Life with Attachments
Yes. I am a Bionic Heart Patient.
by Allen W. Snider
Introduction to this work
I have a left ventricular assist device (LVAD), that requires me to be connected to electrical power because it does the work of the left side of my heart. Now I come with “attachments” and accessories. I am quite literally “bionic.” While sounding mysterious and amusing, my journey to this place in my life has been much more complex than either of those words can express.
You are invited to read here what is beneficial, instructive, informative, entertaining, and inspiring to you. You may find some of it redundant, repetitive, and besides that, I often say the same thing again that you may already have heard or read. I apologize in advance. You may find some of this boring, shallow, deep, useful, or even, something else that neither of us foresaw. You are not expected to agree with me, but I would be honored if you consider the things I have written. You might find some truth here. I do some pontificating here. I learned that word a few years ago and must confess to the temptation to instruct others on what they might want to consider sometimes. I am in reality just an educated town and country boy who is still trying to figure out what to be when he grows up. And in the meanwhile I hope to encourage others to seek a reflective way of living that inspires us all to greater life. I beg your indulgence, your patience, and your candor. I believe in both higher ideals and a higher, rational presence, but a belief in God is not required to find this writing useful and informative.
As of July 2019 this writing has several features, including a brief family medical history leading up to my becoming bionic. Because I am a retired technician-builder-craftsman-pastor-philosopher-student-teacher and more, I include some philosophy and some theology while not trying to overwhelm the reader with church doctrine or religiosity. I include some observations about human personality and attitudes, about human existence and behavior.
Mary Shelley’s Frankenstein reminds us of the moral responsibility we have with science and technology. The ability to do something that gives or prolongs life does not always mean doing so is morally appropriate. And yet, there is a certain novelty to it all that testifies to the wonder and marvels of medical science and technology. More than that, it testifies to our human desire to triumph over the limits of our lives, while reluctantly accepting that our mortality is also part of what it means to be human. Philosophers and theologians will wrestle with the morality, the rightness and wrongness of our science and technology. Legislators and agencies will struggle with how to regulate such things. In the meanwhile we move and act as our knowledge often outpaces our moral reflection and most often, we choose life over impending death. In my experience most of us tend to agree with Dylan Thomas as we will certainly “rage against the dying of the night.” In spite of bold words of faith and an afterlife, most of us cling to life rather than too quickly seek the wondrous mystery or the empty void that lies beyond, and so, I live, now with attachments, accessories, new routines, new experiences, and new hopes. May God, my family, my friends, and others find me faithful. I confess to being obstinate at times. I confess to being ornery at times. I confess to being hard to tolerate at times. I confess to hoping I will do and be better, but not working hard enough at making it happen. If you are a person of prayer, please pray for my wife, Judy. She has tolerated and graced me with her devotion for over 40 years now. She has, quite literally, been a gift from God.
Introduction to myself
At the writing of this work I am sixty-six years old and have been a heart patient since 2003. I grew up in eastern Arkansas, the son of an industrial mechanic and a nurse. My father grew up on a cotton farm, my mother in small towns where her father was a manager of railroad cotton-shipping operations. My father’s family were mostly farmers, not very educated. My mother’s family included morticians, a biochemist, and a professional musician.
In 1973 I moved to Sherman, Texas to work in electronics at Texas Instruments after two years of technical education at United Electronics and working as a sheet metal technician at Independent Air Conditioning in Little Rock, Arkansas. I married my teenage sweetheart in November that year, became a divorcee in January 1978, and in April 1979 married Judy, my soul partner. After some time I adopted Judy’s two daughters, Lisa and Tomi, and we had a son, Eric. We purchased a few acres, started building a cabin, and eventually moved to the country, adding on to the cabin we had built. We built fences and barns, planted gardens, and raised tomatoes, squash, cucumbers, peppers, onions, strawberries, pecans, calves, goats, sheep, rabbits, chickens, donkeys, ducks, and dogs.
In 1985 I became a Lay Speaker in the United Methodist Church. I started preaching and leading worship in small churches. In February 1986 Pat Crookham and I visited with Bill Bristow and John Casper and, with other volunteers, started a ministry with troubled teens at the Tri-county Juvenile Detention Center in Grayson County. As of 2019 that ministry continues and has grown to include a Boot Camp, teaching self discipline, self-purpose, and hope in faith. In 1989 I left electronics to pursue what I strongly felt was a calling to ordained ministry. I earned college degrees and a university degree, working as a youth director and then as a pastor.
As an ordained minister in the United Methodist Church, I am a member of the North Texas Conference. I have served on various boards and committees, worked at church camps and retreats with children, youth, and special needs adults. In the communities where I served, I participated in Lions Clubs, Chambers of Commerce, Ministerial Alliances, local charities, and volunteer work in those communities. In one community I was a volunteer fireman and in another, a member and chair of the park board. I participated and helped organize fund raisers for charities including St Jude Children’s Research Hospital, Grace Children’s Hospital in Haiti, Key Care Mission (food and aide in Grayson County, Texas), Wesley Village (retirement home), Texas Ramp Project, and SEEK Camp (church camp for special needs children, youth, and adults regardless of faith affiliation). For years I used money paid to me for funeral honorariums to fund a Pastor’s Benevolence Fund to help people in emergency need. I worked with Scouts, 4H, Campfire, and other community groups that trained youth and children for service and leadership. I spent time doing work in East Texas as a local hospital chaplain. I helped start and direct Great Days of Service in two of the communities where I served. More than that, I was honored to “speak for God,” to officiate at funerals and baptisms, to help equip people as they prepared to get married, and then to perform the service. I was blessed to work with families, youth and children, and the elderly, sharing serious moments, laughter, and tears. More often than not, I was blessed to learn from those faithful Christians around me who simply served with the gifts and resources they had to give often making sacrifices so that life for someone else could be a blessing of grace.
My younger brother died in 2003 of aortic dissection, the same malady that shortened the lives of several family members, including my father in 1976. After my brother’s death, I was advised to have my heart health tested and after weeks of testing, Dr. Robert J. Wilcott performed bypass graft surgery on me in November 2003 at Texoma Medical Center just two days after cardiologist Dr. Mukesh Sheth discovered serious blockages to my heart. After that surgery I did quite well in spite of an ejection fraction of around thirty percent and evidence of at least one heart attack. In the fifteen years following my heart surgery, I bicycled over 27,000 miles, participating in various rallies and fund raisers for charities. When my wife and I took time to build a house that would eventually become our retirement home, my cycling took backstage. We were under a financial deadline because, even though we cashed in our IRAs, we had a construction loan from the bank.
As I wrote at the beginning, I am now the recipient of an LVAD, which has involved some serious life changes, but the key word here is “life.” In college and seminary, instructors and professors encouraged me to write, indicating I might have some important things to write about and a talent for writing. I include a lot more than what you might want to read here and some of it is quite personal. I believe that my personal reflections may help the reader to consider their own life journey as something worth reflection and sharing.
Appreciations and Credits
I am grateful to those Health and Care Providers who have taken me from the place where I thought I would not live to the place where I am now, looking forward to living and serving, and helping others again.
Thanks to the doctors, Dr. Timothy George (LVAD surgeon), Dr. David Rawitscher (cardiologist), Dr. David Rosenstein (hospitalist), Dr. Ryan Mandel, Dr. Adam Shapira, Dr. David Schwartz, Dr. Jessie George, Dr. Howard Kussman, Dr. Scott Biedermann, Dr. Marguerite Broyles, Dr. Anupam Verma, the many other doctors who monitored and tested, the nurses, and other hospital staff who have given their best, and especially to those who made me feel appreciated and worthy of their care. Dr. Mukesh Sheth had been my cardiologist for over fifteen years and his associate, Aravind Gangasani, had cared for my well-being at times. Some of those who gave their best were at Texoma Medical Center in Denison, Texas. The two EMT’s who transported me to Plano Heart Hospital in the ambulance were exceptionally caring, as though transporting me and other patients was more than just a job, lives rested in their care, and my life was worthy of their best. I am grateful to all the doctors who came before these, who were not only indulging a career, but were practicing the art of medicine, a vocation of service to which they were called that engaged their careful attention and care.
