It’s been 53 days since I last posted on ESEReport.com. With that blog entry, I set the stage for how my story could enlighten others by sharing my journey to understand faith, hope, and love. What caused the delay in my writing? Facing the truth without conditions
The fact is that I’m sick, really sick. Period.
That reality is always there slung over my shoulder in a black satchel that carries the equipment connected to the LVAD pump attached to my heart. For the past six weeks, I’ve been frozen in time unable to move forward. All of a sudden, nothing made sense again. My journey took another unplanned detour on the road to enlightenment. I was plunging into the proverbial funk.
I was trapped in my own mind, dwelling on “what if.” Just when it seemed that I understood the meaning and value of faith, I was paralyzed with uncertainty and confusion. I tried to write my way out of it. That didn’t work. I wrote and deleted words again and again. I checked in with St. Paul and the Buddha as I always do when faith is being evasive. Their words made sense as usual, but doubt and insecurity persisted.
Then…two nights ago, I had a dream about my parents.
My dad died in 1995 and my mom passed away 8 years later in 2003. It’s been a while since they’ve come to me in my sleep. When I see them, I’m always the little boy that feels secure and alive playing in the backyard at 48 Viewmont Avenue or the teenager walking through the house after hanging out with friends to let my parents know I was home safe and sound.
In the dream the other night, I was a grown man walking up to the front door of the house I’ve shared with Sandra and the girls for 22 years. When I opened the door, I stepped into the modest living room at 48 Viewmont. The images were vivid. I walked by the linoleum topped counter that separated the kitchen and dining room and peered into the kitchen of my boyhood.
As I entered the narrow hallway that led to three small bedrooms, I popped my head into what we used to call the Girls Room. Laying in one of the twin beds was my grandma who lived with us for her final years when I was about 10 years old. She smiled sweetly and said, “Hi mijo.” I waved and smiled back at her as I turned to the Boys Room. It looked just like I left it some 30 years ago.
While moving about the house, I wasn’t feeling the usual sensations of safety and comfort. My stomach was churning. I felt scared and uncertain. I was emotionally lost in one of the few places on earth that made me feel safe. When I opened my parents bedroom door to let them know I was home, they were peacefully asleep on their double bed.
My mom lifted her head to see who was at the door. Her loving smile quickly faded to a look of concern. “Come in, mijo,” she said. “What’s wrong?” I began sobbing uncontrollably. “I miss you, mom, I miss you so much.” She motioned me over, embraced me tightly, and told me to get back to my family and go back to work.
I went over to my dad’s side of the bed. Before I could say anything, he peeked over his bare shoulder and looked at me with that piercing furrowed brow. In a stern voice, he said. “Your mother’s right, Eddie. Go back to work!” I wanted to hug him before I left, something we rarely did. With his familiar and charming smile, he reached out to me, held me close, and told me that everything was going to be okay.
A warm feeling of gratitude and purpose enveloped me as I slowly walked out of my parent’s bedroom and through the mist that encircled the dream.
I’m back in front of the laptop today. My heart is flowing and my mind is clear. The way to faith is a rocky one for sure. There will be roadblocks and a steady flow of debris along the way. But it’s a road worth traveling. I hope sharing my journey helps find a way to clear the clutter that prevents others from living a life full of faith, hope, and love.
Keep an eye out for my next post…it’s coming really soon! In the meantime, take another look at the set-up post for the final episodes to my story. Here it is once more from May 31, 2019: https://esereport.com/2019/05/31/so-what/
It’s worth reading again before moving on to explore more about how faith has given me the spirit to soldier on.
I studied history at San Jose State University. A professor who had a major influence on me was one Dr. Feliciano Rivera. His expertise was in Mexican and Mexican American history. He literally wrote the book on Chicanos in the United States. The old professor always provided an insightful and entertaining take on historical events and their implications.
He paced the front of the classroom like a caged lion and his voiced boomed as the subject matter captured his passions. Probably in his early 70s at the time, his white hair contrasted sharply with dark weathered skin. He had a black eye-patch over one eye. No one dared to ask how the patch came to be. He was an imposing – almost menacing – figure in class.
I’ll never forget the opening remarks from the first class I took with him. He rattled off a series of dates and names, paused while banging his fist in the air, and said, “so what!” Those were perhaps the two most consequential words in my college studies. The professor’s point was that the study of history wasn’t merely memorizing date and names, rather it was about understanding the meaning of events.
I used the research techniques and writing skills that I learned in college to bring my story to life. I introduced Summer in the Waiting Room on this blog on December 4, 2013. On two occasions, once in 2015 and again in 2017, I announced to readers that I was finished with the story as my health situation had been stable for several years.
