Alot of Heart in Houston

My family and I were invited to the 2nd annual "It's My Heart" congenital heart defect conference this past weekend in Houston, Texas at the United Way Center. I was one of the speakers.

With almost 20 chapters spread throughout the United States, I'm grateful to know there are so many people organized to help families affected by congenital heart disease.

Folks were anxious to hear from Charles D. Fraser, Jr., M.D., an internationally recognized leader in pediatric and congenital heart surgery, who was recently appointed surgeon-in-chief at Texas Children's Hospital in Houston.

I should note that good surgeons are celebrities to those who have had their children worked on and Dr. Fraser is well loved. He leads a team of more than 100 surgeons representing multiple pediatric surgical subspecialties at one of the nation’s largest children’s hospitals.

Dr. Fraser's, who studied at John Hopkins University, discussed the history of pediatric heart surgery and then focused primarily on what's being done for patient's with single ventricle. He said every case is different and unique. "We've come really far in since our early fontan procedure came into play," said the surgeon. He showed us the number of procedures now available before a person needs a transplant. For example, Dr. Fraser wants more research and practice done towards replacing sections of the heart with gortex, cadaver tissue, and animal tissue before having to go to the length of doing a heart transplants. He was very optimistic and soft spoken about the future of people with congenital heart disease.

Later, we broke into groups and heard from a variety of speakers on subjects like managing stress, future of CHD, and others.

I enjoyed breaking into the teen summit (no parents allowed) with some of the teens and adults discussing their feelings about living with CHD. The gentlemen who led the group discussion has my similar defect and is a psychiatrist at the hospital.

Photo: A few of the adults from the Houston area living with congenital heart disease. It was really inspiring for me to be with this group.

Most talked about what they'd like to do in life, their hopes and dreams. We talked about how hard it is on their parents or loved ones. One by one we talked about each of our different diagnosis. To lighten things up one kid said that in addition to his CHD he had been diagnosed with "awesomeness" but it wasn't contagious.

Overall, organizations like It's My Heart, Intermountain Healing Hearts, Saving Tiny Hearts, ACHA, and the many other foundations throughout our nation are doing great work. I'm so please to be part of this effort to help lift each other.

Mark Your Calender | Celebrate Life 2011

Once again, thank you for celebrating life with me last Monday evening. Since it was such a meaningful event for my family and friends, I don't know about you, but I'm ready to do it again next year.

Therefore, mark your calendar for Valentines weekend 2011. I'll be sure to let you know the exact date as the details evolve concerning the Celebrate Life 2011 concert event in Salt Lake City.

We were able to help various families with some modest financial support this week because of the Concert event. I want to repeat this every year, and hopefully take it's message of love, life, and family to other cities.

In the meantime, we will continue in our efforts to raise awareness of congenital heart disease on an international level through private concerts, lectures, and online resources.

We will meet our goal in providing an annual scholarship for those affected by CHD to attend school at my local community college (SLCC).

The first scholarship deadline is May 3rd. To apply visit: http://scholarship.paulcardall.com

As part of this overall effort, we will auction items here online for you to bid on. All of the funds will go directly to Paul Cardall Family Foundation, to help families affected by CHD. Stay posted for the first item.

Angel Family Nominations & Scholarship News..

I want to thank all of you who have shared with us your feelings toward an angel family whose had a challenging year. It's heart breaking to know there are so many people who've lost or will lose a child or parent soon.

As promised, one of these various families will receive a small financial gift as part of my upcoming Celebrate Life concert on February 15th, 7:30pm at Abravanel Hall in Salt Lake City, Utah.

The family who receives the gift will remain anonymous to the public in order that we may respect the privacy and nature of all those participating.

As one who understands, people who have lost or are losing a family member deserves our help, love, and friendship. It is absolutely vital to our own happiness and character that we are willing to "mourn with those that mourn; yea, and comfort those that stand in need of comfort."


CONGENITAL HEART DISEASE SCHOLARSHIP

The SLCC full ride scholarship available to those affected by congenital heart disease has a new deadline, May 3rd. For more information visit: http://scholarship.paulcardall.com

Affected means it can be a parent, brother or sister of someone who has been influenced by CHD.

