Within a few days, I was placed on the transplant and heart pump listing. [By coincidence, just before all this happened, Mickey (my long time office manager and much more) updated and renewed our group insurance plan. We were pushed into a plan I had doubts about, but it would turn out to be exactly what we needed. As I said, by coincidence.]
A brief aside: On day three of my ICU stay for the evaluation, I go into a very serious irregular heart rhythm one night as I am asleep. A cardiologist and pulmonologist and crash cart team are standing outside my room eyes focused on the heart monitor at the nurse’s station. Can he work himself out of this “spot of bother”? Will he arrest? How long can we let him struggle before we must begin the most dire of situations: proceed with the artificial pump? Paige and I were told exactly what is involved and we were all but required to consider that option to be on the transplant list. We signed the release, but Paige was instructed to intervene before that began. I would wait for a new heart. Period. No heart pump, too risky, too invasive, too many possible complications. Even if it meant that things would end right there. My new pacemaker had been built with a very sophisticated algorithm built in to try to defeat potentially fatal irregular heart rhythms. But that algorithm is not activated for the few months after implant so that the new device can “learn” the nuances of my heart and customize its pacing function.
Fortunately and miraculously, the irregular heartbeats subsided, the crash cart was moved back to the nurses’ station, and the on-call cardiologists made their notes in my files. No LVAD for me tonight. Thank you, team, for that.
93 days of waiting, 93 days of agony for sweet Paige and my family. But also 93 days to prepare physically at rehab and mentally here in Austin. My family is tested as never before, but each of them leads a full battalion of angel warriors in full battle gear. They simply will not give up or let me go until a new heart is found. It was during these 93 days of preparation that Paige and I realized that I had already won. Paige actually spoke those words.
All told:
40 days of afib
1 set of paddles for the heart shocking
3 transesophageal inspections
19 chest x-rays
Nearly 40 peripheral blood draws (12 of which are unsuccessful)
3 PICC line insertions (one unsuccessful, one had to be de-clotted)
5 groin or jugular catheters
44 blood sugar finger sticks
1 surgery to insert a new pacemaker
2 procedures to pull out pacemakers
32 infusion pump changes
32 bag changes of milrinone (all done by Paige)
93 days of milrinone infusion
93 days of wearing the infusion kit
156 saline solution injection flushes
1 emergency flush on a clogged PICC line (done by David Hurta no less)
1 colonoscopy
Nearly a dozen immunizations/vaccinations
2 thoracentesis procedures
3 chest tubes
1 large catheter (purpose not to be disclosed)
8 temporary pacing leads
1 high-performance, high-speed, reversible, fine-tooth bone and gristle power saw
26 external sutures
Several internal wire cardiac sutures
1 stent for the Widow Maker
2 Swans
Oh, and 1 new heart
You guys have been busy.
Let there be no mistake, this is not “a woe is me” note; this is a “blessed am I” note. If anything, woe is you guys for all the time on your knees, for the sleepless nights, the churning stomachs, worried sick for me, scared for me, hurting for me, encouraging me, texting notes of support, emails of hope, calls with sympathy, get well wishes. Like I said, standing guard at the door of my room, beside me in the OR, holding me up in recovery, allowing me to sleep when you could not, allowing me to just breathe when you were holding yours that I might live.
It seems to me that each of you had a different assignment, and I am particularly thankful to those of you assigned to hold and comfort the donor and his family. Huge.
Since all of you apparently volunteered for this assignment you might already know this. I think buried in the pile of discharge papers was some fine-print wording that also vested in each of you the duty to hold me accountable for the gift of life. I have an obligation to each of you and particularly the donor to be a good steward of the new heart. Please hold me to that promise.
Forever grateful,
ed
[Song #5. Attached to this email was a link to “The Air That I Breathe” by The Hollies.]
Atrial fibrillation (afib): An abnormal heart rhythm. It might begin as brief periods of abnormal, rapid heartbeats that become longer over time. It is a form of supraventricular tachycardia. Treatment for afib can include medications, electrical cardioversion, or ablation.
From: Lisa Mink
Sent: Saturday, July 11, 2015 8:55 PM
Subject: Re: NEW DAY NINE
Ed, you have a wonderful way with words, which speak to how grateful you are for all the love, support, and encouragement you’ve received on this journey.
But make no mistake about it, your journey has just begun . . .
Hope all is well. I am on call this weekend if you have any questions or concerns.
Lisa
From: Winsome McIntosh
Sent: Sunday, July 12, 2015 2:36 PM
Subject: Re: NEW DAY NINE
Ed,
Two words: Well Done. You need to recognize that your love, determination, will, spirit, and faith enabled your doctors to do their job with stellar results. And your “better half ” still wants and needs you in her life as well. That kind of strong love and support is all you needed to help you through the hard part. Now rehab could get a little “testy” as you tire of the constant attention and focus on YOU. Just remember to listen to your “better half ” and do what she says. She is and will always be your greatest advocate. Again, Well Done. And with much love . . .
