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)

What is it that you think about?

(This is me in 1987 recovering from post fontan open heart surgery - Surgeons opened my chest 3 separate times during this stay because of additional problems)

A close friend of mine asked me, “with your situation what is it that you think about?” That is a good question. When you’re waiting for an event to happen that could determine your fate what do you think about?

For me, it’s a chance to take a look back at life and reflect on events and who you’ve become and where you’re headed.

What consume my mind are what matters most to me, my playful little 3 year old and my beautiful angel of a wife.

It’s so unfortunate that millions of men don’t know what I am talking about. Comedian Jerry Seinfeld, who was popular for his long bachelor life, said, when asked about his new-found family life and fatherhood, “What the hell was I thinking? My child and wife are everything to me.”

False alarm. Staying home!

(This is what I sometimes do at the Children's hospital while I wait to have my labs drawn. Of course, the kids boot me off.)

False alarm. And I apologize for crying wolf again but now I am not moving into the hospital on Monday. We met with doctors today an apparently my body is no longer anemic and my protein levels have improved. We did not think that would happen. However, two weeks ago I was infused over a 5 day period with some iron to help improve my blood and give me strength. So this wonderful miracle is great news!

But, it is temporary good news. And again I may find myself up in the hospital with more challenges. You mentally prepare yourself for something and then things change. Life is unpredictable but it keeps moving along for all of us. I love it! And although I have anxieties with waiting for a heart I am truly blessed and grateful for the gift of life.

I am feeling good. So I'll just enjoy this time.

But what a roller coaster!

Moving into the Hospital on Monday? Maybe.

I am moving permanently into the hospital on Monday until doctors can get me a heart and I'm recovered.

WILD!

They'll also up my status putting me at the top of the waiting list.

More coming tomorrow. . .

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.)