Interviewed by Steve Catoe, Adventures of a Funky Heart!

I was fortunate to do an interview with fellow congenital heart defect survivor and friend Steve Catoe. His popular blog, Adventures of A Funky Heart, provides wonderful insight into the world of congenital heart disease. He often travels to share his own story and provide hope and understanding concerning our chronic illness.

Living for Eden: Paul Cardall, Tricuspid Atresia

By Steve

Recently I had the chance to interview Paul Cardall, an award-winning musician, (His album Sacred Piano recently hit #5 on the Billboard New Age Album charts) Husband, Father, and fellow Heart Warrior. Like me, Paul has Tricuspid Atresia, (along with Transposition of the Great Arteries) and he recently underwent a successful heart transplant. I’ve kept you updated on Paul and his need for a transplant here on Funky Heart!, but you can read his entire story over at his blog, Living for Eden.

Funky Heart! readers have heard me describe my heart defect many times, but every defect is different – and its effects are different, from one CHDer to another. When I asked Paul to describe his heart defects in his own terms, he wrote “Before my heart transplant, I was born with what my parents and cardiologist called a half heart. Only half of my heart was functioning. The other half was either missing or not being used. As I grew into adulthood I learned the serious nature and depth of my congenital heart defect. I was living primarily on a single ventricle instead of two. In addition the major vessels that carry and deliver blood from my heart were swapped.”

CONTINUE THE INTERVIEW - CLICK HERE

Thumbs up on each biopsy!

Photo: Me and Eden dressed for Halloween, Granny was in paying for Gas. Can Cats drive?

After a fun Halloween weekend, Monday morning I had my fifth biopsy since receiving my heart transplant 56 days ago. So far all of my lab results have been wonderful. There are hardly any signs of rejection, if any. In other words, the heart I received is a perfect match, extremely strong, and my body is receiving the organ very well. I am fortunate, blessed, and grateful to God.

What is a Biopsy?

My myocardial biopsies are performed in an operating room known as the cath lab by a cardiologist. In this test a small amount of tissue is removed from the internal lining from the heart for testing. It is used to help detect rejection of the new heart after a heart transplant. A long, flexible tube, called a catheter, is inserted into a vein and threaded into the heart's right artrium through the tricuspid valve into the right ventricle. The doctor can guide the catheter by watching its movement on a monitor showing an X-ray image of the area. The tip of the catheter is fitted with tiny jaws that the doctor can open and close. Once the catheter is in place, the doctor will take several tiny snips of muscle for microscopic examination.

What does it feel like?

Most adults and some teenagers choose to be awake for the procedure since most sit still and can endure the tugging.

Because I am doing this in a children's hospital I still have the luxury of requesting anesthesia. My first biopsy was very painful because of some nerve pain so we decided to use anesthesia the next time. Unfortunately, I have some reaction to my anesthesia which seems at times more challenging than the transplant did. For several minutes afterward I feel like I’m in deep water trying to reach an unattainable surface. However, this passes. And I remind myself no matter how hard it is in that moment of despair all things pass. Eventually, it’s over and I feel renewed and happy to be alive. I don’t like talking about the hard moments because I’m an optimist and try to see things from a long-term perspective.

My team and cardiologist have been extremely professional and kind in helping to ease the pain.

As time goes by and there is no sign of rejection my weekly biopsies turn into bi-monthly, monthly, every three months, six months, to every year. At this point, if all goes well I won’t need another one until after Thanksgiving.

I often think of the words of Joseph B. Wirthlin who put suffering in perspective:

“Each of us will have our own Fridays—those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays. But I testify to you in the name of the One who conquered death—Sunday will come. In the darkness of our sorrow, Sunday will come. No matter our desperation, no matter our grief, Sunday will come. In this life or the next, Sunday will come!”

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)

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