We talked. We talked about our family, friends, and medical team. We exchanged observations and thoughts about what we had each heard in meetings with doctors, nurses, physical therapists, pharmacists. It was always good to have two viewpoints, two sets of ears. Everyone listens differently; everyone has different impressions and filters conversations in a highly individual manner. It was a good thing to rehash those conversations and compare notes. Sometimes we argued; sometimes we became frustrated, but we laughed a lot, too. We waited.
We wrote. We poured out our thanks, our hopes, our gratitude in emails. It was therapy for us; it helped us remember that we were fortunate in so many respects. We lived in an age and a country where great strides were being made in medicine. In our lifetime, the first heart transplant was performed. In our lifetime, organ donation and transplants were becoming more and more commonplace and successful. How incredible and humbling to be part of this life-saving story. It was scary, it was exhausting, but it was a great adventure, and even in the midst of it, we were very aware that this experience was a privilege. We waited.
We discussed the donor and his family. We spoke of the donor as “he” because Ed’s size and body type pretty much excluded the possibility of his donor being a female. Ed wrestled with the fact that someone else’s life would end in order for his life to continue. He agonized over that loss. He spoke of, and still speaks of, someone losing a father, a son, a brother, a spouse, and it is a grief that he will always carry. With that grief is an intense gratitude and desire to be the very best steward of his new heart. Ed may never meet the donor family, but he and I will pray for them every night for as long as we live. The decision of the donor and his family to donate Life is a gift we are always aware of and will appreciate forever. We prayed for the unknown donor and his family, and we waited.
From: Ed Innerarity
Sent: Thursday, April 16, 2015 7:41 AM
To: My golf group
Subject: Ed out for golf for a while
Guys,
Most of you have probably heard part of this by now but I wanted you all to hear it from me. Just before Easter I met with a new doctor in Austin at the Seton Heart Institute. After an exam, I was told that my heart was weaker than previously suspected and they wanted me back ASAP. We spent a wonderful Easter with the entire family (Sarah and Cameron, LP and baby Eleanor, and of course Rebecca) doing all the fun country things, turkey hunting, exploring the woods, having great family meals together, etc. I also had the chance to tell them about my upcoming plans to enter the potential transplant program at Seton.
I returned to Austin right after Easter and beginning last Wednesday I began a weeklong and very detailed diagnostic program. In the process I was tested for every possible illness, vaccinated for even more, and my heart tested and worked on. I was also blood typed and my antigens tested for a potential heart match. The purpose of the weeklong stay was to evaluate me for a possible heart transplant and get me in as good of shape as my heart might permit. I had multiple catheter treatments, one of which discovered a major blockage in the Widow Maker. That blockage was remedied as part of the process. I also had a new colonoscopy, upper GI inspection, multiple chest x-rays, pulmonary tests, and the list goes on and on.
The bottom line is that yesterday the Seton Heart Institute Transplant Committee placed me on the list for immediate transplant. That does not mean I get a new heart immediately, but that I am immediately available to receive one if a suitable match is found. The transplant listing is very complex, but I am seeking a certain size heart from a donor with a certain blood type and with certain antigen matches. Some people get a new heart in just a few days, others have not gotten one after more than a year. I am behind some previously listed potential recipients, but ahead of many.
Anyone overweight, or a smoker, or with lung, kidney, or liver issues is essentially listed after me. I am very blessed that I met all of the criteria and in the eyes of the committee, present a nearly ideal host body for age 63.
Paige and I have gotten an apartment here in Austin for the wait. We are likely here until I get a heart. We could use your prayers, of course, for the perfect heart, for Paige, and that the heart go into the best possible host, maybe that is me, maybe that best match is someone else. While we need your prayers, we also need time to rest and prepare. Except for family, we are not seeing visitors. The time to ourselves will be needed to prepare for the biggest battle of my life, the transplant operation.
So I am out for golf this weekend, but let’s hope I will be back on the course with you guys sometime.
ed
From: Ed Innerarity
Sent: Thursday, April 16, 2015 8:38 AM
To: John Delatour
Subject: Summertime plans
John,
After a weeklong cardiac evaluation at Seton Heart Institute here in Austin, I was placed on the heart transplant list. I will not trouble you with the details of the past week, but I went through every test I had ever heard of and then some. After the weeklong process, the heart committee listed me as “immediately available.” This does not mean I will get a new heart immediately, just that I am available if a suitable match became available. In theory, I could get a call tomorrow or six months from now that my match had been found.
I had a surprising good spot on the list because of my size, blood type, antigen make-up, and “host profile.” In other words, I have no other health issues. I am writing this to you guys in hopes that you might pass along the word to all of the Wason families. [These are twelve families, including ours, who jointly own a ranch just outside Creede, Colorado, on the Rio Grande. Each family has a summer home there on the river. This is some of the best fly fishing in the state.] Paige and I have gotten an apartment in Austin a block from the hospital where I continue to be tuned up as an outpatient and made as ready as possible for the transplant.
