Two Weeks to My Climb

Last year at this time I sat waiting in an overstuffed chair for a surgical miracle. During those last few days in May 2009 I wrote these words on my blog:

“It's been a tough week. My body is tired. And I'll admit that I've been depressed at times and full of anxiety. Why do I feel so empty? I have every reason to live and love.”

Photo by Jeffery Allred | Deseret News (2009)

Much has transpired since last year and now I am only two weeks away from making an historic climb up Mount Olympus (Utah) in honor of my deceased brother.

I believe I will be the oldest survivor of the Fontan heart surgery from Utah to make this difficult hike post transplant.

Photo: Mount Olympus, Utah

I was so close to death and have known too many who have died.

Because of this, I find myself spending a lot of time doing things associated with the beauty of this world while I am still in this physical body.

Whether it is fishing, hiking, camping, or riding a bike long distances, I can’t stop enjoying the outdoors. I feel close to my brother. Above all, I feel close to God.

I am grateful for the creator of our world and all of the beauty that surrounds me.

Our Father in Heaven has orchestrated a beautiful plan that transcends this world for each us. We can trust God and know this life-time is but a small moment in an eternal view only He understands.

What we do now, matters.

Photo: Fishing the Provo River, Utah

“Every day you may make progress. Every step may be fruitful.

Yet there will stretch out before you an ever-lengthening, ever-ascending, ever-improving path.

You know you will never get to the end of the journey.

But this, so far from discouraging, only adds to the joy and glory of the climb.”

-Winston Churchill

The Strength to Listen

Each week as I attend my transplant clinic at Primary Children's Medical Center in Salt Lake City I run into other families with a child who has a heart defect or is waiting for a heart transplant.

This past week I was fortunate to spend a brief moment with Lucas and his mother. They checked into the hospital in the room next to me shortly before I left home. Lucas needs a heart soon. He is a sweet infant with a beautiful smile who gets the affection of the nurses who cared for me.

In Lucas’s room I could feel God’s love and I know He is deeply involved in their battle. I was honored to be in the presence of Lucas.

Photo: Visiting with Lucas and his mother Kristin while he waits for a heart tranplant

As I was leaving the hospital on the elevator after visiting with Lucas I accidentally got off on the wrong floor. These things are not a coincidence because I was fortunate to run into Briton and his mother Stacee.

I was wearing my green mask since I was in a public environment, which protects me from catching the flu or a cold while my immune system is worse than a newborn child. Unfortunately, my mask frightened young Briton.

I felt bad and offered him my Three Musketeer candy bar I had just purchased. I had a good time talking to them and know God is deeply involved in their lives.

Briton received the Fontan procedure several weeks ago and is doing quite well. He should have a long life ahead of him. The fontan has greatly improved from the time I had received it more than twenty years ago.

As I visited with these two families I again realized that even though I feel a season of victory there are others in the midst of a hard battle.

Often, so many of us are oblivious to what’s happening next door or in our own homes.

I hope I never forget or lose sight of the fact that there are children and adults throughout the world in need of our kindness, love, prayers, and a little help.

My scars are reminders.

Photo: Visiting with Briton and his mother Stacee. He is recovering from the fontan surgery

You and I can only do so much. We can improve the world by choosing to mourn with those that mourn and comfort those who stand in need of comfort.

I believe God will guide us to where we need to be to serve others.

If I've learned anything at all through my experiences it is that I know God is the Father of us all. He loves his children more than we can imagine. We can trust in Him.

No matter how much we do or try to do to help in the end it's the love of God that is going to help ease the pain and suffering of others. I felt His love through the kind acts of others.

Of course we need seasons to celebrate!

However, I’ve learned that even though we are in a state celebration or like we don’t have a care in the world, we should have within each of us the strength to listen to our impressions and be ready to go and do all that is asked of us.

So what can we do today?

Instead of focusing on everyone we know with a trial try selecting one person in need and go and do something about it. Maybe that means offering up a prayer, sending a thoughtful e-mail, making phone call, delivering a kind note, or simply listening to their burdens without saying much. Be a listening ear and enjoy the time you have with that person.

By doing this you’ll find more peace and happiness because you’re thinking of others.

Love is on the Move

Last Sunday, after being home from the hospital 4 days, our neighbor dropped off their new convertible BMW. She said, “Here you go. It’s yours for two days.” I’ve always said, “It’s better to be trusted than to be loved.” Of course, we took the car with the top down. In the back of the vehicle, Eden was snug in her car seat with a cute jacket.

