Hope for Patrick

Congenital disorders have a wide variety of birth defects. One such serious problem is "short gut syndrome" meaning, the complete dysfunction of a large segment of bowel or simply they're missing most of their intestines.

I met Patrick Hoopes, an adorable little boy with big brown eyes and an infectious smile, while I was staying as a patient in the Primary Children's Medical Center waiting for my heart transplant.

When his parents Emily and Brian Hoopes adopted Patrick they knew he had some medical challenges, but did not know to what extent. They've loved this boy from the first time they saw him and knew he would be their son.

Doctors informed the Hoopes that Patrick needs an intestinal transplant or he will not live more than a few years. His family are traveling back and forth to Seattle Children's Hospital from Salt Lake City where Patrick has been listed for an intestinal transplant.

I promised the family that if I made it out the hospital alive I would do what I can to help. This is why I'm hosting a benefit concert for Patrick. It's a rare and unusual situation and I'm thrilled to be a small part of his amazing life.

For more information and to purchase concert tickets visit:
http://www.showclix.com/event/9223/

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.

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.

In Review: Sharing my Story with CMN Organizers

I was invited by Primary Children's Medical Center to share my story with the folks responsible for organizing The Children's Miracle Network activities, telethons, and getting charitable funds for some families who qualify for financial help. PCMC hosted the national conference in Salt Lake City, Utah at the Marriot. The organization usually hears from a child.

Children’s Miracle Network Speech

Tuesday, October 6, 2009

My name is Paul Cardall.

I’m a husband and father of a young toddler. I’ve lived with a severe congenital heart defect for 36 years. Thanks to a dedicated team of professionals, my parent’s optimism, and the grace of God I've enjoyed quality time with only a single ventricle.

I’ve been in and out of Primary Children’s Medical Center my whole life.

(Photo: Primary Children's Medical Center)

In fact, in August 2008 my heart was failing so severely I was listed for a heart transplant. Because of my enlarged heart and complicated anatomy doctors and statistics suggested I might not survive the surgery. My wife and I were quite discouraged.

Either way, it was a mountain I was willing to climb.

We were faced with an unknown future. You can imagine our conversations that happened late in the night after we tucked our daughter into her bed about the “what if?”

(Photo: Looking out my hospital window. By Jeffery D. Allred, Deseret News)

Other medical centers had little experience in caring for an adult with a rare congenital heart defect. They were well versed in heart failure, various cardiac thoracic procedures, and the usual heart attacks but my unique anatomy required the attention of pediatric thoracic surgeons and specialists. This would not be your typical heart transplant.

As part of this innovative plan, I would be receiving my continued care at Primary Children’s Medical Center here in Utah.

As an adult in a Children’s Hospital my experience allowed me to gain a rare and special perspective into the medical care of a child.

My decline in health has been a challenging year of learning how to adapt to our new situation.

In addition to my health, more stress came this past summer to my family when my younger brother, Brian Cardall, who suffered a severe anxiety episode outside a small Utah town, was tragically killed after being tasered twice by a police officer.

(Photo: My brother Brian holding his daughter Ava)

As I was contemplating my own mortality my brother’s sudden death was extremely ironic. This event fueled my passion and will to live.

My brother was a well-published scientist. He was a mountain climber and understood each of us have mountains to climb. I know he would want me to “never give up!”

Through this ordeal, our family came to understand the hard sacrifice that would be made by another family whose loss would give me a second chance at life. Their loss would give my daughter a father, and my wife a husband.

After a year waiting for a heart, my transplant team urged me to check into the children’s hospital to stay until a heart would become available because my organs were failing and time was running out.

We were hoping a heart would become available. I did this. Immediately, my medical team began feeding me with nutrients and adjusting medications.

Living in a children’s hospital I’d get strange looks by young kids and parents wondering why the old man with oxygen and IV pole was in their hospital. Feeling bad for me my kind nurses put a name-tag on my door with the appropriate title, “Mr. Benjamin Button” in reference to a recent Hollywood movie about an old man who grows young.

If anyone looked at me funny or asked what I was doing there I jokingly told them I was a hospital critic reviewing the children’s hospital and wondered if they had any suggestions.

I think I became an expert critic as I witnessed first hand these kids, these cute little kids in their hospital gowns with IVs, teddy bears, and nurses pulling them around in their wagons to x-ray at 6am each morning.

(Photo: Playing the piano with one of the patients at PCMC. Phot by Jeffery D. Allred, Deseret News)

I was deeply affected by the amount of ill children who I saw fighting for their lives.

When I heard a child cry, naturally as a father, I desperately wanted to know what I could do to help alleviate their pain and fears. Nurses weren’t able to tell me what was going on so I was left to wonder, hope, and pray for that child.

A few are so helpless and hurting. Several are scared and some alone in their new environment.

