Thursday, December 31, 2009

2009 | Looking Back

A month or two after I was listed for a heart transplant on August 20, 2008 my parents, brothers and sisters along with their spouses, a few of which were in town from Dallas and Las Vegas, gathered in my grandparent’s home to discuss the transplant list and the serious nature of my heart failure. We had a family prayer and then my Dad said something to the effect, “We are going to have a rather tough year ahead of us, but I feel Paul is going to make it.”

After we discussed several other issues, my father and brothers gathered around me and blessed me according to the traditions of my Mormon faith. Led by my father and the faith of my sisters in the room, my brothers gave me what we call a priesthood blessing. As part of the experience I was told I would feel God’s love through the ordeal and be blessed with strength to endure the challenges ahead. In addition, my father was impressed to say I would get well.

As 2009 draws to a close, looking back who would have thought that two of the men in that room would have passed away leaving me with a miraculous recovery and a second chance at life?

Within seven months, my younger brother Brian was tragically killed in a taser incident the details of which are confusing, ridiculous, and painful. This was a sad and unfortunate event that obviously could have been prevented. I continue to wrestle with the nature of his death.

Here I was waiting for a new heart, which requires someone to die, my whole family praying for my survival, and another member of our family dies.

Could life be anymore ironic? Where could I find understanding and peace? How can any of us find answers to life’s most challenging moments with such tragedy?

Devastated and heartbroken our family understood the sacrifice, heartache and pain my donor’s family would feel losing their son, brother, father, and friend.

Later, my grandfather Layton, who joined us in that room with Brian more than a year ago, quietly slipped to the other side on a Sunday evening in November. This was a much more welcomed occasion because he had enjoyed a full life and raised a large posterity of more than 100 people loyal to one another.

For me, with the passing of these great men, including my donor, I found strength in prayer, attending Church to be with others who also love God, reading inspiring books, and overall, listening intently to music. The right type of music always opens a conduit to heaven for me.

I was particularly inspired by fellow musician Steven Curtis Chapman, who released an album inspired by his struggle to deal with the death of his own daughter. His son backed the car out of the driveway accidentally injuring the little girl who later was pronounced dead at the hospital.

As Chapman struggled to find hope and understanding from a kind and merciful God he'd proclaim to believe in his entire life, he humbly wrote the words:

It was the day the world went wrong
I screamed til my voice was gone
And watched through the tears as everything
came crashing down
Slowly panic turns to pain
As we awake to what remains
and sift through the ashes that are left
behind

But buried deep beneath
All our broken dreams
we have this hope:

Out of these ashes... beauty will rise
and we will dance among the ruins
We will see Him with our own eyes
Out of these ashes... beauty will rise
For we know, joy is coming in the morning...
in the morning, beauty will rise

Photo: Taking my daughter Eden snowmobiling. Just one of the many amazing things I can do with my hear transplant

Truly, this has been a year of life and death, joy and sadness, miracles and tragedy. I have been grieving not only my brother and grandfather, but I am grieving my donor. Nonetheless, I do believe out of these ashes beauty will rise!

As I’ve taken this journey I’ve come to know other people suffering from congenital heart defects and terminal diseases. I’ve attended too many funerals. Each one has been extremely special, important, as has reaffirmed to me the reality of God and life after death. To say this life is all there is, for me, is madness. No matter what science proves science belongs to God. It is His tool to save mankind and redeem them from a fallen state to a state of eternal happiness.

I am grateful for life. We have no idea when it will be over. We don’t know our time to leave this beautiful world unless we have a terminal diagnosis. As one who was faced with death in 2009, and somehow by the grace of God has been given a new lease on life, I can’t tell you how thankful I am for those of you who prayed selflessly for our family this past year. Truly, 2009 has been one to remember. Our souls have been stretched and our relationship to the Creator has been strengthened.

Photo: My daughter Eden with my brother Brian's daughter Ava

Here’s to 2010, may there be less trials and tribulations and more laughter, silly behavior, and fun memories.

And on a serious note, when your depressed or your heart is aching remember these words from Steven Curtis Chapman which helped me through 2009.

When you think you've hit the bottom
and the bottom gives way
and you fall into a darkness
no words can explain
and you don't know how you make it out alive
Jesus will meet you there.

When the doctor says, "I'm sorry,
we don't know what else to do."
and you're looking at your family
wondering how they'll make it through...
Whatever road this life takes you down,
Jesus will meet you there.


He knows the way to wherever you are
He knows the way to the depths of your heart
He knows the way cuz he's already been
where you're going
Jesus will meet you there.

Photo: Having a great time at Fratelli Ristorante in Sandy, Utah for our family Christmas dinner.

Tuesday, December 22, 2009

Merry Christmas!

This past year has been a roller coaster ride. We’ve experienced loss of family members and enjoyed new life. We’ve been reminded of how precious our time on earth is and how much we mean to each other.

We are humbled to have experienced a modern miracle from God. I survived a challenging heart transplant.

