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.)

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.

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

One Year on the Waiting List | Miracles

As an adult I am beginning to know the meaning of St. Paul’s words to the Romans, “We glory in tribulations… Knowing that tribulation worketh patience; and patience, experience; and experience, hope.” It is true. I have been blessed my whole life to have severe congenital heart disease. I am far from perfect and needed this in my life to teach me things I could have never learned without it. As a result, I am a witness of God’s hand in our lives. I’ve observed many miracles in my own.

Last Wednesday I was admitted to the pediatric intensive care unit to begin receiving additional milrinone and nutrients intravenously. I’m also beginning some physical therapy.

These changes are an effort to help my organs hold steady so my body is prepared for the challenging transplant. In addition, I am getting some much-needed rest.

Thank you for all of your love! Our little family feels it so strongly... And with all that is transpiring we'll need your faith and prayers even more. A few days ago doctors shared with me tests results from my esophagogastroduodenoscopy. Doctors are theoretically concerned that there could be some excessive bleeding which may or may not be controllable during the transplant operation. It’s statistically serious because with each individual transplant surgery blood must be thinned with heparin for a lengthy time so patients don’t throw a clot and have a major stroke.

I have always believed someone greater than all of us runs the show. I’ve witnessed too many miraculous events to believe otherwise. I’ve also felt such comforting and peaceful emotions during hard times, which are unexplainable in words. I can’t deny feelings.

My friend and author Richard Paul Evans said of God, “If we looked at life as a ball game, God is not an umpire who sits and looks for failure. He’s more like the father in the stands cheering us on.”

Philosopher and spiritual leader Neal A. Maxwell wrote, “God loves us and, loving us, has placed us here to cope with challenges which he will place before us. I'm not sure we can always understand the implications of his love, because his love will call us at times to do things we may wonder about, and we may be confronted with circumstances we would rather not face. I believe with all my heart that because God loves us there are some particularized challenges that he will deliver to each of us. He will customize the curriculum for each of us in order to teach us the things we most need to know. He will set before us in life what we need, not always what we like. And this will require us to accept with all our hearts--particularly your generation--the truth that there is divine design in each of our lives and that you have rendezvous to keep with destiny, individually and collectively.”

For me, God has been extremely generous, kind and loving. I am surrounded by such love and support from family, friends, and strangers whom I see as brothers and sisters. I ache for others without such love to feel that same strength and power. Doctors have the skills to heal the body. Friends and family have the power to heal my mind.

My God and your God has provided me with a wonderful medical team who He can inspire. They are schooled and prepared to work miracles. And through them, I know God can perform many wonderful things according to His will and the faith of those who believe in Him.

And so at this time I humbly ask each of you to please pray for my gifted and skilled medical team of doctors, surgeons, nurses, technicians, and more at Primary Children’s Medical Center.

“I am a witness of His miracles and his mercy. I put my future in his hands knowing he's made me all I am. I put my faith in him and truth begins to speak. His power is real and it moves me until I will not be still.”

Photos: Top: With Eden in the P.I.C.U. / Middle: Rockin in the P.I.C.U. / Bottom: Standing in front of the painting of George Veasy, M.D. my childhood doctor. / Very Bottom: And a video of me and Eden

Family Reunion

Our family enjoyed a reunion in Park City, Utah. As expected the gathering was not the same without the presence of my younger brother Brian who passed away last June. His beautiful pregnant wife Anna and spirited daughter Ava joined us and we mobbed them with love.

With all that has transpired in our lives, our Cardall family was still able to gather in humility, love, friendship. We also had a lot of laughter.

After the reunion our family went to the Salt Lake City to set a temporary headstone on Brian’s grave. I say temporary because the city requires the ground to settle before the grave receives a permanent tombstone.

My younger brother David and Dad built a cement base. As the cement settled, Brian's wife Anna had Ava did a hand and foot print in the cement along with the words inscribed “I Love You Daddy.”

