I have another "heart cath" or cardiac catheterization scheduled for April 14th. This will be the 3rd one I've received since last August. They're not the most enjoyable activity you could do during the day. But, I'm always in awe of technology and the advances we are making to improve lives.
This video feels like a driver's ed film reel but it is actually very interesting but does not necessarily apply to my situation.
Cardiac Catheterization (cardiac cath) is a procedure that helps doctors see how well your heart is working. Doctors insert a thin, hollow tube called a catheter into an artery in your arm or leg which leads to your heart. The catheter in this image is used to deliver dye that will show up on an X-ray (contrast dye) to visualize the coronary arteries.
I went to the transplant clinic today to meet with my transplant doctor Melanie Everitt and my adult congenital heart doctor Angela Yetman. I also ran into one of my thoracic surgeons, Dr. Peter Kouretas. They are a wonderful team and I enjoy seeing them. The highlight of the clinic for my wife and me was interacting with a few of the “heart moms” and their beautiful children who’ve been transplanted. We saw little Daxton, pretty Kaidence, and baby Benjamin.
I went home feeling extremely confident about the “actual” transplant surgery. Angela Yetman, MD said, “Transplants are one of the easier forms of heart surgery although my anatomy will make it a little more challenging.” It’s the recovery that will be the most difficult time, according to doctors. I remember Dr. Kouretas’ colleague Dr. Hawkins assure me that there is an 80% chance they’ll need to re-open my chest to get rid of excess fluid. I say, “just put a zipper on there and go to town.”
Adults who’ve had the Fontan procedure like me do in fact recover much slower. I could be in the hospital 2-3 months. Nobody really knows. Again, I say, “bring me some hospital Jello through a straw.” As long as I get an opportunity to go home and enjoy my little girl and beautiful wife I am ready to run that marathon until I reach that finish no matter how hard it will be.
Pictures (this is my huge heart. the right atrium is 3.94 inches in diameter. it looks like a giant cocoon with one ugly caterpillar waiting to fly away. CLICK ON THEM TO ENLARGE)
Snow fell yesterday. I have a comfortable chair that reclines next to our bedroom window so I can look outside while I work, read, sleep, or watch television (F.Y.I., The Price is Right is pretty good these days). As I sat in my chair I heard the scrapping of snow on our driveway and looked out to see a friend, who I have not seen in months, out shoveling our snow. I called him this morning and I learned he was out of work. And yet what did he choose to do yesterday instead of sorrow in his jobless pity? He got up, put on a coat, grabbed his shovel, and served another.
This friend is one example of many who have selflessly given of their time and talents to bless the lives of another even though their own circumstances are dire. Albert Einstein wrote, “Only a life lived for others is a life worthwhile.” And Gandhi declared, “The best way to find yourself is to lose yourself in the service of others.”
I’m grateful to the Baron Music Group whose gathered many of my colleagues and friends for a benefit concert in behalf of our family called "Living for Eden." Our friends Kurt Bestor, Peter Breinholt, Ryan Shupe & The Rubberband, Colors, and Sam Payne are all incredible artists and musicians who normally get paid to do these acts of kindness and so we are truly humbled. Several of them spent last week in Bulgaria performing for some orphanages and yet they come home to do even more for others. I can tell you that if these guys were selling cars they’d probably make a fortune. Yet, they choose to uplift and inspire through the power of music.
In my own situation, and through the years, if I’ve learned anything about life it is that in order to have true and lasting happiness (which is “joy”) you can’t wallow in your own suffering or poverty but use it to an advantage in empowering yourself to reach out to those with much greater need. “Forget yourself and go to work,” said Gordon B. Hinckley. And from Neal A. Maxwell, "God does not begin by asking us about our ability, but only about our availability, and if we then prove our dependability, he will increase our capability.”
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.
(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.
Erik Compton received his 2nd heart transplant last May, recovered, and made the cut to play in the PGA tour. Want to be inspired? Watch these stories.
GRACIE I mentioned in a previous blog that Gracie Gledhill passed away almost a week after her 11 month old body rejected her heart transplant. Even before she passed I was invited by her kind grandfather to consider playing at Gracie’s funeral. I told him, “I would much rather see Gracie in her mother’s arms at one of my shows, after I also recover from a transplant, than to see her at her funeral.” But, it wasn’t meant to be and I am extremely humbled and honored to have participated in one of the most touching funerals I’ve ever attended. My wife and I will never forget it. Michelle's blog for her daughter has strengthened my love for life and of God.
