Dispatches from the Heart

by Ed Innerarity

  The race against time that is the cornerstone of cardiomyopathy began when Ed walked into Seton Hospital for a week of testing. The relationships with fellow patients, their families, and health-care providers are forever. Ed and I learned that putting our trust in the hands of others to save his life was required. At the same time, we were not willing to count on strangers to be caregivers; we just are not “wired” that way. Strangers became acquaintances and, in many cases, have become our friends.

  The emails and narrative Ed and I have cobbled together is a scrapbook of sorts. It includes some medical information and lots of stories and anecdotes that helped us cope as we navigated heart disease: the fears, the questions, the tender mercies, and the miracles of every day as a transplant patient. Our hope and prayer is that those who are still experiencing The Waiting are not doing so in vain. Organ donation is so simple, so beautiful, so critical to saving lives. If you get nothing else from flipping through these pages, our goal is accomplished: Be a good steward of this one life you have, and pass it on through organ donation.

  “If we were logical, the future would be bleak indeed.

  But we are more than logical. We are human beings,

  and we have faith, and we have hope, and we can work.”

  —JACQUES COUSTEAU

  PART 1

  Landslide

  “I don’t know where I’m going, but I’m on my way.”

  —CARL SANDBURG

  Heraclitus of Ephesus lived awhile back, around 500 BC, according to those who study ancient philosophers. He is called “the dark philosopher” because his writings are considered to be difficult to understand. My research also revealed that Heraclitus had a very high opinion of his own work, considering himself to be the only philosopher of his time. He is best known for stating, “The only constant in life is change.” Now, I may not have been the deepest thinker in my high school History of Western Civilization class, but that concept has stuck with me throughout my life and empirically proven itself.

  When Ed decided he wanted to be evaluated for the transplant program, our life changed immediately. I drove home from Bible study, parked my car in the garage, put on my old straw hat and walking shoes, and headed out for a walk through the neighborhood. Walking is the way I center myself and clear my mind. I know yoga is supposed to put one in a meditative state, but try as I might, as I crouch in a child’s pose or creakily assume downward dog, I have never achieved anything but a state involving making lists, wondering how much longer I have to do this pose, and debating if I have time to pick up the dry cleaning after class. Perhaps I have a bad attitude, but walking calms me. It allows me to let go of my cares, and the chattering of my brain disappears. Ideally, the walk involves mountains and a creek or river alongside the trail. In a pinch, any sidewalk will suffice. After an hour walking the neighborhood, I was ready to jump into the changes and transitions that were approaching like an avalanche. Thank goodness I was blissfully unaware of how drastic those changes would be.

  I have always considered myself to be pretty adaptable in the face of change. Like most people, I have faced adversity at various stages in my life. Physical challenges after a wreck that left my body broken and led to twelve surgeries in two years was pretty daunting. I was blessed to have had great medical care and amazing friends and family to put me back together, physically and emotionally. I grew spiritually and have never felt more loved and connected to my Creator, but this was not the landslide I experienced watching Ed face a future that was fraught with peril. It is always easier to go through dangerous waters than to watch someone you love suffer and struggle. As the Fleetwood Mac song said, I had built my life around someone, and seeing the changes that were coming forced me to be bolder—whether I was ready or not. We both needed to let the child in our heart, who had faith, help us rise above the fear and move forward.

  The first change we faced was a week of tests and interviews at Seton to see if Ed qualified for a transplant. Ed had the tests and procedures; we both had the interviews. My amazing sister, Caroline, showed up the fourth day and stayed until Ed received the news that he was on the list. By then, another change had occurred. My childhood friend, Francie Little, who is a real estate broker in Austin, helped me locate a furnished apartment one block from the hospital. I signed the month-to-month lease before Ed was even released from his weeklong evaluation. We moved in the next day. Our new life had begun.