I wish people had what I've been fortunate to enjoy. Along with the overwhelming love I feel from my gorgeous wife Lynnette and sweet daughter Eden, my parents are still together and they love each other.

"In a world of turmoil and uncertainty, it is more important than ever to make our families the center of our lives and the top of our priorities," said L. Tom Perry

The Irony in Life

Life is full of ironies. A prominent thoracic surgeon who was scheduled to do my procedure, and who has saved hundreds of kid's lives, has cancer and will be unable to return to the operating room. Our thoughts and prayers are with him and his family during this incredibly difficult time.

Another one of life's ironies is that my thoughts and prayers are constantly with a family whose husband; son, father, mother, wife, or daughter will be my donor. If I only knew who they were could I warn them? Could we stop whatever calamity is coming? This is a very sobering predicament. Like the young single mother who gives her child away to a married couple for adoption, there is an almost indescribable sacrifice, which takes place.

My wife works with babies fresh from Heaven while I have a friend who buried people for his profession until he sold his business. On and on it goes and the irony of life and death is fascinating, sobering, difficult, and mysterious.

Where do we find comfort in all of this? It's almost impossible for me to discuss such strange diversions in life without acknowledging my faith in a loving Heavenly Father who knows and understands all things.

A spiritual hero of mine and theologian leader Neil A. Maxwell wrote, "Irony is the hard crust on the bread of adversity. Irony can try both our faith and our patience. Irony can be a particularly bitter form of such chastening because it involves disturbing incongruity. It involves outcomes in violation of our expectations. We see the best laid plans laid waste."

He continues, "With its inverting of our anticipated consequences, irony becomes the frequent cause of an individual’s being offended. The larger and the more untamed one’s ego, the greater the likelihood of his being offended, especially when tasting his portion of vinegar and gall."

"Words then issue, such as Why me? Why this? Why now? Of course, these words may give way to subsequent spiritual composure. Sometimes, however, such words precede bitter inconsolability, and then it is a surprisingly short distance between disappointment and bitterness."

Maxwell further suggests, "Amid life’s varied ironies, you and I may begin to wonder, did not God notice this torturous turn of events? And if He noticed, why did He permit it? Am I not valued?"

"Irony may involve not only unexpected suffering but also undeserved suffering. We feel we deserved better, and yet we fared worse. We had other plans, even commendable plans. Did they not count? A physician, laboriously trained to help the sick, now, because of his own illness, cannot do so."

And finally, Neil Maxwell concludes, "In coping with irony, as in all things, we have an Exemplary Teacher in Jesus. Dramatic irony assaulted Jesus’ divinity almost constantly.

"For Jesus, in fact, irony began at His birth. Truly, He suffered the will of the Father “in all things from the beginning.” This whole earth became Jesus’ footstool, but at Bethlehem there was “no room … in the inn” and “no crib for his bed”

"At the end, meek and lowly Jesus partook of the most bitter cup without becoming the least bitter. The Most Innocent suffered the most. Yet the King of Kings did not break, even when some of His subjects did unto Him “as they listed.” Christ’s capacity to endure such irony was truly remarkable."

"You and I are so much more brittle. For instance, we forget that, by their very nature, tests are unfair."

A scripture reads something like, "I do not know the meaning of all things? But, I know that God loves His children."

And another which provides great comfort says, "The spirits of all men, as soon as they are departed from this mortal body, yea, the spirits of all men, whether they be good or evil, are taken home to that God who gave them life...those who are righteous are received into a state of happiness, which is called paradise, a state of rest, a state of peace, where they shall rest from all their troubles and from all care, and sorrow."

Often, in my mind flow the words of another spiritual hero, Joseph Smith, who wrote, "I am like a huge, rough stone rolling down from a high mountain; … knocking off a corner here and a corner there. Thus I will become a smooth and polished shaft in the quiver of the Almighty."

All of my life's challenges and mountains to climb have brought me closer to my family and to God. I would not trade them for all the money in the world. These things are difficult and discouraging at times but there is much greater suffering in the world than my own. And through it all I am comforted knowing that God is my friend.