I was welcomed to the fifth floor of Plano Heart Hospital, already registered (of course there would later be other paperwork) and quickly attended by a night shift nurse Shaiju (sp?) as I was moved into the room that would be my home for the next month. During my time there, before, during, and after surgery, I was attended by caring doctors, nurses, and hospital staff. I failed to get every name of every person who gave me their extraordinary attention and care, but I list some here that I remember, not that the others were not also important and caring, but because I was unable to keep records and my memory was quite overwhelmed by the number of people who I can call “caregivers.” Included among those who took special care were dieticians, housekeeping, nursing techs, therapists, nutritionists, food services, LVAD ambassador, and administrators.
I list the first names of people who provided for my care from Texoma Medical Center, TexomaCare, Plano Heart Hospital, Encompass Rehab Center, Guardian Home Health, and others. I apologize for any misspellings and omissions: Shaiju, Anitha, Kara, Lauren, Imene, David, Eileen, Holly, Hope, C.J., Merinda, David, Carolyne, Timothy, Laura, Lindsey, Sonia, Jerry, Liz, Ed, Margaret, Ron, Tom, Layla, Jessica, Melissa, Luz, Frances, Taylor, Helen, Nina, Lucy,Soliene, Neena, Nick, Nicki, Morshed, Betty, Helen, Allison, Lisa, Majdi, Lorraine, Pedro, Carrie, Yu, Tu, Maria, Kay, David, Amaka, Robert, Lorelie, Kathy, Melissa, Iris, Dennis, Chad, Siji, Katrina, Yolani, Emilie, Ellie, Garry, Jason, Mariamma, Stephanie, T.J., Beth, Adora, Angel, Mary Grace, Anupam, Howard, Brooke, Youmi, Trang, Judy, Deepika, Sylvia, Felix, Dennis, Felicia, Angeline, Joel, Nina, Sodonia, Allen, Jade, Katie, Sophia, Sarah, Larry, Lucy, Emily, Charles, Abrienne, Leslie, Jessica, Charles, Sharaymean, and Michael. Of course, there were many more. These were the ones we listed and remembered as we were able. I also include my family members who took time out from their busy lives to care for me, to pray for me, to love me, and to make medical decisions for me: Judy, Lisa, Tomi, Eric, Jonathan, Tim, Misty, Nigel, Mason, Seth, Eli, Angus, and Nina. My other granddaughters, Rachel and Jamie, welcomed me home with a hug when the time came. And there were the staff and therapists at Encompass Rehab in Plano and the Guardian Home Health Physical Therapist, Ben, and Nurses, Charlene and Nancy and their relief nurses who were sometimes a little beyond their training with an LVAD patient. And, as I write this, there were also Regina, Hunter, Carly, Rebecca, Olivia, Denise, and others who were part of the cardiac rehab staff at Texoma Medical Center that I hope to get back to finish.
In the years before these greatly appreciated people shared hope with me for a new life, there were others who taught, mentored, encouraged, forgave, nurtured, shared, appreciated, and instructed me in things that were right and good. I cannot list all their names but they include neighbors, teachers, college and university professors, family members, and friends, some long gone and some still living, some near and some distant. They include colleagues and strangers who became a part of the good that blessed those around me, many of them becoming friends.
Prolog: Making Life Decisions that Led Up to an LVAD
I began a novel in the early 1990s, but got busy doing other things. I hope to finish that someday, but I recently had these experiences that may be worth sharing, perhaps even helpful to some people and that is what I write about here, but I also write about a lot more because our experiences are not isolated incidents. They are part of the complete experience we call “life” and “living.” Life is more than just a journey or process. It includes the communities in which we live–family, friends, neighbors, strangers, acquaintances, geography, genes, society, culture, environment, events past and present, and so much more. Life includes the choices we and others make that affect not only our lives but the lives of those around us and the lives of those who are yet to come. Life includes why we make those choices.
I cannot include it all here and confess that I can only tell of my experiences and perceptions, but hope they inspire you to encounter difficulties and tragedies with great hope, knowing that you are loved, and even living with faith in the higher ideals of truth, justice, grace, mercy, and compassion whose source I find in my faith in God. I believe that life is more than the relationship of cause and effect. We have responsibility and thus choices in life. Human beings are a great deal more than the sum of their biochemcial processes. We can be wonderfully or horribly irrational.
I have sneezed my way through life, being allergic to more common allergens and having actually been tested for those as a child by Dr. Fred Grogan at Le Bonheur Children's Hospital in Memphis. My allergies also induced asthma from time to time. I watched the 1965 World Series from a hospital bed in Helena, Arkansas, where I shared a room from under an oxygen tent with a Golden Gloves high school senior, hospitalized from a football injury. The next Spring I would begin running track and lifting weights, strengthening my body, heart, and lungs.
My father’s death in January 1976 had occurred several months after I was part of a “personnel reduction” in the Sherman, Texas electronics manufacturing company in 1975. I found a job repairing and selling televisions, stereos, and appliances, but had to commute to Garland, Texas. My Granny had the first of several strokes just weeks after my father’s death. The company where I was then employed filed bankruptcy in the summer of 1976. I worked temporarily for a TV shop before going back to Texas Instruments in late 1977 where I had been part of the reduction in work force in 1975. And my wife of four years filed for divorce a few months later. All these events happened in less than three years. Needless to say, when I took stress questionnaires my score was quite high.
In 1979 Judy Francis Owens and I were married. Finding myself suddenly a stepparent to Lisa and Tomi Owens, and then parent to Eric Snider, the dynamics of my life changed. I bought a washer and dryer with the money I was saving instead of the sports car I was considering. I got a new water heater our first Christmas and my new wife got our first microwave oven. Months later we paid for a lawyer and court costs in installments so I could adopt Lisa and Tomi. They officially became Sniders and together we fished and camped. Then, after a miscarriage, we had a son, born nearly a month premature. Before he was born, I would rub Judy’s stomach and said, “Come on, baby. Let’s play.” And I would feel him move. After his birth, he lay in the incubator at the hospital and doctor after doctor declared, “We don’t know.” I watched the monitors and wanted to breathe for him. I took his little hand and said, “Come on, baby. Let’s play.” He grinned.
Sleepless nights took me to a nearby park where I would jog the trail. When exhausted, I climbed to the top of the soccer bleachers and knelt. I was reconnecting with the God I had abandoned and whom I felt had abandoned me. It was there I felt an urging to adopt the girls and one night, while little Eric was still struggling to live, I pled, “I have not been good, but he is just beginning. Take my life and let him live.” And in reality, that is what happened. Our son will be 38 in October 2019 and I spent over 36 years in some kind of ministry and service.
After a few years our new family purchased a few acres in the country and started building a cabin that was to be our weekend retreat. We were going to plant an orchard, garden, and eventually have animals, but after several months, we sold our little house in Sherman and moved into a smaller house trailer (not a mobile home by any modern standard), while we built our cabin that was to eventually increase in size and become our home. Our lifestyle could be described as "sometimes primitive" as we worked, built, and coped with our situation, becoming stronger and learning to do what needed doing. We sometimes had fun, but life responsibilities sometimes were simply a burden. We became involved in the life of the Sadler community and Sadler United Methodist Church. The God who had been part of my life as a child and immanent in my life as a Church absentee became an intimate but conscious mystery and presence again. I started taking correspondence courses and then went to college, inspired by my newly rekindled faith.
In 1989 I left electronics as a career and entered ministry as a vocation. I had been able to design and install some electronics circuits that enhanced the operations of the machines in our work area and thus, fulfilled that desire to function as an engineer. After leaving electronics, I worked as a youth and education director at Whaley United Methodist Church, Student Local Pastor at Ector and Mulberry United Methodist Churches, and then ordained Deacon and then Elder at Krum United Methodist Church
In 2000 I moved back to Sherman to serve as pastor at Key Memorial United Methodist Church. In May 2003 my brother died of aortic dissection. My mother, a retired nurse, began to consider our family history. My Dad had died, the doctors saying his heart had exploded, a common expression for aortic dissection. Daddy’s older brother and an older sister, along with his oldest nephew, had all died, their deaths being described in similar terms. Other family members died under similar circumstances, indicating a genetic factor. Having our hearts and aorta tested became important on our list of things to do. Later that year I was tested for heart problems and told my aorta was good but that I had other problems. A number of tests were performed over the next several weeks and in November 2003 Dr. Robert J. Wilcott performed open heart surgery at Texoma Medical Center in Denison, Texas, completing five bypass graphs on my heart.