  That new life became centered around preparing Ed to become the best possible recipient and steward of his new heart. We could not allow ourselves to dwell too much on the only other possibility, but it was always lurking, unbidden and unwelcome, in the back of our minds. I believe all potential organ recipients are cognizant of the race they are running. It is a race against terrible odds. The clock is ticking relentlessly as the warranty is running out on one or more organs. Prospective recipients work incessantly to keep their bodies going long enough for an organ donation. Family and friends are praying, exhorting, and cheering from the sidelines, but it is a lonely race, no matter how encouraging the fans try to be. Being scrutinized daily by doctors, nurses, physical therapists, and family is nerve-racking and exhausting. Looking back, and knowing Ed’s desire for peace, privacy, and normalcy, I cannot believe how well he coped. He had gone from living a very independent life to being hooked up to a milrinone infusion pump twenty-four seven in a tiny apartment, with me in his face almost every minute of the day. Of course, he had breaks from me when he rode his bike to the hospital to be questioned, poked, prodded, and evaluated at physical therapy. Yes, our life had changed dramatically.

  Milrinone: A drug used for the short-term treatment of heart failure. It works by making your heart beat stronger and by dilating certain blood vessels so that the amount of blood that is pumped from the heart is increased. This effect may help with symptoms of heart failure.

  Perhaps the most unexpected change was our desire to withdraw from most social interaction. For us, it seemed that every day involved hospital appointments, phone calls, and time spent learning more information relating to new prescriptions, new therapies, and changes in Ed’s treatment. Communicating with all of the wonderful people who loved us was virtually impossible and, frankly, would have been emotionally exhausting. The idea for the emails was born out of necessity, as emotional and physical collateral were in very short supply. It was cathartic for Ed to write his thoughts about the changes in his life, and I enjoyed writing my perspective as well. This became a way for us to keep in touch while withdrawing, temporarily, from our tribe. Honestly, we were on a quest that required leaving our people and concentrating on a goal. Ed was the Lone Ranger and I was Tonto.

  As Ed worked to stay alive long enough to get a heart, I worked, not terribly successfully, to find something he could eat. For some reason that was never really determined, all food tasted terrible. Ed had a horrific taste in his mouth, possibly related to medication or to physiological changes occurring as his body fought to keep going; we never knew for sure. Food was a huge problem. I have always prided myself on preparing nutritious and tasty meals, and Ed has always had a great appetite and appreciated my efforts in the kitchen. No matter what I cooked, no matter what he ordered in restaurants, he had no appetite, and everything had a metallic taste. Dr. Cishek brought a sack full of liquid nutritional supplements to the hospital the last day of Ed’s evaluation for him to sample. None of them were palatable. Finally, through trial and error, I found one he could choke down. He would drink three to four of them a day, eat as much as he could (which was not too much), and continue to lose weight. Ed normally weighs 170 pounds; by the day of his transplant, he weighed 145 pounds. Less than what he weighed going into college. To me, it was a frightening change in my normally robust and fit six-foot husband.

  Adapting to change is essential if we don’t want to go the way of the dinosaur. Being flexible or altering the course in the midst of life’s turbulence demands attention to detail, intuition, ability to rethi
nk and reorder priorities, sensitivity to changing surroundings, and more than a little luck. We know we have been incredibly fortunate in every measure of life’s circumstances. Through a series of events, we ended up in Austin, at Seton Transplant Center. The people encountered leading up to Ed’s decision to be evaluated as a transplant candidate were the perfect people to lead him to that decision. Our friends and family who supported us during the seemingly endless changes leading up to the transplant were exactly who we needed. Change is difficult, uncertainty is uncomfortable, and both must be confronted by everyone who draws breath. We are humbled and amazed by the guidance, divine and mortal, that we received as we faced constant change.

  “I’d just as soon kiss a Wookiee.”