[It is noteworthy that I had just seen John and his golf buddies at lunch a couple of weeks prior at a tiny general store in Garner, Texas, just a couple of miles from our farm in Parker County. I was with our cowboy and probably looked as if I had been on the tractor all morning, which I had been. Little did I know at that time what major changes were in store for me. I hope I did not look like someone who needed a new heart, but you will have to ask John and his buddies about that.]
Please pray for the perfect heart and that it go into the host body that will be the best possible steward, maybe that is me, maybe that is another recipient, but that is our hope. While we need your prayers, we are also seeking some time alone to recover from the past week and to rest and ready ourselves for the biggest battle of my life. I will be consumed with pre-surgical preparations and rehab, but please feel free to email Paige.
With God’s grace, we will be back to Wason one day soon.
ed
From: John Delatour
Sent: Thursday, April 16, 2015
Subject: Re: Summertime plans
Oh Ed, what earth-shattering news. I can’t imagine yours and Paige’s stress. We will pray for you and I will share your story with my friends who are all Christians. You looked great by the way. Stay well, my friend, and let us know if we can help in any way.
John and Ann
From: Ed Innerarity
Sent: Thursday, April 16, 2015
Subject: Re: Summertime plans
John, we consider ourselves very blessed and very fortunate. Many would not have made it through the evaluation phase nor received a listing for a new heart. I am also quite blessed to otherwise be in good shape. We decided to view this as a celebration that an opportunity exists for me to return to Wason and golf and everything else I love and miss. The actual transplant will be difficult, I am sure, but I am ready. Thanks for your words of encouragement and your prayers.
From: Paige Innerarity
Sent: Thursday, April 16, 2015 9:03 AM
Subject: A Favor, Please
Dear Friends and Potential Gate Keepers,
I
have picked you all to make a very special request for a huge favor. The news we received yesterday has humbled, thrilled, and overwhelmed us. After months of watching Ed decline dramatically, and a week of grueling tests, interviews, and medical procedures, he has received what may be the equivalent of The Golden Ticket. Most of yesterday was spent with Lisa, the nurse coordinator of the transplant team, briefing us on what lies ahead. It is daunting, to say the least. Bottom line, Ed needs rest. He needs time to get himself in the very best shape possible for the transplant and aftermath. We have no idea if and when the phone call will come that his heart has been found. We have no idea how he will do during the surgery and post-surgery. Transplant recipients are receiving a great gift. Along with this gift come great responsibilities and a whole new set of challenges—psychologically and physically. What we need from you all is that you communicate to everyone else how much we need to have this time to rest, reflect, and Just Be.
Right now, by necessity, our days and nights are filled with preparation for the days ahead. Please tell our friends we love them, we appreciate their love and concern, we covet their prayers, and know they are storming the gates of heaven on our behalf. When they ask what we need, the answer is very simple. We need to be alone. We need to have them show their love by respecting our need to settle in to what will be our new life going forward. Besides our children and family, we simply cannot and will not be able to have visitors for a while. I say this firmly and unapologetically because Ed’s well-being has to be my only concern right now.
Thank you for understanding. Thank you for loving us. Thank you for all of this and more. Feel free to email or call me any time. I want to talk, I want to write. If I don’t answer, you understand.
So, I am going to consider this a spiritual and physical retreat for Ed. I will write an email to that effect sometime, maybe today.
Love and Grace,
Paige
From: Ed Innerarity
Sent: Saturday, April 18, 2015 9:53 AM
Subject: OUR NEW AND NORMAL LIFE
Note to self: Stop expecting any good, or as they say in bow hunting for fish, aim low.
Friends,
Paige and I have moved into a very nice apartment she found that is only a couple of blocks from the transplant hospital, and we are rapidly making this our new life. Our new normal life. After the past four months in general and the past week in particular, this looks and feels like normal to us. We are in the same apartment complex that our oldest daughter, Sarah, lived in when she was at UT in the late 1990s. So, maybe it’s a little weird at our age to move into an apartment (which just happens to be where our daughter once lived while in college) but besides that, our new life is normal.
Ok, it is also a little weird that I have to wear a shoulder bag with a pump inside with a bag of juice that is continuously pumped through a thin tube through a semi-permanent port under my left arm directly into my aortic valve. Replacement bags of Heart Alive juice arrive by FedEx packed in commercial grade freezer bags every 72 hours, but besides that, our life is normal. I forgot to mention that I sleep, eat, and shower with my little bag of juice and pump attached. Every activity is accompanied by this companion. I have found a way to hang the bag on a coat hanger twisted to attach to the top of the open linen cabinet so the tube that carries the juice makes its way to me in the shower, coming in from the left side, of course. But besides that, life is normal. Oh, and the bags of juice have to be refrigerated until 90 minutes before being placed in service, and when a new bag is hooked up to the battery powered pump, a second and identical pump is always used so that at any given time both pumps are available in case one malfunctions. What is not normal about that? And, we have 10 days of backup batteries on hand and eight days of backup juice in the fridge and multiple sets of backup tubes and connections and dressing connections. Plus a sack full of sterile set-up kits with gloves and masks and drapes to replace any part of the tubing or dressing in case of a break or tear. A nurse comes by every few days to make the sterile IV changes, but Paige is checked out on pump changes, battery failures, or if the line needs to be flushed with saline solution before, during, or after a blood draw. Other than that, our life here is normal.
