A Little Humor Goes Along Way

Life without humor would be a disaster. Thought I'd share with you a couple of fun video clips related to heart surgery that put a smile on my face.

Remembering a Girl named Stephanie

There is not a week that goes by that I don’t remember a little girl named Stephanie who had a profound effect on my attitude and outlook on life.

I was a teenager and received the challenging Fontan procedure, which would greatly improve my heart’s function. Surgeons re-opened my chest a few days later to reduce swelling, bleeding, and implant a pacemaker. I was in good spirits until they said they had to go back in and replace the faulty pacemaker and move it to my abdomen. By then I was depressed and frustrated with my situation. I remember saying to my dad with tears in my eyes, as I was wheeled on an operating table into that final surgery, “I want to go home.” But, what I meant was home to God. “I can’t take this anymore.”

I had been in the pediatric intensive care unit a few days sleeping mostly as my body recovered. There was one particular day when I awoke and saw standing next to the side of my bed a young girl I thought to be 5 or 6 years old. She had dark hair, big beautiful eyes, and was obviously mesmerized at my situation. I must have had a hundred tubes running in and out of me and I still had a large one down my throat, which was uncomfortable. But, here was this young girl who was very pale. I noticed a tube placed into her trachea on her neck. She could not speak and sadly she appeared to be dying. And yet, this little girl had a smile that stretched from one ear to the other as if to say, “Cheer up… It’ll be ok!”

Over the next few days we became friends. Stephanie would stop by to visit me in the PICU and eventually in my room on 4 West. She drew me a picture of her in green scrubs standing tall in a bed of colorful flowers by a tree with the sun shining down. I would show her all of my BYU football posters of Shawn Knight and Jason Buck along with an autographed picture of Bruce Hurst who pitched for the Boston Red Sox. He graciously stopped by to see several patients the previous year while I was having heart surgery to remove the walnut size blister full of staff infection or called endocarditis. (His pitching helped the Rex Sox defeat the New York Mets in the 1986 world series.)

Eventually, I recovered and went home. A year later my family ran into Stephanie’s mother Patsy at a grocery store where she told us that her daughter passed away shortly after we left the hospital. She had a form of sistic fibrosis, which slowly took her home to God. Patsy told us Stephanie loved coming down a floor to see patients but it wore her out and eventually she died.

Many years later as I was preparing to leave my home for a two-year service mission for my church this experience would replay over and over in my mind. I spent three weeks in a training center under a very strict schedule. We were up at 6:30 every morning, attended 12 hours of class, and hit the sack at 10:30 pm. This began to wear on my health and I was frustrated and became depressed. I thought about being sent home. I didn’t want to be a burden.

My mind reflected back to my challenges in a hospital where I underwent worse challenges and I thought of Stephanie. And for the first time I realized the depth of her sacrifice in visiting me. She died giving of herself to others. She probably could have lasted a little longer. But, rather, she got out and went to the aid of another. Whether that was her intention or not she did it anyways. Her visits and radiating smile transfixed me in the hospital and I was no longer depressed.

And in that missionary training center, after being depressed and throwing a pity party for myself I chose to “cheer up” and told myself Stephanie’s words, “It’ll be ok.” My mission became another one of the most important experiences of my life wherein I learned many of life’s valuable lessons.

There is not a week that goes by that I don’t think about Stephanie.

(Pictures: Top Right - Me and Stephanie; Right Middle - My companion Elder Clark and me; Bottom Right - With one of my favorite families)

My Heart Cath

Prior to yesterday’s heart cath my wife Lynnette and I were fortunate to visit with a cute little boy named Grant and his parent’s Kyle and Allie. Grant was born with HLHS and needed some repair work on his liver, which was shaped like a horseshoe around his other organs. But, gratefully, after many prayers and good medical care, Grant is on the mend and doing better. Doctors need to keep him in the pediatric intensive care unit (P.I.C.U.) for another couple of weeks before Kyle and Allie can take him home. In the meantime, his parents have an RV they can stay in parked at the hospital. Kyle has been attending school in Logan, Utah.

While in the P.I.C.U. we saw many familiar faces and had a brief conversation with one of my surgeons. We also learned that little Jack Trent is recovering very well from his Fontan and they hope to take him home soon.

