Unveiling My Personal Journey: Insights into My Interactions with Doctors, Family, and Friends"

Life is a journey filled with surprises and challenges, particularly regarding health issues. For many, facing heart problems can evoke feelings of fear and uncertainty. I feel compelled to share my story to encourage others to advocate for themselves. If you haven't read my first blog about who I am and how my journey began, please do so. In this section, I will get more personal, sharing some difficult experiences and the mental struggle of managing health issues, including dealing with a doctor who wasn't very supportive and family and friends who offered their personal opinions, causing discomfort in my journey. I hope to convey that you are not alone in whatever you are facing and that you matter. Your health is important, and regardless of others' opinions, always continue to fight for yourself and advocate for your well-being.

Understanding My Diagnosis

Understanding the heart's electrical system, especially the SA node, involves recognizing a cluster of specialized cells in the right atrium. Known as the heart's natural pacemaker, it regulates rhythm and initiates each heartbeat, maintaining a rate between 60 to 100 beats per minute. In my case, my SA node malfunctioned for unknown reasons, causing my heart to stop and leading to dangerous loss of consciousness.

Detecting heart "plumbing" issues is easier than diagnosing electrical problems, which require patience and specific tests. A loop recorder, an implantable device, monitors heart activity continuously. After implantation, it took three weeks for doctors to diagnose my condition after 13 years, revealing the need for a pacemaker to ensure my heart functions properly.

The process was fraught with confusion, anxiety, and feeling misunderstood by important people.

The Doctor Who Missed the Beat: My Electrophysiologist Story

I spoke before about the incredible cardiologist who was determined to find out what was happening with me, and I can't commend him and his team enough.

In the next part of my story, I'll discuss my "other" doctor, who wasn't as supportive or understanding as my cardiologist.

My initial appointment with my electrophysiologist is unforgettable. I had been following my other doctors' orders and undergoing various tests. My visit with the electrophysiologist occurred shortly after I wore a portable heart monitor, which provided questionable data—acceptable for my cardiologist but not for my EP doctor, short for Electrophysiologist. During our meeting, we discussed my 13-year history of fainting, a car accident scar, and a recent issue with a low heart rate. The doctor commented, "you have the heart of a professional athlete," which left me uneasy. At 36, I was aware something was wrong. He diagnosed vasovagal syncope, triggered by fear, stress, or pain, but I hadn't experienced these when fainting. He suggested buying an Apple Watch to monitor my heart, which I found surprising.

After several tests were completed, my cardiologist decided to insert a portable loop recorder, scheduled for nearly a month later. I hoped it would provide answers, although I questioned the decision because of my skepticism towards my electrophysiologist.

So, there we were, the day had come for the procedure. My husband and I went to the hospital for this hour-long procedure, after which I would see my EP doctor, whom I suspected was not on my side. And I was right. Dressed in my gown, ready to go to the surgery room with my husband waiting to say goodbye, the doctor entered... Although I knew he wasn't supportive, I was certain that after reviewing my heart's performance during the stress test, he would recognize something was very wrong and agree with my cardiologist's orders. Boy, was I mistaken. The first thing he said upon entering my room, standing by my bedside, was, "So, you didn't want to wear the Apple Watch, huh? You just want to go straight to the loop recorder." I was speechless but responded, "Did you not see my stress test results?" And unbelievably, he said, "No, I haven't," opened my file in front of my husband and me, and said, "Oh, well, I see," and still replied, "Well, I think you might need to see a neurologist!" I couldn't believe it.

At that moment, my face was probably bright red, and I was in shock, unsure of what to do. I felt like crying, screaming, and just walking out. Thankfully, my husband was there, the one who has seen me faint more times than he'd like. He told the doctor, "No, we're here, and we trust our cardiologist and the steps he's taking. If she faints again with this device, we'll know and proceed from there, possibly consulting a neurologist if necessary." I'll never forget him standing by my side and advocating for me like that. My husband isn't one for confrontation. He rarely complains if a $50 steak is overcooked when he ordered medium rare. So, it meant a lot to me. It had been a long journey for both of us, and as parents of two young children, we wanted answers.

I returned to the surgery room and received the device, despite discomfort and a disagreeing doctor. The procedure was intimidating as I was awake, without anesthesia or calming medication, despite my anxiety. Recalling the doctor who explained my stress test results kept me strong, unlike the current doctor who barely reviewed my file. This was unsettling, suggesting something might be wrong with my brain. I went home to heal, questioning if the costly device was necessary.

Your Heart STOPPED

Just three short weeks later, I was back in the hospital. My EP told me directly, "Your heart stopped for a very long time. You need a pacemaker, and we will perform this surgery tomorrow first thing in the morning." You might think I would be shouting, "I told you so," or saying something to insult him for his misdiagnosis, but I didn't. Instead, with all my emotions, I simply said, okay. I'm ready to be fixed, and that was it. We discussed further what to expect and how we would proceed. I've always considered myself a fairly intuitive person, and in that moment, I sensed that he was acutely aware of his mistake. Although I never received an apology, likely because a doctor of his stature would find it too difficult to admit his error directly, I felt his acknowledgment.

