Congenital Heart Disease & Your Cardiac Kids

Please help me spread awareness of congenital heart disease. Here is a short "rough draft" video featuring more than 100 children afflicted with a heart problem that may require medical attention throughout their life. Many are from the Utah area. There are probably a few errors in this video. I did the best I could with the information provided to me. If you know of any errors please e-mail me the correct information so we can make a final version. Send them to paul@stoneangelmusic.com




Link to the CODE to embed on your blog

In addition, we are still in the process of making a video for Gracie's Theme which will tell one families story and fight with CHD. We had a deadline and more people responded than I could imagine. So we made this wonderful video featuring all of the children and a few adults who contributed. I'm sure we'll make future videos featuring other children not appearing in this particular piece.

Interesting Article

Heart heals itself after transplant
British girl had donor organ implanted onto her own to give hers time to recover

By Maria Cheng
Photo by Barry Batchelor, Associated Press

Associated Press
Published: Monday, July 13, 2009 9:54 p.m. MDT

LONDON — British doctors designed a radical solution to save a girl with major heart problems in 1995: they implanted a donor heart directly onto her own failing heart.

After 10 years with two blood-pumping organs, Hannah Clark's faulty one did what many experts had thought impossible: it healed itself enough so that doctors could remove the donated heart.

But she also had a price to pay: the drugs Clark took to prevent her body from rejecting the donated heart led to malignant cancer that required chemotherapy.

Details of Clark's revolutionary transplant and follow-up care were published online today in the medical journal Lancet.

"This shows that the heart can indeed repair itself if given the opportunity," said Dr. Douglas Zipes, a past president of the American College of Cardiology. Zipes was not linked to Clark's treatment or to the Lancet paper. "The heart apparently has major regenerative powers, and it is now key to find out how they work."

In 1994, when Clark was eight months old, she developed severe heart failure and doctors put her on a waiting list to get a new heart. But Clark's heart difficulties caused problems with her lungs, meaning she also needed a lung transplant.

To avoid doing a risky heart and lung transplant, doctors decided to try something completely different.

Continue Reading...

Start Living Today!

With all that's gone on these past two weeks, I have not had time to post the short feature KSLTV did on our family. This was used during the Primary Children Medical Center's Miracle Network Telethon. The hospital was able to raise more than 2 million dollars to help some of the families that need financial assistance. The out-pouring of our Utah community is amazing. They talk about the many miracles happening daily at the hospital with the kids, but the miracle is the money raised.



In regards to my current health situation, I have some energy during the day. I continue taking a lot of medication, visiting the clinic every other week, and doing minor tests. It's been more than 10 months (308 days) since I was listed for a heart. I know others have been waiting two years so it's not bad. I have a routine down and amidst all of the chaos of life I have never been so happy in my marriage, as a father, and friend. There is a peace inside me that I know comes from all of the prayers empowering me to hang on, fight on, and conquer this wild dream!

A vital principle I've learned during this process is best said by Dr. Edward Erwin, First Baptist Church of Kentucky, who preached, "Stop waiting for life to come tomorrow, begin living today. Don’t miss what’s NOW because you are looking for what’s NEXT!" His statement is brilliant. Don't live life looking to the future for happiness. Rather, live today! Celebrate everything you have. Celebrate your family and friends. Material things are worthless. How you treat your family is priceless. Did you think to pray? Did you make someone smile? Did you say, "I love you."

Stop waiting for life to come tomorrow, begin living today. Don’t miss what’s NOW because you are looking for what’s NEXT!

Deseret News Article & Video

Musician awaiting heart transplant performs at Primary Children's telethon

By Carrie A. Moore
Photo by Jeffery D. Allred, Deseret News

Tuesday, June 2, 2009 11:24 p.m. MDT

Editor's note: This is the fourth story in an occasional series

Musician Paul Cardall doesn't get to the piano much anymore, but when he does, the music is straight from his heart, the tired one that needs to be replaced soon.

Two small cameo appearances last weekend during the 27th annual KSL/Primary Children's Medical Center telethon provided him a chance to give back to a hospital he's frequented so often, there's a bronze wall plaque outside the electrocardiogram lab bearing his name.

It was placed there years ago by family members, whose donation to the hospital came after he survived a Fontan surgery to treat severe congenital heart disease.

At 36, he regularly visits his doctors in the cardiology clinic at Primary Children's, despite the fact that almost all of his fellow patients are 18 or younger. Continue reading the story

A Father's Message

When I get the call for a heart my wife Lynnette or Dad will blog updates and share insights. But for now, I asked my Dad to recall his memory of my first heart surgery and contribute to my blog. I should note that although Dad is a professional journalist for the last three decades this is a personal message. In his career he's been fortunate to interview great men and women.