With the wind blowing through our hair and faces my wife Lynnette drove us up the nearest canyon by our home. The trees in Little Cottonwood Canyon were changing. The green leaves were a beautiful red, orange, and yellow. A season has come to a end and a new one is beginning.

We pumped up the volume listening to a favorite band called Leeland. As they sang, “Love is on the Move” we headed up to Alta Ski Resort were we parked the neighbors car.

For the first time in 22 years I felt no altitude sickness, which I often had up in the mountains because of my old heart’s anatomy and the fontan procedure. We walked some distance up a small trail off the side of the road. I felt amazing.

Driving home all we could do is cry because of what God has done for our little family. Hundreds of people have prayed. Little children have pleaded with God for Eden’s daddy. Surely the creator orchestrated something beautiful and I hope others may feel our same joy.

I feel “endurance” and recognize blood flowing through my body. Like slowly dipping the tips of your fingers in warm water I can now feel a sensation in my fingers. I’m composing music with more feeling. My nails grow. I used to have to clip my nails every other month. Now, it’s every week. I don’t get winded or lightheaded talking. I can follow Eden around the block as she rides her bike and still feel like going another mile. My appetite is strong. I’m up early walking as the sun rises. Needless to say, I feel alive and vibrant. Is this what it feels like to be normal? If so, count your blessings. You all have been greatly blessed by the Creator.

I had a chance to see and hold my old heart in the lab prior to leaving the hospital. Some of the heart had gone to another lab and a small part of the left atrium and superior vena cava is still in me. What I held in my hands was the size of a football and looked awful and somewhat disgusting. Pacemaker leads were still in the fatty substance on the outer walls. Stitches from previous surgeries were still in place in various locations. My right atrium was a big 4-5 inch balloon with very thin walls. It had been deflated. That’s how Dr. Kaza was able to remove the heart. The left ventricle and left atrium was covered with a thick fatty wall. I observed my only functional valve, the mitral valve, which struggled to pump oxygenated blood to my body for 36 years.

As I held this heavy over-sized heart in both hands I said to the pathologist, “How in the world did I survive all these years on this thing?” He replied with a puzzled smile, “That’s what we’re trying to figure out.”

At that moment for the first time I saw beyond my faith or spiritual hope of a creator or God. I held the physical evidence in my hands. Clearly someone else is breathing life into our bodies. The pump, which sustained my life for 36 years struggling to push blood through my body, leaves experts wondering how is this possible? Surgeons figured a way out. They made it work.

I asked a friend who is a cardiothoracic anesthesiologist about challenging surgeries and the delicate matters of life and death. Why are some taken home to God? Why do some stay? He said, “Sometimes, no matter how hard we work and no matter if we are doing everything correctly the patient for some strange reason passes away. And then there are times where we think to ourselves ‘there is no way this person is going to survive.’ But we go ahead and do the best job we can and the person lives. It’s hard to understand such circumstances. Obviously, someone else is running the show.”

Because of the tender mercy of our Heavenly Father, the Creator preserved my life all of these years. And now, I have a new heart. I am greatly blessed. I don’t know why. I’m humbled and sobered by the miracle that was beautifully orchestrated over the last year. All I know is that God Almighty has breathed life back into my body. He is my friend, your friend, my Father in Heaven, and your Father in Heaven. He is real. He lives. And like the scars in the palm of Jesus hands I have scars to remind me of His love, mercy, and grace.

In conclusion, I have been blessed my whole life with a congenital heart defect. My soul has been stretched. I will continue to search and seek out soul stretching experiences because in this I find joy, wisdom, happiness, and a personal relationship with God. His purpose and plan for each person is real. There is life after death. I do not doubt. We will see our loved ones who’ve passed away. I will enjoy a reunion with my brother. Until then, may we all enjoy our life and find joy in the journey.
_____________________________________________________________

Watch more video at http://www.youtube.com/user/livingforeden
_____________________________________________________________

Remembering a Girl named Stephanie

There is not a week that goes by that I don’t remember a little girl named Stephanie who had a profound effect on my attitude and outlook on life.

I was a teenager and received the challenging Fontan procedure, which would greatly improve my heart’s function. Surgeons re-opened my chest a few days later to reduce swelling, bleeding, and implant a pacemaker. I was in good spirits until they said they had to go back in and replace the faulty pacemaker and move it to my abdomen. By then I was depressed and frustrated with my situation. I remember saying to my dad with tears in my eyes, as I was wheeled on an operating table into that final surgery, “I want to go home.” But, what I meant was home to God. “I can’t take this anymore.”