We had watched preparatory videos before the surgery, explaining some of the things I might expect: weakness, cold, emotional swings, and even death. They also told me I probably would not remember most of my time in the hospital. They were wrong about that last part. My brain struggles to remember names, but I remembered becoming alert sometime the afternoon of my surgery. My wife and son came to visit, but I could not answer questions with the respirator tube in my mouth and throat. I remember my oldest daughter bringing two-year-old Eli to see me and how scared he looked as he looked at his Papaw, connected to all the paraphernalia. I remember one of my church members telling me he had lost 30 pounds when he had open heart surgery and how I could stand to lose some weight too. I remember Fred Durham, a fellow United Methodist pastor and my district superintendent at the time, and Jeff Jackson for whom I had conducted his wedding and who was then an EMT trainer. I remember a nurse coming, escorted by nursing students, as she removed the respirator tube the evening of my surgery. I remember the itch that the morphine gave me when pain grew serious enough that I pushed the button. One of the doctors approved giving me Benadryl for the itch, so I would hold out as long as a could, tell me nurse, push the button for a larger dose of the pain killer, and then sit up and scratch my face, arms, legs and ankles until the Benadryl did its job.
I remember that nurse coming into my room to remove one of the tubes in my abdomen and I asked, “What does that one do?” She informed me that was where they injected a novocaine-like medication that soothed the pain in my chest. I told her we might want to keep that one in. She took it out anyway-- doctor’s orders.
I remember tomato basil soup for lunch the next day and dry chicken for dinner. I have had a fondness for tomato basil soup since that day, but never look forward to dry chicken. I remember fake eggs and real bacon for breakfast the next day, along with grapes, toast, and jelly. I remember a sponge bath and how I tried unsuccessfully to be modest. Trying to be modest had already failed when the nurse came to shave me for the heart cath just a few days earlier and then again, when I was shaved and prepared for the heart surgery.
I remember that the stool softener working with the grapes created a situation the day after my surgery. They had to bring in a potty chair and park it next to my bed. My physical therapy started there, gathering up the tubes and monitor wires, getting out of bed, and as quickly as I could, finding my way to the chair. A bed pan just meant a mess where I had to be shuffled around while the bed was cleaned. The doctors and nurses decided the chair was the better option and I agreed. They kept my bed at a head-and-back-up tilt to facilitate my movement, creating a new task as I tried to keep the gown down, covering my privates as people walked by or entered my room. A catheter and my need to be quick to the potty chair did not make underwear a necessary garment.
Drainage tubes were removed either Friday or Saturday. The nurse recruited a helper and she grabbed two tubes and the other nurse the third one. She said, “On the count of three,” and they pulled those tubes right out of me. She said, “Aren’t you glad we did them all at once instead of one at a time.” She was right! The sensation was not pleasant at all, not something I would sign up to do if given the option.
I remember a couple of hallucinations, probably brought on by the morphine. One was initiated by the news that Mount Etna, the Italian volcano, had stopped erupting that month. I saw a volcano over my head, surrounding the light in the ceiling. The other was when I looked at the storage cabinets along the wall. They looked a lot like kitchen cabinets and I saw soap suds pouring out around the doors, like when you put the wrong dishwashing soap in your dishwasher (Yeah. I did that once).
The morphine drip was removed and I remember a male night shift nurse bringing new pain medications ordered by the doctor. He had two pills in a cup and I said, “I didn’t know I was allergic to so many different medications. What if we try just one?” I took one Ultram and panted for breath with sweat dripping down my face for the next several hours. We switched to hydrocodone, a medication my body well-tolerated when Ibuprofen failed to work for me.
On Saturday a physical therapist came into my room in cardiac ICU and took me for a walk in the area outside my room. Dr. Wilcott was sitting at a table as I passed and he asked, “How are you doing, preacher?” I replied, “I am doing fine,” to which he responded, “You don’t look so good.” I was really weak and dizzy but I was determined I was going to do what was needed to get well and go home. My Daddy used to say I was hard-headed. “Stubborn” is my word of confession, but I also know that stubbornness has its time and place. It is both a part of the human condition and a part of the human spirit.
I remember telling a night shift nurse about my brother’s death. I struggled to hold back the tears. The nurses in TMC Cardiac ICU were personable, patient, and caring. I could fault none of those.
I remember on Sunday being taken to another cardiac recovery area on the third floor in the hospital, one less intense. Nurses had multiple patients in this area. I was later told “eight patients.” A nurse introduced herself as my nurse and said I would be able to take a shower on Monday and that when I could walk to the end of the hallway and put my fingerprints on the window, I would be ready to go home. After I was settled into my room, a code blue was issued and “my” nurse became that mystery person’s nurse. I was assigned another. No one else was aware of the promise made to me that my fingerprints on the far window would indicate I was ready to go home. I touched that window daily, starting on Monday, but was not released until Wednesday.
I remember a respiratory therapist with trainees in tow and pains in my abdomen, warranting an ultrasound scan of my gall bladder, revealing only “sludge.” After listening to the gas sounds in my abdomen, the next respiratory therapist decided we should try a different type of respiratory therapy, one that did not force air into my lungs and gut. The first was used, I was told, because one of my lungs had partially collapsed. The second, a nebulizer, was much less rigorous. I was given ibuprofen for pain and it worked. I was able to sleep.
I sat on a bench in the bathroom and my Monday shower was scary. I was sure the incision in my chest would open up and I would spill out, but it did not. I sat there in solitude, the nurse standing outside and offering to help as I needed. I was still trying to maintain some modesty.
Daughter Tomi’s workplace had sent a basket of get well cards and goodies. I was looking forward to one of the Snickers in the basket. The room had a sink with a toilet that rotated out of the wall. I was encouraged to get up and walk as I was able. They were not giving me stool softeners after the incident downstairs, so going to the bathroom was no piece of cake, but the grapes still helped.
A night shift nurse scolded me for getting out of bed and walking without letting her know. I was not to do anything not requested or approved by the doctor. I thought walking was something I was supposed to do. But she informed me that I was not supposed to walk without being connected to a telemetry device so they could monitor my activity at the central desk. On another night the same nurse scolded me for being awake when she arrived for her shift at 11:00 pm, “Why aren’t you asleep?” The respiratory therapist had come in and woke me up not long before she arrived. I was not getting back to sleep easily, but she had probably learned that an awake patient at night was a problem patient at night. She was stern but unrelenting in the care of her patients.
The day shift nurse was a gem and answered questions, consoled me to the fact that it was not by following rigid procedure I would get well, but it would be by rediscovering how my body functioned, resting as needed to rest, being active when I felt up to it, and more. That first Snickers bar was horrible. Most of it went in the wastebasket. Judy took me home on Wednesday as I gratefully said, “Good-bye” to the day shift nurse who had been so helpful and who wheeled me out to the car. The ride home was rough. I told Judy that, if I had been a carton of eggs, I would all be broken when we got home. When I got home, I physically felt I should be in the hospital, but being back at home in the parsonage in Sherman emotionally felt almost liberating, although it was also an alien kind of feeling. I was not the same person who had left a week earlier. I was frail and lighter. I was not accustomed to feeling and being treated like an invalid.
I was hungry at lunch time and looked in the refrigerator for something that might be appealing, but found nothing. I sat at the kitchen table, tired and weak. Judy brought me a can of nuts and a Dr. Pepper and I wept. It was the feast I needed and tasted incredible. It was as though she just knew what I needed.
Thursday was Thanksgiving Day. We had a family Thanksgiving Dinner tradition. We invited family, church members, and anyone who would come that we would provide turkey, dressing, and gravy, along with a few sides at the church. Others could bring other sides and desserts, but were not required to do so. I instructed as Eric smoked turkeys Wednesday night. Judy made dressing and I helped make the gravy. Following my lift restrictions and trying not to lift more than eight pounds, I helped load up the car the next day and my family went to serve Thanksgiving Dinner to the people who turned out at Key Memorial United Methodist Church. The local TV station had gotten word of the dinner and they were there to interview people and take film clips that were aired on the local news that evening, convenient for my viewing. Dr. Wilcott’s associate had been at the church to help serve. I enjoyed Thanksgiving Dinner at home alone, but was blessed to know my family was where they needed to be, serving and sharing time with people who would not otherwise be with family on Thanksgiving.
