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

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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

Look Mom, I'm a real boy - No Strings!

Doctors completed a full heart biopsy this afternoon. The new heart is beautiful! I have some minor rejection factors and pressure which can be resolved by the proper chemistry of drugs. All people with transplants have a low immune system because the new heart or organ is not our own DNA and the body wants to fight it like a virus. This is why people with transplants take a range of drugs like; Prograf, Cellcept, Septra, Valcyte, and Prednisone. It's all a matter of chemistry and taking medication on time to help resolve issues and protect the new organ from rejection and failure.

Unfortunately, because of the poor immune system and the fact my country is approaching flu, swine flu, cold, and more season it will be some time before I am able to go out into public places, which may be difficult for someone who enjoys people.

My kidneys and other organs are functioning beautifully. We worried about future issues with my organs having had protein losing enteropathy, which is working itself out. The varicose veins in my legs have dissappeared as well as some spider veins. My skin and color look normal. And my eyes are clear and blue. My daughter thinks I'm wearing new lipstick. The remarkable human heart works miracles in and of itself. I'm amazed and humbled!

Finally, for the past 5 years I've worn oxygen at night to help me sleep. We've had a concentrator in our home with a 50 foot chord. Eden followed the chord if she wanted to find her Dad. In addition, I had a fanny pack carrying a medication called milrinone, which flowed through a picc line into my heart for almost 10 months. Of course, the home-health care system put their logo right on front of the fanny pack so I felt like I walked around plugging the company. (For those of you in Utah, the only other guy wearing a fanny pack is Dell Schanze) My brother in law thought I should have imprinted paulcardall.com on the bag instead.

I've been looking forward to is doctors removed all of my chest tubes and IVs from my body. I'm able to walk around and enjoy the world without any strings attached. Because of this great news I posted an appropriate song on my playlist from Pinnochio. Thought you might enjoy these lyrics:

I've got no strings
To hold me down
To make me fret, or make me frown
I had strings
But now I'm free
There are no strings on me
Hi-ho the me-ri-o
That's the only way to go
I want the world to know
Nothing ever worries me

Watch the scene from Pinnochio - http://www.youtube.com/watch?v=P4X1UEVGvwY

Friend decides to make marathon a run for the money

BY PATRICE ST. GERMAIN | The Spectrum in St. George, Utah
patrices@thespectrum.com

HURRICANE, UTAH - Running 26 miles in a marathon gives a sense of accomplishment to the runner, but Cory Reese decided to give his run on Oct. 3 extra meaning by putting together a charity team.

Reese, Karrie and Shane Nielsen and others will be running to raise money for Reese's friend Paul Cardall, a recent heart-transplant recipient through Intermountain Donor Services. Read More

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.

Continue the Article

Fitted For A Better World

Today, I walked for 30 minutes; nearly tube free with the exception of my chest tubes draining fluid, and without oxygen, from my room at Primary Children’s Medical Center over the long hallway to the University of Utah Medical Center. And although I have to gown up and wear a mask and gloves to protect myself from infection I have never felt so alive!

(Right Photo - Taking my first walk to a window where I can see Mount Olympus which I plan to climb June 9, 2010 to overlook the beautiful Salt Lake Valley.)

I should be home soon. But, I’ll be back every other day for the usual poking and prodding, biopsies, and rehab typical of a post-transplant life.

Eventually, I’ll have a stabilized drug regimen and be on my way to a most normal life with a new transplanted organ.

And what to do now?

(Photo Left - Chief of Cardiothoracic Surgery, Primary Children’s Medical Center Aditya K. “AK” Kaza, M.D. showing my family my old 5lb heart.)

Over the next couple of weeks I plan to wrap up this blog for a season in order to focus all my time and attention on my wife and little girl. I think I’ll have Eden take me shopping for a bicycle. I’m sure she’ll have a good idea. Maybe she’ll buy me some tap shoes since she is also taking a dance class.

This blog, Living for Eden, will remain online and available as a resource for the folks googling medical information and looking for personal help. Those of you interested in continuing to follow my situation I suggest visiting my music career website and signing up on my mailing list. I will let people know how I am doing until I choose to blog further. Click Here to sign up.

(Photo Right - My kind and wonderful P.I.C.U. nurse removing IVs from my jugular vein.)

The road has been long and difficult. We have experienced the roller coaster of emotions. There have been deep discussions in the darkest hours of evenings concerning the “what if?” How would my family live without a father and husband. Such questions are sobering. Many tears have flowed.

We’ve spent countless hours on our knees seeking help. And the help came through the arms of those who love people and love God. I have learned a great deal about the character of my community. There is more virtue and good in the world than evil. People quietly go about doing good and I’m moved to follow in their footsteps.

(Photo Right - PCMC Director, Adult Congenital Cardiac Program Angela T. Yetman interacting with my family in the surgical waiting room.)

I’ve shared insights and probably preached principles I hope have helped your life. I know, not alone, but by so many others, that you cannot learn joy in this world without experiencing the challenges of life. Through our suffering we gain important virtues; wisdom, compassion, love, charity, hope, faith, sacrifice, and many more.

