And what of dying?

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

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

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

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

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

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

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

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

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

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

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

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.

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