Did you just say esophagogastroduodenoscopy?

If my toddler read this entry she would probably ask if I learned it watching “Sid the Science Kid.” Unfortunately, when it comes to medicine I learn from experience.

The twice-daily lovenox shots I shied away from almost 8 months ago are now as painless as brushing your teeth. Designers of the insulin just need to sharpen the needles to get through thickening scar tissue. And so it goes with lab work, tests, and now minor outpatient surgery.

Cardiologists Melanie Everitt and Angela Yetman have been concerned about possible esophageal varices, which are extremely dilated sub-mucosal veins in my lower esophagus. They are most often a consequence of portal hypertension, commonly due to cirrhosis; patients with esophageal varices have a strong tendency to develop bleeding. It would make an already difficult transplant recovery much more challenging.

And so this past Monday I underwent a minor outpatient procedure referred to as an upper gastrointestinal test or esophagogastroduodenoscopy. Can you believe that word? You would think Mary Poppins had made it up.

Nonetheless, Dr. Dan Jackson at Primary Children’s Medical Center in Salt Lake City, Utah performs these all of the time and pronounces the word perfectly.

I walked into the operating room, laid flat on the narrow table a top what I call a patient's Tempur-Pedic mattress. I enjoyed some brief conversation with a few of the surgical nurses while a gifted anesthesiologist put me to sleep. I probably didn't get to finish what I was saying. Nonetheless, it was not very important.

While subdued, Dr. Jackson inserted a tube down my throat into my stomach. He pushed a minature camera in a pill form through me. Fortunately, he found no major concerns. There are a few varices in the lower third of my esophagus but nothing that needed banding.

While subdued Dr. Everitt was kind enough to arrange the removal of my existing picc line and reinsert in the same vein a double lumen picc so I can begin receiving nutritional formulas containing salts, glucose, amino acids, lipids and added vitamins this coming week. It is called total parenteral nutrition (TPN) and will help my body stay tuned up for major surgery.

Earlier that day my father Duane and wife Lynnette volunteered to keep me company. We’ve been through this before and so they came equipped with laptops and books to keep them busy.

I often feel sorry for the many parents who’ve come for the first time with nothing to do but pace the floor and watch Hanna Montana on the children’s hospital network television. Of course, I’m not sure what’s worse? Having surgery, or watching Zac & Cody on Disney channel and learning how suite their life is?

As of today, my sore throat is gone. But, at some point, I bit my lip and developed a few canker sores. No matter, I'm very pleased with the results and the procedure was practically painless.

Living for Eden Concert | Thank you!!

Pictures from one of the audience members Regina Fee see more of her photos from the show

Words cannot adequately express our sincere appreciation to all of you for joining with us to celebrate life and living for Eden. Our family experienced a feeling of love that we will cherish for a very long time. You are wonderful and we will never forget your kindness, love, and support.

We are optimistic about my future! My doctors at Primary Children’s Medical Center Angela Yetman, Melanie Everitt, their staff and surgeons are gifted and skilled professionals whose wisdom is blessing our community, particularly those who are born with congenital heart disease. And whether things go as we hope or not – one thing I do know is that every day we have to enjoy this life should be celebrated. It is a gift from our Heavenly Father. And as the Louie Armstrong song goes, "It’s a beautiful world" and I look forward to each new day.

Finally, a special thank you to all of the musicians, production, ushers, volunteers, family, friends, and the two people who pulled their resources together to do this event. My good friend and former business partner Jeremy Baron of the Baron Music Group and my dear sister Carol Burgoyne who is not only one of my best friends but one of the most talented organizers I know.

Thank you everyone. We love you!

Paul (Lynnette & Eden)

P.S. Please say a prayer for Jack Thomas Trent whose going in tomorrow morning for his Fontan procedure at Primary Children's Medical Center. And pray for Dr. Peter Kouretas who will perform the delicate procedure.

The Fontan which I received was the old verson which has sustained my life for 22 years. The new Fontan will go much further and longer for kids like Jack.

P.S.S. Also baby boy Grant (HLHS) is going to have some surgery. Say a prayer for him. http://grantmeaheart.blogspot.com/

What's up Doc?

Pictures: This is my heart from a CT Scan

I went to the transplant clinic today to meet with my transplant doctor Melanie Everitt and my adult congenital heart doctor Angela Yetman. I also ran into one of my thoracic surgeons, Dr. Peter Kouretas. They are a wonderful team and I enjoy seeing them. The highlight of the clinic for my wife and me was interacting with a few of the “heart moms” and their beautiful children who’ve been transplanted. We saw little Daxton, pretty Kaidence, and baby Benjamin.

I went home feeling extremely confident about the “actual” transplant surgery. Angela Yetman, MD said, “Transplants are one of the easier forms of heart surgery although my anatomy will make it a little more challenging.” It’s the recovery that will be the most difficult time, according to doctors. I remember Dr. Kouretas’ colleague Dr. Hawkins assure me that there is an 80% chance they’ll need to re-open my chest to get rid of excess fluid. I say, “just put a zipper on there and go to town.”

Adults who’ve had the Fontan procedure like me do in fact recover much slower. I could be in the hospital 2-3 months. Nobody really knows. Again, I say, “bring me some hospital Jello through a straw.” As long as I get an opportunity to go home and enjoy my little girl and beautiful wife I am ready to run that marathon until I reach that finish no matter how hard it will be.

Pictures (this is my huge heart. the right atrium is 3.94 inches in diameter. it looks like a giant cocoon with one ugly caterpillar waiting to fly away. CLICK ON THEM TO ENLARGE)

Life is a Great Gift

( Photos by Busath Photography. We went to Busath so I could give Eden a Daddy-Daughter picture to capture this moment in our lives. Busath does beautiful work. The one below is of our family. )

I have been richly blessed as I continue to wait for a heart. This journey has been nothing short of a miracle. Life is a great gift. And I look forward to each new day.