By the beginning of 2018, my health took a turn for the worse. The year was dominated by a lengthy and comprehensive heart transplant evaluation. Life threatening open heart surgery to implant a mechanical pump onto my heart closed out the year. There were more stories to tell.
There is still one more step to go in my health journey – a heart transplant. Since that will happen only when God decides that the time is right, now is a natural point to bring the story to a conclusion. After 5 ½ years of sharing countless dates and many names and some 75,000 words later, the two words that defined Professor Rivera’s lectures swirl in my mind. So what!
In the end, my story is a classic cause and effect proposition. Over the span of 9 years, a series of nearly catastrophic health crises and miraculous outcomes caused me to dig deeply into my soul in search of understanding. The effect has been a rich spiritual understanding of the preciousness of life.
I’ve spent an overwhelming majority of my 55 years caught in the vortex of worldly demands – the mortgage, college tuition, career advancement, etc., etc, etc. I didn’t have time to think about the meaning of life, nor was I very interested. Reflections on faith and philosophical questions didn’t fit in my daily calendar of business meetings and family time. Plotting my next career move took precedence over understanding and accepting God’s plan for me.
That’s all changed now. More than once, God brought me to the edge of life in this world. Each time, He decided to keep me around. These miracles have given me the time to think about the questions that could shed light on the beauty of life uncorrupted by real-world burdens. With his thoughts on faith, hope, and love, St. Paul the Apostle has been my spiritual guide for these reflections.
The final leg of my spiritual journey started about a year ago when my cardiologist asked me to share any goals for a receiving a mechanical heart pump and ultimately a transplant. Without hesitation, I answered that my short-term goal was to see our youngest daughter graduate from college, which was one year away. “That’s doable,” the doctor responded.
Last week, we accomplished that goal. Sandra and I traveled to New York to see our daughter Erica walk across the stage at St. John’s University. The added bonus was spending time with Marisa, our oldest daughter who works in NYC. Just 6 months earlier, I was fighting for my life in the ICU.
With the ever-present black LVAD bag holding the equipment that helps keep my heart pumping slung over my shoulder, I waited with Sandra and family members who made the trip with us. About 15,000 others watched with as the graduates marched onto the university’s historic Great Lawn to the SJU marching band’s rendition of “Pomp and Circumstances.”
When Erica’s name was called, I proudly stood up and clapped. All went silent and it seemed as though I was alone while smiling broadly with pride. The whole scene was like a slow-motion video. A split second later, I joined my family by whooping and hollering in celebration of Erica’s milestone. A million thoughts rushed through my mind as I could feel St. Paul hugging me with faith, hope, and love.
I’ve spent much time reading, thinking, and reflecting about the how these three words have given light to the way I now see the world. The words are everywhere on social media and in daily conversations. Usually they appear when people experience pain and crisis or moments of bliss and high spirits, all worldly sensations.
My health crisis and spiritual journey have opened my heart and taught me to appreciate the power of believing in faith, hope, and love all of the time, not just in times of need or during fleeting moments of happiness caused by accomplishment or material gain. I hope you join me for the final three Summer in the Waiting Room blog posts where I’ll explore how my understanding of these powerful concepts changed my life.
I wholeheartedly believe that I’m now on the path to someday experiencing pure spiritual joy and happiness.
I go through the same ritual virtually every day. After a breakfast of oatmeal and fruit, I get ready for a walk through the neighborhood. Due to the brisk winter weather, my uniform includes a pair of jeans, sweatshirt, jacket, and Warriors beanie. Once outside, I flip the hoodie over my head, place the earplugs into my ears and off I go listening to music and letting my mind wander.
Recently, the thoughts meandering though my head have been less than uplifting. For the past month or so, I’ve been on an emotional roller coaster. On one hand, my health is improving on a daily basis. On the other hand, my next door neighbor passed away of a massive heart attack. He was my age. A week later, a dear friend’s son also passed. He was in his 20s, around the same age as my daughters. A few weeks ago, Tía Marta from Sandra’s side of the family breathed her last breath. She treated me as one of her own.
Since my odyssey with heart disease began, I get more reflective when someone passes before I do. I’ve had a heart attack, experienced cardiac arrest, endured a medically induced coma, and struggled again years later in the ICU after open-heart surgery complications. Yet, I’m still here.
No matter that my faith gives me a deep understanding of acceptance, experiencing another person’s death is now prefaced with the same gnawing questions. Why does God choose to take good people too early? Why does He continue to spare me? What have I done that is any more valuable than anyone else? Am I adding value?