I also found my emotions running freely after my surgery. On Saturday after returning home, I was trying to find something of interest on TV and watched as Clark Kent’s Daddy died. I broke out in tears and Judy came from the kitchen to check on me. “What’s the matter,” she asked, and my reply was simply, “Superman’s Daddy died.”
My therapy at that point in time was walking. I did lots of laps though the house, and being the type A personality I am, calculating how far I was walking and even keeping a log. When I was a little more confident, I dressed warmly and walked down the street, once getting so far from home that I worried I might not make it back. This was before we had cell phones. I went back to doing laps through the house and eventually walking to Fairview Park where, years earlier, I had been a jogger.
As I recovered, my mother-in-law, Dorothy Houser, having broken her hip, moved into the parsonage with us so Judy could look after both of us without having to drive across town. Dorothy looked at me one day in my 30-pounds lighter frame and said something about my “looking like an old man.” I was fifty and she in her eighties. When I looked in the mirror, I had to confess it was true, but she told me my cooking was pretty good. I took that as a compliment because she had been an excellent cook for years, having been one of the cooks at Austin College.
The recliner that Judy had bought at an estate sale became a close friend. She didn’t like my favorite old blue one. It had endured wrestling grandsons and showed a lot of wear. She was eager to be rid of it. One day, as I leaned back in her proud purchase, the recliner broke and I nearly fell on my head. I told Judy that my old recliner would not have betrayed me like that. The next day Ricky Atkinson, son of Rev. Terry and Grace Atkinson, brought a recliner to the house and asked if I could use it. He said they were having an estate sale and he thought I might be find some use for a recliner as I recovered from heart surgery. Sixteen years later, we still have that recliner. Judy got rid of my old blue one and of course, the estate sale recliner went quickly out the door. I still wonder how Rick could have known I was needing a recliner.
I had trouble getting comfortable for enough to sleep at night. My shoulders hurt. My chest hurt. I slept from location to location every night. A sectional, a bed, a couch, a love seat, the recliner, and even the floor each provided a couple of hours sleep. I got chilled easily and started wearing caps, even to bed at night. My legs grew stronger quickly, but every time I tried to strengthen my upper body, I had to recover for a couple of days. I had been sent home with hydrocodone, but rarely took one in the coming weeks. I found that ibuprofen worked well most of the time and a pharmacist friend recommended naproxen, which I found to be better. I had a bottle of hydrocodone that was suppose to last me through the end of December, but saved that for the really bad days. I took the last one in April.
Those days and weeks were a time of hope as I grew stronger and was encouraged by my family and friends, but I was not yet ready to dance or to bicycle with my grandsons, but a couple of them walked with me in the park during Christmas holidays. For weeks I became a daily walker, usually walking miles and listening to lecture tapes from the Great Courses on my Sony Walkman I had purchased at a church garage sale. I listened to lectures on philosophy, religion, economics, and history.
As the walks became easier, I began to wear ankle weights on my wrists. As I was walking one day at Fairview Park (only a few blocks from the parsonage), a stray ball came rolling my way. I picked it up and learned quickly that ankle weights on the wrist do not allow for much of a throw. The guy who had set out to retrieve the ball still had to walk some distance to get it back. Following my CABG, I had dental problems (possibly related to the heart failure or surgery) and sometime later I had surgery to correct dying tissue where the catheter had been secured. I was told by my mother that my heart had stopped during surgery and I had to be revived. I wondered if they had used the paddles and I had clamped down or ground my teeth in the process, but no one confirms this. It just makes sense to me. I started learning to live with the side effects of the medications that were now part of my life and even when to take them for greatest benefit as I cycled or walked. An ophthalmologist told me in 2006 that my eyes showed no sign of the heart disease evident in my eyes that was evident in other patients he treated. He later became a cycling companion.
During that time a family member had posted a quote falsely attributed to Abraham Lincoln, saying members of Congress who act to damage military morale in wartime “are saboteurs, and should be arrested, exiled or hanged.” My response was simply, "who is worthy to decide?" That set off an angry response, followed by one after another. I went back and looked at my email responses which were intended to be humble and thoughtful, but humble and thoughtful does not work in the face of angry and defensive sometimes, especially where politics are involved. I finally blocked the emails. They were causing too much stress as I was still trying to recover from heart surgery, something that does not come quickly.
In the years that followed my CABG, I continued to work at United Methodist Churches, directing SEEK Camp, bicycling over 27,000 miles, fishing from a kayak we bought two years after my CABG surgery, helping build ramps and doing community and home improvements for my neighbors, gardening, and walking a lot, keeping my heart health at a peak. Stress tests and EKGs indicated that my heart was still weak with an Ejection Fraction less than thirty percent. I rode in bicycle rallies and small races which were fund-raisers for various charities and causes. Cycling was often a family event. Beginning in 2009 our daughters, son, and grandsons rode as family and with friends in the Race for Grace, raising thousands of dollars in pledges for Grace Children’s Hospital in Haiti through International Child Care.
In 2005 I became the pastor of First United Methodist Church in Winnsboro, Texas, where we made new friends and were involved in the community. The church grew and we built a family life center. I was involved with our church youth group, Scouting, Campfire, and 4H. I was involved with the local Chamber of Commerce and Lions Club. I attended City Round Table meetings with representatives of other service groups. I took the idea of Great Days of Service from Sherman, Texas where it was started by Rev. James Pledger and others, to the Ministerial Alliance in Winnsboro where we organized and coordinated five different events in the four years we were there. We volunteered to help our neighbors and community, doing home and lawn improvements, scraping and painting, cleaning gutters and flower beds, painting, repairing walls and windows, building wheelchair ramps, and a great many other things that brought community volunteers together. My wife and I worked at the Community Service Days event the weekend before I moved to Pottsboro where I become pastor at Lakeway United Methodist Church in July 2009. My heart health was relatively good and I bicycled over 9,000 miles in the four years I was in Winnsboro, mostly in the rolling hills of East Texas. Pittsburgh and Minneola both provided 50 miles round trips from Winnsboro.
At Lakeway I became involved in the Ministerial Alliance and we started Great Days of Service in the Pottsboro-Texoma area in 2010. Again, we did lawn, home, and community improvements that would otherwise have been postponed or not done. We were building community relationships as we worked with our neighbors to do home repairs and enrich the lives of those who requested our help. We did these things as family, as church, as ministerial partners, and as community. One wheelchair-bound gentleman told me after we had finished a deck and ramp at his house that he was able to go out on his porch for the first time in two years. Another told us that he would finally be able to get out of the house more than twice a year. These were good things, but perhaps the great thing was the relationships and friendships we were building among members of the community.
At the end of 2013 Judy withdrew her IRA (and eventually mine) and started what was to become our retreat home and eventually, our retirement home. We got a construction loan. Contractors built the foundation, put up a metal frame and shell, framed the downstairs outside walls, did most of the downstairs plumbing, insulated outside walls, installed a garage door, and installed the downstairs HVAC unit. The rest of the work was up to us and we had less than a year to make it ready to move into because we had a construction loan from a local bank and we would need to convert that to a mortgage loan. During this time I was working at the church, taking a graduate history course online, planning two Sunday worship services, doing pastoral visits, teaching short-term classes, leading and attending meetings, and serving on boards and committees with the District level, SEEK camp, Wesley Village, Lions Club, and the Resale Barn Board.
With the help of our son, our daughters, grandsons, a granddaughter, and church friends--Ron Janson, Glen Murley, Curt Dyer (and Cole), and Rick McCommon--we got the house ready for inspection. We passed the inspection and went to the bank to set up our mortgage, moving into the house mostly in February 2015, but keeping furniture and living necessities in the parsonage at Lake Texoma where we had lived since July 2009. Having the parsonage allowed me to be nearer the church and in the lake community to rest, change clothes, eat lunch, and even sleep as needed. We and the church had been informed by our District Superintendent that Lakeway UMC should have a parsonage, because I would not be there forever and the next pastor would need a place to live.
