God’s Grace is Sufficient (Part 2)

IMG_3139
“A revitalizing breeze swept through me and the bright sun covered my back like a warm blanket. At that moment, I felt the presence of God.”

Click here for God’s Grace is Sufficient (Part 1)

https://esereport.com/2019/07/29/gods-grace-is-sufficient-part-1/

***

I put on a black t-shirt, khaki cargo shorts, and black Nike quarter socks. I transferred the LVAD equipment from the satchel to a backpack especially made to carry the VAD’s controller and batteries. With the backpack in place, I laced up a pair of black Nike cross-training shoes, grabbed my sunglasses, smart phone, earplugs, a baseball cap, and water bottle.

I set the hat on my head, situated my shades, and opened the front door. I love listening to music when walking, so I connected to the Spotify app on my cell. On the heels of the good news from my cardiologist, I was upbeat and in the mood for James Brown. The earplugs were in place and JB’s funky classic “Get on the Good Foot” blasted in my ears as I briskly strolled down the driveway ( https://www.youtube.com/watch?v=VgGwI12zMJg).

I followed my usual route to Evergreen Park, a little more than 2 miles away. From the house, I went to the end of my neighborhood, crossed a small bridge, hiked on the Montgomery Hill trail through Evergreen Valley College, and navigated a busy intersection before getting to the park. Along the way, my midsection began to tense up a little. James Brown’s iconic screams were fading in my ears as my gait slowed.

I tried to figure out why I was feeling that way. My mind had been in turmoil for some time until the phone call from the heart clinic. Impulsively, it was on a high because the news was good. Faith isn’t supposed work that way. True faith is about standing strong while in the farthest corners of uncertainty. Yet here I was, celebrating a desired result shortly after weeks of doubt. Maybe I hadn’t learned anything about faith at all.

When I arrived at the park, I found a concrete table and bench shaded by a small grove of trees. I sat down to gather my thoughts and reflected on the story about how St. Paul the Apostle prayed three times pleading with God to take out a thorn stuck in his body. After the third request, God responded by saying, “My grace is sufficient, my power is made perfect in weakness.” This profound sentence has been the foundation of my spiritual education.

Here’s the thing about faith. It’s not a singular encounter or destination. It’s a long and winding road littered with debris like chronic disease, failed love affairs, job loss, a sick child, or death. The list is endless. Every time we think we’ve discovered the mystery of faith, the world throws something in our paths and we’re back in the spin cycle of worry and fear.

Catholic teaching has been part of my life since childhood. With that said, my journey has taught me that faith isn’t just a religious experience. Religion needs faith more than faith needs religion. People with different worldviews might not believe in God in the religious sense. But, there are things we just can’t comprehend or control. Faith provides answers to these unanswerable questions. Call it what you want – fate, the universe, the Creator. I call this mysterious force God.

Sitting on the concrete table with my feet on the park bench, memories of my darkest moments came to mind. Nine years ago doctors told me that I was having a heart attack in the emergency room. A week later, my heart suddenly stopped beating. Shortly thereafter, I felt a breathing tube snake down my throat before going into an induced coma. During each of those events, I was physically weak and in control of nothing.

Faith hadn’t even entered my vocabulary at that time. There had been no spiritual journey yet. I had no say in the situation. God promised St. Paul that “my power is made perfect in weakness.” In the absolute weakest and most hopeless days and nights of my life, the forces of faith washed over me. Without my participation, God handed over control to healthcare providers so they could collaborate with Him to save my life.

As these flashbacks ran through my mind, a revitalizing breeze swept through me and the bright sun covered my back like a warm blanket. At that moment, I felt the presence of God and reflected on what He has taught me about following the trail of faith. One thing is for sure. Nothing is permanent. Unexpected obstacles come and go and instances of triumph are only temporary. We need faith always.

Unfortunately, most of us practice situational faith. When in dire straits, we call on God for intervention and proclaim our faith. When success and accomplishment win the day, we thank God and proclaim our faith. That’s what happened to me after hearing good news about the transplant. For nearly a month and a half as I anxiously completed test after test and awaited the results, my faith was in short supply .

Minutes before I stopped to sit on the concrete table in Evergreen Park, my stomach churned and my mind wandered. With the sun’s warming rays showering over me and a light wind brushing my face, God reminded me what faith is all about. There are things that we just can’t control. We have the power to do the best we can with the tools God gave us to handle in any situation. We have to surrender the rest to God, fate, the cosmos, the Creator – whatever we want to call it – and accept the results.

I did everything in my control to give myself a chance to enhance the probability of getting reactivated on the transplant list. The doctors did too. Instead of leaving the rest to God, I spent days and weeks worrying about what might be. I allowed the forces of doubt, anxiety, worry, and fear to hijack my psyche. Despite my amazing journey, I reverted to worldly instincts and didn’t allow faith to combat those forces.

