Climbing Mountains

I'm having so much fun doing outdoor activities I've never been capable of that I'm excited about one of my next goals, climbing a very special mountain.

As I recovered from my heart transplant attached to oxygen, IVs and several chest tubes draining fluid, I was encouraged by my medical team to get up out of my hospital bed and walk a short distance.

Photo: Standing up the first time after my heart transplant

I was in so much pain and discomfort it would have been easier for me to stay in my hospital bed but my mind and spirit were strong, alive, and anxious to take on another challenge.

Together with my wife Lynnette, father Duane, sister n’ law Anna, and a wonderful nurse, they helped me rise up out of my comfort zone and take the first couple of steps slowly out of my room.

Feeling alive we walked down a hallway followed by another hallway that led to a window overlooking the south end of the Salt Lake Valley.

In the distance, to my left, was Mount Olympus, one of the highest peaks along the Wasatch. This is a nostalgic mountain for me because it overshadowed my childhood home in the early morning hours as the sun rose from the east. The pioneers who settled Utah named the mountain after the highest peak in Greece.

My entire life I wanted to hike this beast of a hill but I didn’t have the heart do it (no pun intended). My younger brother Brian climbed it with ease. As adults he took our youngest sibling Craig up the north face using ropes and the usual climbing gear.

Photo: Looking at Mount Olympus from Primary Children's Medical Center several days after my heart transplant.

As I stood from a hospital gazing out the window at Mount Olympus I had flashbacks of all that had transpired the past year leading up to my miraculous surgery with Brian’s untimely death looming over me. I made a commitment there and then that once recovered I would prepare myself to climb Mount Olympus in honor of my brother.

This is no easy task for a heart transplant recipient or anyone who is not in shape to hike long distances. Most climbers reach the summit following a steep trail that stretches approximately 3.1 miles. It’s like walking upstairs for several miles from approximately 5000 ft in elevation to the thin air of 9000 ft.

When I’ve asked people about the hike some have said, “Oh, it’s easy. Me and my college buddies where up to the top and back down in less than 3 hours” While others comment, “It’s tough, rough, and miserable. I remember it being a 9 hour hike up and down.” There certainly are a lot of ways to look at life.

Photo: Mount Olympus, Wasatch Mountains, Utah

I’ve been preparing by climbing other canyons and staying active playing basketball, walking, and fly-fishing.

On June 9, 2010 I will climb Mount Olympus on the 1 year anniversary of my brother's untimely death. Brian left a wonderful legacy not only in the scientific community with his various publications, but he left behind two beautiful children and a kind wife who is strong through adversity. I want to honor his life and love for God’s creations. He would have done the same for me.

I may not reach the peak, but in my efforts I’ll know in my heart and mind that I’m doing something I have never done before and I’ll know my brother will be smiling from the other side saying, “Well done.”

A Health Update & Hosptial Life

Hospital life has made it more difficult to come up with something wonderful to say. The truth is I am tired and anxiously hoping to get the show on the road.

After three weeks of living in the hospital doctors have continued feeding me with intravenous nutrition. In addition, I’m getting a steady stream of milrinone through IV.

I deeply and sincerely appreciate all of your prayers, thoughts, letters, emails, comments, and support. I’m overwhelmed by your love and care.

Throughout this past year your kindness has constantly reminded me of the words in St. Matthew 25:35-40, “For I was hungered, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in: Naked, and ye clothed me: I was sick, and ye visited me… Verily, I say unto you, inasmuch as ye have done it unto one of the least of these my brethen, ye have done it unto me.” I am one of the very least of these and I am grateful for your adherence to follow Jesus.

I am having more fluid in my lungs and trouble breathing. As a result, I’m receiving more doses of lasix and an increase in oxygen requirements.

Since, I am more tired doctors have changed my visiting hours from 5-8pm. I deeply and sincerely appreciate your visits as well as the privacy you are showing our family at this time as we approach the final months of our dilemma.

The photo of me with the ICE Cream has a great story. My friend Josh Russell of Russell's Ice Cream which was sold to Farr's is manufacturing new flavors. Josh was coming to visit and asked what flavor I wanted. Of course, I said, "Bubble Gum" not knowing if they had bubble gum. Josh and his wife showed up with this half gallon of bubble gum, which his dad spent all day making especially for me. How cool is that? (Eden, Lynnette, and Me would go get Bubble Gum Ice Cream weekly this past year)

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)

No More Handshaking | Chocolate Medicine or Venofer®? | More on P.L.E.

Doctors suggest I wash my hands all of the time and try to avoid shaking hands with people. They also suggest I try to avoid large groups of people because they tell me I am extremely immunosuppressed and anything could get me sick. If this happens it stalls the heart transplant. I need to stay free of all bugs. This is tough because I enjoy being with my large family and attending my Church which is my other family.