Good Things Utah Interview

This morning on Utah's ABC affiliate, KTVX, I discussed congenital heart disease with the hosts of Good Things Utah. My adult CHD doctor, Angela Yetman joined me.

This is for those of you who were unable to watch the program. (Don't forget to turn off my playlist to your left)


If the video doesn't work for you visit this link:
http://www.abc4.com/content/about_4/gtu/featured_on/story/Congenital-Heart-Disease-The-Celebrate-Life/i46-NB5xM0STROav-E9G_w.cspx

Apply for CHD Scholarship & Nominate a Family

As I waited for doctors to find me a new heart, my community and colleagues in the music industry organized a benefit concert for our family. I wish every family in a similar situation could experience what I felt that evening.

This is why I am doing The Celebrate Life concert at Abravanel Hall on February 15, 2010 in Salt Lake City and rewarding a scholarship to an individual affected by congenital heart disease (CHD) and a financial gift to an angel family affected by this disease.

According to Senator Dick Durbin and the American Heart Association, “A child is born every 15 minutes with congenital heart disease or CHD.” Despite this sobering statistic, the great news is that most individuals born with CHD now have the medical resources available to help them live longer and enjoy the benefits of growing up, getting an education, falling in love, getting married, and raising a family.

I am living proof of the possibilities and want others to experience my happiness.

Therefore, I am extending an opportunity for individuals affected by CHD (whether you are an immediate family member or have been diagnosed with the chronic illness) to apply for a 1-year tuition free scholarship through my local Salt Lake Community College for those affected by congenital heart disease. I understand the costs associated with having a chronic illness. Education often takes a back seat because of mounting medical bills. I don’t want anyone to be denied of an education because of his or her financial situation.

For more information and/ or to apply for this scholarship visit:
http://scholarship.paulcardall.com

Nominate an Angel Family in the Rocky Mountain Region to receive a financial gift:
http://scholarship.paulcardall.com

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.

Love is on the Move

Last Sunday, after being home from the hospital 4 days, our neighbor dropped off their new convertible BMW. She said, “Here you go. It’s yours for two days.” I’ve always said, “It’s better to be trusted than to be loved.” Of course, we took the car with the top down. In the back of the vehicle, Eden was snug in her car seat with a cute jacket.

With the wind blowing through our hair and faces my wife Lynnette drove us up the nearest canyon by our home. The trees in Little Cottonwood Canyon were changing. The green leaves were a beautiful red, orange, and yellow. A season has come to a end and a new one is beginning.

We pumped up the volume listening to a favorite band called Leeland. As they sang, “Love is on the Move” we headed up to Alta Ski Resort were we parked the neighbors car.

For the first time in 22 years I felt no altitude sickness, which I often had up in the mountains because of my old heart’s anatomy and the fontan procedure. We walked some distance up a small trail off the side of the road. I felt amazing.

Driving home all we could do is cry because of what God has done for our little family. Hundreds of people have prayed. Little children have pleaded with God for Eden’s daddy. Surely the creator orchestrated something beautiful and I hope others may feel our same joy.

I feel “endurance” and recognize blood flowing through my body. Like slowly dipping the tips of your fingers in warm water I can now feel a sensation in my fingers. I’m composing music with more feeling. My nails grow. I used to have to clip my nails every other month. Now, it’s every week. I don’t get winded or lightheaded talking. I can follow Eden around the block as she rides her bike and still feel like going another mile. My appetite is strong. I’m up early walking as the sun rises. Needless to say, I feel alive and vibrant. Is this what it feels like to be normal? If so, count your blessings. You all have been greatly blessed by the Creator.

I had a chance to see and hold my old heart in the lab prior to leaving the hospital. Some of the heart had gone to another lab and a small part of the left atrium and superior vena cava is still in me. What I held in my hands was the size of a football and looked awful and somewhat disgusting. Pacemaker leads were still in the fatty substance on the outer walls. Stitches from previous surgeries were still in place in various locations. My right atrium was a big 4-5 inch balloon with very thin walls. It had been deflated. That’s how Dr. Kaza was able to remove the heart. The left ventricle and left atrium was covered with a thick fatty wall. I observed my only functional valve, the mitral valve, which struggled to pump oxygenated blood to my body for 36 years.