I want to thank all of you for your thoughts and prayers on behalf of my little family.

My new blog friends are wonderful! Thank you for sharing your lives with me. All your comments have given me great strength. Please forgive me if I am not able to respond.

I want to thank my angel of a wife Lynnette for everything. She doesn't have much time to herself these days. When she's not working as an RN in the IMC Newborn Intensive Care she is caring for our daughter. Lynnette has been the great blessing of my life. In dealing day to day with my health issues and my unforeseen future she is a saint. I married my best friend and ache to spend every waking moment with her. I adore her love, patience, loyalty, spirituality, humor, wisdom, and beauty. Our sweet little girl Eden continues to laugh, dances, and learns how much love we have for each other through ups and downs.

I want to thank my parents for setting me loose as a child and allowing my heart and lungs to strengthen whenever I had a heart surgery. God put me in their arms.

I have a lot of siblings on both sides. There are so many it would be a whole page to mention each one. Each is amazing and great examples to me. My daughter adores her cousins. Everyone has thrown their arms around us in this time and has been available to help at a winks notice. I love you guys!

My friends and those who I attend church with have been a wonderful blessing and I look forward to seeing their faces each Sunday and throughout the week for various reasons. I love being involved and helping where I can. Now that I’m on the other end of the service I deeply appreciate what they do.

And I want to thank the wonderful medical team at Primary Children’s Medical Center. I have been blessed over the years with great cardiologists, nurses, radiologists, etc., the list is too long to mention. I’ve enjoyed care from experts at Intermountain Medical Center, The University of Utah Hospital, Jordan Valley, and Primary Children’s Medical Center. Of these great folks I want to especially recognize Doctors “Uncle” George Veasy, Conrad Jensen, Donald Doty, John Hawkins, Dale Renlund, Abdallah Kfoury, Patrick Fisher, Larry Green, Michael Adjei Poku, Ed Clark, Charles King, Peter Kouretas, Aditya Kaza, Ronald Day, Robert Gray, Elizabeth Saarel, Susan Etheridge, Roger Freedman, Brian Crandall, John Doty, and the many others who’ve worked on my case.

I am blessed at this time to consult with adult congenital heart doctor Angela Yetman. She is a fighter and extremely optimistic. She is extremely intelligent and my wife and I greatly admire her.

I have a wonderful transplant cardiologist Melanie Everitt and her team; Michelle, Emily, and others. They are always upbeat and I look forward to seeing them each visit. For those who’ve worked with Dr. Everitt I think they’ll agree with me that her sensitivity and caring nature is an absolute bonus to her wisdom.

Overall, thank you everyone! I love life. I am determined. You have all strengthened my conviction to carry on.

BONE Transfusion | Doctors Tomorrow

Milk won't cut it. My calcium is low. It's an 8. Should be 8.7 - but that's alright because nobody is perfect. Nonetheless, I had my 2nd transfusion to strengthen my bones. My last one was 3 months ago. You basically get hooked up to another IV, lay on a bed, listen to some tunes, and wait 3 hours. I listened to some Jack Johnson, a little Journey, and a sermon by Dieter F. Uchtdorf. Oh you do get a drink. They gave me BOOST. And, a turkey sandwich (like the ones they have on the Delta Airlines when you sit in coach). That was thoughtful.

Tomorrow I get to have some more labs drawn and see my congenital cardiologist, Angela Yetman, and the transplant cariologist, Melanie Everitt. They're brilliant women and so are the many good folks that work with them to save so many lives.

(Pictures: My IV, and the cool gum ball machines at Primary Children's Hospital)

Getting Out / 100g Protein / P.V.C.

Yesterday at clinic my transplant cardiologist Melanie Everitt said my lab work looked good. I have more color in my face because I am no longer anemic. I am also feeling better than I have been, given our circumstances.

I was able to take my family on a few outings this past week, which we haven’t done in a long time.

Here’s a few pictures:
We visited down-town Salt Lake City and saw some historical sites; i.e. Mormon Tabernacle; we also had some good friends take us to dinner for big juicy protein steaks. I am eating like 100 grams of protein each day.

This is all good news! I need to be strong for the transplant operation. It will help in the recovery.

I am fortunate to have wonderful doctors and nurses. I feel a great connection with each one of them and I trust their judgment.

But, again, every time I go into the children hospital to receive care I see kids in hard circumstances. But, I'm at peace knowing a few of the people who are providing their medical care.

We did learn that my heart is having premature ventricular contraction (PVC), also known as ventricular premature beat (VPB) or extrasystole, is a form of irregular heartbeats in which the ventricle contracts prematurely. This may be perceived as a "skipped beat" or as palpitations. So for the past 24 hours my heart has been monitored to see how often I have them.

Possible triggers of PVC – I commented on each of these.

* Anxiety/Stress (I have some of this)
* Chocolate (I do eat a lot of this)
* Caffeine (Coca-Cola, yes)
* Cocaine or other stimulant (No)
* Calcium/magnesium imbalance (Yes, I have this)
* Dehydration (sometimes)
* Exercise (I don’t do this)
* Hormonal imbalance (Nope)
* Hypercapnia (CO2 poisoning) (I have no idea)
* Hyperstimulation of the Vagus nerve (Not sure)
* Lack of sleep/exhaustion (Yes, this is true)
* Overeating (A little bit)
* Low copper (I don’t eat pennies)
* MSG (I think this is in a bunch of the food I eat)