While building our home, feeling pressure by the bank to get the house in living condition, and then having the house appraised, I had let my cycling drop on my list of priorities. Our loan officer at the bank took an extended Christmas vacation and we got letters from the bank indicating that our construction loan was payment due upon receipt and late. My heart health had started to wane, but I was physically stronger than I had been in nearly thirty years. I was simply losing the energy and endurance that cycling had allowed me to keep at a peak for my heart condition. The stress was taking its toll.
We had connected with Pottboro Elementary School and some of our Lakeway members were tutoring second graders. I visited with the elementary receptionist, the counselor and sometimes, the school nurse each Tuesday morning before I went to the classroom where I would collect the second graders, one at a time, chosen by the teacher for me to take the to an open room to read with them and listen to their stories. When I was first introduced to their class, the teacher came around and gave me a hug. We had known each other for years and had worked together at church camp. Sometimes I tutored other students in this class and at other times, the teacher would have the class demonstrate what they were learning that day.
And then, in 2015 and 2016 several issues arose at Lakeway United Methodist Church. I will not go into detail here, but these added great stress to my life. Losing sleep at night became the norm for months and then I ended up in Texoma Medical Center with one lung full of fluid and the other partially so. I had fought a sinus infection that had started moving into my lungs and suddenly I had an abscessed tooth. I put a heating pad under my head on a March 9, 2016 Wednesday night to relieve the tooth and the headache I was feeling, which apparently was not the best idea. Fluid from my head moved into my lungs. By 4:00 am I was struggling to breathe. By 6:00 a.m. on Thursday morning I had showered, dressed, and announced to Judy that I was going to the hospital. She told me to wait and she drove me to Texoma Medical Center.
Judy let me out at the emergency room entrance and then looked for a parking spot. I entered the emergency room where a young man at the desk asked, “What can I do for you, Mr. Snider?” I announced that I could not breathe and in the minute or so I waited to be admitted, I asked how he knew me. He said he knew me from Great Days of Service in Pottsboro.
From Thursday morning to Monday, I struggled to breathe and was diagnosed with congestive heart failure. Some time later I was put on a bipap, which made breathing easier, but the fluid in my lungs was not moving out quickly enough, putting a strain on my already weak heart. I was given hydrocodone or morphine for my tooth and Benadryl (to relieve itching, a side effect of morphine). I was finally able to relax on Monday evening and went to sleep. A young nurse entered my room, “Mr. Snider. Mr. Snider. Your heart.” She and another young nurse gave me some medicine in my IV which made my heart pound and I got no more sleep that night. Two days later, I was released on Wednesday evening, weakened and having experienced what may have been a stroke during my time in the hospital.
I went back to work, but, as I say, I was weaker. On my desk was a sack full of hand made get well cards from my second grade class. I teared up. When I returned to tutor, one little girl got up and came to give me a hug. She was not one of the students I tutored.
We were still dealing with church issues and my weakened state was little match for the task. I had symptoms of having had a stroke including struggles to complete sentences, losing words, and forgetting names and details. At 9:30 pm on Easter Eve we received a phone call to tell us our grandson Mason had been in a serious car wreck and had been flown to Plano. Early indications were skull fracture, broken ribs, brain hemorrhage, and more. Sleep did not come easy that night and I shared the next morning at our Easter sunrise service what had happened. Josh Burton, then pastor of Pottsboro First Baptist Church, laid hands on Judy and me as he prayed with the congregation for our grandson and for us at the Community Easter Sunrise Service hosted by our church.
After church that day, we drove directly to the trauma hospital in Plano where Mason had been admitted as a “John Doe” for hours before his parents were called. As we were entering his room, a nurse was exiting, shaking her head and saying, “Miracle.” We entered the room and said, “Hey Mason.” He was heavily medicated but responded to us and knew who we were. While we were there a neurologist came into the room and did an evaluation. As he was leaving he declared that the medications could be decreased. By the next day a Facebook video showed Mason up and walking with his Dad. They passed the therapist who was supposed to walk with Mason as they went down the hall. As we checked social media and heard from people we knew and people who were strangers, we learned that literally thousands of people were praying for Mason. Whether or not you believe in the power of prayer, or even the ethics and sincerity of what we pray for, something happened to change the original diagnoses for Mason. As of July 2019 Mason is twenty- two. He and his brother Seth bought a house together in Denison, Texas.
In July 2016 I moved from Lakeway UMC to Whitewright First United Methodist Church, a church resistant to change but with great potential for gospel and community. We did a great many repairs and upgrades to grounds and facilities, thanks largely to Joe Dickey, Angie Eads, and Dave Monson. The Women’s, Men’s, and youth groups were active. The men built wheelchair ramps as part of the Texas Ramp Project and by this time I had turned over leadership of SEEK Camp to others. Building ramps was fulfilling but my heart function (EF) was diagnosed at 20 percent. On the advice and with consultation of the District Superintendent, I announced I would retire in January 2018. A part-time, retired and former pastor, Doyle Henderson, who had been at Whitewright when they seemed to thrive many years earlier was appointed to the church.
Before I had left Whitewright, the District Superintendent called and announced that he had a small, part-time church that would require little of me but give me an opportunity to continue to serve. I was introduced to Sivells Bend United Methodist Church, a small congregation with a big heart for mission and community. They worshiped on first, third, and fifth Sundays, allowing us the opportunity to visit and worship with friends in various other churches on other Sundays. In February 2018 I was again admitted to the hospital, this time with congestive heart failure. When I had partially improved and with the reluctance of the doctors, I was released on Sunday. My wife, Judy, had a tumor removed the following Friday and started two weeks of radiation therapy. Tests indicated she was cancer free and has been since that time. Blood tests indicated that I was still in heart failure, but Judy and I gardened, cooked, built a porch on our house, and started monthly family dinners in our home. We also welcomed occasional friends to dinner. We were warmly welcomed and learned to love and appreciate the people at Sivells Bend UMC.
In the summer of 2018 our youngest granddaughter Nina learned to bicycle and pressed her “Papaw” to cycle with her. We would drive to the high school parking lot and do laps around the school, the sidewalk around the football field, and wherever else we could find safe places to ride. Then I started riding the highways again. I set a goal of a thousand miles for 2018 but only finished a little over 800 miles. My cardiologist had added Amiodorone to the medications I was taking for my “weak heart.” In the coming weeks my breathing became more difficult. I was unable to complete the rides to which I had grown accustomed without stopping to rest numerous times. And finally, I had to get off and walk my bicycle up the hill that had always challenged me but I had climbed successfully. Early in December I was advised to stop taking the Amiodorone, so I did, but I still struggled to breathe, had constant congestion, and just could not cough my lungs clear as I had done for so many years.
In March 2019 I wrote my obituary, called the family together and told them I was seriously sick and not expecting to live much longer. I was putting together an End of Life notebook with instructions so that Mom (Judy) would be able to pay bills and eat. Lisa would have medical power of attorney and would be the executor of the estate. She would see to it that her mother would pay her bills and eliminate unneeded expenses. We all admit that Judy likes to shop and spend money on family. We have three children, eight grandchildren, and a great grandson.
On Monday the last week of March, I wanted to get some projects finished that I had begun, so, with Judy’s help I lifted 80 pound bags of concrete, mixed and poured a slab for a storage closet in the carport we had just installed. We were planning to move the propane, gasoline, and diesel fuel out of our garage into an area less dangerous and more isolated from the actual house. I was short of breath, but we finished pouring all the concrete we had on hand and called it quits just after dark.
On Tuesday morning I had an allergic reaction to something I had for breakfast. I had never knowingly had an allergic reaction to any food. My tongue itched, my lips and face began to swell, but my throat and tongue did not. I took some Benadryl and we headed to Texoma Medical Center where they treated the swelling with steroids. The swelling went down in a hurry, but testing indicated I was suffering from congestive heart failure, something we already knew. Later in the week Dr. Ted Truly advised that it might be time for me to tell my cardiologist to send me south to the Dallas area for the next level of treatment, stating that he was leaving town to celebrate his daughter’s birthday and if I was still at Texoma Medical Center when he returned, he would see me then. I said, “Good for you. Enjoy your daughter’s birthday.”