As I held this heavy over-sized heart in both hands I said to the pathologist, “How in the world did I survive all these years on this thing?” He replied with a puzzled smile, “That’s what we’re trying to figure out.”

At that moment for the first time I saw beyond my faith or spiritual hope of a creator or God. I held the physical evidence in my hands. Clearly someone else is breathing life into our bodies. The pump, which sustained my life for 36 years struggling to push blood through my body, leaves experts wondering how is this possible? Surgeons figured a way out. They made it work.

I asked a friend who is a cardiothoracic anesthesiologist about challenging surgeries and the delicate matters of life and death. Why are some taken home to God? Why do some stay? He said, “Sometimes, no matter how hard we work and no matter if we are doing everything correctly the patient for some strange reason passes away. And then there are times where we think to ourselves ‘there is no way this person is going to survive.’ But we go ahead and do the best job we can and the person lives. It’s hard to understand such circumstances. Obviously, someone else is running the show.”

Because of the tender mercy of our Heavenly Father, the Creator preserved my life all of these years. And now, I have a new heart. I am greatly blessed. I don’t know why. I’m humbled and sobered by the miracle that was beautifully orchestrated over the last year. All I know is that God Almighty has breathed life back into my body. He is my friend, your friend, my Father in Heaven, and your Father in Heaven. He is real. He lives. And like the scars in the palm of Jesus hands I have scars to remind me of His love, mercy, and grace.

In conclusion, I have been blessed my whole life with a congenital heart defect. My soul has been stretched. I will continue to search and seek out soul stretching experiences because in this I find joy, wisdom, happiness, and a personal relationship with God. His purpose and plan for each person is real. There is life after death. I do not doubt. We will see our loved ones who’ve passed away. I will enjoy a reunion with my brother. Until then, may we all enjoy our life and find joy in the journey.
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Watch more video at http://www.youtube.com/user/livingforeden
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Gracie's Theme: Music Video

Share the video: http://www.youtube.com/watch?v=KVaaRx1-kSs

When I was born with my congenital heart defect in 1973 my parents almost lost me. Today, according to the American Heart Association, heart defects account for an average of 30% of all birth defect related deaths. No one should have to lose a child. And yet, these hard things happen daily.

Many years ago I was fortunate to travel with Richard Paul Evans' who wrote the #1 New York Times best-selling book The Christmas Box inspired by parents who've loss children. He had invited me to compose an album of piano music inspired by his work. Together as we toured the country I met thousands of parents who've experienced the death of a child or several children. It's a cross so hard and difficult to bear I'm not sure I can truly understand the depth or pain of such a thing. Needless to say, those who’ve crossed that difficult road and climbed that impossible mountain inspire me. They are some of the most kind, compassionate, humble, and open people I know.

Tom and Michele Gledhill are one such family. They dealt with congenital heart disease even before Gracie Jean was born on March 20, 2008. Their journey of ups and downs in fighting to keep their daughter alive by whatever means is a powerful example of love, hope, and faith. And although Gracie passed away on March 2, 2009 after a difficult heart transplant the Gledhills know she has returned to a loving God.

Gracie's brief mortal life empowers her family and those who knew her with virtues of humility, strength, compassion, openness, understanding, and a love for others. Their daughter was an angel, a gift, sent by God to bless lives.

What do I take away from knowing families like the Gledhills? Never give up! Never quit! Never lose sight of having faith in God. And in the end, if any of us are called home to the God who gave us life, before what some may call our time, can we declare, "I have fought a good fight, I have finished my course, I have kept the faith!"

It is with the uptmost respect and love that I share this montage of home movies and pictures from the Gledhill family. Their path reflects so many other families. I want to thank Michele and Tom for sharing their story with us. The video is set to "Gracie's Theme" which I wrote shortly after Gracie's passing.

I dedicate this video to every family who has lost a child.

