Dispatches from the Heart

by Ed Innerarity

  Abbye was a beautiful and special young lady, the same age as one of my daughters, not even thirty years old. Her dad and I had worked together at a now defunct bank thirty years earlier. I would see him around town, and we actually had office space in the same building, but we had very little in common.

  Out of the blue one day, he pulled me aside to tell me about his daughter’s recent medical diagnosis. I listened intently as he told me her story, so much like mine. Since I was fully compensated and able to function even with significantly reduced heart function, I rarely shared my story beyond my closest friends. So I naturally assumed her dad had learned of what I had and told me about Abbye for that reason. It turns out that her dad did not know I was walking the same path as Abbye. For reasons I would never learn, he just felt the need to tell me about his daughter.

  Abbye also had cardiomyopathy. And like me, it developed into acute congestive heart failure. And like me, her best and only option was a heart transplant. But unlike me, her cardiomyopathy and subsequent congestive heart failure progressed very rapidly. Too late, Abbye received the transplant but suffered from bilateral strokes. She lived a heartbreaking, gut-wrenching, soul-consuming two years before passing on. She is now whole, restored, and made perfect again. I was going to die an ugly death within a few months without a transplant. But seeing what happened to Abbye made me fear that even if I somehow qualified for the transplant list, I might be exchanging one set of problems for another.

  “Death is no more than passing from one room into another.

  But there’s a difference for me, you know. Because in that other room, I shall be able to see.”

  —HELEN KELLER

  I remember clearly that as soon as my appointment with Dr. Cishek was over, I called to cancel my appointments with my cardiologist and my electrophysiologist. Not much point in having them tell me yet again that I was getting worse. I got into my car and drove north to our farm in Parker County. I had told Paige that after all my appointments, I would drive back to Midland, but I could not.

  That night, I had dinner with our middle child, Rebecca, who lives at the farm and has her horse operation there. I asked her what she would do. We talked about the worst that might happen and decided that for me, it was not dying but having a stroke or other complications. I could not help but think of Abbye and every failed transplant story.

  It was then that I decided to give the transplant plan a shot, guided by prayer and governed by quality of life. The whole family gathered that Easter weekend at the farm to celebrate the possibility of my making the transplant list. No guarantees, to be sure. Lots of hospital time and lots of uncomfortable tests just to make sure that I might be a worthy and suitable steward for a donated heart. Then possibly would come a transplant operation with all that entails and then a long and potentially arduous recovery.

  Every family of a prospective transplant recipient faces problems and factors unique to that case. Those families’ hopes and fears are as important as they are different from mine. No words of mine are needed to validate the way any family approaches a possible transplant or the inevitable problems that come with that procedure. They are as unique as the hearts that are donated by the grieving families. As for me, I was also finally able to deal with the stroke issue. With Paige’s complete support, I decided that life after a devastating stroke would not be really living. If I did have a stroke, I would not be kept alive because of a medical directive to be bedridden and a burden to everyone. Nope, either I would live or I would die.

  After the weekend with my family, I returned to Midland for a few days to update my will and get my affairs in order. Barely a week after meeting Mary Beth Cishek, I was ready to turn my life over to her and the transplant team. I was about to embark on the greatest adventure of my life.

  Most of what follows are the emails I sent to my family and friends while being evaluated for possible listing on the transplant waiting list, while on the list hoping a matching heart would be found in time, and while recovering from the surgery. Many were written while I was in ICU before a procedure, during the transplant evaluation, or after a biopsy or other test.

  “They say you die twice. One time when you stop breathing and a second time, a bit later on, when someone says your name for the last time.”

  —BANKSY

  “Never believe that you know the last word about any human heart.”

  —HENRY JAMES

  Paige

  Greg Louganis, the incredible American diver who excelled at both springboard and platform diving, won forty-seven national and thirteen international championships, including four gold medals and one silver at the Olympics. Ed and I were watching a TV interview during the Montreal Olympics, and Greg was asked if platform diving was “like flying.” He smiled that beautiful smile and said, “No, it is falling, and it is terrifying.” I looked at Ed, and he said, “Yes! It is absolutely terrifying. I was scared every single time I was up there.”