That last question is what preoccupies me the most. From a young age, my dad encouraged me and my siblings to get an education. He told us that college was the path to a comfortable life (i.e. more money). Society told me the same thing. A former boss would pop his head into my office every morning and ask, “García, are you adding value today?” It was his daily reminder that my job was to either save or make money for the company.
These life lessons defined my understanding of success, value, and worth. As readers of ESEReport know all too well, God threw a wrench into that notion for me 9 years ago. In an instant, I went from my family’s breadwinner to someone who spends a majority of time and resources on staying healthy and alive.
These thoughts ultimately lead to me questioning my own worth. Despite overcoming the physical challenges of heart disease time and time again, the emotional and psychological recovery continues to tug at my insecurities. Based on society’s perception of a “successful” man and my own learned expectations, I always ask myself, “What value do I add?”
Then, Tía Marta taught me a lesson.
She was born in a small town in Mexico and spent most of her life in a farming community near Fresno where she worked in the packing sheds during the harvest season. Financially, she had little to offer the world. By most definitions of “value” in American society, one could conclude that she didn’t make much of a contribution.
She dedicated her life to loving and taking care of Tío, her children, grandchildren, and great granddaughter. When we visited, she was usually stationed next to the stove making something delicious – and not very healthy, by the way – or standing in the small kitchen with her arms resting on the high back of a dining room chair enjoying the company of her guests.
She listened with a caring ear and uttered few words, usually encouraging comments about faith and hope. It seemed at times that she wasn’t physically present because she listened much more than she spoke. Nonetheless, her unwavering faith in even the most terrible of times filled any room she occupied.
When my family endured that awful summer in the waiting room nearly a decade ago and again last fall, Tío and Tía were among the first to arrive. She would sit next to Sandra offering prayers, encouragement, and hope. Most times, she just sat quietly letting her aura of hope radiate throughout the room.
At her funeral, I learned that I wasn’t the only recipient of her prayers and devout faith. For 40 years, she was part of a small group of women that studied the bible each week at the home of one of the community elders. Tía’s offerings of faith spread well beyond her house and her family. The leader of her prayer group regaled mourners with stories about her spiritual value to the community.
The family bestowed upon me the honor to eulogize Tía on their behalf. I reached out to her children and grandchildren to learn more about the woman they called Mom and Nana. They shared stories about her love for them, her cooking, and her role as the rock of the family. Their anecdotes inspired me to base the eulogy on faith, hope, and love as envisioned by St. Paul the Apostle.
During my preparations, I also wanted to know how many people to expect and who would attend to ensure that the eulogy properly honored her memory. Her son told me that they expected a small gathering, mostly family. Something told me, most likely God, that I should prepare comments for a wider community.
I wanted to say the right thing. I wanted to honor her and her family in a way that she deserved. Upon on arriving at the church, Sandra and I saw a sprinkling of people congregating in the aisle. Once the service started, I sat in the front pew, nervously listening to the pastor and the community elder eulogizing Tía.
When I rose and walked to the podium, I turned to look at the gathering and thanked God for preparing me for a larger vision of who she was. The standing room only assembly of people spilled out to the vestibule and outside the doors in front of the church. It was amazing and exhilarating to see how many lives she touched.
This brings me back to the definition of “value” and my struggle to overcome misplaced musings about my own worth, or lack thereof. In death, Tía Marta’s life reminded me that value shouldn’t be measured by just dollars and cents. She added value every day to her family, her community, and the world without having a large bank account to demonstrate her worth.
My spiritual journey continues. God will keep providing me with guidance and life lessons in a way that only He can. I have to listen to His message and practice what I preach by not placing so much value on society’s expectations of me. I have a long way to go, but I know that I’m moving in the right direction.
Early last Wednesday morning, Sandra sat alone in the lobby of the cardiac procedures unit at Kaiser Santa Clara Medical Center. The bright lights and intensity of the cardiac ICU faded into the background of the joyous Christmas and New Year season. Inside the unit, a surgeon was replacing the implantable cardioverter defibrillator (ICD) that was placed into my chest in 2011.
An ICD is a small device designed to deliver a shock to a heart that goes out of rhythm. A surgeon cuts a 3-inch incision into the upper chest and places the ICD into the tissue. It’s like dropping the device into the breast pocket of a dress shirt. Waiting while a surgeon performs a procedure on her husband is old hat for Sandra. She felt lonely and helpless as usual, but put the outcome in God’s hands as always.
