Posts Tagged ‘Tricuspid Atresia’

The Ol’ Man

July 12, 2010

When I head to Houston, I’m going to be carrying all new gear!

Sorry, no Greater Regional Memorial Hospital has decided to sponsor the Funky Heart. (Well, no hospital or other organization has offered yet… maybe someday!) The reason is a little more mundane than that:  I’m getting older, and my carry-on is getting heavier.

As far as I know, I am the second oldest living person with Tricuspid Atresia. My Cardiologist told me that I was his oldest TA patient a couple of years ago, then I met a group of other Tricuspids at the Adult Congenital Heart Association’s national convention in Philadelphia. Most of those people were in their 30’s – except for Pam, who is *AHEM* years older than me. (I’m not stupid, I know you don’t reveal a woman’s age without her permission!) So at 43 years old, I think I’m the second oldest person there is with this “fatal” disease.

But my laptop seems to be getting heavier and heavier with every step. It’s a good machine, it just has a few years on it and it weighs in at about five to six pounds. And my computer case is just that, a case, and there isn’t much room for my pills. My ticket and flight schedule – all the paperwork associated with a trip – fit in a folder that slides into the case easily, but my pill containers barely fit, especilly if it is a longer trip. And the Eleventh Commandment states, Thou shalt not pack thy medicine in thy checked luggage; lest thy bag go to Detroit while thy go to Denver. So I wouldn’t mind a new laptop case, either.

The carrying case came first; I got a Swissgear ScanSmart bag. Instead of a case, the ScanSmart is a backpack – it’s bigger and deeper and has more storage space. And it is light, too! I would highly recommend this bag – you don’t even have to take the laptop out of the ScanSmart when you go through airport security. The Transportation Security Authority (TSA) says that you don’t have to remove your laptop IF the laptop is isolated so that the x-ray unit can “see” above and below the laptop. Open a zipper on the ScanSmart and it lies flat like a clamshell; one side contains all your gear and the other side contains  the computer – and nothing else. No problem at all for the TSA. (Of course, they do reserve the right to search any package or bag. Hopefully mine will make it through without any questions!)

And next came the computer – I had to look a little bit before I found the one I wanted. I finally purchased a Toshiba Netbook that weighs two and a half pounds. It works great, but I don’t know all the little tricks and shortcuts that make it work better just yet. That has me a little worried – I hope to be blogging from the conference in Houston, not reading the instruction manual!

Of course, getting older is a good problem to have and something I am looking forward to. If events had occurred as some top doctors had predicted, I would be a 12 inch long grave in the cemetery behind my church, long forgotten by just about everyone.

I’m really looking forward to my impending “Ol’ Man!” status!

The Heart of the Matter

June 1, 2010

“The more I know, the less I understand” – Don Henley, The Heart of the Matter (1989)

Here’s quite an unusual post for Funky Heart! readers – the subject today is not the human heart, but the heart of a kitten. This kitten was, unfortunately, found in a trash can. He was taken to a Vet where it was found that he had a severe upper respiratory infection.  Sad to say, the kitten died the next morning. To everyone’s surprise, the autopsy revealed that the kitten had a Congenital Heart Defect – Tricuspid Atresia!

Here are some photographs of the kitten’s defective heart. (WARNING: GRAPHIC IMAGES!) First take note of how small it is. In the last two photos you can see a hand, so use the fingernail for comparison. The Ventricular Septal Defect is smaller than an adult Human’s thumbnail. Now imagine that is a human heart and you are the surgeon. Whatever you do, you had better be precise. There is absolutely no room for error here.

Next, notice the form of this heart. Many people seem surprised and shocked at just how “natural” a defective heart appears. In their mind they assume that it is full of ragged holes and jagged edges, almost like something that just doesn’t quite fit but has been forced together. More often than not, holes and malformed parts are nicely formed with smooth edges, and look perfectly natural. That can’t be wrong, you are lulled into thinking. It looks like it is supposed to work like that! Oh, how so many of us wish that were true!

The human heart is an amazing thing. It is designed to contract at a rate of 70 to 100 beats a minute, 24-7, 365, for over 70 years. Even defective hearts usually function for a while before they need help. They can expand when there is a problem and if that problem is corrected soon enough, they can shrink back to normal size without any permanent damage. And it is so interconnected – a heart problem can not only affect the heart and lungs as one might expect, but can also affect the liver, and the kidneys, and even the brain.