Visit my blog titled My Faith in Jesus

Read the full sermon "Irony: The Crust on the Bread of Adversity" by Neil A. Maxwell

Reading "Heart to Heart"

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

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

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

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

READ THE FULL TEXT
LISTEN TO THE ENTIRE SERMON

Getting Out / 100g Protein / P.V.C.

Yesterday at clinic my transplant cardiologist Melanie Everitt said my lab work looked good. I have more color in my face because I am no longer anemic. I am also feeling better than I have been, given our circumstances.

I was able to take my family on a few outings this past week, which we haven’t done in a long time.

Here’s a few pictures:
We visited down-town Salt Lake City and saw some historical sites; i.e. Mormon Tabernacle; we also had some good friends take us to dinner for big juicy protein steaks. I am eating like 100 grams of protein each day.

This is all good news! I need to be strong for the transplant operation. It will help in the recovery.

I am fortunate to have wonderful doctors and nurses. I feel a great connection with each one of them and I trust their judgment.

But, again, every time I go into the children hospital to receive care I see kids in hard circumstances. But, I'm at peace knowing a few of the people who are providing their medical care.

We did learn that my heart is having premature ventricular contraction (PVC), also known as ventricular premature beat (VPB) or extrasystole, is a form of irregular heartbeats in which the ventricle contracts prematurely. This may be perceived as a "skipped beat" or as palpitations. So for the past 24 hours my heart has been monitored to see how often I have them.

Possible triggers of PVC – I commented on each of these.

* Anxiety/Stress (I have some of this)
* Chocolate (I do eat a lot of this)
* Caffeine (Coca-Cola, yes)
* Cocaine or other stimulant (No)
* Calcium/magnesium imbalance (Yes, I have this)
* Dehydration (sometimes)
* Exercise (I don’t do this)
* Hormonal imbalance (Nope)
* Hypercapnia (CO2 poisoning) (I have no idea)
* Hyperstimulation of the Vagus nerve (Not sure)
* Lack of sleep/exhaustion (Yes, this is true)
* Overeating (A little bit)
* Low copper (I don’t eat pennies)
* MSG (I think this is in a bunch of the food I eat)

Do I miss my day job?

People keep asking me if I miss my day job? No, I don’t. At least, I haven’t until today.

I play the piano and run a small independent record label called Stone Angel Music. Our artists mostly record peaceful instrumentals. The music we produce has been a major part of my life.

It was last fall when my health began failing and doctors listed me for the transplant that I canceled a little over 20 gigs and stopped spending time promoting the music.

But, that’s the difficult part. I miss playing for people. And more particular, I miss sharing my life’s philosophy in a concert or fireside setting.

I think I’ve been blessed not to really think about it. I guess it’s the drama of the unknown and the fact that all I can think about is my wife and little girl. I want more time with them and I don’t want anything to get in the way.

I look forward to recovering from the challenging surgery. It will be a difficult road for many months. But, I wouldn’t trade this experience for anything. I am learning a great deal about life and it’s purpose. You come to understand a great deal about the character of your family, friends, and other associates.

I’m getting anxious. I want to do so much in this life and give back to those who’ve selflessly served and sacrificed time for my family and me.

And, yes, I have music in me. It’s building up. I can feel it. Hopefully, with faith, prayers, and the incredible medical team, I’ll get chance to let it out.

Oh yea, listen to some of our music.
www.stoneangelmusic.com

(This is what I do during the day now - but, I don't dress up for the gig. And, that's my wife.)

The Blessings of Christmas

Two months ago all I could do is lay around because doctors were trying to figure out how to get my heart failure under control. I was in need of a serious tune up.

Whether it's a consequence or not, I was humbled to learn that my family, friends, fans of my music, and those I don't even know began praying for me.

I want everyone to know that God is good to me and loves you because for the past two weeks, as we get closer to Christmas I have felt great. Not 100%, but well enough to get out a few ours each day. Well enough, to make gingerbread houses with my kid. Well enough to laugh and enjoy this time of year. And it's because of prayer and the wisdom of my doctors that I am tuned up for a time. And what better time than Christmas!