A little more than an hour after she left me in the surgical prep area, the surgeon came out to the lobby to tell Sandra that the procedure went perfectly. Shortly after that, she was in the recovery room laughing at my corny jokes caused by the light anesthesia. On doctor’s orders, I spent the night in the hospital for observation.
Over the past 9 years, Sandra has endured over 120 nights in the hospital to be by my side. This time, I finally persuaded her to go home and sleep in her own bed. The past two and a half months have been especially hard on her. Reluctantly, she agreed to go home. Alone in a dark hospital room, I thought about her and our life together.
To borrow a phrase from today’s young and ambitious women, Sandra is a badass. When we met, I was like a ship floating aimlessly in the vast ocean. I had big dreams and ambition without focus or purpose. As Sandra still says, I’m a dreamer. As our relationship grew, so did the dreams and ambition. When I fell in love with her, my life’s purpose came into focus.
For those who don’t know, let me tell you who Sandra Peralta is. She’s an amazing mother who continues to guide our two adult daughters. She was a star student in grade school, ASB president at her high school, and an award-winning elementary school principal (2013 Silicon Valley Principal of the Year). She’s done it all with the utmost grace, integrity, and compassion.
She would vehemently disagree that being my life partner has been the most challenging part of her life. But, it’s true. While I traveled around the country as a corporate executive, Sandra took on the lion’s share of raising our two wonderful girls. When I knocked on doors campaigning for public office, she walked door-to-door with me. She has been my guardian angel since a heart attack changed all of our lives in 2010.
I’m a driven and independent man. No matter the circumstance – chasing professional success or living with compromised health – my love for Sandra has always led me to support her dreams and daily obligations. But let’s face it, living a full life with a compromising illness can’t be done alone. Even stubbornly independent people like me require substantial support.
Since open heart surgery in November, I’ve been pretty high maintenance. I haven’t been cleared to drive, so Sandra takes me to the many doctor appointments. The dressing for the wound on my chest needs to be changed daily. I have a small opening in my abdomen for the electrical wire that powers the pump connected to my heart. That needs to be dressed every other day.
Sandra changes the dressings every evening despite managing a full work schedule and helping her sisters care for elderly parents. She learned how to dress the wounds from the LVAD team at Kaiser. I want to take over these responsibilities, but she’s not ready to delegate them to me. I could insist to do it myself. However, if I’ve learned anything in our 30-plus years together, insisting isn’t such a smart idea.
We both have heard many stories about how chronic illness breaks up marriages and causes irreparable harm to families. In fact, according to the AARP, “the divorce rate for couples in which one spouse has a serious chronic illness is as high as 75 percent.” This is especially the case in younger couples. I was 46 and Sandra was 43 when disaster struck in 2010.
Financial stress and lifestyle changes that limit activity are major reasons that lead to tense marriages. Our annual income dropped significantly when I could no longer command an executive salary. With a hefty mortgage and two teenage daughters looking ahead to college, our finances were stretched to the limit overnight. Family gatherings, community events, and our social calendar took a backseat to the illness.
Added to those trials, depression and anxiety in a chronically ill partner bring feelings of inadequacy, self-loathing, and shame to an already strained relationship. For caregivers, fatigue, impatience, and resentment seep into their daily lives. Together with financial and lifestyle changes, the mental health of the couple is a train wreck waiting to happen.
Sandra and I have experienced and continue to face all of the tests that confront a couple with a chronically sick partner. In his oft-quoted first letter to the Corinthians, St. Paul the Apostle wrote that love, “always protects, always trusts, always hopes, always perseveres.” Somehow, Sandra, the girls, and I have persevered.
I truly believe that Sandra’s strength is the reason that we’ve weathered so many storms. She has an unshakeable faith in God, an uncompromising will, and a limitless reserve of hope. More important, she truly loves me, Marisa, and Erica. St. Paul also wrote, “And now these three remain: faith, hope, and love. But the greatest of these is love.” That’s Sandra.
I can’t help but wonder at the amazing gifts that God bestowed on her. I’m eternally grateful that He made our life together the primary beneficiary of her talents. She has many titles: Mother, Daughter, Sister, Wife, Comadre, Caregiver, Teacher, Principal, School District Administrator. Yup, she’s a badass!
I was sitting alone on a folding chair in the lobby of an upscale social club. Double doors opened up to a long marble-floored hallway that led to a podium where the club’s director stood managing traffic. On one side of the hallway was a casual bar where cocktail tables dotted the linoleum floor and flat screen TVs lined the walls. Wearing medical scrubs, club members relaxed at the tables sipping drinks after a long shift.