In the average adult human, it is the size of two fists and weighs roughly a pound, but everything – literally and figuratively – comes back to the heart.

And that is the heart of the matter.

HOME!

February 24, 2010

It always seems to take longer to come back home than it does to go to Altanta. The situation was aggrivated by the weather today – cold and windy with rain (and a snowflake or two spotted while passing through Monroe, Georgia!)

My appointment went very well! My pump is pumping, my pacemaker is pacing, and all is right in my world. Once again, it looks like the best thing that could have happened to me was not getting the Fontan. Everything is funtioning quite well without it.

We’ll talk more later, right now I am road weary. So I’m calling it a night!

Road Warriors

February 22, 2010

NEWS: Zeb has to have surgery (the Ross Procedure) on Friday, February 26. His Mom, Rhonda, is a friend of mine and reader of the Funky Heart!, so I would appreciate it if my readers could help me keep an eye on Zeb!

I am packed for the trip to Atlanta – it can be a pain traveling to Atlanta for my Cardiology appointments, but it’s all a part of having an unusual Chronic Illness. You need expert medical care, and I feel that the team at Emory are some of the best.  As I’ve said before, the expert you need will not be found in a town of 5,000 people. These folks get to be experts by using their skills, and there just isn’t enough medical traffic in smaller cities. So you have to find a big hospital that sees lots of patients, and has a lot of experience to draw on. (There are exceptions to every rule, and two of the best known exceptions in Medicine are The Mayo Clinic in Rochester, Minnesota and Duke University Hospital in Durham, North Carolina.)

A recent study reports that there are only 72 Adult Congenital Heart Defect programs in the United States. So it looks like Heart Warriors will be Road Warriors for some time to come.

We do what we must do to defeat the evil that lives within us.

385 Days, 2700 People, 1 Concert

February 17, 2010

Salt Lake City, Utah heard something very few people expected to hear Monday, February 15, 2010. Not a voice from above or the Mormon Tabernacle Choir singing Hip-Hop, but the sound of one man playing a keyboard as Paul Cardall performed his first live concert in two years.

The doctors told Paul that his heart was giving out on him, that he needed a transplant. When they say you need a transplant, they don’t discuss any other options, because there aren’t any. Yes, you can get a Left Ventricle Assist Device (LVAD) to help it keep pumping, but that really isn’t an answer. The only true answer is a new heart.

They told Paul Cardall he needed a new heart, and the race began. It is a race, you see. How long can we keep that old heart going? Will it last until a donor heart is found? Because now the clock is in control, and it is constantly ticking away. There is no calling a Time-Out in this game.

Paul actually got The Call – on Christmas Eve, no less – but it wasn’t meant to be. That heart had a problem and the doctors rejected it. So the waiting begins again.

385 days after Paul was first listed for a transplant, The Call came again. Another heart. Another chance. This one looked good and Paul’s faithful old heart was replaced. The final step would be to shock the new organ with a defibrillator, but the organ began to beat on its own. Nonplussed, the surgeon zapped it anyway.

Recovery wasn’t easy; you never look chipper right after surgery. But it was in the hospital that Paul’s friend and record producer came to him with an idea: A concert to celebrate Paul’s second chance. “Let’s celebrate life,” the friend said. “Run with it,” Paul responded.

And run with it he did. One of the first things he did was book Abravanel Hall, THE musical venue in Salt Lake City. No small dreams here, no sir. They also put together a silent auction to fund a scholarship for someone affected by Congenital Heart Disease, and the community responded with some wonderful items.

And then it was showtime. Taking a deep breath to calm the butterflies in his stomach (and the pounding of his new heart,) Paul Cardall walked out on stage for the first time in two years.

And 2700 people came to their feet.

Let’s Celebrate Life!

Funky Heart tells the story of his first surgery

February 13, 2010

This was taped earlier today at the Regional Forum on Congenital Heart Disease.