From: Ed Innerarity
Sent: Sunday, July 12, 2015
Subject: Re: NEW DAY NINE
Winsome,
I have been a bit busy lately and am sorry for the delay but I wanted to say how much I admired Mike and how much I will selfishly miss him. [Mike McIntosh, who had recently passed away, owned the Boat Company in Alaska and, along with his wife, Winsome, made sure each passenger on their adventure cruise not only had a great time salmon fishing or whale watching but received a healthy dose of environmental stewardship.] But more than that, he and I are not the same age, we saw each other only yearly, we had as many things that were different about us as we had in common. Mike did his thing there in Washington [In the off-season, Mike lived in DC to be able to monitor any legislation affecting his beloved wild Alaska] and here we are in Midland or Colorado, but here is what I can’t seem to figure out. How is it that with only a limited overlap of his life and mine he has made such a profound and permanent impression on me? I once said that if you fished with someone, things were never the same because of the bond the fishing creates. I know we both love the beauty of unspoiled wilderness, but how is it that in less than eight years Mike has left this Alaska-shaped tattoo on my soul? I cannot explain the feeling. I am fortunate to have spent way more than my share of time in the Sierras or waking up in a tent next to some stream, or that some of my favorite possessions are an REI backpack and a magic fly rod that connects me to you and Mike and everyone else I was lucky enough to have spent time with on the river. Perhaps that feeling is best summed up by saying that there are things about Mike that I have adopted as my own and have made part of me—like using that piece of special colored glass that was Mike in the mosaic that is me.
I was honored and blessed to know him and to call him my friend.
ed
From: Ed Innerarity
Sent: Tuesday, July 21, 2015 4:32 PM
Subject: DAY NINETEEN—HOSPITAL SOCKS
Dear
Team,
It should come as no surprise, but during this process I set some goals, things I wanted in my life again. Mile markers if you will. Once you pass that mile marker, it has become a milestone of sorts. Obviously, goal numero uno was to stay alive long enough for a heart to be found. Check. No use looking back at that one but on to the next. To me, it’s like passing a mile marker on the highway. Good information to have but once you pass it, it does no good to look at it in the rearview mirror because the backsides of mile markers are blank. Same with met goals. On to the next. For me that was breathing on my own, then a good initial biopsy, then enduring the first course of anti-rejection meds. Check, check, and check.
Today I reached another of my goals: to survive as long as Louis Washkansky, the recipient of the first human-to-human heart transplant. Maybe not a significant milestone, but as I have taught my girls: “aim small, miss small.” Medicine has come a long way in this field—thanks, Dr. Barnard; thanks, Louis. I have many more goals that I hope to achieve and turn into little personal milestones.
Paige and I made a quick and unannounced trip to Midland this past weekend. It was sort of symbolic that we took the first load of stuff back home. I also surprised the golf group by showing up Saturday morning to “join them.” Of course I can’t actually play golf for several more weeks so as not to delay the healing of where they butterflied me like a shrimp. I was able to putt a few balls when they were on the green, and in the process, I managed to ruin their rounds. All of them. Oh well. I have learned that if Lazarus is in your foursome, you won’t be breaking the course record. Anyway, to my golf buddies: thanks for all the love.
Back to the hospital socks. Once a novelty (I think I got my first pair when I had my knee replaced), now I have a drawer full. The tan ones (from St. David’s Hospital) represent all the effort that David and Javier did for the past 10 years. I got a pair of hospital socks when I was shocked out of afib. Another when they implanted the turbo-charged pacemaker in January. And another pair for the fateful echocardiogram that plainly spelled out my options, or rather, the lack thereof.
But the gray ones, issued military style at Seton Hospital, represent the final chapter of everything that led up to the transplant—my second chance and my only hope.
They come neatly packaged as a simple, elegant pair of Pillow Paws®. I would like to think that I am through getting hospital socks for a while. Rejection is not a matter of if, but when. I have been told to expect a rejection episode at some point and meds will be adjusted to deal with that when it comes. Right now my goals are to gain back some weight, work hard at rehab to regain strength, get to drive again, and string together additional biopsies with no meaningful rejection.
Live well, and please sign up to be an organ donor if you are not already.
ed
P.S. I have been asked what’s with the music linked to recent emails. It helps. Helps me and seems to frame the thoughts I struggle to express with music I grew up on and made my girls listen to. It is actually fun trying to fit the right song, but the best part is, it doesn’t have to have anything to do with my thoughts of the day to still be enjoyable. R.I.P. Sir George.
[Song #6. Attached to this email was a link to “Here Comes the Sun” by The Beatles.]
