Now lunch time, but no lunch until the colonoscopy details are confirmed. The decision was made to prep me over two days instead of one to spare me the potential fluid overload. Anyway, who wouldn’t want to drink the Go Quickly for 48 hours? So, clear fluids it is until Mr. C comes to visit. So, I wonder if anyone else has ever had a colonoscopy with the coat hanger thing in their neck.
I played the “dead man walking” card and traded several pain killers to the guys in the basement to come up and hardwire my TV so I could get the Masters coverage. The second highlight of my day was being able to watch the Masters during injections and blood draws. More interviews, social workers, physical therapist, rehab people, thoracic surgeon (who might perform any transplant), flight coordinators, dietician, GI people, all with clipboards filled with places for check marks or big Xs. Kind of like a parole board, not sure how they want things answered. Seriously, I am aware a new heart will only become available because someone’s dad or brother or son loses his life. I think about that a lot.
My RN, Yonus, rotated off at 7:00 p.m., and just before he left, I asked if we knew yet what my blood type was. Yonus looks like someone who had fished with Peter and John. Yonus walked in without saying a word, gave me the thumbs up with a big smile like he had just cast his net on the other side of the boat. I knew what he was telling me: I am A positive! To call it the third highlight of the day would be a huge understatement. Being A+ significantly improves the odds that they might find a matching heart. While I am far from being out of the woods, this news could easily make the difference in living and dying. I cried. Paige was just walking in the room, and I told her that I felt more than ever that I was going to live. Again, lots of pieces need to fall into place.
DAY TWO SCORE: Seton Heart Institute 28, Ed 12. (Box score would show I got a touchdown with the interview with the actual surgeon, a field goal with the gurney ride, and two points for a safety. I am counting the blood type news as the safety. Every team will tell you that a safety is always worth more than just the two points, and it frequently is a momentum changer.)
[Song #1. Attached to this email was a link to “Slip Slidin’ Away” by Paul Simon. Certain emails that I sent along this journey contained links to a song or songs I wanted my family and friends to listen to before, during, or after reading the email that day. These songs helped get across emotions or thoughts that I couldn’t put into words at the time. I have included notes like this throughout to indicate when a song was included with an email so readers can listen along as well.]
From: Paige Innerarity
Sent: Thursday, April 9, 2015 10:09 PM
Subject: Heart Evaluation 101, Or How We Are Spending Our Summer Vacation
Dear Ones,
When Ed and I woke up at 4:30 this morning to prepare to go to the hospital, neither of us could have imagined what this day would hold for us. It has been intense, emotional, and affirming from beginning to end. We have spent virtually every minute since Ed was wheeled into ICU after his right heart catheterization talking and listening to a revolving cast of doctors, nurses, and techs. My brain is exploding with all the information we have received. My heart is overflowing with all the care and concern we have received. My spirit is soaring with all the prayers that have protected and lifted us throughout this day.
Without exception, every person we have met has been kind, genuinely concerned, and invested in Ed’s case. So far, all of the test results indicate he would be a candidate for a transplant. We learned this evening that his blood type is “A positive”—a huge advantage for a prospective transplant recipient. So far, every test that has been administered is further proof that he is likely to be admitted to the transplant list.
Tomorrow, there will be more tests, more interviews, more information for us to absorb and retain. Please continue to pray for Ed to have the fortitude, attitude, and mindset to continue to meet the challenges he faces. We are convinced that we are in the right place, surrounded by the right people with the right skills to give Ed his life back. Thank you all for your prayers and encouragement. We are overwhelmed by your love and it gives us the strength to put one foot in front of the other when the burden seems to be unbearable.
Love and Grace,
Paige
From: Ed Innerarity
Sent: Saturday, April 11, 2015 7:15 AM
Subject: DAY THREE
“I learned that courage is not the
absence of fear, but the triumph over it.”
—NELSON MANDELA
Today kind of took its toll, so I am not writing this until early the next morning.
I was struck by a couple of things: how poorly my earplugs work at night and how ironic it is that they keep wanting to have a serious discussion about me increasing my calorie input but continue to have me on clear liquids only since I got here.
Life-saving IV meds caused me to have a blinding headache most of the day so I was not really able to write. Staff consistently and nearly uniformly professional and available. I am not sure if I have just ignored it, been lucky, or am now really coming to terms with how advanced my cardiac problems are. So much so that I am probably here at the hospital until something is resolved; either something is discovered that keeps me off the list, or I make the list with a high priority number and see if I can make it until a heart becomes available.
I had a non-invasive echocardiogram; heart output continues to decline, approaching single digits. It still gets to them that I am able to do my walks without much effort. They cannot figure out where that is coming from. I tried to explain about my armorers, and they thought I was just getting light-headed.
