Moving on to the Next Adventure!

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On the stationary bike testing my lung capacity – 2018

The past 6 ½ months has been a whirlwind. It all started on February 27th. The events of that day triggered an evaluation to determine my eligibility for a heart transplant. I’ve been to the emergency room 3 times and hospitalized twice. I’ve had 17 doctors’ appointments and completed 2 CT scans, a 3-D lung scan, 2 lung capacity tests, 4 ultrasounds, and 3 heart catheterization procedures.

On that quiet February evening, Sandra and I were out to dinner when I suddenly passed out. An ambulance took me to the emergency room at Kaiser Santa Clara Medical Center. The ER doctors admitted me into the hospital to do a battery of tests. The next morning, my cardiologist confirmed that a dangerously elevated heart rate caused my defibrillator to trigger.

A defibrillator is a device implanted into the upper chest and connected to the heart with a wire. The machine is designed to prevent the heart from sending a patient into potentially fatal cardiac arrest. The procedure to implant my defibrillator was done in 2011. For almost 7 years, I had no episodes. February 27th was the second time that it activated in the span of 60 days.

At a follow-up appointment a few days later, my cardiologist shared the bad, but inevitable, news. The heart failure was getting worse and the regimen of medication, diet, and exercise was becoming less effective. She recommended that I consider a heart transplant and referred me to the transplant team. That’s when my plan of care started to speed up.

Sandra and I began with the team’s social worker, who provided an overview of the process. As we listened intently, it was clear that the evaluation was no joke – it was comprehensive and complex. The goal of the process was to ensure that the patient had the unique combination of a failing heart and great health. Initially, that didn’t make sense to me.

The social worker explained that the transplant surgery and recovery is intense. The body’s organs had to be strong enough to withstand the trauma. She went on to describe the components of the transplant workup:

  • Review of medical history
  • Psychosocial evaluation
  • Oxygen consumption test
  • Echocardiogram (ultrasound of the heart)
  • Right heart catheterization
  • Chest CT scan
  • Breathing tests to rule out lung disease
  • Regular blood/laboratory tests
  • Colon cancer screening
  • Dental evaluation
  • Abdomen ultrasound
  • Blood clot testing
  • Stomach, liver, and pancreas screenings
  • Transplant support group participation

Negative results for any one of the tests and screenings could be disqualifying. Sandra and I walked out of the meeting anxious, but hopeful. Our biggest concern was how my bout with Acute Respiratory Distress Syndrome (ARDS) in 2010 affected my lungs. Experts estimate that nearly half of ARDS survivors experience permanent lung damage.

Our next meeting was with the heart transplant doctor. In preparation, I completed a complete panel of blood tests. She was shocked when she saw me. Although the labs showed that I had serious heart failure, I looked as though I wasn’t sick at all. When I shared that I exercised daily and worked a little, she was stunned.

Nevertheless, based on the lab results, she recommended that we begin the transplant evaluation. If the workup concluded that I was healthy enough to proceed, there were three options available: a mechanical heart pump, transplant, or continue with the current plan of care. I was reluctant about the first option, hopeful about the second, and dismissed the third.

Thus began a 6-month sprint to the lab, doctors’ offices, imaging departments, procedure tables, testing rooms, and support group meetings. With each positive result, I inched closer to transplant eligibility. Two potential barriers to my goal of getting a new heart began to present themselves. One hurdle was related to my lungs and the other linked to my blood type.

Predictably, the lung tests registered on the lower end of the spectrum. One exam required an assortment of breathing exercises with my nose plugged and a tube in my mouth while sitting in a glass box that looks like a small phone booth. I did the same on a stationary bike. These bumps in the road extended the evaluation. Due to my history with ARDS and less than optimal test results, the transplant doctor referred me to a pulmonologist.

The lung doctor ordered an additional CT scan, an advanced CT scan, and a lung scan. Additionally, I was tested for sleep apnea. The lung scan was super high-tech. The machine is similar to a CT scan with a 3-D camera that takes images from different angles. The technician injected radioactive material into my veins to follow airflow and blood flow in the lungs.

A few days later, Sandra and I walked into the pulmonologist’s office with high anxiety. Damaged and compromised lungs would be a deal breaker. The doctor was warm and engaging. She mentioned that she rarely meets ARDS survivors and proceeded to explain the procedures and their results. It seemed like it took forever to get to the end.