From: Paige Innerarity
Sent: Thursday, July 23, 2015 8:38 PM
Subject: Hitting A Lick For Normalcy
Dear All,
After over eight months of twists and turns, thrills and spills, agony and ecstasy, we seem to be (dare I say it?) hitting a relatively smooth patch in this River of Life. Ed had a really easy time with his third biopsy yesterday. He was calm, the procedure went smoothly, and today, we learned that his rejection numbers were zeroes across the board. We are ecstatic. One more week of good numbers and he will only have biopsies every other week. His medicines are being tweaked weekly, depending on blood work, and the dosages are going down on steroids, in particular. Anti-rejection meds have some particularly unpleasant side effects, so lower doses are always calls for celebration. Cardiac rehab is a high point of the day, always. Ed walks to the hospital, works out, walks home, and is pleasantly fatigued and proud of his accomplishments that day. For a physically active guy, it gets him back to feeling normal, to being himself. Losing his strength, losing the ability to even walk across the street without gasping for breath was terrible for him and for all of us who love him. What a joy to watch him coming back to himself and to us!
As Ed begins hitting his stride again, I see our family doing the same. Everyone is back in their places, “with bright shining faces,” living their lives. As parents, nothing is more gratifying than seeing children striving, succeeding, working, and playing hard. We are settling back into life and are so glad we can do so.
So are things “back to normal”? Well, I have to say that I hope things will never be the same as before November 1, 2014, when our lives changed dramatically and, in some ways, forever. Ed faced his own mortality and we faced the prospect of losing him. Through a chain of events that had absolutely nothing to do with our abilities, intelligence, efforts, desires, or control, Ed received a new heart, a miraculous extension of life. I pray each and every day and night that we appreciate this extra time with every breath, every minute we are allowed to hang out on this beautiful, blue marble with the precious saints who grace our lives on this side of heaven.
Life is so fleeting, precious, and beautiful. How dare we not appreciate it?
Love and Grace,
Paige
From: Ed Innerarity
Sent: Thursday, July 23, 2015 9:34 PM
Subject: NEW DAY TWENTY-TWO—JOY IS WHERE YOU MIGHT NOT EXPECT TO FIND IT
To all,
I know I wrote only a couple of days ago, but we got some really good news today; the results of Wednesday’s biopsy came back with no rejection! There will be setbacks along this long road to recovery and I will be on certain meds forever. But the news today really buoyed my spirits and those of sweet Paige. The medications (and there are many) are each designed to deal with a specific post-transplant issue. And these can be very big issues. These prescriptions also have significant side effects and interactions among themselves. All of which must be coordinated like Leonard Bernstein in front of the New York Philharmonic. There is always the risk of becoming diabetic or developing kidney problems, I will become more prone to sun and skin issues, and lots of others. I will find a way to handle that. I am managing to deal with the side effects, although it is not always pretty. At times my hands are as shaky as the Greek economy. Bring it on. I am anemic because I am not handling the iron supplement, so I am trying to make that up with foods rich in iron that are on my ok to eat list: spinach, hazelnuts, octopus. I can do that, too.
About the biopsies: They enter the jugular vein or something important like that in my neck and, with a long medical thing, run down and around the heart and then they take small samples of my new heart to look for signs of rejection. Doing the biopsy is none other than Dr. Cishek herself. I was told she had done 10,000 such biopsies, or as I told her Wednesday, she is up to 10,003, because I am pretty sure right now I am her only patient. I am adequately sedated (but awake) and in the very best of hands, but I won’t pretend; I am not brave about this. Not brave, not one bit. But I can do this too, and when the results come back like today, it is all worth it. There is some more of that joy, down there in that vein.
Here is more joy—my post op rehab workouts. I make a game of trying to get up, fix breakfast, and get off to rehab without waking Paige. She has really been through it, so for her to not have to fix me breakfast or take me to the hospital is another bit of joy. It is only four or five blocks, but I feel like Andy Dufresne after breaking out of Shawshank and the 10-minute walk is truly liberating. I can’t ride my bike because it would put too much strain on my recently parted sternum. The walk back is more like a trudge, but I can do that, too.
About the rehab: Before the surgery, before the call, I w
as working out to improve my surgical odds and increase the chances of lasting until the call came. But the post-op rehab is for my new life. To make the most of each bonus-life day. I owe it to myself. And to my family. And to my untold prayer warriors. And I owe it to the donor and his family. There is some more of that joy, over there by the treadmill.
There is joy for me in simple promises I made that if I survived, I was going to buy all new stuff. All new socks, all new underwear, new jeans, all new golf shirts (just like Jordan Spieth’s, I might add), new golf shorts, new workout shoes. You get the point. Some of this was out of practicality since I now weigh what I weighed in college, most of it is a slightly extravagant gift to my second shot at getting it right.
Live well, and thanks to those of you who just became organ donors.
(While finishing this email, I just got Paige’s update. Talk about bad timing; that is a tough act to follow. I guess you can tell how excited we are about the biopsy news. Hard to hold that in. Anyway, sorry for any duplication, at least mine has music.)
ed
About the music: The song came out at the same time Paige and I got married and of course we made the girls listen to it. During this heart ordeal, I learned from Sarah that she considered it to be our song, I guess because I played it so often on trips.
Dispatches from the Heart Page 11