The top photo is with my three older sisters at Dad's broadcasting studio. The bottom photo is in the Garden of Gethsemane with former LDS church President Spencer W. Kimball at Jerusalem in 1977.

If you want to be inspired by a classic documentary watch one of the first features my Dad did in the late 70s early 80s called The Marathon. Thirty years later he still has people commenting that his story motivated them to get in shape and run. I posted it at http://youtube.com/livingforeden

Dad is one of my best friends. I'm blessed to have him when so many don't have that in their lives. And I'm thankful he would take the time to share his memory.

Dear Paul,

I’ve been thinking a lot lately about your remarkable, even miraculous life, especially since your 36th birthday a few weeks ago. Well do I remember that spring day in 1973 when mom went into labor and we rushed to the hospital for your birth. The late night delivery at LDS Hospital, which I was able to observe, was routine, and I was thrilled to have a son, after having three daughters come into our home.

Our lives changed dramatically a few hours later, though, when I was awakened from a deep sleep at home by mom calling to let me know “there is a problem with the baby.” I made arrangements for your sisters and rushed to Primary Children’s Hospital, where you had been taken as a so-called “blue baby.” I met you, and a team of medical personnel led by Dr. George Veasy, coming off an elevator and en route to a medical procedure to determine your malady. Fortunately, I was able to get them to allow me a few minutes alone with you. Your Grandpa Layton and I were directed to a nearby closet where we found some privacy in order to give you, in accordance to our beliefs, a priesthood blessing. Then you were off.

It didn’t take Dr. Veasy long to learn that you had a severe congenital heart defect and that immediate surgery would be needed to keep you alive. You were rushed into surgery before you were a day old for what we were told was a shunt that would allow you to get enough oxygenated blood for your malformed heart to keep you alive.

It worked, and here you are 36 years later. It’s quite remarkable, really, when you consider that you weren’t expected to survive a year, let alone through childhood and beyond into puberty. Yet, you constantly defied the odds. And yes, here you are - a very productive, successful adult who has had a significant impact on countless people throughout the world. Moreover, you’re a loving husband and doting father.

I’ve thought about this in the context of the many CHD parents who follow your blog. Somehow, I hope they can find hope in your story, realizing, of course, that medical science is far more advanced than it was when you were born. Indeed, CHD, though serious, doesn’t always mean doom and gloom. There is always hope. Our hope was that you could be kept alive long enough for advances in medicine that would allow you to overcome your next crisis. It seemed such advances always came. And now we await the next step in your miraculous life. We still have great hope . . . as well as an abiding faith that all will be well. Surely, the miracle will continue.

Love you! Dad

Kori's Heart: A Mother Waiting

Living with a disease you tend to be more aware of the others in similar shoes if not more uncomfortable ones. These things will make anyone stop and think about who they are and where they are in life.

Watch her story Click Here

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)

Cath Today & Medical History Diagram

I'm heading into the hospital for a heart cath in a little bit and wanted to post this picture by Jeffrey D. Allred/Deseret News ©2009.

His photo completely captures our little family at Primary Children Medical Center. Eden is in the back showing my wife Lynnette a toy she loves. This is the 1st floor waiting room for labs on the southside.

Also, I've posted a diagram at the bottom of this blog showing hand drawn images of my heart when I was born and the progression of it's anatomy up to this day. It's fascinating to learn the function of the heart. What a magnificent creation!

Thanks again for everyone's continued support. We feel the power of your prayers and love.

And what of dying?

Thoughts of the future are heavy on my mind. I should note that I am at peace. My faith sustains me. But, it’s impossible for me not to discuss feelings on the subject of dying living in my shoes with heart failure that requires a transplant, and not just any transplant, but a rather difficult surgery, which requires several pediatric thoracic surgeons.

I sometimes think most of us are in denial about growing old and eventually facing our own death. Everyone dies. We accept birth and love to talk to about it. But, what of dying?

As a child you don’t think or talk about your own death because you just got here. As adults it’s a taboo subject and doesn’t always make for delightful conversation with friends. But, living with a disease you are reminded all of the time that you probably won't grow old.

At age 13 when I laid deathly ill with endocarditis in the hospital I had no notion that I would die during that time. I even overheard my doctor after he walked out of my room during rounds say, “if we don’t do something quick we’re going to lose that kid.” I thought to myself, “I’ll be fine.” Of course, we all know kids believe they are immortal, especially teenagers.

