Dispatches from the Heart
Page 12
You may find it interesting to know that the signature pedal steel guitar that frames the song was played by none other than Jerry Garcia. Grateful for the music, Jerry.
[Song #7. Attached to this email was a link to “Teach Your Children” by Crosby, Stills & Nash.]
From: David Koch
Sent: Saturday, July 25, 2015 7:41 PM
Subject: Re: NEW DAY TWENTY-TWO—JOY IS WHERE YOU MIGHT NOT EXPECT TO FIND IT
Ed,
I came home from work yesterday . . . clicked on the TV and within 10 seconds a Neil Young concert was on U-Verse . . . (I’m not smart enough to know what channel, but I hit the record button)—the first song I heard was “Heart of Gold” . . . so I just closed my eyes and listened . . . may God bless your heart and fill it with courage . . . thanks to you and Paige and all your family for the privilege of what you all have shared with us . . . your actions, your words, your meditations, and your spirit . . . they are all gifts to all of us . . . my brother.
From: Ed Innerarity
Sent: Friday, July 31, 2015 4:34 AM
Subject: Day Twenty-Nine: Going Home
“Climb the mountains and get their good tidings.”
—JOHN MUIR
Team:
My transplant took place in the very early morning of July 2 (even though we had gotten the call the morning before). It was a full moon that day. Now, 29 days later, July 31st, and four very important biopsies later, we are headed home. Today is also a full moon, in fact a blue moon. Something symmetrical about that. (Curiously enough, there was a full moon in June, a Strawberry Moon, on June 2nd, our anniversary.)
This week’s biopsy came back with a zero, meaning no rejection. Very good news for many reasons including slight downward adjustments in some meds. We are not so much going home but getting a nice break from Austin and the folks we have come to love at Seton to run up to the cabin in Colorado for a few days. The all-important biopsies are now every other week, giving us (and especially Paige) a chance to spend a few precious days at our place in Creede. It will be almost a year since we were last there. And what a year it has been.
I had some rich and clever things I was going to say about the symbolism of leaving empty coat hangers behind in the apartment, but I found out yesterday that I could write a letter to the donor family. We have a winner! I thought it would be a year, but they said I could write it provided that I not give my full name and not mention the transplant center, all for the sake of the donor’s feelings. Maybe they will read my letter, maybe not. They might reply, might not. At least I get to put on paper what this has meant for me and how I might spend the new life afforded by the donor’s selfless act. I only wish that my already bad handwriting was not made worse by the trembling in my hands from the various meds. I hope they can see my thoughts even if they can’t read all the words.
And more good news: two other guys in my “transplant class” got new hearts this past Thursday. And a third one yesterday. Only one of them I actually knew from rehab, and it was such a joy to see my prayers answered for this guy who had worked so hard. He had really struggled at times. His condition several months ago had gotten so bad that he was given a heart mate, a battery powered heart-assisting pump. This moved him to an inactive status on the waiting list for six months, to provide time to heal. After six months, he was back on the waiting list, with credit for “prior days on list.” And now he has a new heart and the pump is gone. The two guys were both five days post-transplant when I got to see them on Tuesday. Now they have this same second chance in life; very special to see, very special to experience, very special to be a part of.
And the most recent good news came Thursday afternoon when Paige and I met with the surgeon who did the actual transplant. I met him briefly just minutes before he went to work sawing me in half. I was about half cooked with the pre-op cocktails, but I remember holding a picture of me fly fishing in Alaska on my chest right over my tired, barely beating, worn out heart. In the picture, I had a salmon on the line and the guide took the shot over my shoulder with a bear coming across the stream hoping for some hors d’oeuvres. It was raining, I was grinning and the guide was worried. I told Dr. Kirkland I wanted him to help me get back there. At today’s appointment, he said he remembered that conversation and might want to go with me. Perhaps, more importantly, I got an across-the-board good check-up. Heart is strong; sternum healing is solid, OK to drive some, OK to fly fish. Some things I will need to wait for, but a very good report.