On the other side of the elegant hallway was a stately dining room. Guests sat at round linen-covered dinner tables. The well-dressed club members enjoyed gourmet meals, chatted over drinks, or played cards. The clientele was an eclectic mix of doctors, hospital administrators, business executives, and public officials.
The club director was a tall, dark-haired, and handsome young man in his early 30s. Wearing a navy blue blazer, charcoal trousers, a crisp white shirt, and a royal blue tie, he looked regal standing at the podium. He welcomed club members with a warm grin and a gracious southern drawl. Even though he wore a yellow surgical mask, you could see his eyes smiling above the sterile covering.
The passage above never really happened. Or…maybe it did.
For a few days after the surgeon successfully closed my chest cavity, I remained on Propofol as doctors and nurses watched over me. This drug is a powerful sedative that’s used for major surgery. It gained notoriety almost a decade ago when singer Michael Jackson famously died of an overdose.
When administered correctly by an anesthesiologist, Propofol is invaluable as its properties keep patients asleep during surgery and causes memory loss while sedated. The medication worked like a charm for me. I don’t remember anything about surgery or the days afterward when my chest was wide open.
According to the Journal of Neurosurgical Anesthesiology, hallucinations are common for patients that receive even a modest dose of Propofol. As the sedative wears off, the dreams are referred to as post-operative delirium. Some hallucinations are based on reality. In other words, activity happening around the patient could be translated in the brain in a different way.
The “social club” hallucination is based on real events. I remember so many of these types of dreams from the summer of 2010. Interestingly, this time I subconsciously understood that my experiences weren’t completely true while I was still emerging from the delirium. When Propofol finally washed out of my system, I intuitively knew that something went wrong again.
When I described to Sandra what I knew was a “dream,” she recounted real events in the ICU. The well-dressed club director was actually a nurse who cared for me during the days when I was emerging from the fog. That explains the yellow surgical mask. Sandra said that the nurse stood at the door to my room typing into a laptop that sat on a podium.
In the “dream,” I remember having conversations with doctors, nurses, physician assistants, and the hospital’s managing executive. All these people were members of the social club in the hallucination. One incident I will never forget from the delirious dream was the club’s director cheering me on as he helped me to walk. According to Sandra, all of these events happened while I was in the ICU.
Many characters came in and out of my dreams. I reconnected with old friends and welcomed the faces of family. While all of this was happening in my confused brain, I was semi-conscious and talking to people in the real world. During the first few days of consciousness, I borrowed a phrase (“oh boy!) from my Compa Pancho. He uses “oh boy” when he’s surprised or bothered by something.
I must have sensed that I was in medical trouble. Everyone who visited my room one day remembers that I repeated, Oh, boy!” at least a million times in a hoarse and whispered voice. This brought comedic relief for my family and the ICU team. My daughter Erica described me as my usual goofy self, but “just extra.”
I held court by telling stories that didn’t make sense, many replete with every variation of the F-word like a character from The Sopranos. I invited nurses to join me and Sandra for dinner and a movie. I tried to convince one of the Kaiser speech therapists that we worked at Comcast together. Although she had the same name as a former colleague, she never worked there.
The patience and professionalism of the cardiovascular ICU team was astonishing. The team cared for me with warm smiles and supportive words throughout my state of silliness. Going through this experience for the second time was frustrating and a little scary. It also gave me hope. It meant that I was alive and in the beginning stages of recovery.
President Trump stood next to a conference table at one of his resorts. As the president walked toward his office, he looked tired and aggravated. He wore an ill-fitting business suit and his infamous hair was messy. Sandra greeted Trump in the hallway with a hug telling him that she was honored to meet him. Watching from a hospital bed in another room, I was disappointed with Sandra.
How Sandra and I ended up at a Trump resort during my delirium is a story in itself. Friends and family who visited the ICU told me how I recounted the story of Sandra hugging and complimenting the president. In a raspy voice, caused by the breathing tube that was in my throat for almost a week, I summoned visitors closer to me so I could describe the scene.
Left Ventricular Assist Device (LVAD) – “The left ventricle is the large, muscular chamber of the heart that pumps blood out to the body. A left ventricular assist device (LVAD) is a battery-operated, mechanical pump-like device that’s surgically implanted.” -American Heart Association, 2018
On March 31, 2018, Sandra and I anxiously sat at a circular table in a small office at Kaiser Santa Clara Medical Center’s Heart Transplant Clinic. We listened intently as the department’s social worker explained to us various options available to address my worsening heart failure. It was the first of several orientation meetings we had scheduled that day.