  Now, Ed is the same guy I have watched do daredevil dives from cliffs into lakes and bridges into rivers, and flips off the one-meter board with one of our toddlers held to his chest. He has ridden dirt bikes over mountain passes on old mining roads, climbed mountains, taken his fishing boat down rivers that were risky, surfed and swum in dangerous currents, and gotten lost in the wilderness on solo backpack trips. The number of times he has gotten a hunting vehicle stuck or been broken down somewhere in a blizzard or ice storm is too many to count. In spite of the risks he took, and this is only a representative sampling, the children and I never really worried about him. Ed is very resourceful, incredibly self-reliant, and has a MacGyver-like talent for problem-solving. But even Superman has a weakness. Cardiomyopathy was Ed’s kryptonite.

  By Christmas 2014, Ed was falling off the cliff from a medical standpoint. All the drugs that had kept his cardiomyopathy at bay could no longer keep his heart pumping enough to sustain him. Walking across the room left him gasping for breath, he was having full-blown panic attacks because he was in pain and exhausted. Nights were terrible. He was terrified of not waking up while, at the same time, saying he wanted to die and “not have to hurt anymore and be so scared.” Ed and I had promised our Colorado daughters, Laura Paige and Sarah, that we would drive to Denver to celebrate Christmas there. It would be the first Christmas for our granddaughter, Eleanor, Laura Paige’s daughter. Sarah, our oldest daughter, and Cameron, her soon-to-be fiancé, would drive over Christmas Day from Glenwood Springs to be with everybody in Denver. Cameron got sick right before they left, so he didn’t make the trip. Cameron had the best Christmas of all of us, and he had the flu!

  Our stay in Denver was brief, which was fortunate. Ed was feeling worse every day. All I could think of was that we needed to get back to Texas—Austin, specifically, where his doctors were. Surely, there was something that could be done to kick-start his cardiovascular system, his ability to breathe? I had not yet learned that heart disease can be managed beautifully for years, until the day arrives when everything goes terribly wrong.

  Before Ed even was aware that he had cardiomyopathy, his lifestyle was what all cardiologists want for their patients: he didn’t smoke, he didn’t drink, he exercised faithfully. These were conscious choices, which he made from a very young age. Having polio as a child and being physically weak, he worked to build up his strength and stamina. Being a competitive swimmer and diver, he encountered elite athletes, such as Keith Russell, who inspired him and instilled in him the desire to treat his body respectfully, as a gift from God. Not many thirteen-year-old boys carry through the lifetime habits that Ed had cultivated. The fact that he did make these choices, and had the tenacity of a bull terrier, meant he was the ultimate underdog/overachiever.

  No wonder it was such a sobering and truly unbelievable fact for our friends, family, and me to accept that Ed, virtually within a few days, could not walk five yards without gasping for breath. I cannot imagine anything more terrifying than being unable to draw a full breath
, to feel the same sort of panic one feels being held underwater and only allowed little sips of air before being forced to submerge again.

  We headed to Austin as soon as we could schedule appointments. In early December, a procedure to “shock” Ed’s heart back into a normal rhythm worked, but his heart was increasingly overburdened by its inability to pump efficiently, which led to fluid collecting around his lungs, which led to more problems breathing.

  A new pacemaker, with all the latest bells and whistles, was installed but to no avail. Having the electrophysiologist, Dr. Javier Sanchez, whom we had known for six years, say to me after the surgery, “The next two weeks will make it apparent if it is going to help, but, Paige, I am not optimistic,” left me dazed and distraught. So I gave my emotions free rein, cried in the blessedly empty waiting room for twenty minutes, and then washed my face and composed myself before Ed was out of recovery. This could not be happening! Were we really at the end of the line?