After the surgery one of my Cardiologist said to the Deseret News, “I think Paul's benefiting from everybody’s prayers and his own faith. He’s got me convinced. I’ve known him for the last year, and I certainly can’t find a better explanation.

Yes, it is because of your thoughtful prayers and faith. How can we express our appreciation for you and our friendship? It is impossible.

Truly, the Lord has been very kind.

More than ever you can imagine how happy we are to celebrate the birth of our Savior.

Psalms 147:3 reads “He healeth the broken in heart, and bindeth up their wounds.” This applies to all of us.

This holiday season please know our family loves you!

Tuesday, December 15, 2009

Interviewed by Steve Catoe, Adventures of a Funky Heart!

I was fortunate to do an interview with fellow congenital heart defect survivor and friend Steve Catoe. His popular blog, Adventures of A Funky Heart, provides wonderful insight into the world of congenital heart disease. He often travels to share his own story and provide hope and understanding concerning our chronic illness.

Living for Eden: Paul Cardall, Tricuspid Atresia

By Steve

Recently I had the chance to interview Paul Cardall, an award-winning musician, (His album Sacred Piano recently hit #5 on the Billboard New Age Album charts) Husband, Father, and fellow Heart Warrior. Like me, Paul has Tricuspid Atresia, (along with Transposition of the Great Arteries) and he recently underwent a successful heart transplant. I’ve kept you updated on Paul and his need for a transplant here on Funky Heart!, but you can read his entire story over at his blog, Living for Eden.

Funky Heart! readers have heard me describe my heart defect many times, but every defect is different – and its effects are different, from one CHDer to another. When I asked Paul to describe his heart defects in his own terms, he wrote “Before my heart transplant, I was born with what my parents and cardiologist called a half heart. Only half of my heart was functioning. The other half was either missing or not being used. As I grew into adulthood I learned the serious nature and depth of my congenital heart defect. I was living primarily on a single ventricle instead of two. In addition the major vessels that carry and deliver blood from my heart were swapped.”

CONTINUE THE INTERVIEW - CLICK HERE

Tuesday, December 8, 2009

Nurses in My Life

There are 2.9 million nurses in the United States. My life is blessed because of the nursing profession.

My wife is one of them. For nearly a decade she has tirelessly worked the 12-hour shift occurring on nights, weekends, holidays, and regular days at LDS Hospital and Intermountain Medical Center in Murray, Utah in the newborn intensive care unit working with premature infants.

I’ve seen Lynnette come home so tired and emotionally drained because of concern over one of her patients that I’ve wondered what she’s been doing all day. Because of HIPPA laws she is not at liberty to tell me. However, I know somewhere out in our community there is a family who is better for having my wife in their life during a challenging time period to provide comfort and medical care.


As a professional patient living with a severe heart problem, I have not only fallen in love with and married one of the finest nurses, but I’ve been cared for by hundreds of these folks my entire life.

A couple of weeks ago, I was extremely fortunate with my wife to host a party for the many pediatric nurses who cared for me during my seven-week stay in Primary Children’s Medical Center when I received a heart transplant. They don’t usually see each other out of scrubs, so we enjoyed a wonderful time eating food, talking, and listening to several musician friends play music.

Photo: Some of my nurses from the PCMC CSU Unit

I could not think of a kinder group of people who selflessly serve and accommodate families without much public recognition. I can play a piece of music and an audience of a thousand applauds. Yet, these nurses tenderly and quietly care for individuals and no one knows about it except those involved. Such acts of kindness and service are the miracles distributed in the medical community.

Thursday, November 26, 2009

Gratitude by my father Duane Cardall

Today I am grateful for family. Trials can destroy a family or bring them closer together. Our family is stronger because of what we've been through this past year. My extended family is stronger. I attribute my own success and the success of our extended family to the wisdom and love of my mother and father who've always put us first.

My father, a professional journalist for more than 35 years, was invited to speak at the annual Thanksgiving Interfaith Service in Salt Lake City. I was fortunate to read his speech and loved what he had to say. I thought you would also appreciate his message this holiday season. It's a wonderful perspective into what it means to be grateful.

Thanksgiving Interfaith Service

Federal Heights Chapel

November 26, 2009

by Duane Cardall

Director of Editorials, KSL Broadcasting

Some of you may know that a couple of months ago, my oldest son Paul received a remarkable and life-saving gift. After living 36-years with a very complex congenital heart defect, and at a time when he was failing rapidly after more than a year on the heart transplant waiting list, he received a donated heart.

A lot could be said of that miraculous experience but in the context of our discussion today, one moment stands out in my mind. A couple of weeks into his recovery as we sat in his hospital room I noticed that he was looking at his hands.

“Dad,” he said, “you got any fingernail clippers?”

I didn’t, but I had to ask why.

“My fingernails are growing,” he said.

For 36-years, his nails grew very slowly, presumably for lack of a normal supply of oxygenated blood. His nails were clubbed and only needed trimming every few months. Now, though, after only two weeks with a normal four-chamber heart, his extremities were receiving a normal supply of rich, oxygenated blood and his fingernails, for the first time in his life, were growing straight and relatively rapidly. He needed to trim them.

