ed
PICC line: A peripherally inserted central catheter is a form of intravenous (IV) access that can be used for a prolonged period of time (e.g., for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition) or for the administration of substances that should not be done peripherally. It is a catheter that enters the body through the skin at a peripheral site, extends to the superior vena cava (a central venous trunk) and stays in place (dwells within the veins) for days or weeks.
From: David Hurta
Sent: Wednesday, June 10, 2015 10:55 PM
Subject: Re: Cardio Rehab
I am the luckiest guy in the world to be one of your many wingmen. You are to this heart transplant mission as Doolittle was to the Tokyo raid—prepared, ready for battle, and stacking the odds in your favor for victory. Sleep well and have another great day at pre-hab in the morning! Bogie five flying cover.
From: Monica Gose
Sent: Thursday, June 11, 2015 11:49 AM
Subject: Re: Cardio Rehab
Every time I think I feel crummy, I just think how I would readily take this pain if it would magically make a heart appear for you. You are my hero. You are an amazing man. Keep it up!
Love,
Monica
From: Ed Innerarity
Sent: Wednesday, July 1, 2015 6:14 PM
Subject: DAY NINETY-THREE
“Do or do not. There is no try.”
—YODA, THE EMPIRE STRIKES BACK
I was dead asleep when Paige sat on the edge of the bed and said that “Lisa just called and they may have a heart.” Lisa is my primary transplant nurse and everything goes through her. (If I leave the county, when I get back, changes in meds, problems with meds, dressing changes, PICC line issues, questions for the doctor, appointment with the doctor, weight loss issues . . .) Everything. We had been in Midland just a couple of days earlier and yesterday was my first day back at rehab after a few days off. I was still tired from trying to play golf over the weekend, and I had done a little extra at rehab Tuesday morning so I was worn out and still hard asleep at 6:30 a.m. when the news came. Paige cried for a bit, then said a prayer, then resumed crying (happy tears, as she would say).
Running out of options, my primary cardiologist and my electrophysiologist (both good friends) referred me to a new CHF (congestive heart failure) expert, Dr. Cishek. I met with Dr. C on March 31 of this year and was told I was very sick and that without a transplant, I would not make it to Christmas. It was a new heart or hospice. That was 93 days ago, but that is in geologic terms, or so they always say to make things seem to be very distant in time.
I had rehearsed this day so many times that with each trial run, it was as if the real date was being pushed further and further away. I had also prepared myself for a subsequent call saying that a problem had been found or a matching test did not go well, but with each call from Lisa, the likelihood of a match seemed to increase. “Looks like noon.” “When did I last take my meds, when did I last eat, how are we doing?” “Get ready, but stay there.” “Probably more like after lunch.” “What does Ed like for breakfast? Polenta. OK, he can have that.” “Tests going well so far.” “No issues with the heart so far.” “Maybe the middle of the afternoon.” “Relax but don’t do anything or get away from your phone.” “Other organs being allocated first.”
Funny where you get inspiration. Maybe it’s not inspiration, but for me, it’s like a really tough climb. It is curious where you sometimes find a solid foothold to help with the climb. Jordan Spieth starts every match assuming he is already two holes down. In his mind, he has to find a way to win two holes just to get back to even. He has prepared himself to work extra hard. He has prepared himself to win. Works for me.
The calls are coming every 30-45 minutes, not to me, but to Paige. I thought I might run over to rehab and burn off some nervous energy. Nope. I was thinking about riding my bike to the transplant hospital to gather my thoughts. Nope. All that was left was to fly my drone. I took it as high as it would go and with the GoPro was able to shoot a video where I could see the hospital over the top of the apartments and downtown Austin in the distance. Beautiful partly cloudy day.
I was told I could have something clear to drink and one clear liquid to eat before 1 p.m. so we drove over to Hoover’s and got an Arnold Palmer without the Arnold. Just lemonade. By the way, how is it that a clear liquid is considered something to eat? Anyway, I swing by the rehab center to tell the ladies “I won’t be coming for a while” and to tell them thanks for all the help. It turns out that having to watch Kelly Ripa all those mornings did not kill me, but rather must have somehow made me stronger.