  A procedure was done a couple of times over about a two-month period. I would sit next to the examining table where Ed was perched and watch the tech administer a local anesthetic with a tiny needle into Ed’s back and then stick a large hollow needle through to siphon off straw-colored fluid. The men and women who did this procedure were unfailingly kind, gentle, and very good at their job. We had wonderful conversations with them, about their work, about their lives and ours. We had questions, we had concerns. We were on a quest to obtain as much information as we could from the folks who were on the front lines in the battle to restore Ed’s health.

  With very few exceptions, the medical folks we encountered were patient, knowledgeable, and willing to educate us. To this day, we are so grateful for this knowledge exchange. It kept us focused, it allayed our fears, and it helped us to be realistic as the weeks and months continued to prove that Ed’s heart was not going to sustain his life. I have to give Ed a great deal of credit for his attitude during the fluid-drawing procedure. For a man who had developed a fear of needles from being poked for blood draws and IVs daily when he was a tiny boy with polio, Ed took this procedure amazingly well. The first time this fluid was drained, it filled a bottle to the one-liter mark. Only a few weeks later, two liters of fluid were siphoned from around Ed’s lungs. Sadly, the progression of Ed’s heart disease was picking up steam.

  It was not long after that, maybe three weeks, when David Terreson had “The Talk” with Ed.

  Being Ed’s cardiologist, fishing buddy, and close friend (not necessarily in that order) gave David insight and access to Ed’s thoughts and feelings on a deeper level than was usual in the relationship between a doctor and his patient. Of course, I do not want to discount Dr. Terreson’s ability to relate to all his patients, because he has a wonderful ability to communicate that cannot be overstated. The fact was that Dr. Terreson needed every advantage to convince Ed to take a step, actually a leap, in treatment. Gently, solemnly, David told my husband that there was nothing else he could do for him. “Ed, we have had a great run for eight years. You have been an awesome and compliant patient, doing everything you could to take care of yourself and your heart, but there is nothing else I can do for you. I really want to send you to see Dr. Mary Beth Cishek at Seton Transplant Center. I know you have always said you would not get a transplant under any conditions. Please, just make an appointment to see her. She might have some ideas of medications that I’m not aware of, or procedures that can help you. Just go talk to her.”

  What could Ed say? Despite having no intention whatsoever of even considering a transplant, Ed agreed to see Dr. Cishek. In numerous conversations with our children; my brother, Jim; my sister, Caroline; his closest friends; and with me, Ed had repeatedly and unequivocally stated that he would not put himself or his family through a transplant. He believed, and rightly so, that his life had been richly blessed, full of adventures, challenges, and triumphs. He knew of no other person who had as few regrets or as many wonderful experiences. The inherent risks, assuming he even lived long enough to receive a new heart, terrified him. The very real possibility of being mentally and physically incapacitated after the surgery was not a chance he was willing to take, for himself or his loved ones. End. Of. Discussion. This was a debate with no rebuttal.

  All of us who loved Ed knew that this was a decision that was his alone. There were no guarantees, no statistics that would support any argument. Everything that he thought, every fact supported his thesis. If he was not willing to go through the transplant process, which, honestly, no one knew if he would even be accepted to attempt, that was his decision. Life, at this point, was rapidly losing its quality. The possibility of life and the certainty of death, the ability to choose rested in his hands and his alone. We all loved and respected Ed too much to do anything but honor his choice. His heart might be worn out and failing him, but we would be with him, regardless of our grief and his choice. Of course, this was before Ed’s appointment with Dr. Mary Beth Cishek. No one could have predicted how that would turn out.

  It was the Tuesday before Easter. Our daughter Rebecca has a horse farm near Weatherford, Texas. Our other daughters, future son-in-law, and granddaughter were all meeting there for another attempt at a happy holiday gathering after the Christmas debacle in Denver. We were determined to make this a joyous, spiritual time for Ed’s sake, for baby Eleanor’s sake, and for all of us. It was to be a celebration of life, of faith, of family, regardless of the circumstances we were facing. Ed was in Austin, seeing Dr. Cishek for what I assumed would be one appointment only. I stayed in Midland to pack up clothes, food, boxes of diapers, a car seat, a pack-and-play, and so on. Ed would meet me at the farm the following afternoon after an appointment with David Terreson. I was hopeful that we could all be together and celebrate Easter. It was 1:30 p.m., and I had just left my Tuesday Bible study when my phone rang as I got in the car. I saw that it was Ed. “Hey, Ed, how was your appointment?”