That is something most of us, I suspect, would never consider. I certainly didn’t until that moment in Paul’s hospital room. Finger nails just grow! They need to be regularly trimmed. It is a fact of daily life and ongoing personal hygiene . . . . Something most of us simply take for granted.

Photo: With My Father a few days ago

It got me thinking. How many things like that in life do we take for granted - things that for one reason or another become so routine that we fail to recognize the wonder of their presence in our lives? And when we fail to acknowledge them, it seems most likely our gratitude for what we have is lacking.

Let’s talk about a few of those things in life we may have a tendency to take for granted, but are deeply consequential, nonetheless, and for which we should be ardently, even constantly grateful, while offering eternal prayers of thanksgiving.

The more thankful we are for little things, or those aspects and elements of our lives that are routinely available, the more complete will be our gratitude for the more identifiable and oft-considered impressive “big” things.

Specifically, let’s talk about the material abundance that surrounds us, the freedom we enjoy in this nation, and the presence of family and loved ones.

Gratitude for Material Abundance

Some years ago I went to a meeting called by the Board of Directors of the Upper Canal Irrigation Company. We own a share of upper canal water and at the time used the water provided to irrigate our garden. I was concerned, as everybody else was that year, about reports that we were not going to be able to get our irrigation water. I recall sitting in the meeting with a couple of hundred semi-irate water users. We were frustrated! We were angry! Summer was heating up, our crops were starting to grow and we didn’t have irrigation water. Never mind that every one of us in that meeting had cold culinary water available to us at the turn of a tap. Never mind that it had only been a couple of weeks since the last rainfall. Never mind that our grocery stores were well-stocked and our gardens were hobbies more than projects born of necessity. We were mad! We wanted our water. We wanted it right then, not later.

As I sat there I thought to myself, “What are you doing, Cardall? After what you’ve been through the last couple of weeks, do you have any right to complain about the lack of irrigation water?”

I had recently returned from a journey to Africa for work on a television documentary about a new humanitarian effort launched by a group of Utahns under the auspices of the Salt Lake Community Services Council to initiate long-term assistance to a group of villages in the nation of Mali.

I hadn’t heard much about Mali prior to that time. It didn’t take me long to learn that Mali is one of the poorest nations on earth. At the time the per capita income was a meager $140 a year and the average person lives only to the age of 39 and where one of every five children dies in infancy, where drought often takes a relentless toll allowing the vast Sahara Desert to advance at an alarming rate.

To visit Mali, I found, was to take a giant step back in time to conditions that are so alien to our perceptions as to defy description. Regardless, let me try to paint a verbal picture of what I remember.

This brings me back to the subject of water. As I sat in that water users meeting that year, images of an incredibly dry landscape popped into my mind. I also recalled scenes around life-sustaining wells that supplied enough of the precious fluid for the people to survive. Let me try to provide an image of what I mean:

It is an image of a woman standing beside a well three or four kilometers from the thatched roof hut she calls a home. By hand she lowers a tiny rubber bucket into a hole 80-90-100 feet down and then with muscles hardened from years of survival labor, she lifts the precious liquid to the surface and pours it into a larger container. Then she lifts the full container to her head and begins the long walk back to her home. Now remember, she is three or four kilometers from her home. She’ll make the journey a couple of times each day just so her family will have enough water to drink and to cook and to survive. Think about it next time you go to the tap to fill a glass, stoop to the sink to wash your face, or turn the knob to start your dishwasher.

Another image:

The woman is back in her village. The heat is stifling and yet there is food to prepare, for her family must eat. She stands at the mortar and pours in a measure of millet, takes the pestle – a long stick about four or five feet long – and with rhythmic precision she begins the tedious process of pounding the grain into edible flour. Tied to her back is a baby and around her feet are a half dozen more. A neighbor will come and together they will pound, and as they pound they sing. This pounding goes on, in between trips to the well, throughout the day. There is no rest for the women of Mali. Theirs is a subsistence level existence, a daily struggle for survival, and with indomitable determination they somehow survive.

Let me give you another image - this one of the men of Mali. There in the field in Sungala Traore and his two young sons, Adama and Daoda. The boys are young, perhaps six and four, though we don’t know for sure. We can’t know their ages because no record was made of their birth. Age is of little concern to the people of Mali just as time is not measured in hours and days but by rainy seasons and by dry seasons. In any case, there is Sungala and his two young sons. Each one of them has an eighteen inch tool called a Daba. It is a short hoe-like tool they use to chop the earth and till the soil. The rainy season, hopefully is approaching, and the fields must be prepared for cultivation. Hour after hour, they bend toward the earth chopping and pounding and gradually making progress. The little one, the three or four year old, works as hard as his brother and father! One wonders if life will ever grant him something more than a continuous quest for food. What a challenging existence for a little child!

