Showing posts with label open heart surgery. Show all posts
Showing posts with label open heart surgery. Show all posts

Tuesday, April 21, 2009

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)

Friday, March 20, 2009

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.

Thursday, January 29, 2009

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.”

Tuesday, August 5, 2008

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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