than our doctor.  While it is true that no doctor can be completely versed in all-things heart disease, one would hope that they could recognize their own limitations. 

We read so much about heart disease; how stress contributes to it, how blood pressure affects it.  But it’s what we do with the information that defines us.  Do we allow what we read to embolden us or lull us into quiet complacency?  Do we rely too heavily on the ‘professionals’ out there or do we take a more proactive approach to our health?  Are we waiting for them to make it right?

Stop Waiting

So much of our time is spent waiting.  We wait for appointments.  We wait for test results.  We wait for answers.  Waiting takes your power away and places it in the hands of someone who doesn’t have chest pain like you do.

An ancient proverb states that ‘Expectation postponed is making the heart sick’. 

Waiting is a luxury your heart doesn’t have.

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Women are a unique breed.  This is especially true of women with heart disease.  Why do I say that?  For all of the empathy and care we shower on our loved ones, we constantly neglect ourselves. 

Once diagnosed with heart disease, we attempt to live life as usual.  We continue to work, clean the house, shuttle the kids around, make dinner, etc.  All the while suffering in silence.  Is this because women are somehow able to rise above the pain and ‘push through it’?  Not in my case.  Truth be told, I’m the biggest wimp around. 

Perhaps the reason lies in our motivation.

Family First

Ask any women if she believes that her family should come first and the answer would be yes.  That’s just how we are hard-wired.  To be sure, it should be that way.  We pride ourselves on our ability to care for our family’s needs.  We relish the successes our family experiences and may even pat ourselves on the back now and again.  All fine and good…to a point. 

Here’s the question: At what point do you quit pushing yourself passed your set limits to help others?  Do you really think that, by doing so, you are helping your family?

A Prideful Heart

Perhaps it can best be explained by way of example.  Last week my family and I went to Disneyland.  As usual, my husband asks me if I think I’ll need a wheelchair.  It’s 8:00AM; I feel good so I tell him that I won’t need a wheelchair.  The look in his eyes was one of disbelief/confusion/annoyance.  He says, “We both know you won’t be able to make it down Main Street let along walk all day long!” So why did he ask the question?  He did so to help me realize that my decisions regarding my health directly affect him.  Poor guy, had I insisted to skip the wheelchair, he would have had to walk clear to the other side of the park!  I wasn’t about to do that to him again. 

The bottom line is my pride got in the way.  I know my limits.  I’ve had this silly disease long enough to know what I can and cannot do.  Still, I experience what I call ‘selective memory’ on occasion.  I’ll have a good day, maybe even two.  All of a sudden I think I’m back to my old self.  That is until I insist upon pushing myself ‘for the greater good’.

Do yourself and your family a favor; let go of the pride.  Admit you need help.  Don’t be embarrassed or ashamed to ask for it. 

Heart disease may not show on your face, but pride can be seen a mile away.

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“I felt so sorry for you.  I didn’t know how I could help you.  All the doctors you saw said there was nothing wrong with your heart.  It took five years to finally get a doctor to listen”.

The conversation I had with my husband last week nearly broke my heart.  You see, all this time, I had neglected to see how my condition had affected my husband.  It has now been eight years since the onset of symptoms.  Eight years of worry for my family. 

It’s one thing to have to wrap your own mind around a chronic condition.  To somehow express to your family the anguish and worry your constantly feel.  All the while trying your best not to let the acknowledgement crush you.  Sometimes your family understands, most times they act like they do.  How can they fully understand?  I’ve heard it said that to empathize is to feel your pain in my heart.  Perhaps it could be better said, I feel your heart pain in my heart.  Is that even possible?

Help Them Understand

Men are different creatures all together.  If your husband is anything like mine, it’s all about the facts.  While emotion plays into everything in life, when it comes to heart disease, it’s the facts that enable him to react.  So, get your facts straight.  Learn all there is to know about your specific form of heart disease.  Share this information with all those you hold dear.  Thankfully, we have so much more information online than we did even a few years ago.  Websites such as EmpowHER offers health professionals who enable you to ask your health question and get a response with 24 hours.  Free of charge, no less.  So, really, the opportunity for you to take charge of your condition is yours for the taking.