Normal and almost boring; that’s us. I look like a well-groomed drug user, what with the needle marks in both arms, the back of my hands, my neck and groin, so except for that, I guess normal would describe me. Although, I am not exactly sure how I would describe my now famous groin area where I had multiple catheters, one in a vein and one in an artery. The same area where a collection of ICU nurses collectively worked somewhat unsuccessfully to stop the bleeding. (Somehow it seems that I should have gotten money for that, or flowers.) The same area that looks like I took a Nolan Ryan fastball and where I now have a hematoma the size of Johnny Bench’s catcher’s mitt. But, besides all that, our lives are pretty much normal.
Very normal. Unless wondering what each cell phone call might bring. Or, being unable to sit on the patio of many a nice Austin restaurant and not wonder who else shares my blood type. Or, wanting to tell the young father dining with his wife and little girl next to us to please don’t get killed by a drunk driver. Or, wondering how in the world I am to be a worthy host for a heart that becomes available only because someone’s Dad or brother or son lost his life. Or, how desperately I hope the transplant team makes sure that if a match is found for me, that there is not someone else on the list that might not need it more or provide a better host body. Or, how my soul is touched just sitting in the same waiting room with others that are in the transplant program, knowing that nearly half of the group will go on to Glory before a match is found. I would like to think that these thoughts are in fact normal, at least for someone on the transplant list.
ed
Coreg: A drug that works by blocking the action of certain natural substances in your body, such as epinephrine. This effect lowers the heart rate, blood pressure, and strain on the heart. Coreg belongs to a class of drugs known as beta blockers.
From: Ed Innerarity
Sent: Saturday, April 18, 2015
To: David Terreson
Subject: “Fly” Fishing
David,
Even though I am stuck here in Austin in our little apartment while waiting for the call that a matching heart has been found, I wanted you to know that I am still able to do some fly fishing. Perhaps not the same fly fishing that we enjoyed together in Colorado, but under the circumstances, it may be the only fly fishing I might be doing for a while.
Behind our apartment here just a few blocks from Seton is a walking park with a couple of ponds, with the usual ducks, turtles, small fish, and kids running around. Add to that the drone that my children gave me for Christmas last year. It has been in the box since Christmas because I had to get a second pacemaker the next week. I had a friend bring us some things from Midland last week, including the drone. I tied a few feet of fishing line to the drone, attached a small hook on which I placed a small quantity of premium Boar’s Head Ovengold Roasted Turkey Breast from Central Market. I dangled the line in the water, carefully avoiding the turtles, which would have pulled the drone under. I made a beautiful presentation, just beside some rocks where the fish were likely to be. On my very first drift I hooked up with a native Travis County Pond Perch. I must admit that the walk down to the water’s edge would be a bit too much effort in my current condition, so I had one of the numerous little boys that had gathered around safely return the fish to the water. In the remaining 10 minutes of battery life left (for the drone, not my pacemaker), I caught two more, all about the same size. I am attaching a picture as fishermen seem required to do. If there is not a picture, does that mean they made up the story?
I know you are proud beyond belief and probably jealous that I was able to do some fly fishing while on the transplant list and attached up to my infusion kit. And you are stuck in the office listening to other bad hearts.
Your friend,
ed
/> From: David Terreson
Sent: Sunday, April 19, 2015
Subject: Re: “Fly” Fishing
Ed,
That is a remarkable achievement. You are an extraordinarily creative guy.
There is but one issue. As a fly fisherman, you understand that catching a fish with bait, no matter if you are a little infirm, is not fly fishing. I feel bad about being a little harsh like this, but I’m sure you will understand.
David
To: David Terreson
Sent: Wednesday, April 22, 2015
Subject: Real “Fly” Fishing
David,
Not exactly sure who made you the Cardio Commissioner of Fly Fishing but your point is well made. I made Paige drive me out to Bee Cave to the fly shop and I bought an assortment of flies: prince nymphs, hoppers, and a Parachute Adams. Then the trudge back to the pond with drone in hand.
While I would have preferred to use a dry fly, the prop wash from the drone ruined the effect so I quickly tied on the bead-head nymph. It worked just like when you and I fished the back channel at the Stirrup last year. First drift, too. I think it was the same little boy that released the fish for me. Maybe the same fish, but either way I can check the pond on 38th Street off my bucket list of places I always wanted to go fly fishing.
Requisite picture attached. Let’s hope I make it through all this and we can do some real fly fishing again someday.
ed
From: Paige Innerarity
Sent: Monday, April 27, 2015 9:43 PM
Subject: There’s Nothing Like a Farm
One of our favorite movies of all time is The Natural, starring Robert Redford as Roy Hobbs, an over-the-hill baseball player with a past who comes back to the game. If you haven’t seen it, you really must. I will not get into the story, but toward the end of the movie, Roy says, “There’s nothing like a farm,” and proceeds to expound on the subject for a while.
Dispatches from the Heart Page 7