I had been in the pediatric intensive care unit a few days sleeping mostly as my body recovered. There was one particular day when I awoke and saw standing next to the side of my bed a young girl I thought to be 5 or 6 years old. She had dark hair, big beautiful eyes, and was obviously mesmerized at my situation. I must have had a hundred tubes running in and out of me and I still had a large one down my throat, which was uncomfortable. But, here was this young girl who was very pale. I noticed a tube placed into her trachea on her neck. She could not speak and sadly she appeared to be dying. And yet, this little girl had a smile that stretched from one ear to the other as if to say, “Cheer up… It’ll be ok!”

Over the next few days we became friends. Stephanie would stop by to visit me in the PICU and eventually in my room on 4 West. She drew me a picture of her in green scrubs standing tall in a bed of colorful flowers by a tree with the sun shining down. I would show her all of my BYU football posters of Shawn Knight and Jason Buck along with an autographed picture of Bruce Hurst who pitched for the Boston Red Sox. He graciously stopped by to see several patients the previous year while I was having heart surgery to remove the walnut size blister full of staff infection or called endocarditis. (His pitching helped the Rex Sox defeat the New York Mets in the 1986 world series.)

Eventually, I recovered and went home. A year later my family ran into Stephanie’s mother Patsy at a grocery store where she told us that her daughter passed away shortly after we left the hospital. She had a form of sistic fibrosis, which slowly took her home to God. Patsy told us Stephanie loved coming down a floor to see patients but it wore her out and eventually she died.

Many years later as I was preparing to leave my home for a two-year service mission for my church this experience would replay over and over in my mind. I spent three weeks in a training center under a very strict schedule. We were up at 6:30 every morning, attended 12 hours of class, and hit the sack at 10:30 pm. This began to wear on my health and I was frustrated and became depressed. I thought about being sent home. I didn’t want to be a burden.

My mind reflected back to my challenges in a hospital where I underwent worse challenges and I thought of Stephanie. And for the first time I realized the depth of her sacrifice in visiting me. She died giving of herself to others. She probably could have lasted a little longer. But, rather, she got out and went to the aid of another. Whether that was her intention or not she did it anyways. Her visits and radiating smile transfixed me in the hospital and I was no longer depressed.

And in that missionary training center, after being depressed and throwing a pity party for myself I chose to “cheer up” and told myself Stephanie’s words, “It’ll be ok.” My mission became another one of the most important experiences of my life wherein I learned many of life’s valuable lessons.

There is not a week that goes by that I don’t think about Stephanie.

(Pictures: Top Right - Me and Stephanie; Right Middle - My companion Elder Clark and me; Bottom Right - With one of my favorite families)

My Heart Cath

Prior to yesterday’s heart cath my wife Lynnette and I were fortunate to visit with a cute little boy named Grant and his parent’s Kyle and Allie. Grant was born with HLHS and needed some repair work on his liver, which was shaped like a horseshoe around his other organs. But, gratefully, after many prayers and good medical care, Grant is on the mend and doing better. Doctors need to keep him in the pediatric intensive care unit (P.I.C.U.) for another couple of weeks before Kyle and Allie can take him home. In the meantime, his parents have an RV they can stay in parked at the hospital. Kyle has been attending school in Logan, Utah.

While in the P.I.C.U. we saw many familiar faces and had a brief conversation with one of my surgeons. We also learned that little Jack Trent is recovering very well from his Fontan and they hope to take him home soon.

As for my cath, we checked in at noon and waited with other same-day surgery children. I always enjoy sitting in there as the only adult going into a procedure. Toys are everywhere. There was one woman telling her grandson how to play his video game. So I pulled out my Iphone and played a golf game.

We were called into a room after 30 minutes. They checked my vital stats and had me take off my clothes and put on a gown. Doctor Gray came in and we discussed the procedure, which would be my third cath since being listed for a heart last August.

My anestiologist came into the room and we discussed how they wouldn’t put me completely under like the children but they would give me an anti-anxiety drug and another causing amnesia. (In my childhood I remember being awake for most of these caths although they now put the kids completely out).

After saying goodbye to my gorgeous wife I walked into the cath lab which looks like an operation room. There were several nurses and techs prepping the room. We joked about the temperpedic mattress on the narrow operating table. We laughed about many other things as I laid flat on the table.

