Yesterday started off somewhat inauspiciously. At midnight, I woke up completely covered in sweat—from the bottoms of my feet to the top of my head, my hospital gown, blood pressure cuff, pillow sheets, the whole nine yards. Being the clever guy that I am, I quickly connected the medical dots and realized that I was going through menopause. I had just had my first hot flash, in this case a hot epoch.
The docs all showed up early with what seemed like a setback: The coat hanger in my neck was to be removed. I knew that alone would move me from 1-A to 1-B on the transplant list so I was initially quite disappointed. I later learned that because of the high-powered IV meds, my condition had improved significantly since I was admitted last Thursday and that I would be “sent home” at some point to rest and wait. Yes, that describes me perfectly, rest and wait.
Before I had time to pout, they came and got me for my next heart catheter, this time the left side of the heart. While they confirmed my need for a new heart, the committee that actually lists me would require this test as part of the diagnostic battery. Be careful what you joke about. You may recall, I said they might find an Out of Order sign on the left heart catheter. They did, and more.
To look at this part of the heart, everyone in the hospital gathers in the area of my groin, and they cut open a vein and an artery so they can insert long soda straws called catheters.These are guided to the heart using magic and celestial navigation and something else using x-rays. Through the catheters, they get a detailed look, along with high-resolution photos of the arteries in the area. My main descending artery was 90 percent blocked. This is the so-called Widow Maker. We are all somewhat confused since I have never had a blockage problem. Mine has been an “electrical” problem, not “plumbing” as they say in the heart business. It is possible that this very new blockage developed because of my ultra-low blood pressure. So, I am hustled back to the room for extra ports to be installed in my left underarm. Then back to the cath lab for the “meet you at my groin, part 2”: a balloon and stent treatment for the blocked artery. Time and dehydration did not permit the installation of an additional IV access point, so the balloon and stint job was performed without any sedation. Not how I would have spent my milk money. Everything worked out smoothly, and now I had to only lie flat on my back and not move for six hours in hopes of the groin incision healing enough to pull the soda straws without blood going everywhere. After several hours and a clotting test, the catheters were removed, along with very fresh stitches placed “down there” to close me up. After ice packs, sand bags to curb the bleeding, they finally got it to stop late in the day. Day Six was over.
DAY SIX SCORE: Seton 31, Ed 14 (The box score would show that Seton controlled the ball and clock most of the day with the offense on the field most of the time. Ed got an early touchdown by the way of his 1-B status. A late touchdown comes from the remedied blocked artery. As they say in this business, any extra blood flow to the heart is a good thing.)
ed
From: Rebecca Innerarity
Sent: Wednesday, April 15, 2015 2:31 AM
Subject: Re: DAY SIX
“. . . put your hope in the Lord, for with the Lord is unfailing love and with him is full redemption.”
—Psalm 130:7
From: Ed Innerarity
Sent: Wednesday, April 15, 2015 9:25 PM
Subject: GOING HOME TO WAIT
First thought: isn’t it interesting that this past weekend a nice young man named Jordan Spieth won the Masters in grand and classy style. His sponsor was none other than Under Armour. That is what I have said you guys have done for me: provided me support, encouragement, and hope in an otherwise difficult time in my life. Sounds like Under Armour to me, in a most spiritual way. You guys are my spiritual sponsors.
This morning at 7:00 a.m., I was approved by the Seton Heart Transplant Institute to be placed on the list for a new heart. I could get a call for the heart at any time starting right now. It could also take weeks or months, we simply do not know. I am being placed as a 1-B, meaning immediately available. The only class above me is 1-A and that is for people with at least one medical device and at least 2 IV meds keeping them going. The 1-A patients are confined to the ICU. Right now there is one guy in my same area that is 1-A and he is looking for a much smaller heart than I could take.
In my favor, I am blood type A positive; I passed the pulmonary test, antigen test, current cardiac status, right and left catheter exams, TB tests, various hepatitis and pneumonia vaccinations, 40 blood tests, liver profile, kidney tests, chest x-rays, a colonoscopy, along with an esophagus and upper GI inspection.