  —PRINCESS LEIA

  From: Ed Innerarity

  Sent: Wednesday, April 8, 2015 9:22 PM

  Subject: DAY ONE

  Dear Angels and Armorers,

  Somewhere in the Bible, there is listed all the armor of God we are to wear: the belt of truth, the gospel of peace, the shield of faith, the helmet of salvation, and the sword of the Spirit. In your own way, I believe that each of you, and others, has handed me the various pieces of that armor, plus I like the analogy of getting ready for battle, because I am in for the fight of my life. With no guarantees about the outcome, only faith that I fight the best battle possible.

  That being said, I may simply refer to you as my Armorers.

  We got a call first this a.m. asking for us to come a day early, so we drove like mad and got to the Seton Heart Institute about 2:30. I was immediately whisked to the back for multiple blood draws coming out of both arms. My BP was too low to fill all 19 Gatorade bottles so they were squeezing my arms and having me pump my fists. Half an hour later, Erin had his blood and the tests began. Test #1, what is my blood type; pretty much a big deal statistically in improving my odds. I will be tested for blood type on more than one occasion with different labs doing independent reports. The next two hours were full of intense counsel and innumerable releases all with a lengthy explanation of risk. Had Paige not been with me, I am not sure I would have been able to remain upright. I was fighting a major anxiety attack and losing badly. By the time it was over, I was unexplainably cold, shaking uncontrollably, and barely able to speak. We finally made it to the hotel and headed off to dinner. I am sorry to report the panic attack was just getting going, but we finally made it to the room and I took a hot shower that lasted so long, the Comanche Peak Nuclear Power Plant in Glen Rose was working overtime.

  Much better now and ready for tomorrow which includes sunrise surgery to insert a narrow and fairly clean, flexible coat hanger into my vein in my neck, swing south below the heart then mosey back over to the right side of the heart to say “hello, how ya’ doing?” That stays in for a couple of days while I get the royal spa treatment in ICU.

  DAY ONE SCORE: Seton Heart Institute 21, Ed 3

  I avoided the shut out today with a late field goal only because they really like Paige, and I otherwise fit the profile for a good transplant recipient: not overweight, never smoked, not diabetic, about the right size, likely to do all the post-op stuff. Fracking and golfing were not held against me.

  There is still no guarantee that I will make the list, where I might be placed on the list, or if a suitable heart will be found in time, which gets me back to the shield of faith.

  May be off the grid for a couple of days while in ICU.

  Still plenty of time to narrow the score.

  ed

  From: Rebecca Innerarity

  Sent: Wednesday, April 8, 2015 9:31 PM

  Subject: Re: DAY ONE

  “Because he loves me,” says the Lord. “I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.”

  —Psalm 91:14-15

  From: Sarah Innerarity

  Sent: Wednesday, April 8, 2015 9:41 PM

  Subject: Re: DAY ONE

  Praying & sending every bit of love, hope & strength your way!

  Get some rest tonight & I’m sure you’ll even the score over the next couple days & win in a tiebreaker in the third set with a ripping crosscourt forehand (even though those are two different sports).

  Many more fish to catch, sunsets to see, brownies to eat, and fun times to be had.

  Love you,

  Sass

  From: Paige Innerarity

  Sent: Wednesday, April 8, 2015 10:10 PM

  Subject: News from Austin

  Dear Precious Friends,

  Ed and I are finally settled at the hotel in Austin and have a very early wake-up call to be at Seton Heart Institute at 5:30. As all of you know, Ed’s cardiomyopathy took a dramatic turn on November 1st when he went into afib. I will not get into the gory details, but numerous trips to Austin since then, including several lengthy hospital stays and procedures, have not been successful in reversing the downward turn in his cardiac health. As David Terreson, Ed’s cardiologist and dear friend has said, Ed had incredible compensation for eight years, the best he has ever seen, but he has finally used up his hall pass and it is time for a new heart.