More calls. The heart has now passed all the screenings including CDC. I finally speak with Lisa and learn that several hearts have been offered (to my team for possible use in me) and that those were declined (for me) for various reasons; size was cited as one reason, none of the other reasons were disclosed. It doesn’t really matter. I ask Lisa two questions, “Is she happy with the heart being offered?” And as much as I really want and need the heart, are they sure that one of the others in my transplant group might not need it just to make it through the week?
The donor situation has bothered me from the start, that a life is lost for the heart I am about to get in the next few hours. That donor and his family will be going through the worst of times and at the same moment, my life is changing in a positive way because of his selfless act. Ninety-three days into this and that is still something I think about every waking hour.
The other question is also tough for me. Without any doubt, and with 99.9 percent certainty, all of the others in my transplant group that I have met at the clinic or at rehab or at one of the support group meetings, all of them struggle significantly more, hurt more, and seem more engaged in a hand-to-hand battle with just staying alive than I. I pray that the doctors make the right decision because I could not.
More calls and now it looks like a go. “Make sure you are all packed and ready, but just sit tight.” “Probably later this afternoon or evening.” No problem, I like starting off two down. As promised, Paige and I call the girls when it first looks like a go, to do so prematurely would be unfair given the chance that something might come up. Reading between the lines, it almost sounds like the donor is local or certainly close by. We are never told that, but the fact we are being asked to stand down at the apartment makes me wonder.
Finally get the call saying to show up at ICU at 3 p.m. Glad I shaved my chest this morning. After we parked the car, we got a selfie of us at the ER helipad. Like getting ready for the big game. Checked in, lab work done, sticky things on my chest, fresh chest x-ray, reams of paperwork, hospital gown, and it is just now five in the afternoon. Surgery has been moved back again this time to 8:30 p.m. Working on finding a home for all the other organs.
Not sure how much longer I can type the narrative before they take my laptop and start. It is 6 p.m., and they are about to get sharp things ready for me in a cold room.
Thanks to all of you for your help in so many ways. See you in a few days.
Live well, you don’t know about tomorrow.
ed
[Song #2. Attached to this email was a link to “Slip Slidin’ Away” by Paul Simon, a repeat of the song linked in the DAY TWO email of April 9.]
From: David Koch
Sent Wednesday, July 1, 2015 6:45 PM
Subject: Re: DAY NINETY-THREE
Ed. COURAGE.
David
From Jim Kemper
Sent: Thursday, July 2, 2015
Subject: NOT FINISHED YET
I’m not a very good runner. I don’t even enjoy it much, but I run about 2–3 times per week, just to get a little exercise and relieve stress after a long day. I don’t run far or fast because I can’t. I just run a couple of miles, get a sweat going . . . and get my heart rate up. That’s what got me thinking a few weeks ago, while I was running around my neighborhood.
&
nbsp; It was a few days after I’d visited Ed in the hospital, as he was undergoing his transplant candidacy workup.
As I slogged along over the asphalt, I became keenly aware of my heart, thumping in my chest, and I thought of Ed. I thought of how many times I’ve run and taken for granted the blessing it is to generate an accelerated heart rate. I thought of how Ed can’t do that right now.
Then, I thought of the labor his heart endures for each precious beat, and I felt even more thankful for a blessing I’ve just expected, almost to a point of ignorance. I realized every beat is a gift. During ONE year, at an average of 80 beats/minute, our heart beats 42,048,000 times. Over Ed’s 63 years, his ticker has fired off around 2,649,024,000 times (give or take a few 10,000). Honestly, how does ANYBODY’S heart do that? Why?
Because God decides the exact number of beats to allow before He stops our pulse.
Throughout this odyssey, we all wonder, “How much longer can Ed’s heart beat?”