It is now 9:30 p.m., so let me wrap this up. I am now on the list for a transplant. I am sorry there was not a minute to reply to you because we were covered up with doctors every minute until late this p.m.
Life is still good, however much of it is left.
ed
From: Caroline Cowden
Sent: Thursday, April 16, 2015 7:57 AM
Subject: Re: GOING HOME TO WAIT
Ed, you forgot the cytomegalovirus test which you also passed making your options for a donor much greater!!!! I can’t thank you enough for letting me be there with you and Paige to witness this indescribable experience! Watching miracles happen every day was something I will never forget! You have been an incredible witness to all you have come into contact with at Seton and many outside of the hospital that have never met you but heard your story from Paige! Your will, courage, humor, and most of all, faith will continue to get you through this journey! I love you, dear Ed, and you will continue to be in my prayers!!! You are at THE TOP OF THAT LIST!!!! God has you and Paige in the palm of HIS hand and HE has great plans for you! I pray for peace as you now sit back and wait, which I know is SO hard!!!
TWO OF THREE DAVIDS
(BY PAIGE)
I do not care for math. There are still times I wake up in a cold sweat because my nightmare is that I am staring at a semester exam in algebra or geometry (I never even considered taking calculus) and every single proof or equation is completely beyond me. Without divine intervention or blatant cheating, I am doomed. I am feeling more than slightly queasy just writing this.
I love numbers, however. I use the patterns and sequencing of numbers every time I design a piece of jewelry. The significance of numbers comes up time and again in history, nature, literature, superstition, religion, geography, medicine, architecture, engineering, cooking, and culture. That is the short list. Numbers are everywhere and in everything.
Let’s take the number three: The Trinity, Three Graces, Three Coins in a Fountain, Three Strikes, Three Chances, Three Wishes, Three Stooges, Three Tenors, Three Musketeers, Three Branches of Government, Three Peas in a Pod, Good Things Come in Threes, Bad Things Come in Threes, Three Blind Mice, and the list goes on and on and on.
My list of “threes” includes Three Davids: David Koch, David Hurta, and David Terreson. Two of the Davids have been around, well, almost forever.
David Koch came into our life by marrying one of our best friends, Barbara Tompson. Ed and Barbara’s friendship goes back to the cradle, literally. Their mothers were great friends and were in Midland Memorial Hospital the same week for Ed’s and Barbara’s births. David has been a friend for over forty years and our shared memories, triumphs, and tragedies with him and Barbara are too many to count. We have gone through the Starving Graduate Students phase together, which included shared suppers in each other’s apartments, bowling, racquet ball and tennis competitions at Trinity, camping, rafting and fishing trips, and endless card and board games. The entertainment was cheap or free, but the fellowship and conversation was priceless. Later, we had three girls and so did they. When both couples ended up raising our families in Midland, we ended up neighbors. To this day, through various house changes, we still live within walking distance of each other. This was not by plan or design on any of our parts, but I do not believe in coincidences. So, when the chips were down, what did David do? David did ev
erything.
When Ed went into his free fall of congestive heart failure, he became incredibly withdrawn and began to shut down physically, emotionally, and spiritually. I begged him to tell his friends, and his reply was, “Tell them what? Tell them I can’t walk five steps without gasping for breath? Tell them I lie in bed hurting all over? Tell them I am dying? They don’t need to hear that. I don’t need to bring down my friends.” But one Sunday afternoon, as he was laboriously walking the neighborhood with me, trying to “get exercise and feel normal,” we dropped in at the Kochs’ house. We sat on the sofa, and he told them everything.
He told them he was in afib, that he was seeing David Terreson in a couple of weeks to hopefully get his heart back into rhythm. He couldn’t get his breath, he had no energy, he felt terrible. Of course, David Koch had already noticed he was not well. When one is in congestive heart failure, trying to “act normal” looks like that—acting, but very poorly. Our friends listened. They asked questions. They were empathetic and engaged. The circle of people who knew widened, and our burden was shared. It was a cathartic time of grace for us, with many more to follow.