Having a colonoscopy in a few hours and the prep was spread out over 24 hours to not overload my system. I was also moved to a new larger ICU room where about every procedure is performed, including the colon blow. New room meant that the new TV did not have the digital package set up and no Masters. “Dead man walking” card played again with the guys from maintenance and, voila, the dogwoods and azaleas are back. Something curious about doing a daylong colonoscopy prep with the whispering voices they use during the Masters coverage. I was promised a steak as soon as the colon camera is out. By the way, try going through the prep process with a portable toilet behind a small sheet of cheesecloth at DFW airport Concourse C and you get the amount of privacy I had. Not to mention all the wires and tubes I am still connected to.
An EKG and several more blood profiles. I am pretty sure they have all the blood they need but are doing the extra blood draws just to make sure I am still “all in.” More interviews, psychologist, pulmonologist, head transplant guru, even the chaplain showed up, a very nice young Baptist minister who does his work at the hospital. Speaking of which, I was asked by a couple of the staff about my “religion” and did I turn to my religion now under the circumstances. I told them I was a Christian and a believer but that I thought of my faith more like the primer sprayed on my car before it was painted. It’s there, it has always been there, maybe not visible under the shiny coats of paint applied later, but it’s there for sunny days or rain to be depended on in good times or tough. Not sure they understood. Not sure which of you handed me my shield of faith, coat of primer, but you will understand.
Later in the day, the big cheese transplant doctor, Mary Beth, and the chief pulmonologist sat us down for a serious discussion of a heart lung machine as a temporary worst-case resuscitation option. Something we needed to hear now so that a quick decision could be made if something serious happened. Even after all of this time and the acuteness of my situation, it is hard to hear myself speaking in normal sentences about such things. Paige will make the right call if something comes up. During that conversation, I was becoming aware that certain doctors at Seton are pushing hard for me to make the Wednesday transplant list; in fact, I may be qualified as early as Monday if this morning’s drive through the colon goes well. I must credit Paige for a fair share of that, as they seem taken with her. Another big hurdle to pass
today is the upper and lower GI tract inspection. As they said, they need the heart to go to the healthiest host possible, consistent with need.
I am not able to respond to your many wonderful emails, and I am generally worn out by all the testing, but it does not mean I don’t appreciate it.
DAY THREE SCORE: Seton 10, Ed 10 (Seton scores by putting me through the public colon prep and gets an easy field goal by keeping me from being able to sleep at night; my offense shows up finally by doing the prep while watching the Masters and tacks on a field goal of my own with the interviews.)
On a serious side, we were surprised and a bit disappointed to learn that my concerns about the sacrifice involved in a new heart becoming available and the need to be the best steward possible for any heart that came my way were never expressed to the transplant team doctors by other prospective or actual transplant recipients. Bummer.
ed
From: David Hurta
Sent: Saturday, April 11, 2015 8:53 AM
Subject: Re: DAY THREE
Ed,
You keep playing that “dead man walking” card as often as you like. Nobody deserves a deck full of them more than you. I am thrilled to hear that great things continue to happen on the third day. Jonah emerged from the big fish, Christ arose from the grave, and in a very similar fashion you came back in the third quarter and tied the score with Seton. As you aptly stated a truth so many years ago: “I’m glad we belong to a God who is not a catch-and-release God!”
I recall the words Mordecai said to Esther when he asked her to go in to see the king without her being summoned. “Perhaps this is the moment for which you were created!” When I think of all the combined hours that were spent in schooling, training, and hands-on experience of all the medical and professional staff that have attended to you over the past three days, I am overwhelmed at God’s prevenient grace. Perhaps this is the moment for which you were created! Instead of you, what if Sarah, Rebecca, Laura Paige, or Paige was in the hospital? Think how overwhelmed you would be at the resources and the army of medical professionals who were being deployed for the care and restoration of your loved one. Well, this is how all your friends and armor bearers feel about you. So you hang in there and know that you are greatly loved by many and are encompassed by the Peace of God that surpasses all understanding.
I will never leave my wingman!! See you soon.
Bogie 5, over & out
From: Paige Innerarity
Sent: Saturday, April 11, 2015 12:03 AM
Subject: Day Three—the Beat Goes On
My Dear Friends,
So, our story continues in Austin. Friday has been busy with more consultations with the transplant team. We started out with a visit with the team psychologist, who pronounced Ed “not crazy” and healthy “from the neck up.” I like Dr. Berg very much. In our family, “crazy” is a somewhat relative term, but I digress. I will save the topic of craziness and eccentricity for another time.
While Ed was preparing for his colonoscopy tomorrow, I slipped away and met my sweet brother, Jim, for a chat and lunch down the street from Seton. I chattered (crazily), Jim listened (dutifully), and I left feeling much better. Jim is wonderful in more ways than I can count. He is brilliant, funny, handsome, calming, and spiritually grounded. He blesses our family just by existing. Caroline and I call him The Golden Child because, as far as my mother was concerned, he could do no wrong. Now that we are all adults, we no longer hold that against him, because it was pretty close to the truth, anyway. We love him as unconditionally as he loves us. (Thank you, Jim, again, for always being there.)