"We have a Father in Heaven who loves us specifically and gives us things to do and, because he loves us, will cause us, at times, to have our souls stretched and to be fitted for a better world by coping with life in this world,” said Neal A. Maxwell.

This experience has transformed and empowered me. I would not trade this past year for all the wealth or power in the world. But, of course, if I had all that I would have the ability to shout from the rooftops three eternal laws from the New Testament which most people can agree with; Love the Lord thy God with all thy heart, and with all thy soul, and with all thy strength, and with all thy mind; and thy neighbor as thyself.

And finally, there is a powerful statement in the book of Ephesians, which is a standard I hope to live by, which states, “Husbands, love your wives, even as Christ also loved the church, and gave himself for it.”

(Photo Right - Talking on the phone with my friend and former adult congenital cardiologist Michael Adjei-Poku.)

Gratitude for Bella

Today, my brother Brian (who passed away on June 9, 2009) and his beautiful widow Anna welcomed their much-anticipated 2nd daughter Bella Aspen Cardall.

She came from God's arms to my younger brother Brian's to his eternal love Anna.

And while I sit in my room recovering from this miraculously orchestrated heart transplant I'm humbled and grateful to the very thought of "life."

We come and go. It is so fragile, so delicate, so priceless, and so incredible.

And I thank God for orchestrating our lives and teaching wife, my Eden, and me the joy in the journey.

(Photo: Bella Aspen Cardall b. 09/16/09)

http://www.briancardall.com

Thank you for helping me with this Miracle!

I don't know what to say which could convey my gratitude to all of you involved in this miracle performed by our Heavenly Father through his children.

I've witnessed tender acts of prayer, hope, faith, scientific gifts, talent, surgical wisdom, and other acts of kind service to me. I am grateful and feeling good.

And yet, at the same time I recognize the deep loss a family is feeling at this time.

Also, I have many tender feelings for the many heart babies who've left us to go back home to God. I hear their voices when I am sleeping and grateful to know many of their names. Their history is written all over the halls of this sacred institution.

I continue to pray for those who still remain fighting for a future with their family and to enjoy this world.

I am still with you and will continue to pray and muster up what-ever faith is in me.

The ever lasting cycle of life's ups and downs is difficult to imagine. There is so much sadness and yet so much joy in my heart today. I am truly grateful. I feel spoiled.

One of my ecclesiastical heroes' Neal Maxwell said, "Each of us have sort of a rendezvous with destiny. And the world needs more kindness."

I feel that the Lord has been kind to me and I have much to do to honor the goodness of those who've fought this fight with me. I pray I may be worthy of your kindness and love.

I can't doubt that this is a miracle God performed.

I attribute all these many blessing and new found perspective to the God of Heaven, my wonderful wife, Eden, family, friends, and numberless strangers who are my brothers and sisters who shared a common bond.

God is a tender loving Father who is cheering from the stands, helping us improve with practice and time.

He tenderly and patiently awaits our running home into His open arms. He is soft spoken and it takes great effort to hear His influence unless we are in such hard situations.

I love you all and look forward to doing what-ever I can to further inspire your lives for good.

We have a beautiful world and together there is nothing stopping us from making it a good experience for everyone.

photos: top - My daughter Eden putting her hand on my chest over my new heart. Middle - Making funny faces three days after surgery; bottom - thumbs up from my childhood cardiac pediatrician and PCMC pioneer George Veasy, current adult congenital cardiologist and clinical director Angela T. Yetman, and Medical Director Edward Clark, M.D., PCMC

All is well....

Posted by Lynnette

We continue to marvel at the progress Paul is making. If you can believe it, he is off the respirator and has been talking and joking like his old self between periods of rest. We are still in shock! He still has several indwelling lines, chest tubes, drains, and lots of medications but all the equipment and bandages seem invincible when you see his great smile.

We sense a great deal of energy from Paul that is anxious to come out when his body is able to comply. The anticipation of the great things that we will see from him in the future with this new found energy is exciting. We are all just awestruck at the steps he is making towards recovery.

What a gift from God this has been, as the miracles continue to come. And what a gift from a selfless family this has provided for us. We are deeply overcome with love for them and their sacrifice as we see the new heart beating in Paul's chest under his skin.

Please continue to pray for a smooth recovery as we still have obstacles to overcome. Again, we thank you all so much for the love you have extended to us.

As we read a few of your comments to Paul earlier while he was still on the ventilator, he was so overcome with emotion that it was difficult for him. We treasure all the comments, well wishes, and prayers you continue to send our way. We are richly blessed.

The long awaited post!

Posted by Lynnette Cardall

Hello to all our much loved friends. This is Paul's wife Lynnette posting from Paul's ICU room. We are deeply grateful and thrilled to share with you that Paul has received his NEW HEART!!!!

The transplant went very well, much more smoothly than expected. He continues to make progress and we continue with prayers in our hearts that all will go well from here.