I am a very blessed guy. A million things could have gone wrong. Lots of things still can, and the journey is really just beginning. I was forcibly moved out of my comfort zone. Almost everything important was taken away. I had to move out of town and let people do things to me that I don’t like. All that was just to make the transplant list. I had to wait and wait. I lost sense of time. And wondered—might I die, might I have a stroke, and even though it is the only viable option to keep me alive, how can I possibly face the surgery and the biggest battle of my life? Like I said, I am a very blessed guy. And everyone around me has been wonderful.
Live well, like you might not live forever.
ed
About the music. Everyone likes this John Denver song, even though we are going to Colorado, not West Virginia. I have never even been to West Virginia. In fact, the guy that co-wrote the original version of this song had never been to the Mountaineer State before the song was written. But it is a great going home song. And of course we made our girls listen to it, too.
The Marcels’ hit was too obvious not to include, although written in the ’30s.
[Songs #8 and #9. Attached to this email were links to “Take Me Home, Country Roads” by John Denver and “Blue Moon” by The Marcels.]
From: Ed Innerarity
Sent: Sunday, August 2, 2015 8:27 AM
Subject: ANY QUESTIONS?
“In our family, there was no clear line between religion and fly fishing. We lived at the junction of great trout rivers in western Montana, and our father was a Presbyterian minister and a fly fisherman who tied his own flies and taught others. He told us about Christ’s disciples being fishermen, and we were left to assume, as my brother and I did, that all first-class fishermen on the Sea of Galilee were fly fishermen and that John, the favorite, was a dry-fly fisherman.”
—Norman Maclean, A River Runs Through It
Live well,
ed
Today’s song is “The Road to Ensenada” by Lyle Lovett.
[Song #10. Attached to this email was a link to “The Road to Ensenada” by Lyle Lovett.]
From: Caroline Cowden
Sent: Sunday, August 2, 2015 8:27 AM
Subject: Re: ANY QUESTIONS?
Hallelujah, praise God from whom all blessings flow . . . like the river!!!!
From: Ed Innerarity
Sent: Sunday, August 2, 2015 9:23 PM
Subject: One month today
Today, I took my new heart fly fishing. It learned quickly.
From: David Terreson
Sent: Monday, August 3, 2015 5:39 AM
Subject: Re: ANY QUESTIONS?
That picture pretty much sums it up.
Probably the best opening sentence for a book, ever.
David
From: Mark Leaverton
Sent: Sunday, August 9, 2015 6:46 PM
Subject: Thinking of You
We are sitting here eating a P. Terry’s burger and we are talking about you. Hoping you are continuing to heal and get back to a wonderfully normal life. How are you doing? Can you have visitors yet? Love to you and Paige.
Heart transplants are not for the weak or cowardly. God has been so good to you and because of your humility and attitude toward all this, you, too, have done your very best in dealing with all these ups and downs. I cannot begin to imagine what you are going through. Nobody I know has ever dealt with anything like this. Needless to say, we will be praying today as you get biopsy #6 and for all those little white guy
s to really get excited and multiply like crazy. One of your most cherished blessings is Paige. I don’t know the load she has carried and the difficulties she has faced all the while uplifting and encouraging you. None of us would have in our wildest imaginations thought you and Paige would be going down this path. It is a day-to-day walk and a day-to-day, maybe hour-to-hour, trust that God is in control and has the perfect plan for you and Paige. I love that when you hurt you think of the donor and the donor’s family. That is very honoring to them and to the Lord who gave you this new life. You will get better and you will fly fish again and love on your grandchildren! Keep us posted. You know how much we love our dearest friend.
Mark Leaverton
From: Ed Innerarity
Sent: Tuesday, August 11, 2015 11:57 PM
Subject: DAY FORTY
Team,
If any of you happen to see or hear from Paige, please pass along my thanks for driving us home after the biopsy today. And for all the other times she had to drive because I had just had surgery.
