One week post-transplant, we left the hospital and moved back to our little apartment for a few weeks as Ed settled into the routine of biopsies, cardio rehab, and the ever-changing medications and protocols that needed to be followed to keep his new heart healthy. By August, we were able to go to our cabin in Colorado for a whole week. It was incredible to be there. We took walks, Ed fished, and we drank in the tranquility and spiritual peace that the river and mountains always granted us. The three trips to Creede in August and September were a major turning point in resetting our life. This place felt normal; this place gave us back ourselves.
By the end of September, we had turned in the keys to the Austin apartment and moved back to Midland. Our trips to Austin would continue, but they were less frequent with each passing week. Ed, who had lived his life so abundantly before his transplant, had been entrusted with a new heart and given a new life. The experience has marked him and changed him in ways that are still being revealed, but the realization that this entire experience, with all its ups and downs, is in itself a gift and an adventure has brought about one of the biggest changes that I have observed. Knowing that he has received more time on this side of heaven makes every day precious.
Immunosuppressive drugs or anti-rejection medications inhibit activity of the immune system to prevent the rejection of transplanted organs and tissues such as the heart, kidney, liver, or bone marrow.
From: Ed Innerarity
Sent: Tuesday, July 7, 2015 5:15 PM
Subject: Alive again, I think
[This email was not previously sent. It was a very difficult email for me to write at the time, not only physically but also from an emotional standpoint. I was able to get my thoughts down—being plagued with hiccups the first couple of days didn’t help any, among plenty of other things, as you’ll read—but I just wasn’t ready to share what I was experiencing with my family and friends at that point.]
I think the early astronauts had an expression for going around the dark side of the moon. They were out of communication for a while and literally cut off from the rest of world. I am back from being on the dark side of the moon.
The actual transplant surgery began very early on July 2nd, and I was kept sedated until earlier today.
Until my head cleared I did not know if I had had a stroke . . . I could not swallow. Rebecca gave me ice chips when the breathing tube came out.
Josh, one of the guys from rehab, came by to help me stand for the first time. I remember saying, “Do I look like I want to put my feet on the floor/to stand and take a step?”
I was given so much anti-rejection medicine in the past two days, my eyeballs literally changed in shape. As a result, my vision was so bad I could not write and my hands were shaking so much I could hardly use the keys on my laptop. And where is Lisa? And shouldn’t someone make sure that my chest isn’t going to pop open and whatever they put in there fall out?
It is a strange place where they turn you off and hand you over to the heart/lung machine. Stranger still that twilight where you are aware enough of what’s going on that you’re sure something is wrong but too sedated to see the dots, much less begin to connect them.
They brought me scrambled eggs and I remember looking at them for many minutes hoping I might remember how to use a fork to transfer hospital eggs from the divided sectioned plate to the middle of my face. Aim small, miss small, my ass.
My sternum itself did not hurt, or if it did, everything else was demanding my attention so I did not notice. Everything they had done made something hurt and all the anti-rejection meds made me feel sad.
The one overarching thing that got me through today was knowing, or more accurately, being told again and again, that it was over. The surgery was over. The transplant was over.
“The trouble is, you think you have time.”
—JACK KORNFIELD, BUDDHA’S LITTLE INSTRUCTION BOOK
From: Ed Innerarity
Sent: Wednesday, July 8, 2015 9:52 AM
Subject: NEW DAY FIVE: “Home team bats last.”
Day Five.
As you may have guessed, I am starting over on the day count beginning with the procedure. If you get a new heart, you get to do that. Days start over, time resets, life continues but renews. Yes, it has been about a hundred days since I first saw Dr. C, but I have a new watch and a new calendar. And except for biopsies and clinic visits, the new calendar is mostly open, waiting for important things I need to do to be written in it.
I am still 63 years old, but the days from here on will somehow be counted differently. They like to say “in geologic” terms. Like dog years or horse years or heart years, these will be different in some way. In time, I will learn how those days are to be lived. In his email, Jim (Kemper) has made me aware that I have more work to do and that Someone must still have plans for me. I am beginning to learn of those plans. Plans for me, but why me?
