About Me (In My Own Words)
I am a fraternal twin and unbeknownst to me until my late 30s, my more thorough internist ordered an echo after hearing a heart murmur. Diagnosis: Congenital bicuspid aortic valve. For many years, previous doctors also heard the murmur but never took the next step to diagnose. I thank God for His protection during those years of not having a proper diagnosis because I never premedicated for any dental procedures, surgeries, etc.
Once properly diagnosed, I began seeing a cardiologist and had yearly echocardiograms. At age 54, when my echo showed that I was in the severe aortic stenosis range, I followed my intuition and decided - without my local cardiologist's recommendation - to start interviewing cardiovascular surgeons. It was precipitated after returning from a vacation and being out of breath while snorkeling. This was my only symptom! I worked full-time taking two flights of stairs several times a day to my office without experiencing any symptoms. Thank you, Holy Spirit!
I chose to have my bicuspid aortic valve replaced in 2011 (mini-sternectomy) at Cleveland Clinic with an Edwards-Carpentier pericardial bovine tissue heart valve by the very bright Tomislav Mihaljevic, MD (now CEO of Cleveland Clinic). When I had awakened from surgery, Dr. Michaljevic told me that "not a day too soon!" - he said when he opened my chest, fluid was spilling across my lungs. Goodness.
For over a decade, I returned back to life but experienced itchiness on my chest, unusual G.I. issues and inconsistent reactions to foods that confounded my allergist & immunologist and gastroenterologists. Thankfully, a P.A. working at my allergist & immunologist read a medical journal about Systemic Nickel Allergy Syndrome. After discussing this with my local cardiologist, a Metal LTT metal sensitivity blood test was ordered and test results showed a very highly (internal) reactivity to nickel (top of the worst range.) Please know that prior I knew I had a skin allergy to nickel but never thought that the nickel mesh and nickel wiring around my Edwards-Carpentier aortic valve could cause problems.
Despite receiving my "very highly reactive" nickel sensitivity result, I chose to follow a low nickel diet and wait until my valve was in severe stenosis range. Late October 2023, I learned at my Cleveland Clinic cardiologist appointment that I have entered into severe aortic stenosis again. I met with Doug Johnston, MD, chief of the division of cardiac surgery at Northwestern Memorial Hospital and Northwestern University Feinberg School of Medicine in Chicago. (He was previously the vice-chair of Cleveland Clinic's cardiovascular and thoracic department.)
Because Dr. Johnston listened to my health journey since my first replacement and reviewed my blood metal allergy sensitivity test results (indicating high reactivity to nickel), he agreed with my other doctors that this was a huge factor in choosing a valve without nickel and planning how to close up my full sternectomy.
On April 8, 2024, Dr. Johnston replaced my Edwards-Carpentier bioprosthetic valve with the Medtronic Freestyle Full Root Bioprosthetic valve (porcine) that contains zero artificial ingredients and made of plastic components. He used titanium wiring instead of nickel wiring, and also performed an aortic root replacement. The latter was done so that in my 3rd valve replacement (hopefully in 10+ years), the less invasive TAVR procedure could be done.
Thank you for reading "My Story". My wish is that you will learn from someone who has undergone two aortic valve replacements, and from a person with nickel sensitivity. Orthopedic joint replacement patients with metal sensitivities undergo this simple blood test but shouldn't consideration be also given to cardiac implant patients?
I wake up grateful for the abundant care, protection and graces that our God gives everyday and His loving, protective hand over my life.
Many prayers of gratitude to Doug Johnston, MD, my cardiovascular surgeon at Northwestern Medicine (Chicago), Leonardo Rodriquez, MD, interventional cardiologist at Cleveland Clinic, for his thorough and attentive annual assessments, and Imran Ahmad, MD, my current, local interventional cardiologist at Northwestern Medicine Central DuPage Hospital in Winfield, IL, who also provides amazing guidance and care.
A "shout out" to my loving family - my husband, Phil, my two adult children (Dana and Eric), their spouses, my darling grandchildren, and my siblings and many supportive friends.
Adam's book, website, and community is awesome! Don't hesitate to buy his book!
More Info About Me & My Heart
More About Me
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I am from:
Aurora, Illinois
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My surgery date is:
April 8, 2024
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I was diagnosed with:
Aortic Stenosis
Bicuspid Aortic Valve
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My surgery was:
Aortic Valve Replacement
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