One Year on the Waiting List | Miracles

As an adult I am beginning to know the meaning of St. Paul’s words to the Romans, “We glory in tribulations… Knowing that tribulation worketh patience; and patience, experience; and experience, hope.” It is true. I have been blessed my whole life to have severe congenital heart disease. I am far from perfect and needed this in my life to teach me things I could have never learned without it. As a result, I am a witness of God’s hand in our lives. I’ve observed many miracles in my own.

Last Wednesday I was admitted to the pediatric intensive care unit to begin receiving additional milrinone and nutrients intravenously. I’m also beginning some physical therapy.

These changes are an effort to help my organs hold steady so my body is prepared for the challenging transplant. In addition, I am getting some much-needed rest.

Thank you for all of your love! Our little family feels it so strongly... And with all that is transpiring we'll need your faith and prayers even more. A few days ago doctors shared with me tests results from my esophagogastroduodenoscopy. Doctors are theoretically concerned that there could be some excessive bleeding which may or may not be controllable during the transplant operation. It’s statistically serious because with each individual transplant surgery blood must be thinned with heparin for a lengthy time so patients don’t throw a clot and have a major stroke.

I have always believed someone greater than all of us runs the show. I’ve witnessed too many miraculous events to believe otherwise. I’ve also felt such comforting and peaceful emotions during hard times, which are unexplainable in words. I can’t deny feelings.

My friend and author Richard Paul Evans said of God, “If we looked at life as a ball game, God is not an umpire who sits and looks for failure. He’s more like the father in the stands cheering us on.”

Philosopher and spiritual leader Neal A. Maxwell wrote, “God loves us and, loving us, has placed us here to cope with challenges which he will place before us. I'm not sure we can always understand the implications of his love, because his love will call us at times to do things we may wonder about, and we may be confronted with circumstances we would rather not face. I believe with all my heart that because God loves us there are some particularized challenges that he will deliver to each of us. He will customize the curriculum for each of us in order to teach us the things we most need to know. He will set before us in life what we need, not always what we like. And this will require us to accept with all our hearts--particularly your generation--the truth that there is divine design in each of our lives and that you have rendezvous to keep with destiny, individually and collectively.”

For me, God has been extremely generous, kind and loving. I am surrounded by such love and support from family, friends, and strangers whom I see as brothers and sisters. I ache for others without such love to feel that same strength and power. Doctors have the skills to heal the body. Friends and family have the power to heal my mind.

My God and your God has provided me with a wonderful medical team who He can inspire. They are schooled and prepared to work miracles. And through them, I know God can perform many wonderful things according to His will and the faith of those who believe in Him.

And so at this time I humbly ask each of you to please pray for my gifted and skilled medical team of doctors, surgeons, nurses, technicians, and more at Primary Children’s Medical Center.

“I am a witness of His miracles and his mercy. I put my future in his hands knowing he's made me all I am. I put my faith in him and truth begins to speak. His power is real and it moves me until I will not be still.”

Photos: Top: With Eden in the P.I.C.U. / Middle: Rockin in the P.I.C.U. / Bottom: Standing in front of the painting of George Veasy, M.D. my childhood doctor. / Very Bottom: And a video of me and Eden

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.

Ridin' The Hoverround in Costco!

Man, I can't believe how much fun it is to drive a Hoverround scooter all over Costco! I had seen how much fun the folks were having in those commercials during my daily watching of "The Price is Right" but I never new it was true. The other thing that amazes me is that you can scoot around Costco in less than 20 minutes and still spend almost $500.

On a serious note; and in regards to my PLE (Protein Losing Enteropathy), I finally learned the importance of avoiding fat food. The more fat I eat the more protein I lose from my system. I am also losing a lot of blood in my intestinal tract too. This is also another contributor to my anemia. I am greatly motivated to eat less fat and continue eating a ton of protein.

At Costco I bought protein bars and shakes for my diet. I am also eating a lot of meat, eggs, and anything else with protein. Of course, it is still difficult to avoid some fat.

Overall, it's been a good week. I'm stable and have been fortunate to ride a scooter in Costco for a few hours and go to Church for an hour. Life is good!!

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!