The men of Mali are farmers. The Daba is the main farm implement. By hand, using the Daba, they plow, they sow, they weed, they harvest. Year after year, generation after generation, century after century it has been the same in Mali! Think about it next time you open your refrigerator, go to the supermarket, or stop at your favorite restaurant. Let your thoughts turn to the men . . . and the little boys of Mali next time you fire up your lawnmower, your mechanized edger, or your snow blower.

I could go on. My intent is not to make us feel guilty about our abundant lives, but to awaken us to a renewed appreciation for what we have, who we are and where we are. Isn’t it wonderful that later today we’ll sit down to a delicious multi-course meal with all of the trimmings? Isn’t it a blessing that we have plenty of running water, large comfortable homes to shelter us from the elements, beautiful lawns and colorful gardens, automobiles to haul us around, plates and utensils for eating, clothes to wear and shoes to protect our feet and appliances of convenience like stoves, mixers and refrigerators.

You should know that since those early days of the Utah Ouelessebougou Alliance, significant progress has been made in certain areas of Mali. Life in many ways IS improving. Some of you, mostly likely, have donated individually, or through organizations with which you’re associated to the effort to improve life in the villages of Ouelessebougou.

Again, my purpose in offering these images from a journey taken years ago is not to make us feel guilty, but hopefully to stir feelings of appreciation and deep gratitude for what we have. We should never take our privileged circumstances for granted just as I hope and pray our family will never take for granted my son Paul’s growing fingernails.

Gratitude for Freedom

Let’s turn for a few minutes to another aspect of our lives that we sometimes have a tendency to take for granted and yet is absolutely essential to the blessings and overwhelming material abundance that we enjoy in this community, state and nation. I speak of freedom, particularly the kind of political freedom that allows for the blossoming of individual talents and collective excellence.

In August, 1991, Margaret and I were on vacation in Russia. Our itinerary included a cruise down the Volga River from Moscow to Leningrad. It was an invigorating time to take such a journey. Great changes were occurring in the political make up of that part of the world. Institutional communism had essentially collapsed at break-neck speed through the fall of 1989 as a revolutionary wave swept through Eastern Europe. The tearing down of the Berlin Wall symbolized what was happening. That was 20-years ago this month.

On our vacation journey not long after those stunning and momentous, and totally unexpected events, we found ourselves cruising toward Leningrad when we received word that communist hardliners were attempting to take control of the country from Soviet president Mikhail Gorbachev. Needless to say, we worried for our safety. The uncertainty and fluidity of the situation had all of us deeply concerned, yet as events unfolded it became another of those life-enriching experiences for which we will always be grateful.

After a restless night on our cruise ship, and as we approached the dock in Leningrad, what we witnessed allayed some of our concerns. Though the Soviet Union was in turmoil, there on the dock to greet us was a brass band . . . and the song they were playing: “God Bless America.” It seemed they wanted to make us feel welcomed.

After a lot of discussion by those responsible for our tour, it was decided that the situation in Leningrad was stable enough that we could go ahead with our bus tour of the city. 15 or 20 minutes into that tour, the bus Margaret and I were on approached Hermitage Square, where we saw tens of thousands of people gathered for what appeared to be a demonstration. The journalist in me overwhelmed the tourist side of me and armed with a small borrowed camcorder, and much to Margaret’s dismay, I jumped off the bus and proceeded to go to work to document the story of the rebirth of freedom in Russia. I later learned I was the only western journalist in Leningrad at the time. My reporting received widespread attention.

Let me try to paint a verbal image. There on the square where the Bolshevik Revolution was launched in 1917 were tens of thousands of Russians demonstrating in support of the reforms recently implemented by Gorbachev. And they did it in the face of some danger, for lining the streets approaching the square were scores of military transport vehicles filled with armed soldiers awaiting the word to march in and clear the square.

More could be said of what we witnessed at that location, but move with me, if you will, to another of the great public squares in Leningrad – or St. Petersburg as it is now. We had heard that much was also going on in St. Isaac’s Square, so I made my way there to witness something most remarkable. It was as if the good freedom-longing citizens of that magnificent historic city were preparing for war. Each street leading to the square reminded me of the famous barricade scene of Les Miserable, for the citizens had erected crude barricades from whatever they could find – desks, mattresses, and chairs . . . and whatever else they could carry from surrounding buildings. It was their intent, if needed, to stand up to any government troops sent their way, as futile as it would be.

What I will never forget, though, were the small groups of men marching through the square in a form of short-order drill, in traditional military fashion. I walked up to one of the groups with my camera rolling and shouted: “Does anyone speak English?” One man said yes and broke from the ranks to speak with me.

“What are you doing,” I asked.

“We are training and preparing to fight,” he replied.

“But you have no weapons,” I said.

And I’ll always remember the look in his eyes and the fire in his voice as he said pumping his fists, “But I have these and I will fight.”

“What are you fighting for,” I queried.

His reply was forthright and powerful. He said simply, “Freedom.”

It was a stunning, reflective moment. Here were a people who had been oppressed for decades, but who recently had tasted the sweet opportunity of freedom and they didn’t want to lose it. They were willing to put their lives on the line to preserve what they had just begun to experience.