Chocolate Medicine or Venofer®?
Because of my heart failure I am anemic. So for the past 5 days I have received an iron transfusion through an IV each morning for an hour in addition to the 3,000 other medications I am taking.

Venofer® is used to replenish body iron stores in patients with iron deficiency. It is also a brown, sterile, aqueous complex of polynuclear iron (III)-hydroxide. But, I told my daughter it was chocolate medicine.

Iron deficiency is the most common deficiency disease worldwide. More than 1 billion people have iron deficiency, and about 700 million people have iron deficiency anemia. Iron is an essential nutrient that is needed by every human cell. It plays a valuable role in the transport and storage of oxygen and oxidative metabolism, and in cell growth and proliferation.

PROTEIN-LOSING ENTEROPATHY
SO - I have P.L.E. which is the main reason we're in a rush to get a heart. This disease could eventually kill me. I know it might be boring but I add these blogs to my journal and so I need to document this information:

Background

Protein-losing enteropathy is characterized by the severe loss of serum proteins into the intestine. Normal protein loss in the gastrointestinal tract mainly consists of sloughed enterocytes and pancreatic and biliary secretions. Albumin loss through the gastrointestinal tract normally accounts for 2-15% of the total body degradation of albumin, but, in patients with severe protein-losing gastrointestinal disorders, the enteric protein loss may reach up to 60% of the total albumin pool.

The serum protein level reflects the balance between protein synthesis, metabolism, and protein loss. Protein-losing enteropathy is characterized by more loss of proteins via the gastrointestinal tract than synthesis leading to hypoalbuminemia. It is not a single disease, but an atypical manifestation of other diseases.

Pathophysiology

The pathophysiology of this disorder is directly related to the excessive leakage of plasma proteins into the lumen of the gastrointestinal tract. Mechanisms for gastrointestinal protein loss include lymphatic obstruction, mucosal disease with erosions, ulcerations, or increased mucosal permeability to proteins as a result of cell damage or death. Proteins entering the gastrointestinal tract are metabolized into constituent amino acids by gastric, pancreatic, and small intestinal enzymes and are reabsorbed. When the rate of gastrointestinal protein loss exceeds the body's capacity to synthesize new proteins, hypoproteinemia develops.

Medical Care

Focus treatment on correcting the underlying process causing the protein-losing gastroenteropathy. For example, the patient with congestive heart failure may respond to digitalis and diuretics, whereas the patient with intestinal parasites should be treated with the appropriate medication for the infestation.

Diet

A low-fat diet with supplementation with medium-chain triglycerides is theoretically of benefit in patients with lymphangiectasias. However, in practice, ingesting a diet containing medium-chain triglycerides results in increased blood flow with no reduction in fecal protein loss.

A Heart for Christmas | Or Not

The call came at 12:45am. “We have a heart for you,” the voice on the other line said. I was in shock. I had prepared for the call but because it came early Christmas morning and the fact that it was a real call left me speechless and emotional. We had until 2am to get to the hospital. The operation would take place at either 6 or 7am.

I called my parents to meet us at the hospital. They called my siblings to let them know what was going on. Early that night, we had all gathered with the husbands, wives, and kids for our annual Christmas Eve dinner at my parents. It was a great night. We had a special family prayer and the kids acted out the nativity. My wife and daughter left to go home at 11pm. Before putting my 3-year-old daughter to bed we each opened a present. We put her in bed and then Santa came. Then the phone rang.

We arrived at the hospital feeling a great sense of peace and comfort. The time had come and I was ready. Nurses began the preparations. Everyone was extremely positive and saying things like, “Merry Christmas!” and “What a great Christmas gift.”

I received a rather larger IV and a lot of blood was drawn from my already existing picc line for lab work. They had me wash my chest and groin area (where the major arteries are for the heart lung machine) with special medical soap. It was a little cold. Then surgeons came into my room a little before 5am and told my wife and my parents what was expected. He mentioned the “difficulty” of my particular case because of my heart’s anatomy. It would be challenging to get the old heart out. There would be a lot of bleeding. He said, "There is an 80% chance we'll have to go back in later to help stop bleeding." He said chances are I might not make it. Although he had to talk about the downside or the surgery he also mentioned they have an 80-90% success rate with these surgeries on post fontan patients. But, the harsh realities left me a little depressed but I still felt great peace. I had understood the depth of this procedure previously but when you are minutes away from it actually happening life becomes quite sobering.

They came to get me at 5:20am and before the anesthesiologist took me into the operating room I talked briefly with my wife and parents. I kissed Lynnette, told her how much I love her, and then headed down the hallway.