And you might want to thank her for all the meals she cooked when I could not or would not eat anything but something she fixed. No pressure there. And for sharing a 602 sq. ft. apartment, which includes my bicycle (which I rode every day to rehab and to the grocery store), my drone (which I am now on my fourth, two are in the lake behind the apartment, but don’t ask), and my golf clubs (which I never got to use in Austin because the day after I brought them with me I got a new heart. Oh well). 602 square feet and no place to hide, no place to run. Yeah, thanks.
Oh, and someone might want to say thanks for being the main chef required to come up with more menu ideas than the Disney Cruise Line. And right now too, please. And when we did go out, Paige never got to pick where we went out, always deferred to my fickle taste buds and random appetite. OK, so thanks for that. Did I mention how many twice-baked potatoes she fixed me?
But how do you say thanks to someone who had to watch as I was slowly dying, which is way worse than slowly dying yourself. Do you send a thank-you note? A card?
Someone needs to give Paige a pat on the back for the endless conferences with doctors, nurses, pharmacists, hospital staff, and home health-care workers regarding all the medical supplies and prescriptions, and for all the sterile heart juice changes. (For which I was always a good sport.)
Few doctor visits, hospital stays, or trips to the ICU make me fun to be with and sweet Paige had to put up with all of that and more. I have learned that when you are dying, you don’t make the best dinner companion. And that when you are hurting, you aren’t the most fun to be around. And that when you are so scared about a pending procedure that you are shaking for two days before, you are not good company. Ditto for when the medications make you crazy. Ditto for when you cannot sleep. Ditto when it seems a heart will never be found. Double ditto for having to turn almost completely inward to prepare for the battle of my life. I am guessing that all of this is less fun for Paige than hiking with Babe in the mountains right before the rain hits. I am also guessing that all of this is less fun than having a root canal in Juarez, Mexico. On a Friday afternoon. During the World Cup! I need to somehow say thanks for putting up with all that. Somehow. Yes, a card for sure.
Oh, and one of us needs to tell her thanks for walking that impossibly thin line of keeping the girls informed of what is going on but never letting them get discouraged by the news. Being accurate but always leaving room for hope, however bad it really was, however desperate the news or the situation really was. Always holding it together for the girls. Never letting me see how scared she really was. Always patient with me no matter how many days in a row I felt bad or how worn out I was every evening. Every one of them. Every single one.
I learned something in the last day or two I did not know before. It is no secret to anyone that was around me the last nine months that few things comforted me like ice chips. By lunchtime most days, I was crunching on ice chips (the ice at Sonic was just right, not too soft, not too hard). The dentist told me it was not good long term, but he did not finish his sentence. Since a few days after my transplant, I no longer have the desire to crunch on ice. I just learned from Paige that in the last weeks of my mother’s life, she (Paige) made many a trip to the Racquet Club for ice chips for Mother. Paige fed them to her as she rapidly approached the end of her life. Until this week, I was spared that story. Paige was concerned I would connect the dots and project my problems into my mother’s fatal trajectory, which I probably would have. Only many weeks after the transplant did Paige share that story, sparing me again from more anxiety. Maybe one of us could tell her thanks for that too.
When she did have free time, when I would ride my bike to rehab for the morning or for clinic, Paige rewarded herself by doing all the linens and trying to keep the apartment as clean and germ free as possible. That is how I want to spend my free time for sure.
Paige was all the time getting food and snack platters for the ICU nurses. Always thanking each of them for taking such good care of me. And all this time, I thought they just enjoyed my wit and sense of humor.
I learned this after the fact as well: On January 2nd of this year, my electrophysiologist implanted a new super duper pacemaker and coffee maker all-in-one. It could do it all. I was in recovery and the doctor, whom we think the world of, told Paige that he “hoped the new device would help, but based on some testing he did during the surgery, he had his doubts . . . We would know for sure within a couple of weeks.” Paige began to cry, only to have the doctor, still in surgical scrubs, warn her not to let me see her like this and not to say anything, just yet. Yeah, hold that information like battery acid so I don’t get rattled any more than I am already.