Celebrate Life! – with Paul Cardall

January 19, 2010

When we last saw Paul Cardall, he was recovering from his recent heart transplant and planning two events: Paul is going to climb Mount Olympus (The one in Utah, not the one in Greece!) but first, the award-winning musician plans to take the stage again! Paul Cardall will be performing at the Celebrate Life! concert planned for February 15, 2010 at Salt lake City’s Abravanel Hall. As part of the concert, the Cardall Family Foundation will award a scholarship to Salt Lake Community College to a deserving student with a Congenital Heart Defect (CHD) or their family member in the Rocky Mountain area. If you are in the area and would like to apply for the scholarship, you can download the application form HERE; the deadline for applications is February 10. You can also nominate a family affected by Congenital Heart Defects to receive a small financial gift from the Cardall Family Foundation.

I’ll be returning home from the Broken Hearts of the Big Bend Regional CHD Forum, but I’m hoping Funky Heart! readers  in Utah are planning to support Paul.

Let’s Celebrate Life!

Heather the Heroine!

January 5, 2010

When I attended the Adult Congenital Heart Association’s (ACHA) National Convention in May of 2008, I met a lot of great people – Heart Warriors from all over the country and our Cardiologists. I was especially thrilled to find myself part of a smaller, more exclusive group – Tricuspid Atresia survivors! I had never met another person with Tricuspid Atresia, and suddenly there are eight of us, posing for a photo together! And there were more than eight of us; but this is all that were around when the “group photo” was taken!

The blonde young lady in the black sleeveless dress is Heather Magee, who has become one of my best friends. Even though she lives on the other side of the country, we’ve literally walked the same path. Heather lived in the Los Angeles area at the time, and a few months later saw an advertisement: The TV show How to Look Good Naked was looking for women who have heart disease.

From the way the ad was worded, it was obvious that the producers were looking for women with acquired heart disease, with no thought of Congenital Heart Defects (CHDs) Deciding that it was time she took a stand for her brothers and sisters living with a CHD, Heather marched down to the production offices and gave them a piece of her mind!

To make a long story short, Heather blew the roof off the joint. Before she knew what was happening, she was on the set of Look Good Naked with star Carson Kressley! Kressley and the show’s production staff even organized a fashion show (in which all the models participating had a Congenital Heart Defect) and presented the ACHA with a $10,000 check!

They also filmed a Public Service Announcement (PSA) with Heather promoting CHD awareness, funding, and research. It’s taken quite a while, but I’ve been able to link to the PSA that ran on Lifetime TV. In fact, this PSA is the origin of a line I often use. Heather is a wonderful, articulate woman that I am proud to call my friend. I think you’ll see why I feel that way.

(Technical stuff: The link takes you to a Facebook video and you’ll need to have the latest Flash Player update.)

Click here to view Heather Magee’s Congenital Heart Defect PSA

Because every heart deserves to live a lifetime;

The Reverend

December 17, 2009

We met him in 1977, while in the hospital at the University of Alabama at Birmingham (UAB). “I’m not sure we’ve met,” he said to my dad. “I’m Reverend E.W. Harris, a couple of my members are patients here. And you are….?”

“We’re the Funky Heart family, our son Steve is here for a heart operation.”

“Where are you from?”

“South Carolina.”

“I won’t hold that against you.”

And so began a friendship that would last nearly 20 years. Rev. Harris was a Methodist minister, but he took a bunch of Baptists a long way from home under his wing and became our “second pastor.” He didn’t know us, had no connection to us, and by most standards had no responsibility towards us. At least by Man’s standard. A higher power told him otherwise.

Did my parents need a car? Yes you do, no arguing. You look like you need to see something besides these hospital walls for a few hours. Borrow mine. It’s ok, I’m planning to be here most of the day. My wife will take you around the city.

His wife was his chauffeur; Reverend Harris was born with “tunnel vision” – an ailment that limited his vision to only what he could see directly in front of his eyes. Look through a couple of paper towel tubes and you will get a good idea of how he saw the world.

But he always had a smile and an encouraging word, and jokingly let us know that as far as he was concerned, the Methodists would get to Heaven a few moments before the Baptists would. “I’m hurt,” he pouted when my dad told him that my pastor from home was flying in for my surgery. “We pray to the same God. But my prayers get there a little bit faster.”

How do you figure that?

“God has a summer home in Mobile.” (Alabama city on the Gulf of Mexico, for my non – US readers.)