The last few days have been something of a blur. I do recall that one big prayer was answered in that as they prepared me in the final minutes before the surgery, I was not scared. Completely peaceful. I was acutely aware that I might die, but not scared. I was as prepared as I was going to get from the reflection and from the rehab. Nothing worse than going into a big battle being scared, nothing better than an unexplained calm. I was being stuck with everything you can imagine, and it was as if I was watching them from across the room, still there but unaware of the sticks and lines and drips and preps. Nothing the anesthesiologist or surgeon told me gave me any fear. That is one big answer to one big prayer.
Curiously, just the last few days before the surgery, I told Paige that something was changing, that things were not quite right. Looking back, it is likely that the heart juice was slowly losing its effectiveness on my heart. Maybe the same for my rehab, that I had maxed out the benefits from the exercise. My side effects were slowly becoming more pronounced. I was beginning to develop new side effects to the meds, the heart failure, and the treatments. My new pacemaker was now assisting with each beat in a desperate race to see if it could keep me going just long enough for a new heart to show up. That pacemaker lasted only six months and was taken out when the new heart went in, but played a big role in keeping me going and strong until the big day. Same for the heart juice. I was developing a skin reaction to the meds, too. I was running out of time.
I will not bore you with the surgery details; I slept through most of it anyway. I was vented for about 36 hours afterward. Then, they started pulling things out. First, the breathing vent, which felt like a piece of corrugated culvert pipe. Then various catheters in various places. Then chest tubes and arterial lines and wires and such. I remember trying to write important questions on a clipboard: Did I get my new heart, did I have a stroke, do I have a heart mate? Why me?
Paige and everyone else assured me over and over, but I was too drugged to really understand.
Live well,
ed
[Song #3. Attached to this email was a link to “Why Me, Lord?” by Kris Kristofferson, which pretty much sums up how I felt. Laura Paige headed back to Denver earlier that day and bumped into Kris at the airport. When she called to tell me, I immediately thought of this song.]
From: Stuart Beal
Sent: Wednesday, July 8, 2015 10:01 AM
Subject: Re: NEW DAY FIVE
Thanks for the update, Fast Eddy! Thinking about and praying for you daily. Headed to Wyoming with dad on Saturday to try to catch a 28+" rainbow. Will be thinking of you as the river flows between my feet. Pictures to follow.
From: Mickey Trimble
Sent: Wednesday, July 8, 2015 11:25 AM
Subject: Re: NEW DAY FIVE
So glad to hear from you. I am happy things are going so well and know that you are on the road to an amazing recovery. Love the song, but you know WHY as well as anyone. God still has things for you to do in this life, as Jim so eloquently put it; He isn’t finished with you yet.
Blessings and comfort as you continue on this road
of recovery,
Mickey
“I feel a very unusual sensation—if it is not indigestion, I think it must be gratitude.”
—BENJAMIN DISRAELI
From: Ed Innerarity
Sent: Thursday, July 9, 2015 9:48 PM
Subject: NEW DAY SEVEN
Time to start saying thank you.
Paige does Facebook, and each day she reads me the encouraging words from so many people. Many I hardly know or only met recently. But apparently, all those prayers and all that support and all that encouragement worked because I am doing very well. I am on a ton of important medications, and I am not out of the woods yet, but they pulled out the last of the chest drain tubes and external pacing wires today. (The pacing wires are like small sewing needles on the end of thin wires strategically driven into the chest and abdomen in case the new heart needs pacing or shocking. But it has not needed that.)
To each of you (and many others I don’t have email addresses for), I want to say thank you. Because each of you were there when I should have been afraid, but was not; when I should have really hurt from the surgery, but did not; when I simply could not have taken any more sticks, IVs, PICC lines, stitches, but did; when there was every reason I could die, but did not. It is exactly as if you were there instead of me for the worst of it. Taking what I could not, hurting so I would not, getting cut open so I did not have to, being wired shut so I could be spared that, too. Every hurtful, painful, scary, or anxious event of this ordeal (including knowing that on any day I could very well die or have a stroke) was shared by each of you, all of you, time after time. And usually, when I needed help the most. Somehow just saying thanks doesn’t seem to quite cover the tab.