Late on Friday Dr. Gangasani, my regular cardiologist’s associate, announced that I was being sent to Plano Heart Hospital when they had a room for me. He indicated that my heart (EF) function was now at about ten to fifteen percent. I was later loaded up in an ambulance (I can check that off my bucket list) and taken to the Emergency entrance at Baylor Scott and White Plano Heart Hospital where I was admitted, welcomed, and attended. If not for the allergic reaction at breakfast on that Tuesday, I would not have gone to the hospital, hope would have diminished, and my life would undoubtedly have come to an end, but things were to be different.
Beginning the next day, I was introduced to options. On Saturday, Doctor Timothy George (LVAD surgeon) and Doctor David Rawitscher (cardiologist) introduced themselves. I would later meet other doctors, including Dr. Rosenstein, the hospitalist at the Heart Hospital, a part of the Baylor, Scott, and White network of hospitals. As Lisa and Judy sat and listened, Dr. Gottlieb interviewed me and suggested I might be a good candidate for a heart transplant. We looked at three treatmentoptions – transplant, LVAD, and going home with stronger medication to live, perhaps, a few more months.
Transplant, LVAD, or go home a live out the next few months of my life: That Was the Question
The Question: Transplant, LVAD, or go home to live out the last few months of my life
Although Dr. Gottlieb had posed I might be a good candidate for a heart transplant, as a family we had already discussed the options. Heart transplant surgery came with a much longer disclaimer than the LVAD, but there were risks with both. Relocating and waiting for months to be near enough to the hospital when a heart became available was not economically, physically, or emotionally practical for us as a family and for me as a heart patient. I already had a history of bad reactions to common medications: Brilanta, Amiodorone, Ultram, and morphine. A regimen of new medications seemed risky. Even Tylenol makes me itch a little. I am a socially active person and suppressing my immune system in order to prevent the rejection of another heart seemed hazardous. And finally, because I am an active person with life goals and objectives, the idea of a year or more of regular testing, heart biopsies and such, was neither appealing or practical for me or to my family. We simply do not have the resources to drive three hours or so, one or two times a week or more for a year or more. Heart transplants take place at the main Baylor campus in Dallas and we live almost an hour and a half from that location. Plano heart Hospital is twenty miles nearer our home and that twenty mile difference is in Dallas city traffic. So we opted for the LVAD (left ventricular assist device). It must be noted that, although the device replaces the function of the left side of my heart, I still have a diseased heart. A heart transplant ultimately frees up the patient from some of the restrictions I will have the rest of my life, but, as of July 2019 I garden, built things, spend time with my family, cook, write, drive my tractor, do cardiac rehab, and anticipate being back on a bicycle in the Fall.
The Heartmate 3 (HM3) is a new generation of LVAD devices which now use highly efficient external Lithium Ion Batteries. The Heartmate 3 is smaller than its predecessors and only has a couple of years of FDA approved history for destination therapy. It is expensive, but comes with its own built-in microprocessor and, as I mentioned on the title page, has a great many accessories. The HM3 is a pump that does not depend on blood flow for lubrication, but operates in a magnetic field, programmed at the hospital or the doctor’s office. I am glad that hackers would have to have direct access to my controller, so I must have great trust in Dr. Rawitscher’s staff. I think I am in good hands as long as Microsoft is not doing upgrades and Google is not tracking my heart electronics. And I am bionic, although not nearly the Six Million Dollar Man of the TV series. Our granddaughter told me she wished I had one of those things in my chest like Iron Man. She is too young to remember the TV series. I cannot fly or leap over tall fences. I cannot run faster than a car or see like an eagle. I am alive with attachments and as someone said in a youtube LVAD video, it is a little magical.
As I prepared for the LVAD, numerous tests were done, including CT scan, heart cath, pulmonary function test, echocardiograms, and more. I tell folks I was cat scanned, dog scanned, and goldfish scanned. Meeting certain health criteria for an LVAD was necessary just as a patient must meet the criteria for a transplant. The doctors and I learned things about my physical condition no one had known or indicated before my stay at Baylor, Scott, and White in Plano. They accessed my medical history from other hospitals and doctors and reminded me of procedures and conditions I had nearly forgotten. They were thorough and all was done with a great amount of candor, competence, and compassion. I can now access the things they documented and made available about my health on a cell phone app. The app literally accesses thousands of records, indicating every test, procedure, result, and condition that has been documented and made available. I am still learning about my medical history.
The doctors talked about sending me home for the weekend prior to my surgery, but that would have meant carrying an IV pump and wearing a life vest. Apparently, there were other risks involved. Friday afternoon Dr. George informed me that they had decided to keep me in the hospital until my surgery because of the risk involved. I was to be one of five LVAD implantations the following week and early Thursday morning, I was prepped for the surgery.
My family had been visiting daily, driving from Sherman and near Sadler. I had been visited by the North Texas United Methodist Conference Northwest District Superintendent L. Marvin Guier III and his wife Kathy. North Texas Conference Bishop Mike McKee came to check on me and my grandsons came while he was in my room. After praying with us, the Bishop graciously left me in the company of family. Rev. Terry Jones and retired Presbyterian Nurse Celestine Wong came to see me. Terry and I had attended licensing school together and had served small Methodist Churches in the same area in our early days of ministry. Celestine had graduated from high school with me in Helena, Arkansas. She had worked in Texas until her retirement and was now retired in Plano. Church members and former church members came to see me. One church member indicated that her husband’s company had poured all the concrete for the hospital. Others came to remind me of the part I had played in their lives, leading worship, preaching the gospel, doing weddings, teaching, building friendships, doing community service, and more. Social media was a reminder of how connected our family has become with literally thousands of people we can call friend, family, colleague, and spirit kin. Family friends sent gifts, cards, and other caring gestures and symbols. I was told that a great many people were praying for my well-being. Hospital chaplains came and helped me update my Medical Power of Attorney and Living Will. They offered to help with any other items I might need. Caroline King from palliative care was a great encourager and cheerleader for comfort, patient care, and family involvement. I cannot thank everyone nearly enough for all the support I and my family received in this time, but I do thank God for all those who reached out, visited, prayer, and supported our family.
We would sign all sorts of medical papers, disclaimers, permissions, and more. Judy signed, saying that she would not leave me alone without a properly trained person for the next several weeks. Our son installed the designated medical outlets required. We prepared ourselves for the next stage of my life and what it would mean for the family. I did not want to imagine Judy, Lisa, Tomi, Eric, and my grandchildren grieving, but as a pastor, I have seen it often and I had tried to prepare them for that possibility. I knew they were strong and would manage well.
We were ready for an LVAD, or at least as ready as we might be.
Life as a New LVAD Patient in the Hospital and Rehab
I would not remember my surgery, of course, and my memories of the days that followed were spotty and often erroneous, affected by days of strong medications and the strain on my body as it adapted to being bionic. I sometimes thought I heard my family outside my door and was assured they were not. I heard doctors and nurses talking. I saw people come to the window between my room and the area outside. I asked for my family sometimes and was told that my family had gone home. I later learned there was a nurse whose voice outside my door sounded similar to my daughter Lisa. I heard people crying outside my door. I heard people caring and people complaining, sometimes in my room and sometimes outside it. I heard people desperate for hope that seemed to be failing. I opened my eyes one night as I struggled to breathe, still having some congestion, and saw a nurse sitting on the couch, reading papers. I heard an alarm and watched her turn her phone off numerous times. I heard words of compassion and comfort and words of concern. I heard comments about the medications used to treat me and became concerned that I could not communicate. One of those, Amiodorone, had affected my heart and lungs the previous year. Dr. George later assured me, saying that I had only been on a low dose and had been carefully monitored because this was an effective and common medication used to treat arrhythmia. Because of the anxieties I felt, I extubated myself (removed my own breathing tube, something a friend had done after heart surgery a few years earlier. His lungs collapsed. He had a stroke and did not recover).
