Since just before I went on the transplant list, all of you have indulged me in writing these “updates.” Sure, a small part of these really were updates, but mostly they were my best outlet. A way to hurt in front of you, bleed in front of you, and cry in front of you when I couldn’t hold it all in. I used all of you as my escape from the fear and the pain. Basically a coward about the medical stuff, I chose the easy way out. I made fun of something serious, I brought you along when I could not face bad news alone, I vented about things none of us have any control over. The journey of a heart transplant recipient and associated medical adventures will last the rest of my life. Just as my biopsies are coming less often, so will these emails. Each of you was so supportive, but time for me to resume “my normal life.” Time to turn our thoughts and prayers to others in need. However, if something funny comes up, I will likely share that.
I remember the look on the faces of my family and friends during the really bad days last spring. I was dying and you could read that on their worried and troubled faces. That is why this weekend was so special. But in the same way, I wish I could have brought all of you with us. And all those who prayed for us, many of whom I will never meet. I made it because of all of you. Like I said before, somehow saying thanks just doesn’t quite cover it.
Please don’t wake up some day and feel like you wasted opportunities along the way.
Live well, like it might be your last birthday.
ed
About the music: “Wasted on the Way” was one of the last big hits by CSN and came out in the early ’80s. It is one of the few songs I did not make the girls listen to because at the time, I did not understand what the message really was. FYI, David Crosby sings vocals and plays acoustic guitar on this song. A talented musician, he was a member of the Byrds before CSN. Crosby had numerous personal demons and in 1994, he received a liver transplant.
[Song #12. Attached to this email was a link to “Wasted on the Way” by Crosby, Stills & Nash.]
From: Bridget Hyde
Sent: Sunday, November 8, 2015 9:40 PM
Subject: Re: SURPRISE BIRTHDAY
Dear Ed,
I listened to the CSN music before reading your letter and it definitely set the tone. It is astounding to hear that Crosby also found a revived life through organ donation. My heart is truly gladdened by the fun pictures of the gathering around you, and the celebration that shows in each smile. Bravo! All of you are grand to give back in love and joy, and teach the rest of us more and more about the blessings in each moment.
Thank you for sharing the miracle.
Many happy returns to you of sunsets and baby giggles and long tables completely filled with those you love. You are helping me remember that in every day there is birth. Thank you!
With hope,
Bridget
From: Ed Innerarity
Sent: Sunday, November 8, 2015 9:01 PM
To: My golf group
Subject: BIRTHDAY TRIP BONUS
Guys,
In celebration of my b’day and everything else, we brought the whole clan to the Biltmore in Arizona. Knowing I would not have time to play golf, I did not bring my clubs.
The second day here I noticed something going on at the golf course. It was the Fiesta Bowl hole-in-one contest. The closest shot to the pin each of the next seven days or any hole(s) in one goes to the finals next Sunday for a shot at $1MM. Wells Fargo was the big sponsor.
I had to try. So when everyone was resting I went over to give it a shot. They had some Ping [golf club] demos so I was ready. I signed up and waited my turn. The “golfers” hit off AstroTurf on a raised platform with room for 20 golfers at a time. They had 10 spotters behind a wall up by the green. Any ball that bounced off another ball and went in did not count. If someone hit one close, play was stopped and a measurement was taken. At the same time, they raked the green clean. If there was a hole in one, play was stopped, the ball retrieved, and the golfer station number was announced. Hitting into a clean green, that golfer hit a validation ball to serve as a tiebreaker.
When they called for a halt because of a hole in one this morning, I did not know it was mine, although I already had a 3'3" shot and another that was 1'1". I was the closest to the flag at that point. Other guys had close ones too. Then they called out #17. By the time the green was cleared off and they brought me the ball, I was in no shape to hit a validation ball. I think I missed the green. But it did not matter; I was automatically in the finals next Sunday for the $1MM try. All holes-in-one advance, or if none that day, whoever was closest. I think they said I had the only one today, but yesterday they had two or three when the flag was up front. Those 8–10 guys get one try each for the big money. There are also other day prizes. I got a new set of Ping irons and some other stuff. The winner and the closest five get to go to the Fiesta Bowl. I don’t think Texas will be there this year. At the game they give the winner a check the size and shape of South Dakota.
The pin was 128 yards away and I hit a Ping wedge from the demo bag. I win $5 from each of you, less the $6 I still owe Grant. Lots of fun. Nice to be back in the game again.
ed
From: Paige Innerarity
Sent: Tuesday, December 1, 2015
Subject: Choices and Chance
One of the surprises for Ed’s birthday weekend was a beautiful book that our daughter Laura Paige compiled and edited of letters, memories, and pictures from some of our family and friends. It is a treasure. Some memories are poignant, some are very funny, all are important because they were written with intention. I told the children that Ed must feel like Tom Sawyer when he attended his own funeral and realized how many people cared about him! I don’t think it is appropriate for me to share the thoughts and stories of others without their “express written permission” so I am just sending what I wrote.