I decided to let him perform my procedure, hoping he would learn that each individual is unique and not everything can be assessed by textbook standards. I haven't seen that EP doctor since, as I chose someone else for my annual check-ups for convenience. I hope his attitude has changed, given his misdiagnosis, recognizing that even experienced doctors can make mistakes. The key is being willing to change and learn from experiences, as I have.

"Discovering Your Strength: Remaining Resilient When

Confronted with Criticism"

Comments frequently minimized my situation, but one moment is particularly memorable. I got my stress test results on the morning of our annual pie baking at a family member's house, right before Thanksgiving.. Facing the fear of a blood clot, I still attended the family event, prioritizing my kids' experiences. Family is crucial, so despite my fears, I joined the tradition.

Some people speak without thinking. Though I don't question her intentions, her words impacted me. It's important not to take such comments personally.

During the family Thanksgiving gathering, I chose to put my worries aside and focus on enjoying time with family. Shortly after my arrival, someone loudly inquired about my test results, not out of concern but as if expecting a trivial answer. When I shared my news, she questioned my doctor's qualifications, downplaying my situation and trivializing my health concerns. This made for a challenging Thanksgiving for though I felt like everything that had happened to me for the past 13 years was being questioned and downplayed.

Here's why I'm telling this story: don't let it affect you as it did me for too long. People like that either want to bring you down or simply lack empathy and understanding. I've had neighbors, even on the day of my surgery, suggest I get a second opinion. My heart had STOPPED! A device in my chest detected it not once, but TWICE, and after waiting 13 years for answers, your advice is to get another opinion? Seriously! Some people speak out of turn for reasons I can't understand... Trust your instincts. Listen to your body. Find a doctor who truly cares, takes the time to perform tests, and examines your results. Disregard the rest. Be strong in your journey and surround yourself with those who support you unconditionally. Let them be your people.

Embracing a New Normal

Today, my life looks quite different. Reflecting on my medical journey, I realize how far I’ve come. I not only feel healthier, but I also appreciate life’s simple pleasures more deeply.

Part of adjusting to my new reality involves seeing my doctor regularly to monitor my health. We discuss not just the technicalities of my heart health, but also how I’m feeling overall.

The simplest things, like taking my kids to the park, now bring me immense joy. I appreciate these small moments more than ever and strive not to take anything for granted. A walk in the park now fills me with happiness, something I may have previously overlooked.

I can still enjoy all the activities I've always loved, like working out, playing with my children, skiing, and biking in Colorado. However, there is one thing I'm slightly hesitant to do again, and that's scuba diving, but maybe one day I'll overcome that fear. I don't have any significant restrictions with my pacemaker.

Things that have changed include not being able to go through a regular metal detector or place my phone by my chest. Having MRI scans can be riskier now that I have this device, but they can still be performed. I don't wear my seatbelt the same way when driving, as it is very uncomfortable since it rubs directly on my device. You can either buy a cushion or do what I do and throw that part of the seatbelt behind me. Carrying a purse, especially crossbody ones, is something I never do over that shoulder as it can cause discomfort. Mainly just tedious stuff like that.

I have routine checkups with Medtronic technicians, and the process is quite straightforward. They simply place a magnetic device on my device, which transmits data to verify that everything is functioning correctly. Additionally, I have a phone app that operates through Bluetooth and remains continuously connected to my device. It's both strange and fascinating.

This device isn't permanent; the battery will need replacing in about 10 years, requiring surgery. They're hopeful that by then, an updated device with a long-lasting battery will be available. The device is visible, but I choose not to conceal it, as it saved my life and is now a part of me. Many have it worse, like those with amputations or scars, which makes us unique. I wear it proudly, as it wasn't my fault I needed it.

Embrace your identity and use your journey to guide others. The Bible, in 2 Corinthians 1:4, encourages sharing experiences to comfort others. Even if not religious, sharing can create meaningful connections and transform lives.

Additionally, my experience has rekindled my enthusiasm for participating in community activities. I have become a supporter for those encountering similar difficulties, offering advice and assistance. I aspire for my story to bring solace to anyone dealing with health problems, reassuring them that they are not alone.

Final Thoughts

Navigating my heart surgeries and the subsequent recovery has fundamentally changed how I view health and community. The support from my family, friends, and my compassionate doctor proved essential during this challenging time.

Healing isn't merely about physical recovery; it involves emotional resilience and the strength gained through relationships. If you or a loved one are facing a medical challenge, remember to cultivate your support network, express your fears, and allow yourself the time to heal. While the road may be filled with uncertainties, hope and perseverance can lead you to brighter days ahead.

And don't forget... The Beat Goes On!