So what does this have to do with us on this Thanksgiving day?

Sometimes as a people, I fear, we become complacent about the freedom we have enjoyed in this nation for the past 233 years. It is another of those aspects of our lives that we tend to take for granted. Of particular concern is the trend toward secularism that engulfs our nation and a growing reticence to acknowledge the Providential and spiritual underpinnings of what the Founders gave us in 1776 and beyond.

I fear the consequences if we get to the point in this nation when we have become so dramatically secularized that a majority of the citizens no longer acknowledge the hand of God in the nation’s establishment, and turn from thanking Him profusely for the freedom and abundance we enjoy.

We must never forget, as George Washington proclaimed in 1789 “to acknowledge the providence of Almighty God, to obey His will, to be grateful for His benefits, and humbly to implore His protection and favor.”

Let that be a part of our prayers of thanksgiving later today.

Gratitude for Family

Let’s turn now to another aspect of our lives that we too often take for granted, and I speak of those who are nearest and dearest to us – our families. I’ll beg your indulgence in allowing me to become a bit personal here. I do it only because Stan Parish suggested that I do.

Our family has had a rather stressful year. In saying that, I realize that most families face a steady stream of challenges in one way or another, and that others have experienced things far more traumatic than us. I empathize with whatever it may be that you and yours are struggling with. At the same time, I firmly believe there are great, powerful and overwhelming blessings that come through the crucible of adversity . . . and the burdens associated with those challenges can be lessened dramatically through acknowledging those many blessings, focusing on their presence in our lives and by regularly offering genuine expressions of gratitude and thanksgiving to God for them.

Of course, it is difficult, if not impossible to say that our son Brian’s tragic death in June was a blessing. The way it happened, the publicity it generated and the grief it caused are anything but blessed. It was especially difficult for his young widow and his two-year-old daughter. But then I think of the blessings that have filled our lives since that sad day, and my soul is overwhelmed with feelings of gratitude for the reality of a loving God who doesn’t desert His children in times of trial.

Photo: Dad holding my brother's baby girl Bella Aspen Cardall

-Without Brian’s death we never would have experienced the overwhelming outpouring of love and support we felt from extended family, neighbors, friends, colleagues and many, many strangers. Through cards, emails, phone calls and visits we learned how broad our circle of loving support is . . . something I never would have expected or anticipated. What a blessing!

-Through Brian’s death our family coalesced and unified in ways that likely never would have occurred otherwise. As a father, I will always be grateful for the tender expressions of love that I observed being shared by his siblings and their children, my grandchildren. What a blessing!

-With his death, I came to realize that I had taken many of my son’s accomplishments for granted. Through heartfelt eulogies, tributes and other less formal expressions, I learned of his extraordinarily keen intellect and the monumental contributions he was making as an innovative scientist toward improving our world. What a blessing to have that knowledge.

Photo: Hitting a bucket of balls a few days ago with my dad

-Through Brian’s death, our family gained renewed understanding that mortality is indeed fleeting, and that we are all part of some “great eternal plan.” It gave us special appreciation for what happened on Calvary and for the promise of life beyond this mortal realm, as evidenced by the empty tomb. What a blessing!

-Most certainly among the blessings we count, is the presence of Brian’s little daughter, born three months after his death. Through her, we have an extension of him, and that is a blessing for which we will be forever grateful.

I want you to know that where God taketh, he also giveth. One of the reasons our expression of gratitude this thanksgiving will be overflowing is because of the miraculous extension of life of our oldest son, Paul. I told you about his fingernails. As we approached his heart transplant in September, and because of the severity and complexity of his congenital heart defect, we were fully prepared for Paul to be in the hospital for a month or two following his surgery. In fact, the medical team suggested we would be fortunate to have him home by Thanksgiving. Yet, he was released from the hospital just two weeks following surgery and his recovery is proceeding at a remarkably accelerated rate. He is hiking and biking and playing vigorously with his four-year-old daughter. The other day he and I went and hit a bucket of golf balls. He’s back at work as a creative musician and recording artist preparing for his “Celebration of Life” concert at Abravanel Hall in February.

May I witness to you in all humility that miracles do occur! They are real and remarkable and resoundingly wonderful.

Never cease to give God thanks for such providential involvement in the affairs of man. Never take for granted the presence of loved ones in our lives, nor the freedoms that abound in our lives, and have a constant, unwavering attitude of gratitude for the material abundance that so dramatically distinguishes our lives from 90-percent of the people living on this earth today.

Consciously “counting our many blessings” as the song says, and expressing gratitude for them can be remarkably therapeutic. The offering of a genuine prayer of thanksgiving tends to take our mind off of our personal woes and allows us to focus more positively on those things in our lives that are uplifting and good and beneficial. Moreover, it puts us in a state of mind to reach out more consistently to others who may be in need of having their burdens lightened.

Photo: My father putting his arm around his grandson Colby Child after his team experienced an upsetting loss in the finals.