When my cardiologist called with good news, I immediately thanked God. But, my gratitude was for the wrong reason. I thanked Him for the results I wanted. I had forgotten that surrendering to Him and accepting the results is the true meaning of faith. My uneasiness during the walk reminded me of that. I got caught up into the vortex of desire – I want – instead of trusting what is.

We all succumb to the ways of the world. When good things happen we’re happy. Other days are awful and we become sad or angry. We look for many ways to turn bad days into good days. We have parties. We buy that dream something or other. We get a new hair style. We thank God for getting what we want. The list goes on and on and on. We feel better until the cycle starts again.

Having faith means getting off of that merry-go-round. Having faith is hard work, though. We have to practice it every day. I learned another big lesson sitting in the park. The phrase, “it is what it is’” isn’t just something we say when throwing up our hands in defeat. It should be used when we leave our destiny in God’s hands once we’ve done everything in our command.

Before I stood up to continue my walk, I again made the sign of the cross and thanked God. This time, I expressed my appreciation for reminding me to trust and accept His will. I thanked Him for giving me another moment of life and giving me the strength to face any new challenge He puts in my path.

In terms of my health, I still have a long way to go. I’ll keep doing all I can to help doctors guide me on the right track for a successful transplant. The rest I’ll leave to God. With faith on my side, I can fight the doubt and worry demons and keep them from getting in the way of basking in the glory of love, family, and friendship. It won’t be easy. That I know.

I started back across the park, through the busy intersection, and onto the trail through the college campus. Changing the music from the Godfather of Soul to the Great Bear of Baroque, George Frideric Handel, I approached the bridge that leads back into my neighborhood. I had a little skip in my as step I marched triumphantly over the creek with Handel’s “Messiah” blaring in my ears (https://www.youtube.com/watch?v=usfiAsWR4qU) .

My exhilaration wasn’t due to the cardiologist’s good news. I celebrated because God reminded me of the most important lesson learned on my road to spiritual discovery. His grace is sufficient. It doesn’t matter what the future holds for me. The final outcome isn’t in my hands anyway. I just need to go with it and fully appreciate and enjoy the life He has given.

Advertisements

God’s Grace is Sufficient (Part 1)

IMG_3212
Looking out to my backyard on a beautiful summer day

A couple of weeks ago, I was sitting alone at the kitchen counter hunched over a bowl of oatmeal, bananas, blueberries, and walnuts. I stared out through the kitchen bay window at the backyard garden above the retaining wall. A hummingbird was hovering over the yellow hibiscus flowers and miniature red roses that were in full bloom. As I dipped the spoon into the hot cereal, I was lost in thought.

I was thinking of the 4th of July week. Erica has been home plotting her next move after graduating from college. Marisa flew in from New York to spend time with us and Sandra took the week off. Movies, dinners, binge-watching Netflix, and an annual Independence Day campout with family and friends filled our days and nights. We shared many laughs, recounted old stories, and created new ones.

People always say that having a great time surrounded by family and friends is supposed to be the very essence of what defines happiness. Social media posts abound confirming that belief. Yet, throughout that week and the next, a faint gnawing churned in my stomach. The good times and the wonderful company merely masked what was going on in my mind.

While sipping water with my breakfast, my attention turned to why I wasn’t overwhelmed with cheer. The past 9 years have been a bumpy ride. There was the horrifying summer of 2010 followed by 8 years of managing heart failure. Dealing with medication, exercise, and diet filled my daily to-do list. Maintaining a disciplined routine worked until my heart started showing signs of severe wear and tear.

An expectation of better days ahead came last fall when I qualified to be placed on a heart transplant list. In the meantime, a surgically implanted LVAD mechanical heart pump would keep me stable until a donor heart became available. My heart and lungs decided not to cooperate with the surgery, so the ride got bumpy again. Five days of uncertainty evaporated the hope of a smooth transition.

The road back from the complicated surgery in November has been steady. I feel better than I have in years. Getting reactivated on the transplant list is the next step for me. But first, doctors wanted to make sure that my lungs could get through another major open-heart operation. That meant another round of tests and more evaluation.

The anticipation of getting back on the list had been weighing on me for the better part of a month. The festive week with the girls being home and the family campout provided some relief. But, the fact is that I’m sick, very sick. Reality is always there slung over my shoulder in a black satchel that carries the equipment connected to the LVAD attached to my heart.

There are no days off living with advanced heart failure. Taking a “cheat day” from my strict diet isn’t an option. It’s low-salt, low fat for every meal every day. Relaxing and unwinding over a couple of cocktails after a long day is out of the question. Forget hot dogs and beer on the 4th of July. While coping with the physical challenges of the illness is extremely difficult, the psychological and emotional impact can be paralyzing.