The transplant portion of her presentation was encouraging and exciting. When she described the LVAD – the controller, the batteries, the electrical wire sticking out of the abdomen – a few things crossed my mind: Nope, Nah, Not Me, Ain’t Gonna Happen! Needless to say, I wasn’t too excited about the proposition of implanting an artificial anything into my body.
When the social worker asked if I had any questions, my response was simple and straightforward. I’m all in on the transplant. Let’s just put the LVAD on the backburner. After being connected to a multitude of life-support machines in the ICU throughout the summer of 2010, I resolved to never put my family through that kind of emotional horror again.
Last Friday, I got a call from my cardiologist with great news. After a 7-month long rigorous evaluation, the Stanford Hospital transplant committee accepted my case and placed me on the list, effective immediately. According to the United Network for Organ Sharing, a non-profit that manages the national organ transplant system, I’m one of 3,900 people currently on the list. Because there are only about 2,000 donor hearts available each year, it can take up to 2 years to make it to the top of the list.
The problem is that my heart is so sick that surviving the next couple of years could be challenging. The United Network for Organ Sharing estimates that 20 people die every day in the United States waiting for an organ transplant. With that in mind, the heart transplant team has been pointing me toward implanting a LVAD sooner than later to ensure my other organs stay healthy while I’m waiting for a new heart.
That brings us to the beginning of this process in the social worker’s office. At that time, I didn’t even want to consider the LVAD. When Sandra and I first presented this interim step to the girls, they agreed that I should take the LVAD option. The barriers to my deliberations included the memories of 2010 and my philosophical belief to not accept life-saving contraptions for no other sake that staying alive.
As I was deliberating this question, I again found myself sitting next to a round table in a small office. This time, I was visiting with Monsignor Francisco Rios, a longtime friend and spiritual advisor. He correctly analyzed that the LVAD isn’t merely a life-support system. It’s a bridge to my ultimate goal of a transplant. In that spirit, he thoughtfully provided me with a meaningful path of reflection.
From there, I went out and picked the brains of family and friends. I did research and read the latest literature about the technology. Sandra and I participated in a support group with LVAD and transplant recipients. We kept the girls updated about everything we learned. As I continued through the evaluation process, it became clear that the LVAD was the smart option to stay healthy while waiting for a heart.
At the conclusion of the evaluation, the doctors’ recommended implanting a LVAD. That’s the surest and most effective way to prepare for a successful transplant. As I write this blog post, LVAD surgery is just a few days away. An amazing team of doctors, nurses, and health professionals are meticulously getting ready to perform what seems like a miraculous procedure.
The LVAD is high-tech device made up of four components (1) mechanical pump, (2) controller, (3) driveline cable, and (4) batteries. The pump, made of titanium alloy, has a base 2 inches in diameter with a stem an inch tall. Oxygen travels through the bloodstream from the lungs into the pump. The pump then delivers blood into the body.
The controller is a computerized box-like device about 4 inches wide, 6 inches long, and an inch thick. It’s the nerve center that operates the pump. Connecting the pump and the controller is a driveline cable. A regular electrical outlet and specialized batteries to allow mobility power the whole operation. LVAD patients carry the components in a shoulder bag or fanny-pack style belt when moving about.
The operation to implant the LVAD pump and the driveline is major open-heart surgery. The surgeon will make an incision in the chest and cut through the chest bone to gain access to the heart. He will slice into the muscle to provide a tunnel into the left ventricle (lower heart chamber) and sew a titanium ring onto the muscle to keep the hole open. The stem of the pump is inserted into the ring until it clicks into place. The operation takes from 4 to 6 hours.
During the last week or so, I’ve met with the healthcare providers who will be on hand for the surgery. They are an awesome group of professionals that has vast experience in this emerging cutting-edge technology. The surgeon was part of the LVAD design team at Stanford Hospital before being wooed by Kaiser Santa Clara Medical Center to create the program there.
As I prepare for LVAD surgery and the next phase of my life, I’m ready in heart, mind, and soul. I’ve developed good relationships with my healthcare givers. I believe that they’re rooting for me as much as they are performing their professional duties. Sandra, the girls, and I have a faithful support system that has been without equal. God is guiding me every step of the way.
If you ever find yourself in a seemingly hopeless predicament, be it medical or otherwise, I hope my story encourages you to follow a similar path. A strong trust in God, loving family, and supportive friends will carry the day. You just need to take it on with hope, faith, and love.
I admire the work former 49er quarterback Colin Kapernick has done on civil rights and I loved the work that he did between the 20-yard lines. The problem was that he couldn’t get the job done when it counted. He got into the redzone in spectacular fashion, but failed to get into the endzone when championships were on the line. Niners fans still feel the “oh so close” pain of 2011-2013.