God will decide when He is finished using Ed here on earth. It’s clear He’s not finished yet. He’s not finished with Ed, and He’s not finished with Ed’s heart. So, He keeps it beating. He keeps it beating, with a doctor like David or with a pacemaker or with a drug or whatever the vanity of this world claims as the “reason” Ed’s still upright and breathing, but ultimately, HE is the one who decides when He’s finished with Ed’s heart and when He’s finished with Ed.
. . . He’s not finished yet. There are more people to add to the countless, fortunate individuals whom Ed has impacted and blessed.
It’s 1:00 a.m., Ed went under anesthesia at 12:05 a.m., as he visited and joked with the anesthesiologist. His heart is still beating, for a few more hours . . . God’s not finished yet.
Somewhere, within a few miles, lies a lifeless man whose chest contains a beating heart. His family is grieving. His life here is finished. God finished molding him here on earth and will, very shortly, perfect him in paradise.
But God’s not yet finished with his heart.
And as soon as God flips the “off ” button on Ed’s heart, that tired, motionless sac will be removed. Through the gift of science and skilled surgeons, God’s going to place that generous soul’s heart into Ed’s chest.
And, miraculously, that heart will resume its job, pumping along, almost as if to exclaim in a thumping clip, “not/yet, not/yet, not/yet . . .”
He’s not finished yet.
Jim Kemper
From: Winsome McIntosh
Sent: Thursday, July 2, 2015 at 5:45:02 AM
Subject: Not finished yet
Paige,
What strength you both have. I know you are tired of “being strong,” as I am, but frankly part of God’s plan is to test our strength, too. Part 1 of Ed’s story is done. The agonizing wait is over. For both of you. Your donor lives on, Ed lives on, and you live on. With the hard work of recovery and support ahead, time for you, Paige, to get as much rest as you can. Take a sleeping pill if you have to. Your strength is Ed’s strength in these coming days. Know my heart and mind are constantly with you both. If you need me, I’m there in a heartbeat, so they say. And there are many more of those ahead for the Innerarity family. Thank God.
Winsome
“Friendship, generous and unforced, without duty or obligation—that was surely the foundation of all love that mattered.”
—ANNE PERRY, BLOOD ON THE WATER
HARVEY
(BY ED)
Harvey is the valet parking czar at Seton Hospital. They might be full, but Harvey can always find or make room for one more vehicle. After all, the passenger is almost certainly about to have some procedure, and a smooth valet experience is often the first Seton impression. And usually a good one.
Harvey’s gentle demeanor belies the obvious fact that he probably played linebacker somewhere important and hurt people on the football field. I met him about the time I went on the transplant waiting list. We had moved from Midland and gotten an apartment just a few blocks from the hospital and clinic next door. At first Paige would drop me off at the hospital for my nearly daily check-ups, lab work, rehab sessions, or emails. At night, I would email my medical updates to my family, but without Internet at the apartment, I would sneak onto the Seton Wi-Fi to send them. Harvey would let us drop rein the Toyota for long enough to borrow some bandwidth.
Later, I would buy a bike and helmet and ride the few blocks for my Seton runs, so I got to see Harvey almost every morning. “Hello, Mr. Ed.” “Looking good this morning, Mr. Ed.”
“Any news today, Mr. Ed?”
There is a kolache shop between our apartment and the hospital. I quickly learned that Harvey liked the fruit-filled ones just as much as the sausage-filled, so I usually got one of each and let him pick. Things changed after the transplant. No more bike, too much strain on my recently severed sternum, so it was back to Paige taking me to the hospital, this time for my weekly biopsies.
In one of these little stories, I include a description of the right heart catheterization with biopsy. Not my favorite, not for a long time. I was told specifically not to drink anything after midnight. I was also told by my doctor not to come in dehydrated, so I drank plenty of water as soon as I woke up until I checked in at 6:15 a.m. I was so scared of the biopsy; I walked the few blocks to the hospital to drink more water and to prepare myself for the pending doom. Attitude is everything. Besides, the walk got my blood moving and would make it easier for the hurt team as they inserted various things into otherwise innocent and harmless veins. Paige took the car and was already inside by the time I had finished off one last bottle of water and strolled up to the valet parking in the predawn darkness.