David Koch did not just ask, “What can I do?” David did things. David walks Willie Nelson, their family Shih Tzu, every night. When he walked by our house, he would pick up Babe, our yellow Lab, and take her with them. He did this the whole time we were in Austin, for weeks on end. He and David Hurta would fight over who was going to take care of Babe, feed her, play with her, and check on the house. If he saw a sprinkler head that was malfunctioning, he changed it. He called Ed about once a week just to tell him about that week’s golf game, talk about football or Jordan Spieth, tell an off-color joke—just two guys talking. If Ed wanted to talk about his week of labs, pre-hab/rehab, or doctor consults, David listened and asked questions. They talked about everything and they talked about nothing. Because Ed did not have the physical stamina or the emotional collateral to engage with all the people he knew were praying for him and cheering him on, having David as the conduit to his circle of friends, keeping him vicariously involved in his regular life, was important.
Did I mention David is a clinical psychologist? His children, when they were younger, said David was not a Real Doctor. Perhaps, before any of us were even born, God knew we would need an Unreal Doctor for a lifelong friend.
Which brings me to David #2. David Hurta has been Ed’s wingman (David’s description, not mine) for over thirty years. They have played golf and shot dove, pheasant, and quail. We have all snow skied together and taken our children to Disney World. These guys have caught catfish in the Rio Grande along the Texas-Mexico border in their younger days at great peril and fly fished for trout on the Rio Grande near its headwaters in Colorado. They have eaten more meals together in Styrofoam containers, driving down the highway to another adventure, than they have shared at an actual table.
After Ed and I were in our apartment in Austin for a few weeks, it became apparent a trip home was necessary. Ed was in a routine, with daily workouts at the hospital, so he decided that I could leave him to take care of things at our house, and David Hurta could come be his babysitter for a couple of days. I was not thrilled about leaving Ed. His milrinone infusion pump/batteries had to be changed every seventy-two hours, as well as the IV bag of milrinone. The medication forced his heart to beat more efficiently. The bag change had to be done by (me) wearing surgical gloves, carefully cleaning all the connections to the pump and PICC line with alcohol, turning the pump off, turning it back on, checking the digital readout, flushing the line if it was not working properly, and knowing when it was working properly. I had been trained at the hospital for this task, and the thought of turning it over to anyone else made me extremely nervous. Thankfully, Ed was also scheduled for a dressing change, which was done by a home nursing service. The visiting nurse could also change out the pump and IV bag, so David could just be the babysitter and have no medical responsibilities. It was a great relief to me.
Ed has always been incredibly self-reliant. One crippling aspect of a critical illness is a loss of independence. The last thing I wanted, and the last thing Ed needed, was for him to feel suffocated by me being overly protective and ever present. We had spent virtually every moment together now for months. A break from one another would be good for both of us. I agreed to go to Midland as long as he promised that he and David would call if there were any issues or questions. David flew in to Austin as I drove home to check on the house and dog and to bring back things we wanted. The pump and bag change were scheduled for the next day.
David was an attentive observer but was just that, an observer. The visiting nurse did all the actual procedure. After all, with a trained professional, what could possibly go wrong? The boys left the apartment, giddy with success, and went to have a putting contest at Hamilton Golf Course, right down the street. Ed could not understand why he felt so weak walking up the small slope on the putting green. He figured that it was just heat and humidity. Ed won the contest, but they went back to the apartment because Ed was feeling really crummy and needed to lie down. After a bit, and feeling steadily worse, Ed called David into the bedroom and said, “Something is wrong. We might need to go to the hospital. Let’s check the pump.”
The nurse had not turned on the infusion pump after completing the dressing, pump, and bag changes. Now, Ed should have checked it himself instead of assuming that all was in order. He made a quick call to Rick Aristeguieta at Cardiac Infusion Specialists, who talked them through a saline flush; the pump was started and all was well. Of course, David was horrified and shaky. He had actually had to “scrub up and glove up” to do the saline flush. Rick is an awesome coach and talked him through it in his quiet, confident manner over speakerphone. Ed’s reaction? “Hurta, you should be upset. You just got beaten in a putting contest by a guy who was mostly dead. That must be a bummer.”
