Joan Jahnke, Emory Clinic patient and patient of Emory Heart & Vascular physician, Dr. Habib Samady, shares her journey through her diagnosis and treatment of Cardiac Microvascular Endothelial Dysfunction with Vasopastic Angina.
I have led an active life and thought I was doing everything possible to keep my heart healthy – eating right, exercising and not smoking, and trying to maintain a relatively low stress life. I was also a cardiac nurse and knew what it meant to be healthy, and why I wanted to remain healthy. So when I closed in on retirement age, I was surprised when I started clutching my chest first, with shortness of breath then with chest pain.
I was diagnosed with Cardiac Microvascular Endothelial Dysfunction (MVD) with Vasospastic Angina in 2008 during a drug challenge catheterization test at Emory Healthcare after two and one-half years of chest pain. My case was very severe and I had a cardiac arrest during the procedure. Each episode of an angina attack is like having an individual heart attack and I was barely able to keep up activities of daily living. I had attacks multiple times during a day, for days on end, with few periods of pain–free stability.
MVD is a form of heart disease found predominantly in women of a certain age. The etiology, or cause, is unknown and each woman with MVD can have different degrees of heart attack-like symptoms. I have had chest, arm, axilla, jaw, ear and back pain, and just simple fatigue with this MVD.
Treatment is dependent on symptoms and presenting complaints. The first important treatment step is opening up the affected small heart muscle microvessels with nitroglycerine. This allows oxygenated blood to flow freely through the heart muscle to supply it with oxygen and then out to the body’s general circulation. This relieves the angina pain greatly and reduces the shortness of breath that occurs. Nitroglycerine can be in sublingual, oral spray, patch or in a pill form.
The second important treatment is with a medication called a Calcium Channel Blocker that greatly reduces the irritability of the affected vessels and again, reduces pain.
To help these microvessels from developing plaque, I am very careful about keeping my cholesterol numbers low both by diet and medication.
The heart-sensible treatment for MVD is to attempt a regular exercise regime. In my case the endothelium doesn’t open up when I try to increase my heart’s rate, so I cannot exercise and it has been three and one-half years since I have had any exercise. However, my lipid numbers are wonderful and my weight has not ballooned out of control.
Most of the medications I take for MVD are the same ones given for hypertension, and I may have days when my BP is low so I am careful about sudden changes in position. Further treatment can also include pain management.
Although I have stabilized nicely after treatment at Emory, I am dependent on many medications 24/7 and still have frequent episodes of vasospasm with crippling angina. I visit Emory every few months to monitor the disease. My Emory cardiologist and my local cardiologist both follow my changing symptoms carefully. Emory takes the lead in any changes or additions in medications and both doctors follow my blood work for cholesterol issues. I recently had my first change in three years with my nitroglycerine medication. Initially, I started at a very low dose and gradually worked up to a higher dose sufficient to make me as close to pain free and without chest tightness and shortness of breath. This also allowed me to return to some low level of exertion.
I have learned that these vasospasms can occur by some demand I have caused, like attempting a flight of stairs too quickly or by some other unknown to me demand when I am resting or asleep. The daily calcium channel blockers keep the vasospasms away most of the time so this has greatly helped reduce chest pain from the painful spasms. Over the years as I have developed tummy, feet and leg swelling, my Emory doctor has been careful to prescribe not only medication to help with that sign, but also advising me of simple things as watching salt in my diet and elevating my legs. I also have not been subjected to the many tests or additional heart caths that many physicians might request. I have been tested for sleep apnea and use a CPAP which helps my heart rest at night.
I am very healthy and have developed no other health complaints in six and one-half years. The most wonderful part of having this odd dysfunction is having the Emory doctors who not only understand this dysfunction, but also know how it should be treated for each individual patient as their symptoms develop. They also understand that this difficult, exhausting ailment impacts the very simplest of daily functions, social interactions and normal exercise activities. Dr. Samady listens when I tell him how I must change my lifestyle, stop all exercise and avoid those activities or emotions that could cause a demand on my heart and cause me pain or discomfort.
A big frustration with many MVD patients is that our complaints and symptoms often bring us to an urgent or emergent care setting where none of our signs show on any EKG, echocardiogram, ultrasound or stress test. We look well, present with chest pain and shortness of breath – perhaps anxious – but the tests are generally negative, even the cardiac enzymes. We understand that we may have to rule out other causes with GI and pulmonary tests, but we repeatedly return seeking help, knowing that it is our heart but we repeatedly fail the best current technology tests.
My care at Emory from first contact was relatively pleasant as each physician I saw was confident of my diagnosis. And I am confident in my care because of my doctor’s confidence and superb care in an area of cardiology with so many unknowns.
About Joan Jahnke
Joan Jahnke is now a retired RN. She has enjoyed many career opportunities and great jobs traveling around the world with her husband, who is in the Navy. She is an Emory Clinic patient and sees Emory Heart & Vascular Physician Dr. Habib Samady.