Choices and Chance
Sometimes, our lives seem so random, so utterly ruled by chance. Other times, we seem to be walking a path that was mapped for us since birth. I have never subscribed to the theory that life is a series of accidents, coincidences, and luck. My faith gives me the certainty that I am here for a specific purpose, that my decisions and choices are important. Because I believe that to be true for myself, I believe the same holds true for everyone. Nowhere, in no life, have I seen that as clearly as I see it in your life, Ed.
You have been preparing your entire life to receive this precious gift of a new heart. From having polio, and overcoming it as a small boy, you have been preparing to face the incredible obstacles of heart disease and a second chance at life. You recovered from polio, you became a highly ranked junior swimmer and diver, you played Division 1 tennis—none of these things are likely for the healthiest of men. You fought through incredible odds to achieve on the tennis courts and won matches you should have never won. You used your mind and will to defeat players who were definitely superior. You found a way. You always found a way.
We were married at an absurdly young age. We grew up together and overcame adversities on most every front. We were too young, we were financially strapped, we both had emotional baggage and psychological scars, we had years of schooling to get through. Well, we were also fiercely determined to take care of each other, to build a life together, to love each other and the beautiful children we were blessed to have in our lives. We were also blessed with incredible role models who taught us by example how to navigate this life. Always, we had examples, good and bad, of how to survive and how to thrive. We watched, we studied, and we learned. I pray we are still learning, because this life takes no prisoners and we are not through yet.
November 1, 2014, was a game-changer for us all. The elevator started down the shaft and it appeared that the brake was gone. The months that followed were a blur of hospital visits, decisions, forms, more decisions, more hospital visits, tears, fears, and confusion. Through it all, we prayed, we cried, we laughed, we talked, we raged against the darkness, and we prayed some more. We leaned on God; we l
eaned on our friends, our children, and each other. Just when we reached the breaking point, hope would knock on the door, faith would smash through a window, and despair would beat a hasty retreat just long enough for us to breathe. Grace would be more than sufficient; it would fill us up with a sense of wonder and peace that was inexplicable. We were surrounded by angels and we knew it. We were exactly where we were supposed to be and we accepted it. It was an adventure we were privileged to experience, no matter the outcome, no matter the cost, because no matter what happened, we had already won.
This life, your life, has unfolded according to divine design and plan. I am so blessed and so unendingly grateful to have been chosen to share this crazy roller-coaster existence with you. Against all odds, you are not just still standing, but are flourishing. I cannot wait to see what happens next, my darling Ed.
All my love, always and forever,
Paige
LISA MINK: TRANSPLANT NURSE (BY ED)
In Colorado when you buy a pickup, a dog is included. When you qualify for the heart transplant list, a transplant nurse is assigned to you. He or she is with you the whole way, either way. I like to say that I was lucky enough to get a new heart, luckier still to be assigned to Lisa Mink.
I met Lisa on the day I was accepted into the transplant evaluation program. Less than two minutes after first laying eyes on her, serious quantities of blood were being drawn. Before the first vial with the tiny blue label was full, Lisa knew she had a problem. Ed was “one of those”! Heck, he can barely let us draw blood; what’s he going to do when we do something actually serious?
Ninety-three days later, it was Lisa who called to say that a matching heart had been found. Ninety-three days. Seemed like an eternity to us; must have seemed like a life sentence to her. At first I used to say that I was her only patient, because she made me feel that way. As time went on, at rehab, clinic, and support group meetings, I met some of her other charges. When they spoke of her, I could see in their eyes a glimmer of hope peeking through overwhelming doubt. In their voices I could almost hear Lisa explaining why they felt this way or what the medicine would do or what was likely to happen next. Delivering pessimistic forecasts wins few followers; being overly hopeful is to bet against the house. We all read the same booklet. We knew that half of us would die before a good used heart arrived. We knew that one in eight would not survive the surgery even if a matching heart was found in time. We were painfully aware of the risk of stroke, infection, and acute rejection and that the luckiest of the lot would have a lifetime of spooky meds and uncertain life expectancies. Lisa found a way to make the pending minefield seem more like an achievement test.
After I got my new heart, a series of biopsies were to follow. I will not pretend I was brave and dignified. I was neither. The first four were weekly; the next eight were every other week, then monthly, and so on. A total of sixteen in the first year. These bothered me so much that within a day of finishing one, I began to fret and fear the next one. Lisa tried everything: IV sedative to take the edge off, but my veins were still bruised, burst, or already full of holes. OK, let’s try an injection for the mild sedation just as they wheel me into the cath lab. A quick shot in the hip and the sedative wears off in forty-five minutes; what could go wrong? Despite Lisa’s best efforts, within just a few minutes of my injection, both cath labs were taken over with serious emergencies that lasted several hours. By the time I was in the lab, the injection had long since worn off, and I was seriously dehydrated. Not a pleasant procedure, and Lisa felt worse than I did.
When I entered the evaluation program, I had barely six months to live. The medicine I began taking by infusion (through a semi-permanent port, administered via external pump that I carried 24/7) chemically forced my heart to beat stronger but reduced what time I had left by a third. I clearly remember being in clinic and Lisa explaining why my liver was enlarged, why I had a terrible taste in my mouth, why the back of my hands were turning black, why my skin was becoming covered with a rash, why I was losing bone and muscle, why my second pacemaker kept going off, why I couldn’t leave town, why my left nipple was getting enlarged, why I kept getting weaker, why I had fluid in my lungs, and why my weight kept going down. I got honest answers from someone who believed in me.