Most parents who spend time with these kids are also feeling alone. And yet, they find strength in their children who seem to be teaching them principles of hope, faith, patience, and love.

I remember being there myself as a child and having the same emotions.

However, in my own experience I could not think of a better place and a kinder group of folks 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 a child and no one knows about it except those involved. It’s beautiful.

These children bring a special feeling to the medical center. They are the angels who walk the halls and their spirits alone create a comforting feeling for those who interact with them.

I remember a small child in a hospital gown in the playroom with her father. She put down her crayons, looked at her dad and said, “Is it ok if I cry?” Her dad looked down and quietly said, “I don’t want you to cry.”

How could I complain about my own situation? These kids have so much to teach us about our own pain and suffering. And yes, it’s ok to cry.

(Photo: Kissing my daughter goodnight before my heart transplant surgery)

I have been blessed with 36 years of memories. I have experienced growing up, attending college, traveling, serving a two year mission for my church, falling in love, getting married, and having a beautiful girl who we named Eden.

After being listed for nearly 400 days on the heart transplant waiting list, the call finally came. A heart had become available! I had until the next morning to prepare for difficult surgery.

My family gathered. We shared memories of the past year and our spoke of our hope in the future. I knew everything would be ok. I was nervous. This experience humbled me and I was prepared for the worst and hoped for the best.

Still, even if I survived the initial surgery because of my enlarged heart, surgeons suggested I would be recovering for months in the pediatric intensive care. Possibly, thanksgiving or Christmas would be my homecoming.

Ladies and Gentlemen, the surgery was beautiful. Chief pediatric thoracic surgeon A.K. Kaza, who is my age I should add, performed a beautifully orchestrated miracle. He took my old heart out, which I compare to an old rusty pick up truck and put in a beautiful new sports car. When he turned to grab the paddles to shock my heart or jump-start it he turned back to see that new heart was pumping a beautiful sinus rhythm as though it was meant to be.

Two weeks later, after a miraculous recovery, I went home to my daughter and wife to enjoy a second chance at life.

Exactly four weeks ago, at this very hour, I was receiving my heart transplant. My family sat in the waiting hoping for the best.

Needless to say, I feel amazing. I recognize blood flowing through me for the first time. I have endurance. I’m rearing to go. Like the sports car inside of me, I’ve got the top down and I love the ride.

All of us in this room are busy climbing mountains. In your efforts to give children a second chance at life, I applaud you. I thank you. I admire your work. You are the angels of the hospital who provide miracles for other children like me who need help to go home to a family or for a family to find comfort during a difficult time of loss.

(Photo: Holding my brother Brian's new daughter Bella Aspen Cardall)

In closing, I don’t know why God gave me a second chance or why my brother and so many others, young people, kids, have gone beyond?

What I do know, is that I see things more clearly now. My soul has been stretched. I am a better man.

I have been blessed to live 36 years with a defect, which has reminded me daily that this life is not forever. We all grow old and should cherish each day we have in this beautiful world.

Our family should always come first. Because in the end all that really matters are the ones you leave behind.

Home Is Where The Heart Is

Leaving through the hospital doors with my arm around Lynnette was breath taking. Was I anxious to get home? I still don’t know. Shock is the word I might use. I could not believe I was going home.

Picture: (Top- Becki was one of the many nurses who cared for me. I loved each nurse who dealt with the old man in the kid's hospital.)

Primary Children’s Medical Center had become my home and family. Leaving them behind was an interesting emotion. Of course, patients continue to cycle through their care.

Whatever joyous celebration we experienced in my recovery, the nurses caring for me signed off their responsibility and went back to work caring for the many sick children still fighting for their future. And yet, there is not much public recognition for these quiet and faithful employees who bless so many lives.

After picking sweet Eden up from a cousin’s home we drove up our street noticing the many pink and red heart shaped balloons my sister Carol had placed all over our front yard on trees and bushes. I was proud to know our neighbors knew this was a great day in our lives.

Picture: (Middle- Barb Wright began caring for me in 1975. She has helped thousands of cardiac kids in the EKG lab at Primary Children's Medical Center)

Our neighbors had mowed the lawn and trimmed everything. They even picked the tomatoes they had planted in a garden they helped create many months ago. I had told Lynnette I was looking forward to eating those tomatoes not knowing if that would really happen.

I expected to be home shortly before Thanksgiving or Christmas. My anatomy and symptoms were beyond anyone’s true comprehension. And we planned for the worse while trusting in God and his ability to orchestrate the events of our lives.

We have a quiet home on a peaceful street. Walking through our front door and observing the blessings poured out upon us from all our hard work over the years was humbling. Peace permeates the small rooms and strength fills the walls. I attribute this to Lynnette and her divine nature. She's created something beautiful.