As I have mentioned, most of these things really occurred and I now know that some of them were misinterpreted by me. I do know that I sometimes respond to medications differently from other people. As I wrote earlier I remembered a great many details the day of my bypass surgery in 2003. What was different about my time at the Heart Hospital in Plano were the length of the stay, the amount of activity both in my room and outside it, and the number of people who were attending to my health. I was being constantly monitored at the main desk on the fifth floor and anything that appeared alarming would normally bring a nurse into my room to check on me whenever one was not already present. Otherwise, the nurse got a call from the desk and they would assure the people at the desk that I was in good hands.
I am told the right side of my heart could not keep up with the new LVAD output, a case of “the right hand not knowing what the left hand was doing.” An external RVAD was placed temporarily and days later, removed. I was on lots of monitors, machines, and medications during that time. The family and hospital staff kept close watch to ensure I was doing well. The nurses were extraordinary in their care with little exception. There were people who did extra things to make me comfortable and I wish I could remember all their names. I am grateful. I was cared for and well-attended. Realistically, there were times I felt anxious and afraid.
Learning to live again was a great struggle, but many people, including nurses, doctors, and therapists were participating in knowledgeable and tangible ways in helping me to make that happen. I was warned to restrict any activity that may cause pressure on my chest because my chest needed to heal. I also had other wounds that needed tending. I was introduced to a wound vac, a device that gently draws the fluid from an open wound so that healing occurs more quickly. I had been connected to IVs and monitors for so many days, I only just started to realize I had a new monitor, one that indicated the readings on the LVAD that was now part of me. I was instructed that I should weigh every day to get some indication of fluid build up and that I should always weigh with my batteries (my battery pack being nearly seven pounds). Even with my batteries, I weighed twenty pounds less than the morning I entered the hospital with an allergic reaction that might never have happened, except something had to be different about that particular morning to cause me to go to the hospital.
The doctors at Plano Heart Hospital, primarily Dr. Rosenstein, Dr. George (both of them), and Dr. Rawitscher, were quite attentive. I came to expect each of them almost daily, along with others who discussed my condition, but these were the primary three. They sometimes surprised me with their attentiveness. C.J. and Hope, the LVAD coordinators from Dr. Rawitscher’s office came regularly, teaching and training my family, assuring us that we were doing well. Other doctors who were on my list were Dr. Hassle, Dr. Nosnik, and Dr. Schwartz (I am almost certain I mispelled these and know I neglected to list some of the doctors). Other doctors, nurse practitioners, hospital staff, and nurses came to check on me. I was surrounded by the best of care. For a time the nurses and hospital staff were like family and best friends. I trusted my life in their care and they most often brought a sense of joy and hope in their visits to my room.
When portable, I am now powered by batteries. When asleep at night, I am connected to the power supply that plugs into the wall. I sleep with hardware and sometimes get wrapped up in the cord, but now, I do everything I do with hardware. I cannot safely swim, take a bath, or fall into water anywhere. Eventually, I will be able to take showers with the accessories that are now a part of my life and my physique.
I travel with my own conversation starter. Not everyone travels with a battery bag slung across their shoulder, but I have other options, including a couple of vests and a concealed weapon shirt that can house my batteries while I wear the controller on my belt. The white drive line is a giveaway that something is different about me. I am more willing these days to tell people I am battery powered than some want to hear. Other people look at my white line and ask whether I am wearing an colostomy bag or something else. The white line that is obvious enters a hole in my abdomen that I must keep clean and sterile to prevent infection from reaching my heart. As I write this, an LVAD friend is awaiting a heart transplant because he has an infection around his heart pump.
The particular device I have is made by Abbott, once Thoratec, and before that St Jude Medical. Medical technology involving the heart is moving rapidly and turning some of us into “bionic people” for the sake of having life, even a good quality of life rather than merely existing.
The LVAD comes with accessories: consolidation bag, spare batteries, vests, shower bags, and other items can be ordered. I am currently having to replace the batteries daily with ones from my charger. My wife, oldest daughter, and son were all trained to replace my dressing on my drive line (which enters my abdomen) two or more times each day. They were also trained to handle emergencies. Once the drive line port in my stomach is healed, other, less urgent and frequent means will be used to clean and seal my drive line from possible infection. I will also be able to take a shower, using the currently pristine shower bags.
I have contacted the local EMS service, my General Practitioner Dr. Ted Truly, and Texoma Medical Center. Loss of power to my LVAD could mean loss of life. It is truly a bionic lifestyle that I now have. When I am in a quiet place, I hear my pump and family members can hear it too. One of the therapists in the cardiac rehab center at TMC listened with a stethoscope, smiled, and declared, “It’s singing to me.” I will be contacting others in the area that may be first responders if something should go wrong and my wife, daughters, and son are not around me. My bag has tags that instruct, “Don’t think I’m dead if I don’t have a pulse.” Then it lists things to check: skin, fingernails and lips, and the sound of my pump. The tag instructs, “Take me to the Heart Hospital Baylor Plano and call my LVAD nurse.” Chest compressions carry the risk of dislodging the pump and we really do not want that to happen.
I cannot say enough good about the LVAD nurses–C.J. and Hope. At least one or the other of them seemed to be on call at all times, but then, we only called during the day, sometimes confused about appointments or other things that were in writing, but then, we brought a lot of reading material home with us, the rehab center in Plano gave us their own version, the home health people gave us more, and we could nearly start a library on healthcare for heart patients and LVAD recipients. We are greatly trained and knowledgeable, having been trained by some of the best, having had our questions answered in caring and instructive ways, having hands-on experience, and doing research on the internet. LVADs and other heart pumps have enough history that a lot of information, while not always current, is yet available. This includes training videos, manuals, and much more. As of this writing, Hope has left to take on other responsibilities that free up her time for her teenage daughter and I will be introduced to a new LVAD nurse at my next appointment with the cardiologist in Plano.
After two open heart surgeries, I have scars in abundance. They are reminders of my health journey and the precious nature of life itself. Scars do not tend to support attitudes of vanity, but may contribute to an attitude of some sort. My wife says I talk a lot more than before the surgery and I find that to be true. She also says I talk too much now and I must agree. Currently, I am in recovery mode and am limited in my physical activity, but that dwindles from week to week. I cook, pick berries, write, build things, spend time with my grandchildren, do chores around the house, log my foods and other health-related statistics, and participate in cardiac rehab. As with my first open heart surgery, I have occasional bad days when I feel like doing nothing, and being a normally active person, that affects my sense of self-worth. My wife is active every day, doing something, helping someone, doing household chores, or enjoying her garden and lawn work. I am not tolerating the hot summer sun with great enthusiasm and wonderful feelings of well-being. I get too hot too fast, sweat easily, and, now being on strong diuretics, I lose electrolytes which makes me feel weak and lethargic. I also have sleepless nights each week which add to the fatigue I feel. In the meanwhile, I am getting stronger, thanks to the new lifestyle, rehab, encouragement and support of friends and medical professionals, and my grandkids. We are getting quite accustomed to Papaw running on batteries, actually “walking” on batteries and quite slowly at times, but there are days my Fitbit tells me I have walked ten or eleven thousand steps.
In March 2019 we were planning for the end of my life story. By May, thanks to the medical and family care I have received, we began writing new chapters. One of the cardiac therapists informs me that they have orders for me to complete thirty-six sessions with them. I am not eager to be tied to such a rigorous and time-consuming schedule, but we will see how this plays out. I am even considering continuing after my prescribed time is done. I have a life to get on with, building to do, writing, church work, volunteer and community work, family dinners, meals with friends, and eventually, bicycle rides with grandkids. I have books to read and things to learn, music to play, and perhaps even, music to write. I learned recently that the magnetic pickups in my Fender Stratocaster pick up the magnetic field in my heart pump. I am in the key of F#.
There are fish waiting for me to catch with my family or for them to catch and remember the good days we had fished together. There are friends I would like to see at least once more. I would like to feel the wind on my face as the ground goes too fast under the wheels of my bicycle. I want to sit with people, broken and strange, humble and arrogant, but who all want to discover something about the God they claim to believe as in worship, they encounter something of the mystery that does not always satisfy or overcome our doubts, but is always there to remind those of faith of the faith, hope, and love, engendered from grace and the story of the God who loved us so much that a Son came, given to live and die in our human history that we might become the best God has created us to be.
I thank all the doctors and nurses who genuinely cared and tended my health, not because it was a job, but because it was their calling and they had a passion for it, making me feel like more than a patient, but a friend in need of what they and they only could provide.