They hooked me up to machines and began a slow drip of the drug in my picc line. Once the drip was going they put an IV in my left hand so I could have my 24/7 medication Mileranone running into my picc. I continued joking about my vulnerable situation. The radio was playing “round and round” by a metal band called RATT. I hadn’t heard that song in a long time. I mentioned, “you’re putting me out to this 80s song?” Slowly, I faded or drifted off and the procedure went forward.

I remember talking through the procedure although I was very sleepy. I felt the wire going into my body through an artery in my left groin area. It was somewhat uncomfortable, but not painful. It’s like being at the dentist after they’ve numbed you and you feel the pressures of the drill in your mouth but no pain. Doctor Gray checked my heart's pressures, the stent he had put in six months ago, and clot off a large collateral artery.

I awoke in the recovery room surrounded by other children in their beds, plenty of nurses, and a lot of movement. I have to be honest I felt extremely uncomfortable and had a lot of anxiety. I’m not sure if I had a bad reaction to a drug or if some evil power overcame me. I was discouraged and mentally drained. I felt like the character Andy in The Shawshank Redemption trying to escape through the narrow tunnel he had spent years try to dig to his freedom.

After an hour Lynnette put my socks on my feet. I put on my shirt and eventually the anxieties went away. I became calm and asked for some food. I asked my nurse for the popular root beer slushy many have grown to love. I downed a few of those and by 10:30 pm we were able to pack up and head home after getting a dose of antibiotics through my IV, which they would remove. I still have a large bandage over my left groin that I’ll take off in a few hours.

In the midst of suffering I try to remind myself that it does end. It might seem like a million years away. But, the pain ends. Some suffering last our whole life – but it ends. I am comforted by my faith and knowing there is a loving God who does not find joy in our suffering but finds joy in what it makes us become.

(Pictures: Top - Grant and his parents Kyle & Allie, Middle - Me and Lynnette, Bottom - With my Mom whose spent years in a children's hospital with me)

What's up Doc?

Pictures: This is my heart from a CT Scan

I went to the transplant clinic today to meet with my transplant doctor Melanie Everitt and my adult congenital heart doctor Angela Yetman. I also ran into one of my thoracic surgeons, Dr. Peter Kouretas. They are a wonderful team and I enjoy seeing them. The highlight of the clinic for my wife and me was interacting with a few of the “heart moms” and their beautiful children who’ve been transplanted. We saw little Daxton, pretty Kaidence, and baby Benjamin.

I went home feeling extremely confident about the “actual” transplant surgery. Angela Yetman, MD said, “Transplants are one of the easier forms of heart surgery although my anatomy will make it a little more challenging.” It’s the recovery that will be the most difficult time, according to doctors. I remember Dr. Kouretas’ colleague Dr. Hawkins assure me that there is an 80% chance they’ll need to re-open my chest to get rid of excess fluid. I say, “just put a zipper on there and go to town.”

Adults who’ve had the Fontan procedure like me do in fact recover much slower. I could be in the hospital 2-3 months. Nobody really knows. Again, I say, “bring me some hospital Jello through a straw.” As long as I get an opportunity to go home and enjoy my little girl and beautiful wife I am ready to run that marathon until I reach that finish no matter how hard it will be.

Pictures (this is my huge heart. the right atrium is 3.94 inches in diameter. it looks like a giant cocoon with one ugly caterpillar waiting to fly away. CLICK ON THEM TO ENLARGE)

Reading "Heart to Heart"

My doctors said my health is stable which is good since transplants are down 29% in the region. It's going to take some time. As long as I'm feeling some strength I don't mind waiting. But, when I don't feel good I'm hoping the surgery won't be too far off. Nevertheless, life is wonderful. My wife and daughter are angels and I love each day with them! My extended family is incredibly supportive and have sacrificed much in our behalf. I'm constantly in awe of the goodness of God and his rich blessings that pour down upon us.

(Picture: My musician friend Josh Waldron checking in on me when I was at the hospital for several days in 2008.)

I should admit though that with all of the medications I'm taking, including my shots and internal IV, I get anxious. I have to stay busy even though I'm extremely tired and usually sitting around. You should know, for those of you at work, or trying to keep up with kids, there is no good television during the day (except for The Price is Right), and all the new movies Hollywood produces make me feel like I'm wasting precious time. So, I have found great happiness doing many other things. When I'm not being entertained by my beautiful 3 year old or enjoying conversation with my angel of a wife I am doing quite a bit of reading, listening to music or great speeches & sermons, answering e-mails, writing notes, running my small record label, and blogging, which I am now addicted too, having just created another blog http://hope4things.blogspot.com