This has been our refuge. We've had many challenges and decisions to make therein which would effect our future. There will be roads to take, and mountains to climb in our future. Amidst our future joy, celebration, and happiness, we will face heart-ache, pain, and grief. However, I find great comfort in knowing the God of Heaven is a loving and kind Father who will help guide us as we seek Him out. I'm reminded of these words from Harold B. Lee, “The most important work you and I will ever do will be within the walls of our own home.” Our souls will stretch and our wisdom will increase from our experiences and we will be that much more prepared to strengthen others who are going through hard times.

And might I add, if you are not a religious person or doubtful of such strong statements I make about God I encourage you to cling to goodness and those who want to be good. Serve them and befriend them. They will lift you. They will buoy you up when life gets dark and challenging. It is through their goodness that you will feel the literal arms of God around you.

Picture: (Bottom Right- Back home with the family)

Spending a quiet evening at home with my daughter and Lynnette was something special and nostalgic. I think Eden went through 4-5 outfits until we were able to get her off to a ballet/tap dance class in her cute pink tutu. Of course, she kept touching my chest to feel my heart. And from time to time with a vulnerable sweet smile she’d ask, “Dad, hold my hand?”

And now more than ever I know home is where the heart is. And with tears of gratitude in my heart I know I’m home to stay.

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As much as I enjoy maintaining livingforeden.com there will be one more entry and a short video of our journey. Then this blog will be closed until after the holidays. I’ll be spending time with family, compiling my message into a book, and preparing for a long journey ahead advocating the growing needs and education of those living with congenital heart disease, as well as organ donation.

Please visit me at my music site and sign up for the newsletter or go through the various options of finding me on twitter, facebook, youtube, and other places. I would love to keep in touch.

In The News

Video Courtesy of KSL.com

______________________________________

Paul Cardall recovery a 'miracle'
Heart recipient comes home far earlier than doctors had expected

By Carrie A. Moore
Deseret News
Published: September 10, 2009
Photo by Jeffery R. Allred, Courtesy of The Deseret News

As pink and red heart-shaped balloons bob in the breeze outside their home, Paul and Lynnette Cardall are examining prescription bottles inside.

There's a new heart beating in Paul's chest. Lynnette's heart, for the first time in more than a year, is finally beginning to rest easy.

The Utah musician and his wife came home from the hospital on Wednesday, weeks before anyone had believed would be possible after Paul's heart transplant two weeks ago at Primary Children's Medical Center.

Doctors had told them it would be five to six weeks before he would be strong enough to unplug all the oxygen and IV lines so he could walk away a free man, but as he has done so many times before, Cardall surprised them all.

Before his recent surgery, the 36-year-old husband and father was the oldest Utah patient with his specific type of congenital heart disease to have survived to his age without a transplant. To have him home so soon, and without experiencing any major complications, "is a dream come true. It's just a miracle," Lynnette Cardall said.

Before leaving the hospital, the couple was shown Cardall's old heart, "a football-sized" organ he said he had been lucky to live so long with, considering it was only about half-functional. He said that as he held a portion of it in his hands, turning it over and over and examining the stitches from past surgeries, that was the moment when he "truly understood that somebody else is clearly in charge of our lives."

Future medical students at the University of Utah will hold his old heart in their hands also as a learning tool to help understand congenital heart disease, even as Cardall continues on a series of anti-rejection drugs to keep his body from rejecting the new organ.

READ THE ARTICLE

Patrick Needs Our Help!

During the 7 weeks I spent at PCMC I became familiar with a lot of different children and their unique experiences. One such family is the Hoopes. Brian works with my father. When my brother died, this young couple stood in line for 2 hours holding Patrick in their arms to pay their respects. They are an amazing couple and deserve our attention as they place their faith in the will of the Lord and hope to save Patrick's life.



Produce for Patrick: Neighbors help raise funds for boy's transplant
By Katie Drake - 09/23/2009

[Photo: Ten-month-old Patrick Hoopes at Primary Children's Medical Center with his parents. (Trent Nelson / The Salt Lake Tribune)]

Taylorsville » It started with pear trees.

Tifanie Pulley had noticed lots of them in her Taylorsville neighborhood, all producing unused fruit.

Pulley decided to harvest the surplus to raise money for a worthy cause -- an intestinal transplant for Patrick Hoopes.

Patrick, who turns 1 on Halloween, was born with only a tiny portion of his small intestine and about one-third of his colon. He can't absorb nutrients from food and must be constantly fed through an IV. Ingesting food that way slowly destroys Hoopes' liver.

His medical problems didn't deter Brian and Emily Hoopes from adopting Patrick when he was 8 days old. They instantly fell in love with his vibrant dark eyes and flirtatious personality, and so did their neighborhood.

To help raise the estimated $500,000 needed to obtain Patrick's transplant, neighbors are working to raise funds any way they can, like Pulley and the pears.

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