We are overwhelmed with joy for this gift and blessing. We recognize that this incredible blessing is a result of the love and prayers of so many. Paul continues with a breathing tube but has been periodically awake to communicate by writing.

Paul wanted me to share this statement with everyone. He writes "I am alive because of the medical team, this community, and my Savior who healed me." Once again, thank you for all your support, love, and prayers. We will periodically update this blog as things progress.

A dear friend of ours encouraged us to hang on to a simple truth and that has pulled us through to today. That truth is that "Miracles happen." All our love......

Facing the Future | A Family Portrait

I’m continually amazed and inspired by the kindness of so many people in our community. Acts of service are numberless and I feel overwhelmed.

One such act was a gift from artist Patricia Christensen.

Several months ago I told Patricia how much I loved her work. Within a month she called and said, “I’d love to paint your family.” Of course, we couldn’t turn such a priceless gift down.

We joined Patricia and her husband Ladd at Wheeler Farm in Midvale, Utah. They took several photos of our family and over the next several months Patricia worked her magic.

The other evening, Patricia and Ladd unveiled her painting, which now hangs in my hospital room. I knew parting with her piece of art was a sacrifice, like sending off your child to college. She spent months on every detail.

As I lay in my room staring at the painting, which captures our little family several months ago walking down a path, I’ve humbly and gratefully titled the piece “Facing the future.”

Thank you Patricia Christensen for your act of kindness!

View Patricia Christensen's Art Gallery

A Father's Love in a Dark Hour

Last night, as I lay awake in a dark hospital room, which has become my home, I remembered the many nights I would lie next to my daughter in her room as she drifted off to sleep.

As a toddler Eden didn’t like being alone at night and was afraid of having the lights off. Together, we read books and said prayers. I would turn out the light and continue lying in the room next to her. Slowly she would fade off peacefully knowing her dad was nearby.

There is a beautiful analogy with such a precious memory. For in my own darkest hours I know we have a kind and loving Father in Heaven close by and I’m not afraid. He’s there to help each of us feel calm so we might peacefully endure the dark periods.

(Photo: Giving a hug to my daughter Eden before she left me alone at the hospital)

A Thick Fog of Adversity

(Photo: August family portrait before coming into the hospital)

As I sit in my hospital room looking out my window I see smog hovering over the Salt Lake valley like a thick plague. Each year the wind brings a cloud of smoke from the summer fires. Although it looks miserable I know people are going on with their lives. Eventually, the rain will come, the smog will fade, and once more the valley is restored to its beauty.

Our lives are full of these moments when the thick fog of adversity surrounds us. Yet, somehow we adapt. We plow ahead and move forward with our lives as best we can. We choose how we are going to handle such a crisis. We have within each us the ability to transform our wounds into wisdom.

“If you’re going through hell, keep going,” said Winston Churchill. And from the brilliant Jazz pianist Duke Ellington, “A problem is a chance for you to do your best.”

Most of us are in the midst of hard adversity right now. As one who is struggling each day to carry on, may I humbly assure you that God, our Heavenly Father, will send the rain so that each of us might recognize the beauty in our lives.

Finding Hope

As September 11th draws near, I want you to enjoy this beautiful short film recently produced by The Church of Jesus Christ of Latter Day Saints. This is not in an effort to proselyte my church but to establish a perspective which has helped me and hundreds of other people during hard times. The principles in this true story are universally accepted among most denominations.

A Health Update & Hosptial Life

Hospital life has made it more difficult to come up with something wonderful to say. The truth is I am tired and anxiously hoping to get the show on the road.

After three weeks of living in the hospital doctors have continued feeding me with intravenous nutrition. In addition, I’m getting a steady stream of milrinone through IV.

I deeply and sincerely appreciate all of your prayers, thoughts, letters, emails, comments, and support. I’m overwhelmed by your love and care.

Throughout this past year your kindness has constantly reminded me of the words in St. Matthew 25:35-40, “For I was hungered, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in: Naked, and ye clothed me: I was sick, and ye visited me… Verily, I say unto you, inasmuch as ye have done it unto one of the least of these my brethen, ye have done it unto me.” I am one of the very least of these and I am grateful for your adherence to follow Jesus.

I am having more fluid in my lungs and trouble breathing. As a result, I’m receiving more doses of lasix and an increase in oxygen requirements.

Since, I am more tired doctors have changed my visiting hours from 5-8pm. I deeply and sincerely appreciate your visits as well as the privacy you are showing our family at this time as we approach the final months of our dilemma.

The photo of me with the ICE Cream has a great story. My friend Josh Russell of Russell's Ice Cream which was sold to Farr's is manufacturing new flavors. Josh was coming to visit and asked what flavor I wanted. Of course, I said, "Bubble Gum" not knowing if they had bubble gum. Josh and his wife showed up with this half gallon of bubble gum, which his dad spent all day making especially for me. How cool is that? (Eden, Lynnette, and Me would go get Bubble Gum Ice Cream weekly this past year)