I've been deeply inspired reading the autobiography "Heart to Heart" by one of my spiritual heroes Russell M. Nelson. He is a great leader and teacher in The Church of Jesus Christ of Latter-Day Saints. In his earlier life he was a heart surgeon. He’s world renown for his contribution in helping the team of interns and doctors create the first artificial heart lung machine (cardiopulmonary bypass) which makes open heart surgery possible. This machine made it possible for blood to bypass my heart in order for surgeons to remove endocarditis from me in 1986 and receive the Fontan procedure in 1987. This amazing machine will be a major part of my heart transplant and has saved millions of lives. In "Heart to Heart" there is a beautiful description of the body and how it works. He speaks about the heart and how powerful of an organ it is. Listen to Russell M. Nelson's description of a normal heart.

READ THE FULL TEXT
LISTEN TO THE ENTIRE SERMON

What is it that you think about?

(This is me in 1987 recovering from post fontan open heart surgery - Surgeons opened my chest 3 separate times during this stay because of additional problems)

A close friend of mine asked me, “with your situation what is it that you think about?” That is a good question. When you’re waiting for an event to happen that could determine your fate what do you think about?

For me, it’s a chance to take a look back at life and reflect on events and who you’ve become and where you’re headed.

What consume my mind are what matters most to me, my playful little 3 year old and my beautiful angel of a wife.

It’s so unfortunate that millions of men don’t know what I am talking about. Comedian Jerry Seinfeld, who was popular for his long bachelor life, said, when asked about his new-found family life and fatherhood, “What the hell was I thinking? My child and wife are everything to me.”

MY BRIEF MEDICAL HISTORY | Potts Shunt, Endocarditis, The Fontan

BRIEF HISTORY

I was born in 1973 with tricuspid atresia and transposition of the greater arteries. I was not getting any oxygen in my blood for the body. I was a blue baby. Within hours of being born my body was rushed to the children’s hospital where Dr. Conrad Jensen (former partner of Russell M. Nelson, M.D.) flew home from a medical conference to perform a Potts shunt when I was 22 hours old. Before going into surgery my parents overhead one of the doctors say, "We're going to lose that kid." The Potts shunt allowed me to enjoy a fun childhood. I played baseball and ran around the neighborhood. But, I would stop to rest. I loved scouts and the outdoors. I was fortunate to get my Eagle before I turned 13.

One week after my eagle award ceremony and in August 1986, before 8th grade began, I developed endocarditis, which doctors could not find for almost a month. I was losing weight and in serious heart failure. After three MRI scans they found the walnut size blister full of staff infection in the section of my heart that Dr. Conrad fixed my heart with the Potts Shunt. (I should include here that the MRI came to Utah 6 months before I got ill. This technology helped save my life). Donald Doty, M.D. opened me up and removed the infection. He performed a new technique, which allowed my life to continue. But, he said within a year I would need a reconstructive heart surgery called the Fontan.

School had begun and I was home-schooled for a month before I could attend. I remember my first day back. Because I still had a poor heart I was pale, blue, and weak. I remembering walking up the stairs to my health class for the first time. I sat in the back. My teacher said, "You ok?" And in front of the class I broke down crying. She took me to the teacher's lounge and gave me some food. She went back up an told the kids about my heart and the word spread through the school. Kids were kind to me. The girls called me "Purple Plum." I didn't mind. And the end of the year the kids elected me student body historian. Summer was coming and that meant the Fontan surgery.

In August of 1987 I went in for the Fontan. It was a difficult procedure. Not only did they have to re-create a right atrium but they had to figure out how to deal with my reversed arteries. It was a difficult surgery. Doctors implanted a pacemaker, which would fail within days, so they moved it to my abdomen because the leads are screwed into the outer walls of the heart muscle since my anatomy won’t allow them to flow in through the arteries. After my recovery I went back to school and life went back to normal. I was no longer "Purple Plum" because there was great coloring in my face and nails. Two months after the surgery I rode my bike from Salt Lake to Draper. It takes 30 minutes to drive there.

Since that time I’ve had 5-6 pacemakers replaced. I came home a month early from serving a 2 year church mission because the battery was very low.

I married my amazing wife who loves the medical field and is a nurse. What a blessing!

Doctors replaced defective leads almost 5 years ago by going into the heart through some ribs below my left breast.

I’ve been in the hospital for endocarditis once more, which I beat after three weeks thanks to great new antibiotics.

I’ve been in for pneumonia and the flu among other minor issues.

But, for the most part I have had an extremely healthy “feel good” type of a life.