In closing, I’ve been thinking of an experience I had some years ago when I traveled to England to document the first foreign journey of President Gordon B. Hinckley after he became President of The Church of Jesus Christ of Latter-day Saints. In the course of that weeklong adventure, we went to a village north of Preston for a brief visit with one of President Hinckley’s former missionary companions. It was delightful to watch those two old friends reminisce about days gone by.

As we were about to leave, Bob Pickles said to Gordon Hinckley, “I don’t know how you do it, all of this travel and activity at your age,” I’ll always remember President Hinckley’s reply. “I’ll tell you what you do Bob. You go to bed each night, but you be sure to get up in the morning.”

“Is that what it is,” said Bob.

“That’s what it is,” replied Gordon.

And may I add, that when you go to bed each night offer up prayers of gratitude for all that you’ve been given . . . and be sure to get up the next morning with an eye to doing good and enjoying the profound and unceasing blessings of a new day.

Friday, November 20, 2009

A Great Song for a few Rough Days

My brother Brian's death is back in the news. You can imagine it's hard to continually re-live circumstances surrounding Brian's death when it's on the front page of most newspapers.

I admire my parents and my sister in law for their righteousness and spirit. Their heart is in the right place. We've grown closer together this past year. We've experienced God's miracles and the heart-ache of loss.

I believe we have a small glimpse of what my donor family must be experiencing. What comforts me is that I know their loved one's heart is still beating in a good man who'll never do anything to dishonor the gift of life.

With these thoughts and feelings I want to share with you the words of Steven Curtis Chapman who wrote about his own struggle in dealing with his daughter's tragic and untimely death. I believe his words with all my heart.

Jesus Will Meet You There
by Steven Curtis Chapman

LISTEN TO THE SONG

When you think you’ve hit the bottom
And the bottom gives way
And you fall into a darkness
No words can explain
You don’t know how you’ll make it out alive
Jesus will meet you there

And when the doctor says “ I’m sorry, we don’t know what else to do”
And you’re looking at your family
Wondering how they’ll make it through
Whatever road this life takes you down
Jesus will meet you there

He knows the way to wherever you are
He knows the way to the depths of your heart
He knows the way cause He’s already been where you’re going
Jesus will meet you there

When the jury says “guilty”
And the prison doors close
The one you love says nothing
But just packs up and goes
The sunlight comes and your world’s still dark
Jesus will meet you there

When you failed again
And all the second chances have been used
And the heavy weight of guilt and shame
Is crushing down on you
And all you have us one last cry for help
Jesus will meet you there

He knows the way to wherever you are
He knows the way to the depths of your heart
He knows the way cause He’s already been where you’re going

When you realize the dreams you’ve had
For your child won’t come true
And when the phone rings
In the middle of the night with tragic news
Whatever valley you must walk through
Jesus will meet you there
He will meet you there
Jesus will meet you there

www.stevencurtischapman.com

Tuesday, November 17, 2009

Meeting Senator Hatch & Saying Goodbye to Grandpa

Last Thursday, I was fortunate to meet with Senator Orrin Hatch of Utah to discuss congenital heart disease and a bill (S-621), The Congenital Heart Futures Act, which has been read twice in the Senate and referred to the Committee on Health, Education, Labor, and Pensions.

Senator Hatch is a ranking member of this committee and has the power to make great things happen for education and research concerning the #1 birth defect in our nation. There are 1.3 million Americans with CHD. He was very cordial and friendly. I had a confidence boost when his assistant Annette said she enjoyed one of my albums. I told her she has good taste! (LOL) In addition, we talked about the Senators music since both of us have worked with a few of the same people in the music business.

I invited Dr. William McDonnell to attend the meeting with me. He is an adjunct professor of law and Director of the Center for Children’s Environmental Health Law and Policy at the University of Utah. Although he is an attorney, the doctor spends most of his time working in Primary Children’s Medical Center’s E.R, when he’s not competing in triathlons. Dr. McDonnell is a great guy and has dedicated his life to improving the quality of health care for children in our nation. He is also married to my adult congenital heart doctor Angela Yetman. I’m sure he has been well informed of the challenge children with CHD face as they transition to adulthood. My own personal transition was challenging and at times I felt lost within a system doctors had no control over.

A section of the bill that concerns me for the rising generation of children with CHD is the following phrase:

“Less than 10 percent of adults living with complex congenital heart disease currently receive recommended cardiac care. Many individuals with congenital heart disease are unaware that they re quire life-long specialized health
surveillance. Delays in care can result in premature death and disability.

“The estimated life expectancy for those with congenital heart disease is significantly lower than for the general population. The life expectancy for those born with moderately complex heart defects is 55, while the estimated life expectancy for those born with highly complex defects is between 35 and 40.

“Despite the prevalence and seriousness of the disease, Federal research, data collection, education, and awareness activities are limited."