  We met with the congestive heart failure/cardiac staff today for two hours for a crash course in what to expect for the next 4–5 days. Ed will have a right heart catheterization tomorrow to measure his internal heart pressures, tweak IV meds, monitor how his heart responds to said meds, etc., etc., and so forth. He will spend at least one night in ICU, then be moved to the third floor for more tests. We should be leaving the hospital Monday or Tuesday. During this time, we will be meeting with thoracic surgeons, a psychologist, pulmonary specialist, social worker, and the five people we spent the afternoon with in Mary Beth’s office. Oh! Mary Beth is the doctor in charge of Ed for the rest of his life, and she is amazing. So, with two Mary Beths helping us sort out the spiritual and physical aspects of our lives, we should be in good hands.

  Honestly, this is all completely overwhelming. I am closing with very specific prayer requests.

  Pray that Ed passes all the tests to be accepted on the transplant list. This is not a slam-dunk. He needs to meet very specific criteria to be considered for the list, and then voted onto the list by the doctors and staff who are involved in the program. The meeting and the vote take place on Wednesday.

  Pray for a spot near the top of the list. Time is of the essence. Fifty percent of patients on the transplant list do not live long enough to receive a heart.

  Pray for Ed to have peace, a calm spirit, and a positive attitude. His body and emotions have taken a terrible battering since November 1st. He is the finest and bravest man I have ever known, and I hate to watch the toll this is taking.

  Pray for our family. Our children have all stepped up in a mighty way and I could not be more grateful for the part each one has played in supporting and loving us. Sarah, Rebecca, Laura Paige, Brian, and Baron have been amazing, and I love them more than I can ever say. My sister, Caroline, my brother, Jim, and their families keep us in the fight.

  Pray for the doctors, nurses, technicians, and everyone else at Seton who will be taking care of my darling Ed. Everyone we have met exhibits professionalism and concern. We are grateful to them all. I would be remiss if I did not mention the love, friendship, and incredible care Ed has received from David Terreson and Javier Sanchez over the last eight years. They are extraordinary cardiologists and exemplify the very best of what medicine should be.

  Thank you for loving us. We love you all for standing in the gap for us.

  Love and Grace,

  Paige

  From: Ed Innerarity

  Sent: Thursday, April 9, 2015 10:07 PM

  Subject: DAY TWO

  “How did it get so late so soon?”

  —DR. SEUSS

  Today started at 4:30 a.m. in order to be at the hospital at 5:30 a.m. for the fun to begin. Admitted and moved into pre-op in military fashion. I had the really cl
ean coat hanger inserted in my neck to check pressures on the right side of my heart. BUT, not before the ports were inserted and more blood was spilled than at Bull Run. I was kept awake during the procedure to ensure the most accurate reading possible. I was draped and face covered but could hear the team at work. The coat hanger has a pressure-measuring device at the end, which was inserted 61 cm into scared & shaking Eddie. The goal was to have that pressure-measuring device located right in the pulmonary artery. As far as I could tell, it was in there just right, so I was taken by gurney to ICU. Little did I know that breezy, dopey ride on the gurney would be one of the three highlights of my day.

  Wasting not one minute, blood was drawn six different times to test for everything I have ever heard of. If I had ever traveled to Arkansas, one of the tests showed that. Details of post-polio syndrome and my lung health were examined in great detail including a fresh chest x-ray. Probable fluid there will be dealt with later. Faxes were traded with my dentist and primary care doctor. Any test, vaccine, or immunization that was not current or verifiable will be repeated. TB test next. Then clot buster shots into the belly for good measure.

  A quick walk around the hall to make sure the hospital gown is in fact two sizes too small. A hearty breakfast at 10:30 a.m. A colonoscopy was added to the list for day after tomorrow, so I am out for golf on Saturday. Detailed interview with the pulmonologist. All going well so far; nothing particularly fun but I am passing the various hurdles and have not been disqualified by anything yet. An oxygen artery test turned out to eat my lunch. The unhappy pain face on the wall was beginning to look like me. Then, I am told the right arm did not work so we needed to try the other arm “if I didn’t mind.” Happy to accommodate except that I had torn holes in the sheet and mattress “remaining calm and relaxed.” I earned no points by comparing the pain to natural childbirth.