When Ed recounted the story to me over the phone that evening, I was initially weak in the knees. Why did I go to Midland? In what universe did I think Thing One and Thing Two could have managed an infusion bag change? What if Ed had ended up in ICU because I went to pick up a few clothes for us and pat Babe on the head? Auugh! At this point of imagining the worst, the end result required my focus.
Ed did not end up in ICU. Ed and David, with Rick’s calm instructions, fixed the problem. The crisis was averted. Ed felt empowered and a little less sickly and dependent because he figured it out without me there yammering in his ear. We had a respite from each other, and time with one of his favorite guys in the world made him feel, however briefly, normal. It was a definite win for Team Innerarity. Yes, it all turned out just fine.
I never left him overnight again.
PART 2
The Waiting
“It was about waiting for your dreams and not knowing
if they will come true. I always felt it was an optimistic song.”
—TOM PETTY
We left Seton Hospital, spent one more night at the hotel, and then moved into a furnished apartment a couple of blocks and a straight shot from the hospital. Going to Central Market for groceries was, literally, a walk in the park. We walked through a park with our grocery bags to shop, sat outside and ate lunch or supper, and heard live music on the weekends. Ed bought a bike to ride to the hospital for his sessions with physical therapy, but he rode the bus back to the apartment because even riding up a slight incline was impossible. His decision to ride the bike to therapy was met with disapproval by some of the staff, citing the traffic dangers, the possibility of falling, getting overheated. “Really?” Ed said to me, “I am a dying man! I am not going to worry about traffic risks at this point! I’ve got to have some normalcy in my life!”
Achieving any sense of normalcy was elusive as we waited. Meals were strange. Ed ordered multiple items, ate a bite or two, and said everything tasted like copper pennies. He choked down his meal supplements and continued to lose weight. I shopped, I cooked. I threw away food and felt terribl
y guilty for the wastefulness of it all. We waited.
Waiting in an apartment can be incredibly boring and nerve-racking. Field trips around Austin were imperative to retain sanity and to keep us from the fate of “The Gingham Dog and the Calico Cat.” (Read the poem if this reference does not ring any bells.) The Bob Bullock Texas State History Museum was a field trip. We went to Mayfield Park several times to see the peacocks, strolled around a bit, and sat and watched the families corralling children. I wondered if Ed would live long enough and be strong enough to be able to take our granddaughter on outings. At Christmas, he had been too weak to pick her up and could only hold her sitting on the sofa. We waited.
The LBJ Museum had a retrospective exhibit of The Beatles. We loved reliving our shared memories of how they changed music forever. Ed can’t carry a tune in a bucket, but he has a tremendous appreciation and knowledge of many different artists, particularly from the ’60s, ’70s, and ’80s. Our three daughters grew up listening to The Beatles, The Beach Boys, Bob Dylan, John Denver, Joan Baez, Joni Mitchell, Linda Ronstadt, Lyle Lovett, songs from Broadway musicals, Gilbert and Sullivan, and more. These were our soundtracks for car trips their entire childhoods. Would we ever crank up the music at the cabin and sing along with these songs again? I wondered. And we waited.
Thank God it was the summer of Jordan Spieth! This young man from Dallas had played golf briefly at the University of Texas and was lighting up the PGA with his brilliant playing. When Jordan was playing a tournament—which was, fortunately, most of May, June, and July—Ed and I watched every drive, chip, and beautiful putt on television. Under Armour sponsored Jordan Spieth. I studied the shirts he wore, went to Academy Sports one morning, and came home with three of them for Ed. He was enchanted! He wore a Spieth shirt every time we watched Jordan play. I wondered if Ed would ever play golf with his buddies in Midland again. He was a 4 handicap at the time he got so sick in November. And we waited.
Dispatches from the Heart Page 6