It's Survivor Series Saturday Featuring Rob Blumenthal

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It is our pleasure to share with you this beautifully written story by Rob Blumenthal. Thank you, Rob.

My Journey With a Bicuspid Aortic Valve: Why Self-Advocacy Saved My Life

My name is Rob Blumenthal. I am a 62-year-old husband, father, uncle and Director of Operations at a Psychiatry Practice. I am deeply grateful for the opportunity to share my story with the Aortic Hope community, and I hope that by doing so, I can help raise awareness and encourage others to advocate for themselves when something doesn’t feel right.

Living With a Bicuspid Aortic Valve

Approximately ten years ago, I was diagnosed with a bicuspid aortic valve, a congenital condition in which the aortic valve has two leaflets instead of the usual three. At the time, my Cardiologist explained that while this condition can eventually lead to aortic stenosis or regurgitation, many people live full lives without major complications. We agreed on routine monitoring.

About two and a half years ago, my Cardiologist recommended a Coronary Artery Calcium (CAC) scan. My score was over 320, indicating significant plaque buildup and an increased risk of future cardiovascular events. Roughly a year later, following a routine echocardiogram, I was told I had mild aortic stenosis. Once again, the plan was continued monitoring.

When Everything Changed

Everything changed on October 27, 2025.

That morning, I went to Dunkin’ to pick up a drink for my son’s 16th birthday. When I returned home, my wife noticed I appeared short of breath. At first, I didn’t recognize it myself, but as the day went on, my breathing worsened with even minimal exertion. By the following day, I was experiencing intermittent chest pain and pain near my left shoulder blade.

At work, I checked my blood pressure, it was 164/72, very high for me, especially since I was already taking amlodipine for hypertension. Given my symptoms, the owner of the Practice where I work insisted on taking me to urgent care.

An EKG was performed and appeared abnormal to the Urgent Care Physician, who contacted my Cardiologist. While my Cardiologist felt the EKG was unchanged from prior tracings, the Urgent Care Physician strongly advised that, given my bicuspid valve, new symptoms, and age, I should either go to the emergency room or be seen immediately by cardiology. The Physician emphasized that this is often the time when valve failure can occur.

“We’ll Continue to Monitor”

A few days later, I was seen by my Cardiologist’s Nurse Practitioner, as my Cardiologist had no available appointments. Initially, the plan remained to “continue monitoring.” However, my symptoms persisted and worsened, shortness of breath, chest and back pain, elevated blood pressure, and lightheadedness. I pushed for further testing.

A repeat echocardiogram showed progression to moderate to severe aortic stenosis, a significant change from earlier in the year. Shortly after, I received a call from a Medical Assistant from the Cardiology office, who told me my “heart was strong,” but that there was “tightness.” When I asked what was tight and whether I should be concerned, the answer to every question was simply, “I don’t know.”

Despite requesting direct communication with my Cardiologist, I never spoke with him. Instead, I was told by his Nurse Practitioner that because my stenosis was not yet considered “critically severe,” the plan was still to monitor.

Advocating When Answers Were Vague

This period was both frustrating and alarming. I received vague explanations from staff who couldn’t answer basic questions, and despite worsening symptoms, I felt dismissed.

The owner of the practice where I work became a strong advocate for me. With my permission, she shared my echocardiogram results with several colleagues in internal medicine, all of whom agreed that, given my symptoms, age, and bicuspid valve, valve replacement should at least be given serious consideration. Her support during this time was invaluable.

Medical Complexity and Dangerous Delays

After another visit to the Cardiology team, this time with the Physician Assistant along with a brief visit from the Cardiologist, and me requesting more answers, a cardiac catheterization was recommended, However, this introduced another major obstacle. I have a documented iodine contrast allergy dating back to age 16, when I experienced sudden difficulty breathing. I was told steroids could be used to prevent a reaction, but I explained that I had previously had a severe reaction to cortisone that caused blurred vision and carried a risk of permanent vision loss.

The procedure was postponed while the cardiology team tried to determine how to proceed. They wanted me to see an allergist to assess the iodine allergy. After calling multiple allergists, each with wait times of three to four weeks, the Practice owner again stepped in and secured me an appointment within a few days.