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.

Deseret News | Savoring every day

Young family anxiously awaits heart transplant
By Carrie A. Moore (Published: Saturday, April 4, 2009)

Photo by Jeffery D. Allred

As a student nurse, Lynette Cardall knew enough about severe health problems to realize the gravity of her decision to marry a man with congenital heart disease.

Her father, left a widower when Lynnette was only 8 years old, had often told her "the hardest thing I ever did was lose your mom." So when she told him she wanted to marry Paul Cardall — knowing her fiance's chances of dying young — her father reminded her of his own difficult life experience.

"Just make sure you think about the decision," he counseled.

Click Here to Read the Article (DeseretNews.Com)

In the News!

(Picture: Family photo taken Summer 2008 by BUSATH)

My good friends at Intermountain Donor Services in Salt Lake City have been asking me to share my story with our community through the media. It took me awhile before I said yes. But, I changed my mind because of the number of parents I’ve observed with children who have congenital heart disease (CHD).

My parents have never given up on me and I now have my own family. Even to this day they stay positive and it motivates me. It’s inspiring. It doesn’t mean we haven’t had our share of tears and frustrations. But, they’ve kept an optimistic attitude about life. They keep hope alive. A man I greatly admire, Dieter F. Uchtdorf, stated, “each time a hope is fulfilled, it creates confidence and leads to greater hope.”

Again, and I’ve said this many times, I’ve been extremely blessed to live almost 36 years after doctors’ thought as a child that I would not make it. If there is one thing I’ve learned it is that we are not in charge. There is a finale' for each of us. Those around us are subject to that. But, until then we all do our best to fight to survive either for ourselves or for our children. It’s mind over matter. I have no doubt that there is something greater than all of this guiding our lives, the lives of our children, and the world in which we experience life.

Another old hero of mine said, and I now understand the humor of what he meant, “You go to bed each night and hope you wake up in the morning.”

So, I hope in sharing my story it might help your life in some way. We are all trying to find “joy” in the journey. These experiences allow each of us to understand the full measure of that word “joy”. But, joy does not come into our hearts until we have experienced a lot of pain, heartache, and tears. C.S. Lewis said, "It's impossible to know happiness until you suffered great pain."

THE DESERET NEWS
A song of the heart is a daily ritual
By Carrie A. Moore

First in an occasional series.

Paul Cardall makes music, the kind his fans say soothes the heart and nurtures the soul. And though he may not know it, his feel for and expression of that music may have literally helped keep his tired heart beating until he receives a new one in the near future.

At age 35, Cardall's award-winning career as a musician — with more than a dozen CDs and numerous public performances under his belt — has taken a sabbatical since August, when he was listed for a heart transplant after a lifelong series of surgeries, medications and therapy. Those who know of his challenge follow his blog to read the latest updates on his condition.

Continue the article

KSL TV
Musician to undergo heart transplant at children's hospital
By Ed Yeates

Video Courtesy of KSL.com

Say a Prayer for Gracie

I have been deeply affected by a little girl named Gracie Gledhill. It has been a roller coaster ride for her sweet family whom I’ve never met. I heard about her from Leslie Cluff who lost her child to CHD. Immediately, I was drawn to Gracie’s story. Her young mother, father, 2 brothers, 1 sister, and a countless number of people have been praying for this little girl. Gracie was born with a severe congenital heart disease. After various up hill battles, hope and prayer, she was listed for a heart last Tuesday. She was placed at the top of the list under the care of my transplant physician. I witnessed a miracle when I learned Saturday night that a call came. Doctors had a heart for Gracie. Throughout the night, morning, afternoon, and into the evening, her mother updated the blog whenever they had news. I kept checking in to see what was happening.

But, today she is struggling to survive because her body is rejecting the heart. I don’t know what’s going to happen. But, I am humbled. This is a sobering experience. A great man once wrote something like, “I don’t know the meaning of all things but I know that God loves his children.”

(Picture: These machines are the ECMO. They can sustain Gracie for a a little more than a week.)

Say a prayer for the Gracie Gledhill family.

