“I do, especially remember my amazing endocrine surgeon… pulling up the website for Pheo Para Alliance…  I guess she realized I needed that kind of support. “

On September 5, 2019 I went into a dental clinic for a scheduled procedure to finally get dental implants. Yeah me. I conquered my fear. Because of my fear of dental procedures, I was given Valium to calm my nerves. I was also required to have a physical examination and get a medical release as I was having some issues with my blood pressure. Mostly, episodes of high blood pressure because of high anxiety, or so I thought. I was placed on blood pressure medications for three months prior to surgery. The dental clinic also required that I have an anesthesiologist in the surgical room. Okay with me.

All systems go.

However, at the start of the procedure my blood pressure went too high to proceed. The procedure was stopped; more medication and it came down. The procedure starts again, blood pressure went high, procedure stopped, more meds. But unfortunately, this time my blood pressure went too low and I crashed: my heart stopped for two full minutes. The clinic staff went into emergency mode and called 911.

I was immediately rushed to Northwestern Medicine and placed in a medically induced coma. My family, who lives out of town, were told that I would not survive the ordeal as there was too much trauma to my heart. My friends here in Chicago sat by my side and told the doctors of my inner strength, my good health habits and my life’s accomplishments. They knew that I would survive.

Well, I did survive. I woke up in ICU, thinking that well finally I got those dental implants and that I was in recovery from the surgery. I felt so relieved, but my mouth was extremely sore. Well imagine my surprise when I was informed of what really happened to me, informed of my heart stopping, of acquiring pneumonia, of my heart rate and blood pressure being extremely high. Of course, I was in a state of shock but grateful to be alive. Grateful to have survived such a harrowing event that I have no memory off. No memory that I had been in a coma or what transpired at the dental clinic.

Over the course of many weeks, I underwent a battery of tests to determine the cause of my blood pressure and heart rate still being extremely high. I went back and forth from the ICU, to the CCU with many tests being performed more than once. Having blood drawn twice a day, having my vitals taken every 4 hours. Being placed on different nutritional plans. The medical specialists were stumped.

They all told me that I survived my ordeal because of my overall good health: I was 59 years old with no major or minor health problems except I inherited soft teeth that were beginning to fail me (thus the decision to get dental implants). While undergoing so many medical tests I felt like I was in an episode of “Grey’s Anatomy” or “House, MD.” I was treated like a “celebrity” because of all the extra attention.

Finally, during the third week of my hospitalization I was diagnosed with Pheochromocytoma. That night I spent six hours on the internet reading and trying to decipher and understand my diagnosis. I was too numb to cry. I was too scared to worry. I was too overwhelmed to grasp the fact that a tumor was inside of me wrapped around my right adrenal gland, impinging on my kidney and liver.

Surgery was the only solution. A very risky procedure. But not yet, my blood pressure and heart rate were still too high. It took weeks of trial and error of medications to get my body surgically ready. More tests, more meds, more worry.

Before the surgery was scheduled however, I had a cardiac episode and was rushed to CCU for 48 hours. They thought that I had had a heart attack. Tests indicated that was not the case, but my endocrine surgeon delayed the surgery. More medications to get me ready. The best part of that was being able to eat all of the salt-based foods that I could ever want – potato chips, popcorn, Cheetos, Doritos. Who would have thought they would ever get tired of snacking on potato chips! My mouth and tongue were even too salty! But I ate them all for the cause.

Surgery was scheduled again. Surgery was successful. I had an adrenalectomy of my right adrenal gland. My surgeon was able to spare my right kidney and liver. Yes, I survived again. I have a beautiful 7-inch scar to prove it. Then came the weeks of rest and recovery.

Finally, being at home in my own place, able to cook and take care of myself. Things were going well until I began to become weak, always exhausted and unable to take a full breath. I called my physician’s assistant and she told me to go straight to the emergency. Again, I’m hospitalized and after more tests I am told that there is water on my heart and lungs and I’m in heart failure. I’m diagnosed with Congestive Heart Failure. My heart is operating at 17%, I’m put on six medications, a heart healthy diet, cardiac rehab for three months and fluid restriction. But I survived again.

Well three weeks ago, my last doppler echocardiogram showed marked improvement. I’m no longer in heart failure as my blood flow in and out of my heart is now above normal 55/50. Genetic testing showed that I don’t have the gene for pheochromocytoma. I, was however, diagnosed with cardiomyopathy so I must do my cardiac exercises and be retested in three months to determine whether is improvement of my heart muscle. This time I am not worried.

Though I don’t recall much about my hospital experience (I strongly believe in selective memory), I choose not to remember the blood draws, the names of the medications, the medical imaging tests, etc. I do remember all of the hospital staff that cared for me, the nurses, the specialists, the interns, the residents, the nutritionists, the sanitation staff. I tried my best to say thank you for your care each and every time they entered and excited my room.

I do, especially remember my amazing endocrine surgeon placing my laptop on my lap, pulling up the website for Pheo Para Alliance one day when she stopped by my room to chat with me. Looking back on that moment I guess she realized I needed that kind of support. That night I read so many of the stories of survivors until 2 o’clock in the morning. I was inspired by their words of courage and hope.

And now ten months later, I am writing my own Pheochromocytoma story. Unbelievable. I’m crying now because I am so happy, I am so healthy, I am so looking forward to my future. I hope that my story and my medical journey can inspire someone newly diagnosed. You will survive. I did.