Speaking of Caroline, my sweet sister called this afternoon to tell me she is on her way to Austin tomorrow. Is there anything better than that news? No, there is not. I woke up and learned it was National Siblings Day (which I don’t believe is a real thing, except on Facebook) and my brother and sister have made my day! My children, my sister, my brother, my friends—you are my heroes. Never forget how your prayers and your love are lifting us up. Ed and I can never thank you all enough for the support we are receiving from you all every single day.
Life is complicated. Life is hard. Life is crazy. In spite of these truths, I believe Life is beautiful. Every challenge is an opportunity to see God’s face and plan in the faces and deeds of friends and strangers. There is so much joy, so much love if we will just be still and open our eyes and hearts. You all have proven this truth to me again and again. Thank you.
Love and Grace,
Paige
From: Ed Innerarity
Sent: Saturday, April 11, 2015 9:12 PM
Subject: DAY FOUR: “Not so far, I taste metal.”
To My Armorers whose prayers I feel:
Up early for a colon job that got pushed back until noon. The GI doc talked me into having an EGD (esophagogastroduodenoscopy) to make sure there were not any ulcers or lesions. I was reluctant to have that particular procedure but decided it was best. Every funny thing about a colonoscopy has already been said so I won’t try, besides, I got the clean report that I needed to clear a very important hurdle. Plus there are some remaining esophagus and stomach areas that need some attention. I had some stomach issues from the very beginning. Now those can be finally dealt with. The anxiety associated with not being able to breath and thinking I might die has turned my stomach into a little acid factory.
I had been promised I could have anything I wanted for lunch so sweet Paige talked Whole Foods into cutting me a big ¾" T-bone and grilling it to perfection! Life is good.
I got the afternoon off and watched some Masters golf as Paige and Caroline scouted for a nearby apartment. I even had a nap. Looks like I might be here in ICU for a while. I would trade Wolfcamp acreage for a hot shower. Looks like I will be stuck with the acreage.
DAY FOUR SCORE: Seton 6, Eddie 14! (Box score: Seton made a touchdown by rule based on the colonoscopy. BUT, the extra point was blocked as the colon blow went too smoothly. Eddie scores touchdowns with the clear report and nap.)
ed
From: Ed Innerarity
Sent: Sunday, April 12, 2015 10:00 PM
Subject: DAY FIVE
“Never cut what you can untie.”
—JOSEPH JOUBERT
Today was mostly a day off, which was nice. I did have a handful of doctor interviews, but I was able to take a couple of walks up and down the halls with 40 pounds of wires and pumps and O2 monitors and IV lines so it was hardly like a hike up to Goose Creek.
Although I think of that. I think about the Mennonite tomatoes, that they might taste good again. And the Stirrup and how I miss golf days with the guys and how the hay field is doing without me, and how I miss turkey season with David and Cam, watching Rebecca ride, and hearing from LP about work and hearing how Eleanor is doing and talking sports with Sass. Will I ever get to fly fish for salmon in Alaska again? I wish I could be in my own bed, and how nice it would be to take a shower. I really wish that this was not so hard on Paige, who spends every waking hour trying to think of ways to make me feel better. But for a while, all of that has been set aside, not forgotten, but set aside until I get a new heart. That thought, that goal, is the only way out of this for Eddie. Jordan Spieth was kind enough to provide me a few hours of distraction today with his awesome play at the Masters.
Caroline has been here a couple of days and has been such a big help for Paige, plus a nice distraction from all things transplant. They brought me another big steak tonight with a baked potato and a big salad. Life is good. It really is. At least I am in no pain—none—and not sick at my stomach. I am truly thankful for that.
Another significant procedure tomorrow when they run a device of some sort up and through a vein they cut open in my groin to check on the other side of my heart where they are likely to find an Out of Order sign.
Please pray for sweet Paige.
ed
From: Cathy Manning
Sent: Monday, April 13, 2015 9:36 AM
Subject: Re: DAY FIVE
Ed and Paige—First of all you know I have rallied the troops here in Dallas and my family is praying like all-git-out!!!! Andrew texted that he wanted both of you to know how much he loves and admires you—Ed, he specifically said he appreciated how supportive and encouraging your comforting words have always been to him when he wasn’t sure he was doing the “right thing.” I’m so glad you have had such a positive influence on him!!! NOW, to the two of you—I cry every time I read the emails—the absolute unconditional LOVE you two have for each other is incredible—you know how very lucky you are to have each other—I hope I find that someday.
Ed, keep eating those steaks, dragging the bells and whistles down the hall, and I’m sure, entertaining all the nurses, doctors, aides, and anyone else that comes your way. You and Paige are truly an inspiration. Life has definitely thrown you guys some curve balls—but with each bump in the road you grow stronger and those of us watching from afar—well, we grow stronger too!!!
I LOVE YOU BOTH WITH ALL MY HEART—there are not two better people in this world!!
XOXO,
Cathy
From: Ed Innerarity
Sent: Tuesday, April 14, 2015 2:48 PM
Subject: DAY SIX
Dispatches from the Heart Page 5