For non-football fans, Let me explain. The goal of the game is to score points by getting into the end zone. The 20 yards that separate the team from the goal line is called the red zone. That’s where things get tough. The opposing players create all kinds of barriers. The final 20 yards is a lonely proposition for the team leader, especially if the team doesn’t cross into the end zone. Just ask Colin Kapernick.
Seven months ago, I started an evaluation process to determine my eligibility for a heart transplant. The first 6 ½ months were fast-paced and hectic. I took countless tests and completed several procedures. While it hasn’t been completely without hiccups, the process moved along with speed and efficiency. God willing, I will soon be on the schedule for surgery to insert a mechanical pump into my heart.
I’m now in the red zone of the first part of this process. The march to the red zone was filled with excitement and optimism. CT scans, heart catheterizations, lung capacity tests, and psychological evaluations filled my days.
In just a few weeks, the surgeon will confirm the date when he’ll perform major open heart surgery and place a machine into my heart. It’s a lot to take in. I’m still trying to wrap my mind around that. There are also many other things going through my mind. I think about Sandra and the girls. I think about how our lives have changed and will change once more. I think about the long road ahead.
Like the quarterback calling plays in the red zone, I feel like I’m in a lonely place. The Kaiser lineup of professionals is world-class when it comes to know-how, talent, and bedside manner. Sandra has been amazing. Working as a team, we collaborate with the health specialists and ask lots of questions until we fully understand the options in front of us. Nevertheless, the consequences of my decisions are mine and mine alone.
Every step the team takes toward the end zone is thoughtful and deliberate. They’re finalizing the details to prepare for surgery: more blood tests, more doctors’ appointments, more orientations. The doctors, nurses, coordinators, and support professionals are clearing the path of any health or medical barrier that could keep me from the objective.
But, I still have 20 yards to go. I’m within striking distance of the first goal and progress feels like it’s happening in slow motion. The biggest obstacle to reaching the goal line is the same stumbling block that led to my obsessive quest for “success” before the heart attack changed everything. My mind wants to jump ahead to the next phase of my journey instead of taking it one day at a time. The failure demons and fear of the unknown are trying to creep their way back into my consciousness.
That’s my nature. That’s the trait that led me to success and ultimately ended with my health catastrophe. The need to control circumstances has always been my way of getting what I want. Every step of the way, I used this strategy to steer my career and public life in the direction I desired. With the end zone in sight, those same forces are tugging at me again and raising concerns about the unknown.
I’m in a pitched battle to focus on the here and now so I can push away thoughts about what might be. The good news is that I have more and better tools at my disposal. The spiritual awakening that has blessed me within the past few years is ready to take the field in my fight for the last 20 yards. Rather than speculate on circumstances that haven’t even happened yet, I plan to surrender to faith, hope and love.
During the 1980s with the 49ers, pro football Hall-of-Fame quarterback Joe Montana always went to the late great Dwight Clark when the team was in a pinch. Although the red zone can be a lonely place, I also have a go to guy. In his letter to the Esphesians, St. Paul the Apostle wrote, “For by grace of God you have been saved by faith. And it is not your doing; it is the gift of God.”
Faith is going to carry me to and through the end zone. There will be additional doctor consultations, blood work, and other details to complete in the weeks to come. I’ll make sure to stay on top of everything and control my commitment to meet each demand and request. I won’t be troubled about what the results of those interactions could be. I’ll leave that to God. It’s His call anyway.
I’ll continue to focus on every minute, of every hour, of every day. I’ll laugh and yell at the TV when the president and his marauding band of court jesters do another stupid thing. I’ll read about my friend Alexander Hamilton. I’ll enjoy dinner and an occasional movie with Sandra. I’ll look forward to Facetime and texts with Marisa and Erica. I’ll hang out with my extended family and friends.
I’ll live each day as if it was my last, not because it could be, but because that’s the right thing to do. That’s all God wants us to do. The inability to get a team into the end zone has ended the careers of many quarterbacks. I feel good about my chances. I have God on my team.
The other day I sat in front of the neighborhood Starbucks reading The Atlantic magazine and listening to jazz legend John Coltrane through my ear plugs. I could hear my high school buddies saying, “ohhhkay…look at the school boy” in a gently teasing way. While I’m not any smarter than the next guy, I do have a love of learning new things, a trait that I got from my parents.
This enthusiasm for reading is a double-edged sword. On the downside, my passion for American history and politics has me wringing my hands about the uncertain future that confronts our nation during this turbulent time. The upside is that a nearly insatiable quest for knowledge and understanding gives me hope for a health crisis that has dominated my life.