In the cold, brightly lit, O.R., nurses lifted me from my bed onto that firm, narrow, operating table I have become familiar with over the years. I received a dose of versed (Midazolam) for anxiety and preparation. Before I went completely under we were waiting to hear from one of the surgeons, who had gone to harvest the donor heart, if everything was absolutely perfect and good to go. About 30 minutes later the news came. “The new heart had a problem undetected until they looked at it face to face and would not work,” they said. It had an aneurysm which would require some additional surgery on top of everything else we're dealing with.

I didn’t know what to feel. Shock? Relief? Disappointment? I have felt all of those things. Nonetheless, we called it off.

Lynnette and I came home 5 hours later to Christmas morning. My daughter, who had been taken good care of by my sister n’ law, asked if I brought her a sucker from the hospital and things seemed back to normal. I was anxious to experience Santa with my child. One of the gifts from Santa for my daughter was a Fisher Price Medical Kit. She practiced giving shots to me and listened to my heart beat.

I am thankful for the love and support of my family and friends, particularly my sweet wife Lynnette.

This is a roller coaster of emotions. In a way, this experience seems like a brief 2nd opportunity of time before we find out the real outcome of my life’s journey. I am ready for another call but for now I’ll enjoy this weekend with my wife and daughter as we humbly celebrate the birth of the babe in Bethlehem some 2000 years ago.
_____________________________________

Time, precious time
How quickly the leaves fall from the tree.
Time, oh precious time
In a blink of an eye a child grows old.
And in the pursuit of joy and happiness
Lies time
But quickly it fades
And all we have are memories
Precious moments
Remembered in time.
_____________________________________

106 days on the list. 15 weeks. All is Well.

106 days on the list. 15 weeks. Any predictions?

Despite the minor physical anxieties of waiting for a heart, always wearing oxygen, taking a bazillion pills, giving myself shots twice a day, and carrying around a bag of medication going directly into a permanent IV in my right arm, I have the larger anxieties experienced by those who are sick for a long time and happily married. Keep in mind that I am too tired to stay busy so all you have to do all day is think and reflect. Above all, you hope your wife, the love of your life, is happy, fulfilled, and appreciated because of her sacrifice, service, and love.

My dad is a journalist and once interviewed one of my hero's Howard Hunter, a former spiritual leader of the LDS church and community giant. The man was soft spoken and humble despite his enormous list of credentials and accomplishments. In the interview my dad asked about all the years that Pres. Hunter tenderly cared for his sick wife who later died in a rest home. "How where you able to do that all those years?" my dad asked. President Hunter with some emotion and pause in his voice said, "She would of done the same thing for me."

I'm also reminded of another time that I was at Bryner Clinic in Salt Lake to see my family doctor. While waiting I observed a feeble old woman waiting for the pharmacist to complete her prescription. She was with her husband. They were both very old, petite and weak. She sat in a wheel chair and was so tired that her head kept falling backward. And I watched this husband, who stood by her side, hold her head up, even though his hands shook and they had to wait for some time. I think he held her head for 20 minutes.

I also remember while serving a mission for my LDS church I was responsible for several missionaries of which were an old couple serving in a small mining town in California. Like all of our missionaries they were responsible to knock on doors and share a message of love about Jesus Christ. The wife had really bad arthritis and knees. At many times she couldn't use her legs because of the pain. But, she didn't want to give up. Her husband drove them in the car from house to house. He would get out and knock on the door while his wife waited. If people said yes to letting them he'd go to the car, open the door, pick up his wife and carry her into the home so they could do what they loved to do most which was bring hope to people through their message.

These several experiences that I observed are always on my mind. And I hope I get the chance to show the same expression of love and service for my wife who has so kindly sacrificed, served, and loved me through this experience. It is much easier to serve than to be served.

3 Day Stay at the IMC Hotel

When they started me on the steroids two weeks ago my blood sugar shot up from 100 to 450. Very dangerous. My stomach and legs blew up with fluids from all parts of my body. I went home today after being in the hospital now for 3 days with IV diuretics to get rid of all the excess water along with protein infusions. It has been wild. They're slowly taking me off the steroids because they're not working to solve a serious issue of my body not being able to absorb protein ifor my body. The biggest concern of my doctors has been the Protein losing enteropathy (PLE). That would be my leading cause of death if it worsens before the heart arrives. A new heart would cure me of this disease.

Incidentally, I went in weighing 155 lbs (8 above my normal weight) and left home today at 132 lbs.

Here is a youtube video that reminds me of my experience.

I'd like to add that the new Intermountain Medical Center where I do my clinics and stayed for the past 3 days is remarkable. Those who care for me are some of the finest people in our Salt Lake community. The hospital is a non-profit organization and their interest is the patient. They are true professionals and that's why I call it the IMC Hotel (5 Stars).

Thanks for your continued prayers and support!