Privacy rules prevent us patients from being told about others, even others struggling in the same way we struggle. But without a word being said, I could read the sorrow in Lisa’s eyes when one of her patients was not going to make it. And when she found a good match for a worthy host, you could sense the joy in her eyes and in everyone else on the transplant floor.
Just a few weeks ago, I got to walk my daughter down the aisle at her wedding and take her hand and put it into the hand of a young man I really admire. Lisa Mink helped make that possible. Not sure just a thank-you note will do.
PART 4
Why Me, Lord?
“Tell me, what is it you plan to do with
your one wild and precious life?”
—MARY OLIVER, “THE SUMMER DAY”
No one is more surprised or delighted than I to be writing about Ed’s life two years and twelve days after he received the gift of a new heart. As with everyone who inhabits this world, lots has happened. We have had incredible joy and unspeakable sorrow, overcome tremendous challenges, and delighted in beautiful experiences. In short, just like the rest of humanity, we have lived.
I listen to the Garth Brooks channel on Sirius in my car. Besides enjoying the artists featured along with Garth’s songs, there are little anecdotes by Garth about music, his family, songwriting, and lessons learned along the way. He told about a sunrise horseback ride with two of his buddies one day in Oklahoma, just three guys enjoying the time together at a magical time of day. One of his buddies asked Garth if he knew the difference between mercy and grace. The friend then said (and I am paraphrasing here, but this is the gist of it) mercy is God not giving us what we deserve; grace is God giving us what we do not deserve.
When our youngest daughter, Laura Paige, was flying back to Denver three days after coming to Austin the day of Ed’s transplant, she was walking through the terminal at Austin Bergstrom Airport, pushing her one-year-old daughter in a stroller. “The Live Music Capital of the World” frequently has live music going on in the concourse. As LP walked by a young musician singing in one of the bar areas, she spotted a familiar face. Kris Kristofferson was sitting alone at a tiny table, listening to the music. Laura Paige wheeled Eleanor right up to the table, introduced herself and her baby girl, and told Mr. Kristofferson how much she had enjoyed his music her entire life. He was gracious. He said he was terribly flattered that such a young, beautiful girl even knew who he was. They chatted and took a selfie together with Eleanor; she thanked him and left to catch her plane, thrilled to have met one of our family’s music idols. Of course, what Kris Kristofferson did not know was that “Why Me, Lord?” pretty much describes Ed Innerarity’s life. The words of that song capture the pathos, wonder, humility, and gratitude all of us experienced before, during, and after Ed became the steward of his new heart.
Ed has always stressed stewardship with our children. Being custodian of a new heart is an honor, a joy, and a huge responsibility. He has always lived a life filled with activity, projects, plans, and purpose. He is incredibly intense and focused. I guess the difference now is that his focus has changed a bit. Figuring out “Why Me, Lord?” has taken up lots of Ed’s time. Some of that time he spends writing letters.
These letters are thank-you notes. These letters are lengthy. Ed writes to people from his past, going back all the way to his childhood. He thanks people who have made a difference in his life. He recounts specific ways he was molded and influenced by their friendship and efforts to mentor him. He writes letters to friends who have lost family members. He recounts memories of time with the men and women who shared their lives with him and expresses his appreciation and love for their lives as they intersected his. For a guy who claims that he can
not write his way out of a paper bag, he does a pretty good job. Of course, if you have made it to this point of the book, you know that to be true.
Ed goes to Seton Hospital and sees people who are waiting for a heart. He encourages them, he listens to them, and sometimes, if they have been friends for a while, he prays with them. No, he doesn’t just bop around the hall of the cardiac ICU cold-calling strangers. These are visits with people he knows and loves.
Keeping up with the staff and medical professionals who have shepherded us to this point is a joy. When we go to Austin for Ed’s check-ups, which are fewer all the time, it is a great reunion. The friendships we have made are deep and wide. We count on handshakes and hugs from Harvey when we park our car, welcoming smiles and more hugs and handshakes in the holding area before Ed goes back to the cath lab for his biopsy. Grace and mercy abound—undeserved but so appreciated by us. Ed usually gets by to see the physical therapists just to catch up with them while we are there, as well as Dr. Cishek’s office to see everyone there. These men and women have all been integral players in a game that went down to the buzzer. We cannot ever tell them enough what they mean to us.
While Ed and the rest of our family have the bliss of more birthdays, more milestones, more living, other families are grieving. There was not enough medicine, not enough time, not a matching organ to save a life. Organ donation is profound and simple. Donating organs is donating life. Ed can never do enough to earn the gift of life. I can never do enough to show my gratitude for having my husband restored to me. All we can do is be kinder, be more generous, be better stewards of this time we never expected to receive, and urge others to donate Life. This was the reason we have shared these emails and this story.
Dispatches from the Heart Page 14