MY ROUTINE 200 days seem like a long time. But, it has flown by. I am feeling good. I’ve got a routine down. When I’m not seeing the doctor or going to church I usually get up between 8 and 9 in the morning to the sound of my daughter wanting to watch “a show.” I take my first dose of meds and drink a lot of water. I read the news online and at 10 I give myself a shot along with taking more meds. We make breakfast. I answer some e-mail. And on a good day a friend takes me to lunch. I come home and take more meds. I lay down and listen to a talk or sermon, read a little bit, get online, and try to play with my Eden. Around 5 I help my wife make dinner, try to answer some phone calls, answer some email, listen to music while Eden dances around the house. I take my final meds. I give myself another shot, read a little bit more, blog, listen to music or a talk, and go to bed.
My family and I are very grateful for all of the support we’re receiving from our community. I have great friends and colleagues in the music industry that I greatly admire. I learned a couple of days ago that a few of them, Kurt Bestor, Peter Breinholt, Ryan Shupe & The Rubberband, Sam Payne, and some others, are coming together to do a benefit concert for our family. They're calling the evening "Living for Eden." That's my little girl's name.
All I can say is thank you! I hope to go and see many of you there, unless of course, I happen to get a call for a heart. That would be nice.
Gracie Gledhill passed away last night. She was born last March with Hypoplastic Left Heart Syndrome (HLHS). Gracie had her first surgery, the Norwood, at 4 days old. She was scheduled for her second surgery, the Glenn, on February 12, 2009 but it was determined that her heart was too sick and the surgery would be too risky. Gracie needed a heart transplant to live. A heart became available after only three days and she had a heart transplant on February 22, 2009. Unfortunately, the heart didn't take and she came out of surgery on life support (ECMO). Yesterday she was taken off life support and gradually slipped away.
For a short season Gracie influenced a lot of people. My wife and I have shed many tears for this child, her siblings, and parents who we’ve never met personally. But, we share the same doctors, the same hospital, religious beliefs, and corresponded through email. Incidentally, my wife and I have loved the name Gracie and had planned to give that name to a daughter we miscarried (which was our fifth miscarriage).
Anyone who reads the Gledhills journey of ups and downs in dealing with Gracie’s congenital heart disease will feel a closeness or connection with her because all us are dealing in some way or another with life and it’s challenges. Gracie left behind her brothers Max, Taylor, sister Callie, and her mom Michele and dad Tom.
Over the years I have been deeply affected by other sick children I’ve associated with while staying in Primary Children’s Medical Center in Salt Lake City, Utah. It’s heart breaking to know parents who’ve fought to keep their children alive only to see them slowly slip away back into God’s loving arms. And it’s inspiring to witness children who’ve been fortunate to continue their journey in this life. I am one of those. Regardless of the outcome it seems that these lives teach all of us the value of own lives and how fragile we are. We live for a short while but in the end we all go home to that God who gave us life. But, some of us get to go a little earlier than expected.
One of the songs on this blog is by Annie Lennox called Into the West for the film Return of the King: Lord of the Rings Trilogy - Read the inspiring lyrics. Click Here
Pictures: This is my heart from a CT Scan
I remember Dr. Kouretas’ colleague Dr. Hawkins assure me that there is an 80% chance they’ll need to re-open my chest to get rid of excess fluid. I say, “just put a zipper on there and go to town.”
(Picture: Family photo taken Summer 2008 by BUSATH)
(Picture: After Church with Eden)
Gracie Gledhill passed away last night. She was born last March with Hypoplastic Left Heart Syndrome (HLHS). Gracie had her first surgery, the Norwood, at 4 days old. She was scheduled for her second surgery, the Glenn, on February 12, 2009 but it was determined that her heart was too sick and the surgery would be too risky. Gracie needed a heart transplant to live. A heart became available after only three days and she had a heart transplant on February 22, 2009. Unfortunately, the heart didn't take and she came out of surgery on life support (ECMO). Yesterday she was taken off life support and gradually slipped away.