BONE Transfusion | Doctors Tomorrow

Milk won't cut it. My calcium is low. It's an 8. Should be 8.7 - but that's alright because nobody is perfect. Nonetheless, I had my 2nd transfusion to strengthen my bones. My last one was 3 months ago. You basically get hooked up to another IV, lay on a bed, listen to some tunes, and wait 3 hours. I listened to some Jack Johnson, a little Journey, and a sermon by Dieter F. Uchtdorf. Oh you do get a drink. They gave me BOOST. And, a turkey sandwich (like the ones they have on the Delta Airlines when you sit in coach). That was thoughtful.

Tomorrow I get to have some more labs drawn and see my congenital cardiologist, Angela Yetman, and the transplant cariologist, Melanie Everitt. They're brilliant women and so are the many good folks that work with them to save so many lives.

(Pictures: My IV, and the cool gum ball machines at Primary Children's Hospital)

Say a Prayer this Valentine's for the Cardiac Kids

(Picture: 1st baby photo after I recovered from heart surgery at 22 hours - 1973)

In the past 6 months, since I was listed for a new heart, my wife and I have read other related blogs. It's sobering to see so many ‘cardiac kids’ or children with congenital heart disease. Some of these sweet souls have had transplants. Others are waiting. There have been miracles, struggles, and loss of life.

It’s inspiring to interact with a few of these families. I’m sure several share my medical team at Primary Children’s Medical Center in Salt Lake City, Utah. It’s a wonderful staff of experts who are passionate in their work to save lives. But, more importantly to me, the cardiology and transplant staff has a peaceful, caring spirit about them.

Although I am fully aware of the many adults in my same shoes I would hope they'd agree with me when I admit that living 35 years is a great blessing and an honor. I hope to have many more years. I have a daughter who needs a father. But, my heart is crying out for these ‘cardiac kids’ that they might have a chance to enjoy this beautiful world. Just as badly as I want to live for my daughter I want these sons or daughters to live for their parents.

Several months ago, while I was staying in the hospital with my health declining, I remember being discouraged with life and my situation. And although I struggled mentally, I said a quiet prayer. Moments later I recalled something I heard from a man I greatly admire. He said, “Despair drains from us all that is vibrant and joyful and leaves behind the empty remnants of what life was meant to be. Despair kills ambition, advances sickness, pollutes the soul, and deadens the heart. Despair can seem like a staircase that leads only and forever downward. Hope, on the other hand, is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn… Hope has the power to fill our lives with happiness. Its absence—when this desire of our heart is delayed—can make ‘the heart sick.’” (President Dieter F. Uchtdorf, Member of the LDS Church First Presidency) Upon remembering this message I regained my optimism and felt peace again.

This Valentine’s weekend as we think of hearts I invite you to join with me in remembering these ‘cardiac kids’ and their families. Say a prayer for them. I’ve added links to many of their blogs over on the right side.

3 Day Stay at the IMC Hotel

When they started me on the steroids two weeks ago my blood sugar shot up from 100 to 450. Very dangerous. My stomach and legs blew up with fluids from all parts of my body. I went home today after being in the hospital now for 3 days with IV diuretics to get rid of all the excess water along with protein infusions. It has been wild. They're slowly taking me off the steroids because they're not working to solve a serious issue of my body not being able to absorb protein ifor my body. The biggest concern of my doctors has been the Protein losing enteropathy (PLE). That would be my leading cause of death if it worsens before the heart arrives. A new heart would cure me of this disease.

Incidentally, I went in weighing 155 lbs (8 above my normal weight) and left home today at 132 lbs.

Here is a youtube video that reminds me of my experience.

I'd like to add that the new Intermountain Medical Center where I do my clinics and stayed for the past 3 days is remarkable. Those who care for me are some of the finest people in our Salt Lake community. The hospital is a non-profit organization and their interest is the patient. They are true professionals and that's why I call it the IMC Hotel (5 Stars).

Thanks for your continued prayers and support!

Still Waiting for a Heart!

Why couldn't I be back on the North Shore waiting for a heart. Of, course I wouldn't make it if they paged me. Darn it!

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.