False alarm. Staying home!

(This is what I sometimes do at the Children's hospital while I wait to have my labs drawn. Of course, the kids boot me off.)

False alarm. And I apologize for crying wolf again but now I am not moving into the hospital on Monday. We met with doctors today an apparently my body is no longer anemic and my protein levels have improved. We did not think that would happen. However, two weeks ago I was infused over a 5 day period with some iron to help improve my blood and give me strength. So this wonderful miracle is great news!

But, it is temporary good news. And again I may find myself up in the hospital with more challenges. You mentally prepare yourself for something and then things change. Life is unpredictable but it keeps moving along for all of us. I love it! And although I have anxieties with waiting for a heart I am truly blessed and grateful for the gift of life.

I am feeling good. So I'll just enjoy this time.

But what a roller coaster!

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.
_____________________________________

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!!

Back In The Hospital. . .

I've been in the hospital all week and this is the first time I've had a chance to write. I became so weak that they admitted me. Much of my care has been transferred to a children's hospital because most of the experts that have worked with me once a week through a clinic in another hospital could manage my care more closely because they're always here.

I am anxious to get home. On Monday I'm scheduled for a couple of minor procedures; a heart cath, possibly a stint to help get more blood to my lungs, and maybe a new pace-maker. Lucky me!

I'll try to write later and keep you posted! Thanks for all your thoughts and prayers.

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!

My Heart Defect

Hi Everyone,

I just wanted to write to let everyone know that I am feeling well and thank you for your thoughts and prayers. Our family is really blessed! And we feel it from you. We will find out on Tuesday what the doctor’s plan is for me and my future after they study through the test results of my Heart Catheterization. I've had them several times and usually it's like going to the dentist for a root canal. No big deal. But this one was a little wild.

They put me completely under for the procedure paralyzing my muscles temporarily so I would not move. Then they thread a small tube up through an artery on my left leg. The shot some type of dye and were able to map out my heart and view things they can never see externally. They learned that the left side of my heart is functioning really well and was miraculously in sinus rhythm (normal heart rhythm). But, the other side of my heart, where the right atrium has been blowing up over the years like a balloon full of blood that swirls around, is having a hard time finding where it is supposed to go. It’s cutting off blood flow to my lungs and I get less oxygen to my body.

Waking up from the procedure was uncomfortable. My body was put completely under. They give you a little something to help your body start up again and pulled a tube from my throat which was helping my lungs expand so I could breath. But we ran into a problem and for almost 2 hours my lungs struggled to take over the breathing process. I felt like I was drowning or had a bag over my head and just trying to grab on to something to try and get a good long breath of air. It was not fun. But, I’m glad it’s over and they have great information to evaluate my case.

I've been blessed my whole life to have this heart defect. I am far from perfect and needed this in my life to teach me things I could have never learned without it. I want to live a long time and enjoy my family and the life I've been blessed with. With every struggle I continue to be reminded by a sweet feeling of peace that our Savior, and Messiah Jesus, his atonement, & resurrection, are real truths. God is my friend. And I know everything works out according to His plan of happiness and purpose for living.

So again, I will find out Tuesday what they would like to do. All the prayers and fasting will undoubtedly influence their decision. Thanks for everything . . . Let us also know if any of you are having some challenges that we should pray for.

All the best,

Paul