  Ed: (in a very subdued voice) “Uh, well, I am still here. I am with Dr. Cishek. She wants to talk to you.”

  Me: “Oh, OK, did you explain why I wasn’t with you? That I was scrambling to get everything together for the weekend?”

  Ed: “Oh, yes, I did. She understood perfectly. Paige, did you know I am dying?”

  Me: “Well, yes, Ed, I did know that.”

  Ed: “Really? How did you know? Who else knows? Did you know I will be dead by Christmas if I don’t get a heart transplant?”

  Me: “Let’s see . . . the children all know. Caroline and Jim know. Mary Beth [different Mary Beth—our practically family friend and minister] and Jeff [the different Mary Beth’s husband, our lawyer, and ditto in the friendship category] know. David Koch knows, and Barbara, because you and I told them. Ed, I did not know a specific time line, but I am not surprised at Dr. Cishek’s prognosis. Are you surprised?”

  Ed: “I guess I am surprised it is so soon. Dr. Cishek says I have two choices. I can be evaluated to see if I am a candidate for a transplant, or I can go into palliative care. Do you know what that is?”

  Me: “Hospice.”

  Ed: “Yes. Hospice. There is nothing to be done for me unless I get a new heart. No medicine, no therapy, no procedure. This is it. She wants to talk to you.”

  Dr. Cishek: “Mrs. Innerarity, were you aware that your husband is dying? He is dragging himself through life.”

  Me: “Yes, Dr. Cishek. Please call me Paige. Our whole family is painfully aware he is dying. He has been told by Dr. Sanchez and Dr. Terreson that there is nothing else they can do for him. For some reason, it did not seem to register until he saw you that he really is dying.”

  Dr. Cishek: “Paige, if I had my way, I would admit him to the hospital right now. He is in terrible shape, and there is no time to waste. He needs to be evaluated for the transplant program, which takes a week, at least. There are no guarantees he will even qualify for the program, but we need to see and try to get him on the transplant list as soon as possible. I understand you are spending Easter a
t the farm with your children. This will give you all a chance to talk about this decision. I want him back here as soon as you both can be here, for an indefinite stay. I will let you speak with Ed.”

  Ed: “Soooo . . . that was Dr. Cishek. I will call you after I leave here.”

  Me: “Ed, are you going to get evaluated for a heart transplant?”

  Ed: “Yes, I am. I don’t want to be dead by Christmas. I will call you in a bit. Love you.”

  Sometimes, it just takes the right messenger delivering the news. I bless Mary Beth Cishek from the top of her head to the soles of her feet every single day for being that messenger. She delivered the news of Ed’s imminent demise with an authority and candor that was akin to being smacked with a two-by-four. He heard her, loud and clear. The “Sweet By and By” now had a date attached to it, and Ed was not ready to “go quietly into that good night.” Hallelujah and pass the ammunition! Ed was in for the fight of his life, the adventure to top anything he had experienced in a lifetime of amazing adventures and blessings beyond either of our wildest imaginings.

  It was the best Easter our family has ever had.

  But, after Easter, there was a tremendous shift in our lives. Once Ed had committed to being evaluated as a transplant candidate, our whole family pushed all our chips to the center of the poker table. We were “all-in,” individually and collectively. Our friends added their emotional and spiritual collateral, and our stack of chips grew. Even though we had yet to meet the medical professionals who would become an integral part of Ed’s and my life, they were already on board, whether they knew it or not. Transplant professionals, at least the ones we know, are engaged one-hundred-percent with taking care of patients. The doctors, nurses, technicians, physical therapists, psychologists, social workers, pharmacists, and everyone else who streamed into our lives gave their attention, considerable training, and expertise to helping Ed stay alive long enough to receive a heart. Little did we know that many of these folks would become a permanent part of our lives. The bonds formed are unbreakable, because our appreciation is profound.