How They Can Help You

First and foremost, let them help you.  Yes, you are the ‘expert’ on your condition and only you can know the depth of its affects on you.  That doesn’t mean that they don’t have anything to contribute.  The best advice you’ll ever receive doesn’t come from within.  It comes from your friends, from your family, and from your online community. 

Second, appreciate them for the situation they find themselves in.  Life was drastically different before you had to go and get heart disease.  Let them take the necessary time required to grasp that concept. 

Healing begins with understanding.

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I ask that question because the term ‘heart disease’ is generic.  Heart disease or cardiopathy is an umbrella term for a variety of different diseases affecting the heart.  It covers all things wrong with the heart, from coronary heart disease to ischemia to heart failure.  This shouldn’t surprise us, however, as the same can be said for cancer.  The term ‘cancer’ obviously covers the nature of the disease.  However, it’s only when you focus on where the cancer lies that one is able to determine appropriate treatment.

Just the same, it took me a while before I realized that I had a specific type of heart disease.  When first diagnosed, I figured one size fit all.  Thankfully, I have a cardiologist who knows the difference; especially as it affects women. 

Information from the Cedars Sinai Women’s Heart Center tells us, “For men, heart disease often manifests as blockage in the large arteries of the heart.  One of the major discoveries of the WISE study is that many women with chest pain or other symptoms have microvascular disease, a narrowing of the small arteries and blood vessels of the heart.  Blood flow to the heart is restricted by fatty plaque buildup, but the restriction does not show up in traditional diagnostic exams.” 

Could It Be Coronary Microvascular Heart Disease?

Information from The Women’s Heart Center continues, “until recently, this difference led physicians to discount the possibility of heart disease in many female patients.  These women often found themselves making repeated visits to physicians and hospitals trying to unravel the mysteries of their symptoms.”

I continue to read of dozens if not hundreds of women asking for advice as to what their symptoms mean.  Tests are run but no conclusive evidence of heart disease is found.  So many of them faced with apathetic doctors who, because this is a relatively new diagnosis, find themselves frustrated and thinking that it’s all in their heads.

Well, it’s not.

Women often experience chest symptoms differently than men.  It’s all of those tiny microvessels that surround the heart that malfunction.  Traditional testing, such as angiograms and EKG’s may not be able to identify the problem; at least not at the outset.  Specialized testing must be done in order to determine if it is in fact CMD.  For instance, there is a specific type of angiogram one can undergo which tests how your microvessels respond to different medications. 

Identifying the Culprit

Only after determining what kind of heart disease you have can you obtain appropriate care.  If you find yourself in the hands of a doctor who is not familiar with CMD, find a doctor who is.  Don’t give up because the answers are out there.

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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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Ah, the Internet.  As my favorite android once said, “Thank the Maker!” – C3PO.
 
This fantastic tool has enabled us regular folk to determine for ourselves the course of our care.  Think it hard to believe that a little research can mean the difference between a correct diagnosis and being handed Prozac?

Think again.

I’ll never forget the time I met with the ‘best’ cardiologist in Thousand Oaks.  I was determined to finally get to the bottom of my chest pain.  I arrived with all of my research in hand.  Even though I was to undergo the same battery of tests I had taken before, this time it would be different.  This time I had questions for the doctor

He gave me all of 3 minutes of his time asking vague questions about my chest pain.  Generic questions, like, does my pain go away with rest; and, does it hurt when I bend over.  Um, duh!

Anyway, the testing began.  After several hours enduring an EKG, Chest X-Ray, blood tests, etc., I was told that there is nothing wrong with my heart.

Here is where the research I did came into play.

I asked the doctor if there is a chance that my problem was microvascular in nature.  He looked at me incredulously; his expression indicating the gall I must have to question him.  Undeterred by his arrogance, I asked a more specific question.

“Do you think it possible that I suffer from Syndrome X?”

His response?

“No; you most certainly do not.  You are too young for that”.

Therein lies my point.  All cardiologists cannot possibly be familiar with all aspects of heart disease.  How could he have known that Syndrome X (microvascular disease) falls to those of a younger age?  How could I expect him to know that the tests just completed were originally designed with male patients in mind and are specific in locating problems in the large vessels?

You can’t. 

That, my friends, is why you never walk into a doctor’s office without doing your own research.

How have you prepared and succeeded at the Doctor’s office?

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