Her findings were unexpected. The outcome showed no damage to my lungs. NO DAMAGE TO MY LUNGS! This is extremely rare for ARDS survivors. Other than a mild case of sleep apnea that was treatable, my lungs were good to go for surgery. Sandra and I let out an audible sigh of relief and thanked God for the amazing news.

I also have Type-O blood, the most common blood type. This means that there are longer wait times for transplant. Extended delays are dangerous because other organs begin to fail due to lack of oxygen delivered by a weak heart. In my case, the best option to maintain organ health is a mechanical heart pump called a Left Ventricular Assist Device (LVAD).

The LVAD is surgically implanted into the heart and works as an artificial pump. Oxygen rich blood flows through the lungs and enters the LVAD where the machine pushes the life-giving fluid through the aorta and into the rest of the body. The pump, powered by electricity, requires batteries to keep it working. Batteries sit in a pouch wrapped around the waist.

Because I spent the summer of 2010 connected to a variety of life support machines, I was resolved to never put my family through that harrowing experience again. With that in mind, I was initially opposed to a LVAD. I did lots of research and consulted with Sandra and the girls, a priest/friend/spiritual advisor, and LVAD recipients. I now wholeheartedly support this option.

With the workup complete, a committee of cardiologists, the pulmonologist that assessed my lung capacity, the psychologist, transplant nurse, and social worker convened yesterday to evaluate my case. For over 6 months, Sandra, the girls, our support system, and I methodically completed each of the assigned tasks necessary to determine my eligibility for moving forward.

I mentioned to that transplant team nurse that it was like going to college all over again. Doing the work and taking exams were the easy part. Waiting for the confirmation that graduation was a sure thing was nerve-wracking. In a similar state of mind, I checked and rechecked voice-mail and e-mail waiting for word from the committee.

Finally, at around 2:00 PM, the caller ID on my cell displayed the transplant department’s office number. The verdict was in. The white smoke drifted into the air. A decision was forthcoming. I nervously answered the call with trembling hands. The transplant team nurse came on the line. She was calling with good news.

The committee met, she said. The doctors were positive and upbeat. They approved to proceed at once with LVAD surgery and recommended placement on the transplant list as soon as I healed from that operation. Within the hour, Sandra and I sat in a transplant department office with my doctor, the nurse, social worker, and LVAD coordinator. After getting a full briefing on the committee’s decision, there were hugs all around.

While sitting in the passenger seat of the same 2010 silver Ford Explorer that faithfully waited in the hospital parking lot for 3 months that fateful summer, I came to realize that I’ve been through an amazing 8 years. The experience included a heart attack, cardiac arrest, ARDS, medically-induced coma, physical rehab, spiritual awakening, heart failure, and transplant workup.

I’m eternally grateful that I haven’t gone through this all alone. I’ve had God, family, friends, medical professionals, and readers of this blog walking by my side every step of the way. I pray that you all will continue the journey with me. Now I’m moving on to my next adventure. I don’t know what the future will bring. I just know that I’ll face it with faith, hope and love.

 

 

 

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Dad’s Death Taught Me How to Live

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My dad and me on my baptism ca. 1963

Several weeks ago, a friend observed that I was sending mixed messages on social media. One minute I’m dying and the next minute I’m at a party. He wondered aloud, “Which one is it?” After some reflection, I understood the question and acknowledged how readers of this blog could come to the same conclusion.

With respect to the first part of my friend’s observation, I’ll turn to Mark Twain. When the great 20th-century American humorist heard that a newspaper had published his obituary, the crafty old man quipped that, “the reports of my death are greatly exaggerated.” To paraphrase the author of the classic Huckleberry Finn story, I’m not dying anytime soon.

Last week, my compadres were more direct after I paid a visit to the emergency room. They wondered what was really going on. Although my energy is limited, they remarked that I seem upbeat and continue to do many of the things that I love to do. In many ways, that didn’t make sense to them. My comadre finally blurted out, “How sick are you, Comps?” The answer to that question is a tad bit more complicated.