I have had some time to reflect and have come to the conclusion that in our lives we all have lists. Mine includes a list of people to thank, and that list will always (should always) be the longest list. There is always someone out there that deserves a thank you from me. Wish I had said thanks again to my eighth-grade science teacher, my freshman economics prof, Dr. Wyvell, a special guy that taught me how to string a tennis racket, that guy that introduced me to rocks, Paige’s aunt . . . Trust me, it’s a long list and the names on it may not mean the same to you. But the names on your “thank you due” list will. We become who we are in large part because of those folks.
The other observation is that we all have a list of regrets, but this one is hopefully much shorter. The shorter the list of regrets, the better. Ditto for the list of people we need to apologize to. I do not think these two lists are the same. I have few regrets in my life. I would give anything to have gone to one more football game with my dad, nothing to apologize for, but something I regret we did not do more of.
The need to tell someone I am sorry about something I did gets a little tricky. Unlike regrets, I can make that “sorry” list as short as I want. For me, my regrets are missed opportunities. Many missed opportunities are gone forever, and there is nothing I can do about them now. Maybe they become life lessons we can learn from.
But maybe every unspoken “I am sorry” is a regret where the cement has not yet hardened. I still have time to do something about it. My new heart has given me the chance to work on shortening my “I am sorry” list. Please be patient.
Again, thanks to all of you who helped walk me through this. Any of you who know me at all agree that this is not me, this medical stuff is not my deal, and that there is no way Eddie could do this. No way. So that leaves you. You made this possible. You will want to say it was the Lord working through you, of course. But you asked for and accepted the assignment. Accepting the pain, sharing the hurt, shouldering the fear, refusing to let me die. I may be wearing my donor’s heart, but I am wearing a smile that came from all of you. I can’t help but think of the song “Heart of Gold” by Neil Young.
[Song #4. Attached to this email was a link to “Heart of Gold” by Neil Young.]
From: Paige Innerarity
Sent: Thursday, July 9, 2015 11:22 PM
Subject: A THANK YOU NOTE
On December 3, 1967, Dr. Christiaan Barnard, a South African cardiothoracic surgeon, performed the first successful human-to-human heart transplant. There were 30 people in the operating room, including Dr. Barnard’s brother, who assisted him. The surgery lasted a bit over nine hours. The heart recipient lived 19 days. I remember how electrifying this groundbreaking surgery was at the time, the possibilities it opened for those with heart disease. It received worldwide attention, the medical equivalent of a NASA space launch. I was 14 years old. Ed was 15 years old. He didn’t know I existed, and I had fallen in love with him when I was in fifth grade and he was in sixth grade, but that is a story for another time.
On July 2, 2015, at approximately 2:00 a.m., I sat in the ICU waiting room with my brother, Jim. Amanda, the OR nurse, called me with a surgical update: Ed’s new heart had arrived and was about to be put in his chest. There were 12–14 people in the operating room, the surgery had begun at 12:05 a.m., and Amanda would call me again about 4:15 to tell me that it was finished. As I write this, I get goose bumps all over again. How can this even be done? What makes it possible to take a heart, which is not beating, and sew it in, take off the clamps, and it is “Gentlemen, start your engines”?
Medicine has come a very long way in a very short time. Technology and surgical skill are to be applauded, and God knows, our family is forever indebted to the doctors, nurses, and technicians who have shepherded us through this process for the last 10 years. God also knows that as a 14-year-old watching Chet Huntley and David Brinkley on NBC News, I couldn’t fathom that Dr. Barnard’s breakthrough would lead to my husband’s life being saved almost 48 years later.
