Look Mom, I'm a real boy - No Strings!

Doctors completed a full heart biopsy this afternoon. The new heart is beautiful! I have some minor rejection factors and pressure which can be resolved by the proper chemistry of drugs. All people with transplants have a low immune system because the new heart or organ is not our own DNA and the body wants to fight it like a virus. This is why people with transplants take a range of drugs like; Prograf, Cellcept, Septra, Valcyte, and Prednisone. It's all a matter of chemistry and taking medication on time to help resolve issues and protect the new organ from rejection and failure.

Unfortunately, because of the poor immune system and the fact my country is approaching flu, swine flu, cold, and more season it will be some time before I am able to go out into public places, which may be difficult for someone who enjoys people.

My kidneys and other organs are functioning beautifully. We worried about future issues with my organs having had protein losing enteropathy, which is working itself out. The varicose veins in my legs have dissappeared as well as some spider veins. My skin and color look normal. And my eyes are clear and blue. My daughter thinks I'm wearing new lipstick. The remarkable human heart works miracles in and of itself. I'm amazed and humbled!

Finally, for the past 5 years I've worn oxygen at night to help me sleep. We've had a concentrator in our home with a 50 foot chord. Eden followed the chord if she wanted to find her Dad. In addition, I had a fanny pack carrying a medication called milrinone, which flowed through a picc line into my heart for almost 10 months. Of course, the home-health care system put their logo right on front of the fanny pack so I felt like I walked around plugging the company. (For those of you in Utah, the only other guy wearing a fanny pack is Dell Schanze) My brother in law thought I should have imprinted paulcardall.com on the bag instead.

I've been looking forward to is doctors removed all of my chest tubes and IVs from my body. I'm able to walk around and enjoy the world without any strings attached. Because of this great news I posted an appropriate song on my playlist from Pinnochio. Thought you might enjoy these lyrics:

I've got no strings
To hold me down
To make me fret, or make me frown
I had strings
But now I'm free
There are no strings on me
Hi-ho the me-ri-o
That's the only way to go
I want the world to know
Nothing ever worries me

Watch the scene from Pinnochio - http://www.youtube.com/watch?v=P4X1UEVGvwY

What pulls me through?

(I've begun more iron infusions through my picc line which should give me boost.)

It's been a tough week. My body is tired. And I'll admit that I've been depressed at times and full of anxiety. And yet, at moments how can I feel empty? I have every reason to live and love.

What pulls me through?

Others. Family. Friends. All of you. My wife is beautiful in every way. Eden is adorable.

My former Bishop, who I served with as his executive secretary in our Church of volunteers, had his hip replaced. His recovery has been quick because he's a remarkable human being. He walked almost a mile to visit me using two forearm crutches. He's a man I admire and hope to one day be like.

Also, our neighbor who has cancer spread throughout her body, dropped off several dark red garden geraniums to add to the beauty of our yard which was spring cleaned by neighbors. They have green houses and spend time growing all kinds of vegetation. They also have a son whose had a heart transplant. She is a remarkable woman, who despite her illness, sits near us in church each week to thank God for what we have and hope for.

Another neighbor, a good man, father and husband, who has needed a liver transplant, who almost died a month ago, got a call for a liver. The surgery was a success and he is on the mend. It's a miracle. And we thank God.

When I am discouraged a tool that lifts me is music. With it's varying emotions and influence particular music pulls me through. What would the world be like without it? Pretty depressing. This past week I've been absorbing the lyrics and song from popular Christian artists MercyMe called I would die for you. The tune is on my playlist and is truly inspiring. It's as though they are singing my thoughts.

Finally, I had a great time watching the American Idol finale. I'll admit it. From a professional standpoint you can't go wrong with young newly discovered talent performing with icons Lionel Richie, KISS, Queen, Cindy Lauper, and others. The song Permanent former idol winner David Cook performed for his brother who died with a tumor was inspiring.

PICC Lines | Pick your PICC Lines.

This was a week of picc lines. (Incidentally, I should be grateful. Having a picc line with a good source of milrinone does make me feel better. So, being connected to a tube full time is not that bad.) I went in to the hospital on Monday because the area where my original picc in my right arm that I received 6 weeks ago was becoming irritated and red. We don’t want an infection so we decided to pull the picc and put a new one in my left arm. Only this time, I was not sedated like last time so I do remember the experience. Most adults aren’t sedated. But, I’m sort of a baby when it comes to needles and wires being thread through my veins so I usually beg for it. But, I manned up and went for it without sedation. We did the procedure in the cath lab. Needless, to say they gave me several shots that numb the skin before inserting the wiring and eventual picc. Like at the dentist when he numbs your gums before he drills. It wasn’t that bad. I went home 30 minutes later. Of course, my wife heard me say the whole ride home, “That wasn’t fun.” Oh well, I was happy to be home. After a few hours we noticed the leaking, slow leaking watery substance coming from where the picc was inserted. My wife, who is my home-health care nurse (lucky me), ended up changing the dressing over the next few days 6 times because of the leaking until yesterday I went in and had that picc removed and a new one placed in my right arm above my elbow where the original one was. Needless to say, the big needle wasn’t that bad and I made it home to watch the University of Utah destroy Alabama in a much-deserved BCS bowl. Let’s just hope this new picc doesn’t leak either. It’s only been a little more than 12 hours.

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A PICC is a long, thin, flexible tube known as a catheter. It is inserted into one of the large veins of the arm near the bend of the elbow. It is then slid into the vein until the tip sits in a large vein just above the heart.

The space in the middle of the tube is called the lumen. Sometimes the tube has two or three lumens (known as double or triple lumen). This allows different treatments to be given at the same time. At the end of the tube outside the body, each lumen has a special cap, to which a drip line or syringe can be attached. Sometimes there is a clamp to keep the tube closed when it is not in use.

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.
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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.
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Getting Out!

I was finally able to get out and do something other than travel to a hospital which felt really good. I went and voted early and then hit the drive through of "Crown Burger" with a friend. In addition, I went with my wife and daughter to my sister's home so Eden could trick or treat with her cousins. For a little girl who is always wearing princess dress ups she wanted to go as a spider. It was cute.

I saw my cardiologist Angela Yetman today and things looked stable. I'm giving myself lovanox shots twice a day to help me absorb protein.

I'm wearing oxygen 24/7 at 3 liters and I carry around the milrinone medication pumping into my arm through my picc line (there are 2 pictures to the right of the picc).

It is difficult to shower. But, I am grateful that these things are giving me more time while we wait for my heart.

Incidentally, I was moved up on the list to a status 1B. What does that mean? You're either a status 7, status 2, status 1B, or status 1A (I guess because they can't count from 1 to 4). To my understanding, and I might be wrong, a 7 is a person who has a hard time qualifying for a heart because of other disease, infection, weight, and more. A 2 is a person who needs a heart but they're at home and able to go to work or they are somewhat stable at home. A 1-B is in and out of the hospital, receiving medication through a picc full time, and other difficult issues. The 1-A's are in the hospital and don't have vey long. So, it certainly is an unusual situation because there are plenty of people who need a transplant of some kind. There is a great web-site with data about the list and those waiting or donating. CLICK HERE