As for my cath, we checked in at noon and waited with other same-day surgery children. I always enjoy sitting in there as the only adult going into a procedure. Toys are everywhere. There was one woman telling her grandson how to play his video game. So I pulled out my Iphone and played a golf game.

We were called into a room after 30 minutes. They checked my vital stats and had me take off my clothes and put on a gown. Doctor Gray came in and we discussed the procedure, which would be my third cath since being listed for a heart last August.

My anestiologist came into the room and we discussed how they wouldn’t put me completely under like the children but they would give me an anti-anxiety drug and another causing amnesia. (In my childhood I remember being awake for most of these caths although they now put the kids completely out).

After saying goodbye to my gorgeous wife I walked into the cath lab which looks like an operation room. There were several nurses and techs prepping the room. We joked about the temperpedic mattress on the narrow operating table. We laughed about many other things as I laid flat on the table.

They hooked me up to machines and began a slow drip of the drug in my picc line. Once the drip was going they put an IV in my left hand so I could have my 24/7 medication Mileranone running into my picc. I continued joking about my vulnerable situation. The radio was playing “round and round” by a metal band called RATT. I hadn’t heard that song in a long time. I mentioned, “you’re putting me out to this 80s song?” Slowly, I faded or drifted off and the procedure went forward.

I remember talking through the procedure although I was very sleepy. I felt the wire going into my body through an artery in my left groin area. It was somewhat uncomfortable, but not painful. It’s like being at the dentist after they’ve numbed you and you feel the pressures of the drill in your mouth but no pain. Doctor Gray checked my heart's pressures, the stent he had put in six months ago, and clot off a large collateral artery.

I awoke in the recovery room surrounded by other children in their beds, plenty of nurses, and a lot of movement. I have to be honest I felt extremely uncomfortable and had a lot of anxiety. I’m not sure if I had a bad reaction to a drug or if some evil power overcame me. I was discouraged and mentally drained. I felt like the character Andy in The Shawshank Redemption trying to escape through the narrow tunnel he had spent years try to dig to his freedom.

After an hour Lynnette put my socks on my feet. I put on my shirt and eventually the anxieties went away. I became calm and asked for some food. I asked my nurse for the popular root beer slushy many have grown to love. I downed a few of those and by 10:30 pm we were able to pack up and head home after getting a dose of antibiotics through my IV, which they would remove. I still have a large bandage over my left groin that I’ll take off in a few hours.

In the midst of suffering I try to remind myself that it does end. It might seem like a million years away. But, the pain ends. Some suffering last our whole life – but it ends. I am comforted by my faith and knowing there is a loving God who does not find joy in our suffering but finds joy in what it makes us become.

(Pictures: Top - Grant and his parents Kyle & Allie, Middle - Me and Lynnette, Bottom - With my Mom whose spent years in a children's hospital with me)

Clinic Update & Concert Story

My bi-monthly clinic concluded that my health is stable. Isn’t it nice to be told your clinically stable? I have more color in my face. I’m producing more red blood cells. (This could explain my leaning toward college blue BYU all of these years.) On Tuesday, I will undergo a heart cath or cardiac catheterization.



My fellow cardiac pal Grant
We continue to get feedback from the concert and are hearing wonderful stories about people who attended the show. My wife and I are still humbled by the outpouring of love and support!

This came from Kyle & Alli, the parents of my fellow cardiac pal Grant, who is recovering from some challenging surgery.

“Last night, we had another huge blessing. We have wanted to attend a benefit concert for Paul Cardall (an musician who has a similar heart defect to Grant and who is waiting for his heart transplant), but we were unsure of where life would take us and so we did not buy tickets.

Yesterday, after we decided we trusted our nurses for the day and we knew our night nurse, we decided we could attempt our first real outing away from the hospital! To our dismay, tickets were sold out. We started trying to find some tickets and just after posting and emailing a few people, someone came on the intercom here and announced that they had tickets for the concert that they were not using that they wanted to donate to a family here on the floor. What a fast answer to a simple hopeful prayer! We claimed the tickets and were able to go with a few friends last night.

What a wonderful concert it was. I had major anxiety leaving Grant for so long, but it was good to be there. We met many heart families who we had previously known only through the world of blogs and thoroughly enjoyed the entertainment. Paul was able to stand with his family and thank those in attendance for their support and it was wonderful to see him, though weak, still full of hope.