Prayer is gift. Life is a gift. Family is a gift. And I am more than happy this particular time of year to celebrate the Birth of our Lord.

Good News!

We got a call this morning from Latoya informing us that I am now listed for a new heart. Man, it is kind of wild. . . sobering. . . and surreal. . .

On Friday I get a pager and if the batteries work they'll contact me at anytime. It might be 2 weeks up to 1 year. The heart needs to come come from at least 50 miles from Intermountain Medical Center in Murray, Utah. When they have a potential great match for my body the pager goes off and I head to the hospital with my 72 hour kit (or things I want to have for recovery). I have one hour to get there. In the meantime a thoracic surgeon travels to where the new heart is and carefully removes it from the donor. He or she will have a good idea from there if it will be a perfect match and if so they prep me for surgery. The thoracic surgeon brings the new heart to the hospital where Dr. John Doty will carefully remove my bad heart. Incidentally, he is the son of Donald Doty who did my 2 previous open heart surgeries where I almost died. So, I know I am in good hands. (The father has worked on the engine and can tell his son what is in there.)

This is a very difficult surgery because of my heart's anatomy. And there will be a lot of scar tissue from the surgeries I had early in my life. Finding the good tissue among the bad will be tough. He has to cut in the right places.

We have every confidence in the transplant team and in Dr. John Doty. He is a man of faith and said to me personally, "We will not lose you!"

Please pray for my wife Lynnette and daughter Eden. Pray for Dr. John Doty and his team who will determine the best heart for me. And most of all pray for the family whose sacrifice and tragedy will bless our family. I may never meet them or know of their loss.

What gives me comfort and peace? The love I feel from my wife, family, and friends. Thanks to all of you we literally feel the arms of God around us.

I also find great comfort in my faith. I know that God lives. Jesus is the Christ. He is my friend. Life is part of a three act play. We are now experiencing the challenges of the 2nd act. In time, all of us will begin act three as we wait for the resurrection made possible by Jesus Christ overcoming death himself. All of us receive that gift.

Some of us may need a physical transplant but we must also, all of us, experience a spiritual transplant. I strive for that every day of my life because I know I am far from perfect in kindness and friendship. But, through faith, repentance, and baptism we may begin the process of having spiritual heart transplant made possible by the suffering of our Savior in Gethsemane and on the Cross.

We all have are own challenges. . . I'm content. I could always be living in the country Georgia with Russians dropping bombs on my home or in Dar-fur with all my family and friends brutally murdered by genocide. . . . etc. etc. or even worse I could be considered a friend of Michael Jackson, Paris Hilton, or Brittany Spears.

Meeting the transplant team

My wife and I, along with my parents, met with Latoya, a coordinator with the heart and lung transplant team. We, went over all of the aspects of being listed and receiving a heart. There is a lot of work put into the process. One is required to be in somewhat good condition so the heart will not be rejected. There are about 30 on the list in Utah. And they have over 90% success rate for the first year.

Later, we had a memorable meeting with John Doty, the son of Donald Doty who performed both of my previous operations. He studied at Georgetown and then John Hopkins. He was so positive and expressed his desire to be the one to do the surgery. He said his Dad wants to be there as well. He said, “We are not going to let anything happen to you.” I know they will do an extremely professional job. He is a great man just like his Dad. (Donald Doty served as a general authority Seventy and was a surgical partner with Elder Russell M. Nelson, an apostle in the Church of Jesus Christ of Latter-Day Saints)

On Tuesday they will present my case before the board and there will be a vote. I’ll know in a few days if we move forward. But, I'm confident it will go through. Since my first meeting with Dr. Renlund (also a area seventy) I have had various tests and a lot of blood work. These things don’t bother me.

I have received nothing but support from family and friends. People are so good to us. And I thank everyone for their faith and prayers on my behalf. Also pray for the family whose tragedy and sacrifice will create new life and another chance for me and my family.