Most of the IV lines and PICC lines were installed in my ICU room and poor Paige frequently had to witness first-hand when much of that did not go smoothly. I was being protected and lifted up and spared from most of the “not fun medical stuff.” And I know many of you were lifting her up too and protecting her too, but she had to see someone she cared about go through things she knew I would not enjoy and could not possibly handle. Please pass along my thanks for that too.
She remembered all the names I could not; she remembered to ask all the questions I seemed to forget; she went over all the options with me when I was firing on fewer than all cylinders. On more than one occasion, I was presented with a difficult decision on a particularly tough procedure. I was so overwhelmed I could not focus on even this one important issue. I remember turning to Paige and asking her to make the decision for me. She did, and it worked out. I need to say thanks for that too. I am not sure what being the one named on the Medical Power of Attorney, with “plug pulling responsibilities,” is like spending a week at that spa outside of Tucson. Not quite.
I am happy to report that biopsy #6 is in the books. We know this is just the beginning of the post-transplant journey, and there will be bumps along the way. But for now, we rejoice and give thanks for 40 days that I might not have had before and ask for the vision and wisdom to make the most of every bonus day.
Live well, like you really love someone.
ed
From: Caroline Cowden
Sent: Friday, August 14, 2015 10:58 AM
Subject: Re: DAY FORTY
No words can describe your precious wife!!!! Your number one angel for sure!!!! What a testimony for how much she loves you no matter what! Ed, you also did all of those things for Paige when she had her wreck and miraculously lived through it! She was truly amazing through many surgeries and years of pain! You were her number one angel! What a testimony of how much you love her!!!!! God is SO good and so are you and Paige! It was an honor and privilege to watch you both battle through these journeys with such faith and grace!!! I love you both SO much!!!! Praise God for the victorious outcome!!!!!
Caroline
From: Ed Innerarity
Sent: Thursday, August 20, 2015 3:53 AM
Subject: K-T BOUNDARY
Fellow
hurdlers,
Just over 65 million years ago, a meteor seven miles across slammed into Earth just off the coast of present-day Yucatán Peninsula. It punched a hole nearly 20 miles into the Earth. This was a major geologic event and was “discovered” just as I was getting into the oil business. The Chicxulub impact resulted in extensive plant and animal extinction, including the dinosaurs. Since I consider myself to be an earth scientist, I have been intrigued by an event so global that it marked the boundary between the Cretaceous and Tertiary periods and is widely referred to as the K-T Boundary. The impact sent huge quantities of the distinctive shocked quartz around the earth. Today, the layered, shocked quartz and associated iridium outcrops are found in several places around the world. I have wanted to see one of those outcrops and now that I have new ventricles, I decided that now is the time. So after this morning’s trip to Del Norte for lab work, I drove on over to Trinidad, Colorado, where the K-T Boundary shows itself. On the drive back, I was thinking about boundaries, geologic and otherwise.
Funny thing about boundaries, they don’t have to be limitations, maybe they are well-camouflaged opportunities. Thinly disguised new beginnings. The K-T event was not so good for T-Rex and his scaly friends yet the earth became a mostly blank sheet of paper for what came next. The Alps and the Himalayas were next, and more. Much more. Two summers ago the mountains between Creede, South Fork, and Pagosa Springs were on fire for weeks. One of the largest wildfires ever in the state. This on top of a massive tree die-off over the past decade from the pine beetle. The combination was bad. Paige and I will not live to see the old forests return to the mountains behind Creede, but our granddaughter will. And in the meantime, change and new life and different trees and new beginnings take their place. Two years ago the Forest Service placed a boundary around the area to hikers and backpackers. The Rio Grande was black for months with ash from the fire. But inside that boundary today is new life. Different to be sure, but new and fresh and very much alive. The ash in fact was the best fertilizer for the valley, and the fish are back as before.