There was a beautiful tribute to Gracie Gledhill and recognition of the many other families with "cardiac kids" and the whole heart community was there to embrace another. We spoke with Tom and Michele Gledhill right before the concert and I was so glad for their family to continue to see little Gracie living on and touching lives just as each of these sweet angel babies do to all who know them and their lives.

I loved being there, but I was glad to be back with my sweet baby.” - grantmeaheart.blogspot.com

There are a lot of cardiac kids who are in need of help and there are mother's with empty arms who need our prayers. And when you retire this evening remember them and don't forget to say one for Grant and his family.

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.

Good News!

We got a call this morning from Latoya informing us that I am now listed for a new heart. Man, it is kind of wild. . . sobering. . . and surreal. . .

On Friday I get a pager and if the batteries work they'll contact me at anytime. It might be 2 weeks up to 1 year. The heart needs to come come from at least 50 miles from Intermountain Medical Center in Murray, Utah. When they have a potential great match for my body the pager goes off and I head to the hospital with my 72 hour kit (or things I want to have for recovery). I have one hour to get there. In the meantime a thoracic surgeon travels to where the new heart is and carefully removes it from the donor. He or she will have a good idea from there if it will be a perfect match and if so they prep me for surgery. The thoracic surgeon brings the new heart to the hospital where Dr. John Doty will carefully remove my bad heart. Incidentally, he is the son of Donald Doty who did my 2 previous open heart surgeries where I almost died. So, I know I am in good hands. (The father has worked on the engine and can tell his son what is in there.)

This is a very difficult surgery because of my heart's anatomy. And there will be a lot of scar tissue from the surgeries I had early in my life. Finding the good tissue among the bad will be tough. He has to cut in the right places.

We have every confidence in the transplant team and in Dr. John Doty. He is a man of faith and said to me personally, "We will not lose you!"

Please pray for my wife Lynnette and daughter Eden. Pray for Dr. John Doty and his team who will determine the best heart for me. And most of all pray for the family whose sacrifice and tragedy will bless our family. I may never meet them or know of their loss.

What gives me comfort and peace? The love I feel from my wife, family, and friends. Thanks to all of you we literally feel the arms of God around us.

I also find great comfort in my faith. I know that God lives. Jesus is the Christ. He is my friend. Life is part of a three act play. We are now experiencing the challenges of the 2nd act. In time, all of us will begin act three as we wait for the resurrection made possible by Jesus Christ overcoming death himself. All of us receive that gift.

Some of us may need a physical transplant but we must also, all of us, experience a spiritual transplant. I strive for that every day of my life because I know I am far from perfect in kindness and friendship. But, through faith, repentance, and baptism we may begin the process of having spiritual heart transplant made possible by the suffering of our Savior in Gethsemane and on the Cross.

We all have are own challenges. . . I'm content. I could always be living in the country Georgia with Russians dropping bombs on my home or in Dar-fur with all my family and friends brutally murdered by genocide. . . . etc. etc. or even worse I could be considered a friend of Michael Jackson, Paris Hilton, or Brittany Spears.

Possible Heart Transplant

Hi family & friends,

A little more boring news "all about me" . . but, I want you to know what is going on and encourage you to keep most of all my wife Lynnette, daughter Eden, and me in your prayers (along with everyone else in the world that needs our prayers). We could really use the help.

After reviewing my tests from last week's procedure which was difficult to recover from doctors told us today what needs to happen. . Transplant if I qualify. This Thursday I will meet with the heart & lung transplant team to begin further testing and discussion to determine if I do qualify for the heart transplant. There are a lot of details. Most of the doctors in our community familiar with my case believe I should have the transplant as soon as possible because of how damaged my right atrium is. Blood is just swirling around in there like and having a hard time leaving to the lungs for oxygen. There is another more difficult option but it was ruled out because my body is not strong enough. Regardless by the end of the year I may be having major open heart surgery. . . If I get a transplant there are good chances of living a little longer and enjoying all of you.

A little wild! This is very sobering for us at this time but we have hope and faith in God's great plan of happiness. Leaving the hospital everything outside seemed more beautiful and the music on the radio felt more alive. All is well in Zion!! Pray for our little family.

WE LOVE ALL OF YOU AND THANK YOU FOR YOUR FRIENDSHIP & LOVE!!!

paul


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"Dearly dearly has he loved.
And we must love him to.
And trust in his redeeming blood
And try his works to do."
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