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!

YOUR HEART vs. MY HEART

So what is normal?

To the right is a a picture of a normal heart and an imperfect version of my own. (You can make it bigger by clicking on it).

You'll notice I have no right ventricle. Oh well. So to my understanding, the non-oxygenated blood comes from the body into the homemade right atrium. The non-oxygenated blood swirls around like a round about and goes and flows, hopefully, into the left ventricle. (There are usually two valves or doors for the blood to flow in but my "tricuspid valve" is not there.) Thus, my congenital heart defect properly titled, "Tricuspid Atresia." Oh yea, my main arteries were reversed at birth giving me the other titled, "Transposition of the greater arteries or TGA."

WEEK 5
Since I was listed I had been feeling ok, laying around, most of the time. Last week doctors turned up my pacemaker, upped my dose of synthroid, and gave me a large dose of Steroids. It was like night and day. I felt great for a few days and had a lot of strength. Plus, I watch more baseball. But, the side effect now is more swelling in my legs and stomach.

THANKS
I want to thank everyone for all their prayers and fasting on my behalf. I can literally feel the arms of God around me through your prayers, service, and love. There is great power in prayer and they are answered. I'm overwhelmed by the support we have received. We love you all!

Still Waiting for a Heart!

Why couldn't I be back on the North Shore waiting for a heart. Of, course I wouldn't make it if they paged me. Darn it!

Week 4 - Crank that Pacemaker!

Today my congenital heart doctor Angela Yetman had my pace-maker cranked up! I went there exhausted. Tonight, I was able to attend a Church service project. So knock on wood. . . Regardless, I am still listed. I basically need a tune up to be strong enough for the surgery. Oh yea, I carry that pager everywhere. . . They also ordered some steroids to help me since my body won't break down protein. And I'm not even competing in the Tour De' France.

Life is good! My 2 year old daughter Eden is very imaginative these days. She is in the princess stage. She wears these outfits that she refuses to take off. And the kid says to me, "You wear your oxygen." Or, "Lie down Daddy." How cool is that? She's a doll.

Week 3 - On the List - And some thoughts

I am in my third week waiting for a heart. It could be up to a year so I don't have any anxieties. Both my wife and I continue to feel the comfort and peace we had hoped for in this process.

We've been fortunate not to have Lynnette working for the past 16 months because we've enjoyed the benefits of COBRA insurance. She loves being a stay at home mom and I love having her around. Eden and I are sad to see her going back to work so we have good medical coverage for what lies ahead. Lynnette works in the Newborn Intensive Care Unit at the new Inter-mountain Medical Center. I know that if I had a child in the N.I.C.U. I couldn't ask for a better, kinder, more beautiful nurse. She is very good at what she does. And I admire her abilities. It is a difficult job.

We have an incredible family who is going to help us out when Lynnette works. My daughter, with all of her beautiful energy of life, can be tiring and ware you down. But, I think every parent understands this whether you're in heart failure or not. So I look forward to spending a lot of time with Eden before I get the call.

In regards to waiting for a heart and experiencing the symptoms of heart failure, I've known challenges like these throughout my life and I believe it is because of our faith in a loving and understanding God that my family always seems to grow closer together during these difficult times.

You can't know the sweetness in life without tasting the bitterness of life. There is no reason to blame God for what we are subject to. I believe we chose to experience earthly life as part of a three act play in the eternal nature of things. We are in the second act. God knows what's ahead for us in the third and final act. Like any loving parent, he loves seeing us grow and mature from the choices we make. But above all, at times we make poor choices or are hurt by the choices of others, and like the child who falls from a bike and cries for their mother and father, there is a loving Savior who is there to wipe away our tears and heal our wounds.