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.

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.

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

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.

Games!

Here are a couple fun transplant games to test your ability to be a good transplant doctor or surgeon. Good luck!

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)