There is no federal funding to educate families affected by congenital heart disease, the #1 birth defect. I want parents to feel assured there is a clinic and pediatric thoracic surgeons available in every state when their children become adults. Fortunately, my community has a wonderful adult CHD clinic under the direction of Angela T. Yetman. We still had to overcome some challenges getting at pediatric thoracic surgeon to operate on me as an adult. I believe this will be worked out in time so others have no hurdles to jump over. If you want to help make this happen in the lives of more than 1.3 million people with CHD click here to let your state Representative and Senators know. Their office reads these letters and your voice will be heard. It would also be interesting to have you leave your comments here and I'll forward them onto the Senator's office.

When we arrived in the Senator’s office Richard Piatt of KSL News was interviewing the Senator about the recent health care bill the Democrats passed through the House with no Republican support. The Senator's personal assistant asked me if I mind being filmed with the Senator? I made it clear I was not there to discuss health care for Americans. I was there to talk about a separate issue that just happens to fall under the health category. Richard was very kind. I had seen him in the lobby and he asked if I would comment on congenital heart disease. I believe the story KSL ran on the 10 o’clock news made it clear why I was there even though it was interwoven into the health care.
Here is the link to watch the story.


My Heritage and Saying Goodbye to Grandpa Layton

Publicly, other than voting in a booth I have never been very political. I usually share opinions with family and a few trusted friends. I can tell you how grateful I am to enjoy the benefits of living in America.

All of my ancestors are immigrants from Europe and Canada. Our ancestors made this country special. We carry with us their names and some traditions. Are we living up to our heritage?

My great great grandparents Mary Joy and Edward Snelgrove were in trouble with immigration laws in the late nineteenth century. They settled in the Utah territory as Mormon pioneers from England and never filed their paperwork for citizenship. They didn’t know how to do it. Thankfully, federal officials worked with them and they were able to stay. The Snelgrove's were hard working people who created jobs for other folks. Edward started one of the first piano stores in the Salt Lake Valley.

From Mary Joy and Edward came my grandmother Mona Snelgrove Layton, the sweetest and most faithful woman on earth. She grew up struggling through the depression and understood a time when our country was in really big trouble. It seems like back then honesty was an attribute everyone cared about having.

We celebrated my grandfather’s legacy this past Saturday at his funeral. He always taught us, "Be honest. Your integrity is all you have." Grandma cared for him almost 70 years and raised a wonderful family who make a wonderful contribution to society.

Photo: My Grandfather, Captain Alan W. Layton, The United States Army

Grandpa was from “The Greatest Generation” who fought in World War II and
was sent to France as a commanding officer and was in the midst of intense military action. He was seriously wounded in the Battle of the Bulge in 1945 and returned home a decorated veteran, receiving the prestigious Purple Heart.

At the graveside service members of our nation’s military paid tribute to my grandfather folding the American flag and handing it to my grandmother. One soldier played taps as the snow fell like small white feathers from heaven. Buried with my grandfather are a few of the shell fragments in his finger and leg from the War.

I love this country. We need to carry the torch passed to us from the greatest generation. They stood for hard work and sacrifice. I don’t have answers to solve our national's problems but I believe we can work together to work miracles.

Photo: Folding the flag at my grandfathers' graveside service

I appreciate Senator Hatch taking the time to meet with me to discuss congenital heart disease. He met with many people on that day and throughout the week discussing a variety of issues. Some media suggest congressmen and women are home for the holidays and doing nothing. But, I admire Senator Hatch, my other state Senator Bob Bennett and Representative Jim Mattheson for using their time to meet with the people they represent. I was honored to have a rare opportunity.

Overall, every nation needs responsible, creative, and honest men and women to lead and citizens to encourage our leaders. "
The supreme quality for leadership is unquestionably integrity. Without it, no real success is possible, no matter whether it is on a section gang, a football field, in an army, or in an office," said Dwight D. Eisenhower.

Tuesday, November 10, 2009

My GrandDad

It is not a coincidence America is celebrating Veterans Day the same week my grandfather, Alan Layton, passed away. Leaving behind posterity of more than 100 people Grandpa is one of the last few surviving heroes to defend our nation from Hitler and save Europe from utter destruction in World War II. Certainly my grandfather was a major contributor to what former NBC News Anchor Tom Brokaw called, “The greatest generation any society has ever produced.”

Two months ago as I recovered in the pediatric intensive care unit after my heart transplant my grandparents came up to visit. My grandfather had been experiencing dementia in the last few years and occasionally forgot where he was although he acted like he knew what was going on. This is the difficult part in losing a grandparent, watching them grow old and seeing their vibrant spirit fade. He sat in a rocking chair holding his cane at the foot of my bed. I still had most of my tubes in and out of my body. My grandmother was so enthused by my pink lips she was overcome with emotion. She rubbed my feet at the end of my bed and was saying, "Look at your beautiful color." Meanwhile, my grandfather didn't look to happy she was rubbing my feet and quipped, "Don't rub that man's feet!" We laughed and reminded him she was taking care of her grandson.

My Grandfather’s own mother implanted in his heart a love for God and for other people. All you need in your life is a mother who loves you and you have within you the power to become a giant among men. His blood type was a model for his life “B+”. He was an optimist and believed anything was possible.