I’ve written much about the roles that faith, family, and friends have played in the 8 ½ year-long saga of heart failure and associated complications. I haven’t spent so much time on the medical team that’s been a Godsend to me and my family. From a faith viewpoint, I truly believe that God assigned this group of people to guide me through a complex medical journey.
The team at Kaiser Santa Clara Medical Center is an outstanding collection of talented professionals working with high-tech tools in a state-of-the art facility. I can’t imagine a more impressive lineup of individuals working together to serve the health needs of their patients. Every step of the way, Sandra and I have been an integral part of the team.
With everything I’ve learned from this experience, I strenuously offer to friends, family, and all readers unsolicited advice: Work in collaboration with your doctors and healthcare providers, and ask lots of questions.
I would be in better health today if I followed this advice. Like most men (yes, I’m taking a shot at my gender), I thought I was invincible. I was well aware of my family’s history with heart disease, as was my doctor. At annual physicals, he advised exercise and a healthy lifestyle. But, I ate unhealthy food, drank too much on weekends, and worked like there was no tomorrow.
Despite promises to the doctor, my commitments to lifestyle changes never materialized. The trifecta of unwise behavior was too much to overcome my regular exercise regimen. According to the American Heart Association, a healthy way of life can reduce heart failure by 50% for those of us with a genetic disposition to cardiovascular disease. I just didn’t listen to my doctor.
When I survived a heart attack and Acute Respiratory Distress Syndrome, I promised myself and my family that I would do whatever it takes to live as long as God allowed. With a commitment to do my part and leave the rest to faith, my determination to follow doctor’s orders and learn as much as possible about the disease became priorities for me.
In the aftermath of the heart attack that started this life-changing journey, I couldn’t wait to go home after first going into the hospital. I came home, returned to the hospital, came home again, and returned to the hospital a third time over the following few days. The last stay turned into a 100-day nightmare. After that harrowing experience, I decided to trust the professionals.
For some reason, most of us don’t do that. How many times have you heard someone say, “The doctor doesn’t know what he’s doing”? There are others who might say, “She isn’t a good doctor.” Or the common refrain, “I don’t like taking medicine, it doesn’t work anyway.”
I’ve learned that the practice of medicine isn’t just a science. It’s also an art. Doctors aren’t miracle makers and drugs aren’t magic cures. It’s critical to develop trusting relationships with healthcare providers. That means being honest about how you feel. Maybe it makes you feel like a strong person to tell doctors that you feel fine. Being tough won’t keep you from ending up in the ICU because you weren’t straightforward with your doctor.
Most of us don’t like to hear bad news. That might be why we avoid going to the doctor on a regular basis. But, at some point, you have to accept what is and work to resolve what’s ailing you. Doctors, nurses, and other medical professionals are more knowledgeable than we are when it comes to the science of medicine. We know how we feel. That’s how collaboration guides them to do what’s best for you.
One of the biggest lessons Sandra and I learned was asking questions every time a doctor said something we didn’t understand. For example, we didn’t know the difference between myocardial infarction and cardiac arrest. Rather than just listening, we interrupted and asked for clarification. You can resolve misunderstandings by simply asking, “What does that mean?”
My cardiologist’s guidance and advice has kept me alive and kicking for over 8 years. After clarifying our discussions during appointments or by e-mail, we agree on a plan of action. It’s been a team effort. I now work with a talented heart transplant team that has been patient with our multitude of questions. By now, Sandra and I are probably pros at this.
How can you tell if a doctor is good? With a 100-plus days in the hospital, including 5 weeks in the ICU and 3 weeks in physical rehab, I’ve seen many doctors, nurses, and support staff. It’s impossible to judge a doctor on how much he or she knows about medicine. Remember that they know more about that stuff than we do. For me, the answer is simple. The good ones listen as much as they talk. They’re patient with questions and treat you like an equal partner.
I’ve been blessed to work with so many outstanding health professionals. Not only do I cherish the relationships we’ve have built together, the partnerships have given me a wonderful quality of life. They trust me and I trust them to tell it like it is. As an information hog, more information is better than less. They’re happy to oblige. It helps me understand and helps them care for me. I have a sincere affection for all of them.
Good healthcare is a team effort. The decision to be a team player when it comes to my health is one of the best choices I’ve ever made. For almost 9 years, I’ve lived a full life to the credit of faith, family, friends, and a strong medical team. I hope there are more fulfilling years to come. I urge you to make the same choice about your healthcare. Learn to trust your team. It could save your life.
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
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
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.
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.