Statistics provide no guarantee that I will be able to accomplish all the things I yet want to do with my life, but someone has said, “Life is what happens when you are planning other things.” I trust that God and family and friends will help me discover what that life, my life and ours, will really be. I have not yet been a person who was pigeonholed easily into statistical data, often being the exception to the rule, good or bad. Being an asthmatic athlete, allergic to common medications, participating and placing in amateur bicycle races with an EF of less than thirty percent, being aware of things while anesthetized, remembering things that should not be remembered, and forgetting things that I should not, and much more. We might all agree that I have been an anomaly, a different kind of human creature, but I share with you my belief in the God who is above all, who created all that is, who is the source of all good and yet allows all that is bad, and who comes personally to touch our lives in Spirit and in Truth, helping us to discover the best God has made us to be when we are willing. This God can withstand our doubts, our anger, our fear, and our failure, and yet love us with an eternal love because that is why we were created-to be participants in that love, receptors and receptacles, for whom love is given and giving.
Updates from August 2019 and Following
In August I experienced a huge setback. A staph infection got inside me somehow. I am told that staph is on our skin and that is usually ok, but because those of us with a driveline (insulated wire) coming out of our abdomen, we are especially vulnerable to staph or other infections. On Friday I was doing great with cardiac rehab, working in the yard, and sleeping well most nights. On Saturday I worked on a bicycle for a grandson. After finishing, I went in the house with serious chest soreness. I thought I had overworked and was needing to get in shape. After church Sunday afternoon I had a rising fever and infectious drainage from around my driveline. We were advised to go to the Plano Heart hospital emergency room. Once there, I was tested for infection. Fever was still rising. I was quickly given antibiotics and a culture was taken. By Tuesday evening the infection had moved to my blood but the infection had been identified as staph, one that is treatable with particular antibiotics. I spent ten days in the hospital. While there, I underwent another surgery to clean out infectious tissue and bone. I was sent home for the next six weeks with an IV antibiotic, along with an oral antibiotic. My medications -- blood thinners, direuretics, etc. were changed often to meet my current physical condition. Because of the extra attachments, limits to my activity, new routines, and medications, I grew weaker than in July. I still have many sleepless or near sleepless nights. I get short of breath and have to force myself to do activity. Cardiac rehab was recommended, but impractical with home health nurses coming as their schedule allows, weekly doctor visits to various offices in Plano, having to take meds at particular times each day, making sure my wound vac battery was charged for outings or activity, and having to change my IV antibiotic daily, and batteries every two days. The routine ruled my life and each day seemed shorter because it was so much like the day before. For weeks I got good sleep one or two nights each week. Allergies, pain, going to the bathroom, losing electrolytes more quickly than my body replaces them with supplements, were all having consequences, but this is still life.
November is here. I have not missed the wound vac or the IV pump, but I am on medications, including an oral antibiotic, that make me nauseous and queezy at times. Foods I normally enjoyed are repulsive to me. In general, I can barely tolerate fruit and vegetables that I normally enjoyed. Bananas, carrots, potatoes, tomatoes, onions, oranges, apples, blueberries, eggs, pancakes, strawberries, green beans, peas, corn, beef, turkey, bacon, chicken, and other foods I have long enjoyed may bring on the nausea. I have long enjoyed cooking and sharing with others. Because of my low sodium diet and the strange taste in my mouth, I am reluctant to cook for others. I have found low sodium or no sodium products that help. Thanks to the folks at hackingsalt.com, I am finding some recipes that work for me. Most of the no sodium substitutes aggravate my taste sensitivity at various times. I still cook and eat, and I am trying to be active again, doing some landscaping, back in cardiac rehab for a few weeks, and hopefully regaining my strength. Since my taste has gotten so strange, I tend to crave foods that are not healthy for me – Whoppers, green olives, pimento cheese – and have trouble eating my fruits and vegetables. The low sodium V8 is just not as tasty as the full blown version. Raspberries are ok. Chocolate may taste good or not.
I have loved and been loved. Life has been good. There are honestly days I do not think I will live much longer and almost welcome the relief of it all being over. I am having trouble balancing limited fluid intake, the effects of the diuretics and other medications, and the fact that I sweat during rehab or outdoor chores. I take extra potassium and drink EmergenC, but cannot always identify the immediate need when I just feel bad sometimes.
I have had days I thought I might be around to write my books, write some music, share knowledge and experience with family members, and attend our youngest granddaughter’s high school graduation. She is in the third grade this 2019-20 year. I am not encouraged sometimes by the statistics. I realize I am mortal and was making plans in March for the end of this life, but I do not seek it. I seek to live fully in this life as a human being created by God to love and to be loved, for family and friends, for strangers that will become friends, to serve and to be served. I weep at the end of a good story. I tear up when I realize just how much I love my family and friends and how much they have shown their love for me. But then, I am still a heart patient with new possibilities and this new and alien existence with a bionic heart will allow me to experience and to know with confidence and faith that what comes next will come with great love. May you be blessed to know the same about your own life.
November and December 2019 Hopes and Expectations
November and the 2019 holidays are here. I have great memories of turkey, dressing, gravy, sweet potato casserole, green beam casseroles, and cranberry sauce. These holidays had all of that. I smoked a turkey and made gravy, smoked a ham, and cooked a pot roast. Starting about 6:00 pm on Wednesday, Thanksgiving Eve 2019, we had food for the table. In the following days we eat always eat leftovers. My grandsons -- Mason, Seth-- and I created a Thanksgiving Pizza many years ago and you might be surprised to find that pizza crust takes turkey and dressing, gravy and cranberry sauce to a new level. We added pineapple this year because the cranberry sauce was gone.
The week prior to Thanksgiving, Judy and I took out the fence in front of our house. It a wire and barbed wire fence built to keep out critters or keep some in. We plan to build a rustic fence and plant roses and wisteria. We hope to plant more fruit trees in January or February. I have started preparing a third garden location in the barnyard behind our house, but will need to fence it due to the fact that we keep talking about having goats again. I put sandy loam on our other two garden spots. The ground is good for gardens, but this "black gumbo" and clay dry out and bake hard very quickly. We will add compost. Nearly everything organic from our kitchen goes into compost. We have had great gardens in the past and hope medical interruptions will not prevent that in 2020 as they did in 2019. We like fresh produce from the garden and we had an abundance of blackberries along the north, front fence, but would like to get some grapes that are as prolific. Our strawberries produced a little, but our lawn guys ran the Weedeater through our raised bed. We are about ready to give up on raising blueberries.
We love to have company and guests, family and friends, and we find making new friends a delightful experience. Give us a call and drop by if you are hungry, thirsty, lonely, or just want to say "Hi." If you need a place to spend a night or two, we have spare bedrooms, if you don't mind the stairs. Do not expect our house to be spotless or neat. We do what we can, but we have daily medical routines (morning and evening before bedtime), and we prefer to be outdoors when we can. I like working my little Kubota tractor and it makes me feel better physically and emotionally. My little projects take a lot more time than they once did.
I “graduated” from cardiac rehab on December 6, 2019, but still “have a long way to go.” If I had not had to endure the setback of the staph infection in August that left me mostly homebound or in weakened recover through October, I might already be bicycling, fishing, and doing much more. As of the first week of August, that seemed to be possible. By the second week of September I was not sure whether I would recover. As of today, I am getting stronger, have projects, am cooking again, and my muscles are sore from rehab and working in the yard. I have to rest often, but tend to rest too much instead of being up and around as I am able. I know my biggest hurdle right now is the temptation to simply give up. I am not so tolerable of the cold and wet weather, more willing to quit tasks more quickly. I am grumpy, irritable, and restless. Many days seem that Judy is last saint standing as she puts up with me (and sometimes me with her). Friends seem reluctant to visit and most of our traveling is to doctor appointments. Otherwise, we don’t travel much except to get groceries or project materials, but we seem to be gone somewhere nearly every day.
I still feel greatly blessed to have experienced family and friends as I have, but more recently, to have gotten to know, however briefly, so many doctors and nurses and other care givers who are called to be of service, to be part of the healing that God initiates, and to be part of our journey from the vitality of this life to the vitality of love itself.