Aside creating one of the most successful construction companies in the Rocky Mountain region, Layton Construction, my grandfather spent most of his time with my grandmother building up a strong family loyal to one another.

When I was really young my grandparents bought a 2-acre garden with an intended purpose. Each Saturday grandpa gathered the family and taught us how to work the earth. Whether it was tilling, weeding, irrigating, planting seeds of all kinds Grandpa was busy teaching valuable principles of hard work. We enjoyed the blessings of our labor with plenty of fresh fruit and vegetables to circulate among our separate neighborhoods. He was teaching us the benefits service.

Having grown up in the depression and working since he was a child, Grandpa was deeply concerned about people going into debt. He taught, “Pay yourself. You worked for your money. Let your money work for you.” This meant save your money, put it in the bank, and let the interest work to make even more money.

Photo: With my grandparents after our marriage on April 11, 1997 - According to my LDS Faith the person marrying us dresses in white a symbol of purity and of God.

Twenty years ago President Gordon B. Hinckley of The Church of Jesus Christ of Latter-Day Saints gave my granddad authority to marry couples in our temples. My wife and I were fortunate and blessed to be married by granddad in the beautiful Salt Lake City Temple. During our marriage ceremony my sweet grandpa gave us sound advice. He said, “Never go to bed angry at one another. Laugh if you have to. Work it out. You need to know what is in each other’s hearts. Tell each other everything.” He counseled us to make God a partner in our relationship. “The good Lord will help you in hard times and bring happiness to your home.”

The morning I was born on April 24, 1973 when my parents were told I probably would not make it because of a congenital heart defect my father picked up my granddad and headed to the hospital. Together they took me into a small room shortly before surgery and held a special prayer with all the faith they could muster. That blessing, that quiet humble prayer, has been vindicated time and time again.

In lieu of my brother’s tragic death on June 9, 2009 our family is grateful Grandpa now joins Brian in the afterlife. What a reunion! I can only imagine my brother anxiously awaiting his arrival with open arms into paradise. I’ll miss my grandfather. I know he'll care for my brother and thousands of others who need strong men of courage, integrity, devotion, and love.

The grief I'm experiencing is that an era has come to an end. The sadness is in the knowledge that none of us will ever be little again to enjoy the little things like working in the garden side by side with granddad, getting an ice cream out of his hands, fishing the Grey's River in Wyoming, or listening to his stories of building things, war, or the gospel of Jesus Christ.

Photo: My brother Brian holding his daughter Ava sitting with Grandpa

I’m grateful for this wonderful man, my granddad, Alan W. Layton, who devoted his life to creating nostalgic memories, which brought us closer together as a family and closer to God.

Tuesday, November 3, 2009

Thumbs up on each biopsy!

Photo: Me and Eden dressed for Halloween, Granny was in paying for Gas. Can Cats drive?

After a fun Halloween weekend, Monday morning I had my fifth biopsy since receiving my heart transplant 56 days ago. So far all of my lab results have been wonderful. There are hardly any signs of rejection, if any. In other words, the heart I received is a perfect match, extremely strong, and my body is receiving the organ very well. I am fortunate, blessed, and grateful to God.

What is a Biopsy?

My myocardial biopsies are performed in an operating room known as the cath lab by a cardiologist. In this test a small amount of tissue is removed from the internal lining from the heart for testing. It is used to help detect rejection of the new heart after a heart transplant. A long, flexible tube, called a catheter, is inserted into a vein and threaded into the heart's right artrium through the tricuspid valve into the right ventricle. The doctor can guide the catheter by watching its movement on a monitor showing an X-ray image of the area. The tip of the catheter is fitted with tiny jaws that the doctor can open and close. Once the catheter is in place, the doctor will take several tiny snips of muscle for microscopic examination.

What does it feel like?

Most adults and some teenagers choose to be awake for the procedure since most sit still and can endure the tugging.

Because I am doing this in a children's hospital I still have the luxury of requesting anesthesia. My first biopsy was very painful because of some nerve pain so we decided to use anesthesia the next time. Unfortunately, I have some reaction to my anesthesia which seems at times more challenging than the transplant did. For several minutes afterward I feel like I’m in deep water trying to reach an unattainable surface. However, this passes. And I remind myself no matter how hard it is in that moment of despair all things pass. Eventually, it’s over and I feel renewed and happy to be alive. I don’t like talking about the hard moments because I’m an optimist and try to see things from a long-term perspective.

My team and cardiologist have been extremely professional and kind in helping to ease the pain.

As time goes by and there is no sign of rejection my weekly biopsies turn into bi-monthly, monthly, every three months, six months, to every year. At this point, if all goes well I won’t need another one until after Thanksgiving.

I often think of the words of Joseph B. Wirthlin who put suffering in perspective:

“Each of us will have our own Fridays—those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays. But I testify to you in the name of the One who conquered death—Sunday will come. In the darkness of our sorrow, Sunday will come. No matter our desperation, no matter our grief, Sunday will come. In this life or the next, Sunday will come!”