I remember a difficult moment a year later while recovering from reconstructive open-heart surgery wherein doctors had to go back in and reopen my chest. I was frustrated. When they had to do it a third time because of further complications I remember saying to my dad, “can’t I just go home?” meaning back to God. "I’m tired of all of this," I said.

As an adult it becomes much more difficult to think about. I have responsibility. I’m a father and husband. The truth is I am not afraid to die because my faith sustains me but I am afraid of missing out on my daughter’s life and helping my beautiful wife raise her.

The beauty in suffering and those affected by it is that our comprehension of our love and affection for each other stays on the surface and becomes what I consider the most valuable and important time of our marriage. We hold each other closer because of what could happen and the nostalgia we feel.

I don’t wish dying on anyone. But, if we could think about our own death for 2-3 minutes each day I believe we would see the world differently. If we thought of what life would be like without that certain someone how would we treat them? The argument you had with a friend or family member becomes meaningless. The world in general becomes more beautiful. Each day is a new gift from God. Life becomes a greater opportunity to do something positive to make this world better. “Every man dies. Not every man really lives,” said William Wallace (Braveheart)

I don’t know what will happen to me but I certainly love each moment I have and look forward to each waking day. I do think the longer you wait for a transplant the longer you have to think, speculate, and wonder.

My cardiologists have brilliantly stabilized my health and prepared me for the challenging surgery. I’m confident in my thoracic surgeons and the great team they work with. They are skilled professionals and I have deep respect for their work. Fortunately, they’ve had time to review my case over these past 7 months.

Ultimately I believe that I am in the hands of a loving God who I’ve asked humbly to allow me more time in this world to enjoy its beauty and people.

Life is a Great Gift

( Photos by Busath Photography. We went to Busath so I could give Eden a Daddy-Daughter picture to capture this moment in our lives. Busath does beautiful work. The one below is of our family. )

I have been richly blessed as I continue to wait for a heart. This journey has been nothing short of a miracle. Life is a great gift. And I look forward to each new day.

I want to thank all of you for your thoughts and prayers on behalf of my little family.

My new blog friends are wonderful! Thank you for sharing your lives with me. All your comments have given me great strength. Please forgive me if I am not able to respond.

I want to thank my angel of a wife Lynnette for everything. She doesn't have much time to herself these days. When she's not working as an RN in the IMC Newborn Intensive Care she is caring for our daughter. Lynnette has been the great blessing of my life. In dealing day to day with my health issues and my unforeseen future she is a saint. I married my best friend and ache to spend every waking moment with her. I adore her love, patience, loyalty, spirituality, humor, wisdom, and beauty. Our sweet little girl Eden continues to laugh, dances, and learns how much love we have for each other through ups and downs.

I want to thank my parents for setting me loose as a child and allowing my heart and lungs to strengthen whenever I had a heart surgery. God put me in their arms.

I have a lot of siblings on both sides. There are so many it would be a whole page to mention each one. Each is amazing and great examples to me. My daughter adores her cousins. Everyone has thrown their arms around us in this time and has been available to help at a winks notice. I love you guys!

My friends and those who I attend church with have been a wonderful blessing and I look forward to seeing their faces each Sunday and throughout the week for various reasons. I love being involved and helping where I can. Now that I’m on the other end of the service I deeply appreciate what they do.

And I want to thank the wonderful medical team at Primary Children’s Medical Center. I have been blessed over the years with great cardiologists, nurses, radiologists, etc., the list is too long to mention. I’ve enjoyed care from experts at Intermountain Medical Center, The University of Utah Hospital, Jordan Valley, and Primary Children’s Medical Center. Of these great folks I want to especially recognize Doctors “Uncle” George Veasy, Conrad Jensen, Donald Doty, John Hawkins, Dale Renlund, Abdallah Kfoury, Patrick Fisher, Larry Green, Michael Adjei Poku, Ed Clark, Charles King, Peter Kouretas, Aditya Kaza, Ronald Day, Robert Gray, Elizabeth Saarel, Susan Etheridge, Roger Freedman, Brian Crandall, John Doty, and the many others who’ve worked on my case.

I am blessed at this time to consult with adult congenital heart doctor Angela Yetman. She is a fighter and extremely optimistic. She is extremely intelligent and my wife and I greatly admire her.

I have a wonderful transplant cardiologist Melanie Everitt and her team; Michelle, Emily, and others. They are always upbeat and I look forward to seeing them each visit. For those who’ve worked with Dr. Everitt I think they’ll agree with me that her sensitivity and caring nature is an absolute bonus to her wisdom.

Overall, thank you everyone! I love life. I am determined. You have all strengthened my conviction to carry on.