The Allergist explained that iodine testing is extremely expensive, only about 50% accurate, and not something he felt comfortable performing. Once again, there was no clear path forward.

After consultation between my Ophthalmologist (a Retina Specialist) and my Cardiologist, it was determined that steroids could be used with extreme caution if absolutely necessary. Approximately 2.5-3 weeks after my symptoms began, the catheterization was finally performed.

Critical Findings and Still No Urgency

According to my Cardiologist, the cardiac catheterization suggested that my aortic stenosis was closer to moderate. However, it revealed another significant finding: my right coronary artery was abnormally positioned, a condition that can impair blood flow, particularly during exertion and potentially explain my symptoms.

Despite this finding, and despite my ongoing shortness of breath, chest and back pain, lightheadedness, and rising concern, I was once again told we would “continue to monitor.”

The Physician Assistant from my Cardiologist’s office recommended a transesophageal echocardiogram (TEE) to further evaluate whether the abnormal positioning of my right coronary artery was contributing to my symptoms. (The Cardiologist did not see me at this visit) However, I was then told that the earliest available appointment for the TEE was 3-4 weeks away.

At that point, I was stunned. I was actively symptomatic, had a known bicuspid aortic valve, had just undergone a catheterization showing structural abnormalities, and yet the plan was to wait more than a month for further answers. There was no sense of urgency, no interim plan, and no reassurance that my condition was being actively managed.

This delay became one of the final factors that pushed me to seek a second opinion. I could not reconcile how a potentially serious coronary abnormality, paired with worsening symptoms, could justify waiting weeks for further evaluation. My instincts told me that something was very wrong.

A Second Opinion That Saved My Life

As my symptoms continued, I began calling other cardiology practices seeking a second opinion, only to be told the earliest available appointments were months away. Finally, through a family connection and the compassion of an office manager who recognized the seriousness of my situation, I was able to see Dr. David Shipon at Jefferson Health in Philadelphia within one business day.

That appointment likely saved my life.

After reviewing my history, test results, and symptoms, Dr. Shipon immediately sent me to the emergency room and contacted Cardiac Surgeon Dr. Plestis. As I was leaving Dr. Shipon’s office, I received a call from Dr. Plestis’s team informing me that I could be at risk for an aneurysm or heart attack at any time and stressing the importance of going to the emergency room immediately.

Surgery Becomes Urgent

I was hospitalized for three days and discharged the day before Thanksgiving. After extensive testing, including another echocardiogram showing severe aortic stenosis, it was determined that I needed surgical aortic valve replacement within 10 days along with repair of my right coronary artery.

I faced a difficult decision: a mechanical valve requiring lifelong blood thinners, or a tissue valve with an expected lifespan of 10–15 years. After confirming with Dr. Shipon and Dr. Plestis that my anatomy would allow for a future TAVR-in-TAVR procedure, I chose a bovine tissue valve to preserve future options as technology continues to advance.

Recovery and Reflection

After surgery, friends and family told me my skin tone had returned to normal, the grayish color I had before was gone. I spent several days in the ICU and step-down unit and was discharged home after five days.

Today, I am six weeks post-operative, recovering well, and have just begun cardiac rehabilitation. I am profoundly grateful and acutely aware that the outcome could have been very different had I not continued to push for answers. I cannot thank my family, friends, and advocates enough for their unwavering support during one of the most challenging periods of my life.

The Power of Self-Advocacy

My greatest takeaway is the critical importance of self-advocacy. If something doesn’t feel right, speak up. Ask questions. Push for clarity. Advocate for yourself or for someone you love. It truly can make the difference between life and death.

Advocacy Lessons From My Journey

Symptoms matter: Even if test results seem “borderline,” worsening symptoms deserve urgent attention.Vague answers are not answers: If you don’t understand what’s happening, keep asking. Delays can be dangerous: Waiting weeks for critical testing while symptomatic is a red flag.Second opinions save lives: If something doesn’t feel right, trust your instincts and seek another perspective.Advocacy can come from others: Family, friends, and colleagues can help amplify your voice when you’re overwhelmed.

Thank You, Aortic Hope

Thank you, Aortic Hope, for the vital work you do to spread awareness, provide support, and offer hope to those navigating aortic disease. I am honored to share my story with your community.

Sincerely,

Rob Blumenthal