The really stunning epiphany I had during my transplant slumber party that night has nothing to do with science and medicine, though. The amazing, marvelous, miraculous part of the story for me was that during the slumber party, while the person who has shared my life for over 40 years was lying on a steel table, his chest open and empty, kept alive by a bypass machine and the skill of some amazing men and women, we were being propped up by the prayers and hopes of people all over the world. Friends and family were loving us and interceding on Ed’s behalf for healing and restoration. An ICU transplant nurse joined us at the slumber party before the surgery was over. David and Grant, two of Ed’s golfing buddies and partners-in-crime, drove all night from Midland to join our vigil before the surgery was over. I felt completely at peace and surrounded by the comfort of the Holy Spirit.
I don’t know how our story will end. I don’t know if Ed will have complications with infection, stroke, or rejection. We have no guarantees in this life, except that none of us will get out of here alive. What I do know is that we are loved, and we can never express our gratitude for that love sufficiently.
So, I thank you all, and I thank my God, the Creator of All, for giving me and my family the opportunity to have some more time with my husband, their brother, their uncle, their father, and their grandfather.
Love and Grace,
Paige
From: Ed Innerarity
Sent: Saturday, July 11, 2015 8:40 PM
Subject: NEW DAY NINE
Dear Team,
I was discharged late yesterday and we staggered to the apartment and collapsed. Paige was completely spent—me too. It was nice to sleep on our own sheets and without someone trying to draw blood at 3:45 a.m. and then come back to weigh me at 4:15 a.m.
I have had a chance to run the first set of numbers and thought all of you might want to know the extent of the burden you just shouldered. All of you share in this amazing “taking one for Eddie,” but I have it in my mind that each of you had different roles at various times.
Beginning October 31, 2014, I went into atrial fibrillation so you guys have been on the job going on nine months. The afib was masked by acid reflux and an enlarged liver complicating the diagnosis until I was shocked back into normal sinus rhythm on December 10th. First big ouch fo
r my intervener(s). Very ragged December then an emergency pacemaker/defibrillator on January 2nd. Ouch, ouch! A few days later they tapped and drained my lung (thoracentesis). Ouch, ouch, ouch! You guys are pushing and shoving for a place in line to lift me up. I don’t realize it yet, but a small army of angel warriors is out there knowing what I don’t know. Things would get worse, much worse, as I am being prepared. By now I am unable to walk across the room in the evening. Nearly hourly episodes of acute shortness of breath. I am gasping for air and my exercises to deal with that are not working. My band of warriors was readying themselves for a condition I was refusing to admit that I had, advanced congestive heart failure.
By this time, my dear and devoted cardiologist and electrophysiologist are throwing everything they have at the problem and are unable to even slow the decline. By now I am on some serious meds, but no help. I am taking more diuretics than all the Real Housewives of Beverly Hills. Still no help, but no problem for my band of angels, standing in for my defense with swords in hand at the door of my hospital room. My heart numbers are appallingly low across the board. How I function at all is a mystery to the doctors; they say my body is compensating. I say otherwise.
Out of sheer love and desperation, my heart doctor for the last 10 years, and with a breaking heart of his own, turns me over to a congestive heart failure/end of life/transplant specialist at Seton Hospital. I am told that I will not see another Christmas without a heart mate (an external heart pump) or transplant. I am told that hospice is my only other option. My transplant cardiologist is a petite, no nonsense redhead, and her frank assessment takes away what little breath I have. I am admitted to the Seton Transplant Evaluation program where I end up in ICU for a week. Things are starting to get really tough on my teammates as the team takes a constant series of body blows on my behalf. I have 48 hours to “get my affairs in order.” Hats off to everyone who made that happen. Let me assure you, I am not the guy that likes to get a new will, power of attorney, advanced medical directives, and specific orders to the medical facility “just in case.” When the lawyers hand-deliver a big pile of important documents, where they say critical things four different ways on 100 percent cotton bond paper, with multiple witnesses and notaries all bound in those blue document covers, you know you are in some serious soup. That is just earthly stuff, but the load on Paige just increased exponentially.
Dispatches from the Heart Page 10