The American Heart Association estimates that nearly 40% of patients with chronic heart disease suffer from depression. Anxiety and other psychological maladies make that number even bigger. Throughout my illness, I’ve waged a brutal battle with depression and anxiety. For years, I struggled to comprehend why this all happened to me. I resented being “cut off” at the prime of my life. These kinds of thoughts are common for someone with a chronic illness.

After finishing the oatmeal, I stood at the sink washing the bowl, spoon, and water glass. I reminded myself that I’ve been on a 9-year journey to learn how faith can help conquer those destructive thoughts. Throughout my trek through spiritual self-discovery, faith has helped me rise above the negative spirits that occupy my soul.

Nevertheless, while staring out the window again, the demons danced around my head. What if the tests showed that my lungs couldn’t handle another major surgery? What if the CT Scan of my chest revealed scarring from nearly a decade of the heart and lungs struggling to keep me alive? What if I have to be on the LVAD for the rest of what’s sure to be a short life?

I focused on taking steady breaths as I wiped the dishes with a dry towel. I’d been in this place of doubt plenty of times. The evil spirits in my mind were trying to pull me in a downward spiral. I was pulling in the other direction to lift myself up to a place of calm and trust. Since I embarked on this journey, faith always swept in to save the moment. This time, faith came through again.

Feeling less anxious, I sat on the family room sofa and turned on the morning news. I always do this before going on my daily walk to check in to see what kind of mess Donald Trump has caused. Suddenly, my cell skipped on the coffee table as the vibration mode indicated that a call was coming in. The number on the caller ID was all too familiar: +1 (408) 851-1000, Kaiser Santa Clara Medical Center.

The digits on the caller ID displayed the medical center’s general number. The person on the other end could be any one of the people on the amazing team of professionals managing my healthcare. I get regular calls from the team. Scheduling appointments, sharing lab results, or giving instructions for the next exam are typical topics during the calls.

Earlier that morning, my cardiologist was scheduled to present my reactivation case to Stanford, the location of the transplant surgery. I expected him to call, but not until later in the day. As I reached for the smart phone, the demons began their dance again. Is it the cardiologist? Does he have good news? Does he have bad news? Was the meeting cancelled?

When I answered, it was the doctor’s soothing voice that greeted me. It was good news. The laboratory results were positive. The lungs were stable. Everything looked good. And, oh yeah, my name was reactivated on the heart transplant list effective immediately. I expressed my deepest gratitude to him and his team for caring for me with such commitment and professionalism.

I sat back on the comfy couch, closed my eyes and took a deep breath. I thanked God, made the sign of the cross, and took another deep breath. When I emerged from that serene moment, I called Sandra to share the doctor’s update. I don’t exactly remember her response, but I could feel her warm hugs through the smart phone. I sent texts to the girls next. After exchanging celebratory messages with them, I went to the bedroom to get ready for my walk.

To be continued…

It’s Time to Move On

IMG_3158
With my mom and dad ca. 1966 (part of a family photo).

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.

So What!

60446323_10215087963978540_1199832662127149056_n
Together on the historic Great Lawn at St. John’s University – Queens New York – May 19, 2019

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.

So what?

I wholeheartedly believe that I’m now on the path to someday experiencing pure spiritual joy and happiness.

That’s what!

 

 

 

 

 

 

Am I Adding Value?

57074598061__78F9A593-1A33-4C23-BDB1-B94D6074DDB0
I’m ready to walk!

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.

Thank you, God.

Sandra Peralta, Badass

49385113_10214144453111358_4365998680616992768_n
Christmas 2018

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!

 

Oh Boy!

 

47028494_10213967206040292_6850129213966516224_n
On November 29th, I visited with the cardiovascular ICU team a day before going home.

Oh boy…

***

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.

I’m pretty sure that post-operative delirium danced around in my mind as the Propofol slowly left my system. The passage above is in italics because it was part of the hallucinations. I experienced this phenomenon in 2010 when I spent the summer in the ICU. I wrote about this in an earlier post (Check out my blog post from June 22, 2016: https://esereport.com/2016/06/22/summer-in-the-waiting-room-how-faith-family-and-friends-saved-my-life-excerpt-52-new-excerpt/).

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.

Oh boy!

**********

Next Time: Beginning the long road to recovery

 

 

 

 

 

 

 

 

 

 

 

 

Heart Evaluation is Done…It’s Showtime!

44178281_10215134625732065_2509243327388319744_n
With Sandra and Fr. Francisco

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.

IMG_1589
HeartWare Ventricular Assist Device

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.

IMG_1587
Illustration of implanted device

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.

lvad6
Image by clarionledger.com

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.

 

 

Getting to the Goal with Faith

IMG_1530
With Sandra spending another the night in the hospital for tests – 10/9/18

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 red zone in spectacular fashion, but failed to get into the end zone 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.

 

 

 

 

 

 

Trust Your Healthcare Team – It Could Save Your Life

56013159090__86C5B412-AEB1-448E-BAC1-630982E617B7

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.