After a massive heart attack over 8 years ago, doctors diagnosed hat I had congestive heart failure. This means that the heart doesn’t efficiently pump enough blood needed to nourish the body. I’m not alone. According to the American Heart Association, 5.7 million Americans suffer from heart failure and the disease accounts for 1 in 4 deaths in the U.S.

About half of those with heart failure die within 5 years of diagnosis. With a whole bunch of faith and the support of family, friends, and health professionals, my first 7 ½ years living with heart failure was relatively smooth. Earlier this year, the smooth sailing entered choppy waters.

On February 27th, Sandra and I were out to dinner (for my salt monitors, it was a restaurant that prepares no-salt meals for me). While engaged in conversation, I suddenly became dizzy and lightheaded. Before I could finish telling Sandra about how I felt, I passed out. I woke up to Sandra caressing my head and asking, “Eddie, Eddie…are you ok?”

By the time I became fully aware of my surroundings, an ambulance arrived to take me to the emergency room. The ER doctors admitted me into the hospital to do a battery of tests. The next morning, my cardiologist confirmed that my heart started racing and triggered a device inserted into my heart 7 years ago to prevent fatal cardiac arrest. Thankfully, the machine worked.

Over the past 6 months, I’ve been to the ER three times, hospitalized twice, and had umpteen appointments with the cardiologist. I’m also doing an evaluation to determine if I’m a candidate for a heart transplant. That process is almost complete. So far, the findings indicate that I’m pretty healthy for a guy my age, with the exception of my heavily damaged heart.

The short answer to my comadre’s question is that I’m very sick. By itself, the current care plan of eating right, taking prescribed medication, and exercising isn’t working anymore. I need to take more aggressive steps to extend my life. Fortunately, there are options that didn’t exist a generation ago for heart failure patients.

In the past, many people died waiting for a transplant. Technology now allows doctors to place a mechanical pump on the heart so patients can continue with their lives until a new heart is available. Once the evaluation is complete, the cardiac team will decide if I’m a candidate and recommend a course of action.

This brings us to the second part of my friend’s and compadres’ observations. I still go to parties, work with east side students, exercise every day, listen to live music, and enjoy going to dinner and the movies with Sandra. If my heart is that sick, how can I still do these things? Faith and my dad’s final days provide the explanation.

My dad was a tough cookie. He lived through the Great Depression without a father, went to war when he was 16 years old (he served in the U.S. Navy during WWII), worked 2 and 3 jobs to support his family of 6 kids, and sent us all to college. I learned all I needed to know about being a man from him.

He taught me how take care of a family, work hard, be a gentleman, maintain a vehicle, properly order a drink in a bar, throw a curve ball, and shoot a jump shot. He’s the reason I love to read and have a passion for sports, music, history, and politics. Because of him, I know the proper way to tie a tie, wear a suit, and polish my shoes. He was a man’s man. I can’t avoid the cliche that he’s my hero, because he is.

Dad’s health took a turn for the worse when he was in his mid 50s. He had a heart attack and a series of small strokes over the next 10 years. By his late 60s, he had a major stroke that left him unable to keep his balance or do much more than sit on his easy chair watching TV. The stubborn nature that guided him through tough times prevented him from seeking physical rehab and using a walker, cane, or wheelchair. He was 69 years old when he died twenty-three years ago, bitter about his fate.

His passing was devastating. He loved life and lived it to the fullest. He loved being around people. I was angry at him because it appeared that he had given up on himself. It was all or nothing for him, so he detested being compromised. As I watched him slowly wither away in self-imposed solitude, I learned life’s biggest lesson. I didn’t have to do it all to enjoy a full life.

I made a commitment that I wouldn’t allow my own stubborn nature to get in the way of enjoying life. Unfortunately, I was unsuccessful at that most of the time. I was too focused on getting my way on the road to “success.” When my health took a turn for the worse at 46 – 10 years younger than my dad –  I was at a crossroads. Because of my experience with his final days, I chose the road that led to living with my limitations as best as I could. To use a baseball metaphor, I plan to go down swinging.

I’ve written in the past how my faith journey has taught me to accept God’s will. Faith inspires me to live every day to the fullest my energy allows while facing the possibility of a shorter life than expected. Faith has also given me the courage to accept the way my dad lived out his final days. It the end, I now know that it was God’s will. Dad continues to be my greatest teacher. His death taught me how to live.