And there was Harvey. I am pretty sure he got the surgery schedule from the doctors, and on days I was scheduled to get the business, he was there waiting. I know he was nervous and scared just like me, but he always pretended to be calm and matter of fact. “Morning, Mr. Ed.” “When are we going fishing, Mr. Ed?” He was trying to trick me into not being so scared, but I was not fooled. I was probably going to die. Probably from the IV alone.
Most of the time I survived the biopsies; in fact, I think all of them so far. And Harvey was often there when I was wheeled out to help me into the car. He was smiling. Always smiling. I think he was smiling because I would be back soon for another biopsy.
I hope I get to go fishing with Harvey someday.
PART 3
Heart of Gold
“I found the task so truly arduous . . . that I was almost tempted to think . . . that this movement of the heart was only to be comprehended by God. For I could neither rightly perceive at first when the systolic and when the diastolic took place by reason of the rapidity of the movement.”
—WILLIAM HARVEY
When Dr. Hunter Kirkland walked into the waiting room in the wee hours of the morning on July 2, he had a big grin on his face.
(Ed and I had met Dr. Kirkland at 11:30 p.m., when he popped in to introduce himself right before Ed was wheeled into the OR. He asked if we had any questions. I replied, “Yes, Dr. Kirkland, I have just one: Have you had a nap?” Dr. Kirkland squeezed my hand, smiled, and said, “I just woke up. I am well rested.” This confirms what I always suspected: Transplant surgeons are like astronauts and naval aviators—they can fall asleep instantly to prepare for what lies ahead.)
My brother, Jim; David Koch and Grant Billingsley (two of Ed’s loyal golf buddies and close friends); and I all stood up to greet Dr. Kirkland. I hugged him and asked him one question: “So, Dr. Kirkland, how many shocks did it take to get Ed’s new heart to wake up and start beating?”
“None,” he replied. “I took off the clamps and it started right up.”
How is that possible? I relate more to William Harvey’s words from four hundred years ago than I do to what Dr. Kirkland said. Medicine has changed and advanced exponentially in my lifetime. Who knows what the future holds? As I stood in that waiting room—euphoric, grateful, giddy, and exhausted—I realiz
ed that our lives had just changed completely, again. The waiting was over; a donor heart was beating in my husband’s chest, and, complications notwithstanding, the hourglass had not run out but had been flipped over. Finally, Ed had received his Heart of Gold.
For the next twenty-four to thirty-six hours, Ed was on a breathing tube and heavily sedated. When he was awake—well, sort of awake—he was agitated. Ed’s biggest fear pre-surgery was of having a stroke. Every time he was conscious, he wanted reassurance that he had not had a stroke, that he was going to be fine, and that the new heart was working. Since he couldn’t speak because of the breathing tube, he thought he had lost his speech. Since he was on heavy doses of drugs, he had no memory of our telling him he had not had a stroke and the heart was perfect. It was Groundhog Day every time he woke up.
Eventually, the breathing tube came out, the heavy-duty drugs cleared his system, and his brain fog abated. Our children hugged and kissed him goodbye and returned to their respective homes. Ed’s beloved physical therapists from cardio rehab came several times a day and supervised longer and longer strolls down the hall. In no time, Ed and I were allowed to go outside on the fifth-floor patio—Ed pushing a myriad of monitors and machines in a wheelchair. It was July in Austin, and the temperature was approximately 220 degrees, but we would find a patch of shade, survey the beautiful Austin skyline, hold hands, talk, laugh, and think about the future.
I realized that for the past six months, we had only thought of the future in the short term—dinner plans, a field trip, what medical appointments Ed would have that day or the next. Suddenly, Ed’s life stretched out and opened up like a telescope. Through the eyepiece, he could see himself in the future, his health and life restored due to a complete stranger. Yes, we talked about that donor. We wept for him, for his family and friends who were grieving their loss while our family and friends rejoiced at Ed’s new life. Their lives were being reset too.
Dispatches from the Heart Page 9