He was there during that first surgery and my recovery, and there again when I went to surgery in 1988. He was there when the surgeon told my parents “I will speak to you last.” Dr. Pacifico’s skills and Reverend Harris’ prayers got me out of that operating room alive.

Our friendship continued for years after that, long after my doctor moved and I found care elsewhere. UAB is a great hospital, but it is a long way from home. My favorite doctor was now in Greeneville, North Carolina, a lot closer. It continued until that day a few years ago when the call came; the call you begin to expect when friends reach a certain age but never want to answer.

And Reverend Harris had one last surprise for us – he wanted a Baptist to speak at his funeral!

“Looks like you were right, E.W.,” Dad said that day. “You made to Heaven before the Baptists did!”

Living for Eden: Paul Cardall, Tricuspid Atresia

December 15, 2009

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.”

Paul has had six major heart surgeries – his first surgery was the Potts Shunt, when he was 22 hours old – and what Paul describes as  “various minor surgeries involving pacemakers and leads.” All of his procedures were done at Primary Children’s Medical Center in Salt lake City, Utah.

People who aren’t familiar with the Cardall family know that Paul’s blog, Living for Eden, is the name of one of his albums. They may miss the double meaning: Eden is Paul and wife Lynnette’s young daughter, and the name reflects Paul’s determination to “live for Eden.” When asked if Eden was old enough to comprehend the meaning of a heart transplant, Paul said “I think so. She prayed her Dad would feel better and get a heart. God answered her prayer. Not all prayers are answered the way we want but for some kind and merciful reason He answered her prayer. Eden is drawing pictures of me with a big red heart on my chest. She understands and what a great lesson it will be for her as she grows older.”

The other member of Paul’s team is his wife, Lynnette. Herself a nurse, Lynnette had no misconceptions about the struggle that her future husband might face: “She understood the burden getting into this. Her own mother died of Cancer, leaving Lynnette’s schoolteacher father with ten children to care for. Lynnette has been through it. She feared it for her own kids but when her Dad asked, `Are you sure you want to marry a guy who might die?’ She replied, `Why not, I love him!’  In my Mormon culture we don’t marry for time – we marry forever. Some of our marriages are cut short in this world because of death but we believe our relationship endures beyond death because Jesus conquered death.”

The call that the Cardall family had been waiting for came a year ago – on Christmas Day 2008, of all days – “We have a heart for you.”

“The first call for a heart came Christmas morning at one AM,” Paul continues. “After putting my 3 yr old daughter Eden to bed Santa Claus visited our home. The phone rang after Santa was finished telling me there was a heart for me. My first thought was, `Wait… I’ve got to enjoy Christmas with my daughter…’ We woke her up in the middle of the night and opened presents. We left her with my sister-in-law and went to the hospital. Retrospective thoughts of nostalgia and hope in the future flooded my mind. My wife and family were not very hopeful and my surgeon said, `There’s a good chance you won’t make it… if you do we’ll need to go back in several times to stop the bleeding.'”

“We were discouraged but had hope. After saying good-bye and lying on the operating table with some sedative I was told the heart was not good enough because of an overlooked aneurysm. Needless to say, I was relieved.  I knew we’d have another opportunity.”

With no heart available after all, Paul was sent home. Waiting there was Eden… with the Fisher Price Medical Kit that Santa had brought her. Like any good doctor-in-training, she checked Paul’s heart and gave him a “shot”.

“I went home with a renewed purpose and found happiness in reaching out to others with a Congenital Heart Defect (CHD) via my blog. I knew the call would come. Prior to Christmas I was focused on my self and my situation, [but] after Christmas I lost myself in the lives of other people. When the final call came the day before my transplant everything felt right. I believe timing is everything. It was time and I knew I’d survive. My family was also in the right frame of mind and comforted by God’s love.”

Hello to all our much loved friends. This is Paul’s wife Lynnette posting from Paul’s ICU room. We are deeply grateful and thrilled to share with you that Paul has received his NEW HEART!!!! – Living for Eden blog entry for September 10, 2009

I have seen a Transplant patient up and walking the day after their procedure so I asked Paul how long after the transplant was it before he felt better. (“Better” being a relative term; having your chest sliced open hurts!)

“Immediately!” He said. “Although I had multiple tubes running in and out of me I was alive and felt invigorated. I could feel blood flowing in my body and a sensation in my fingertips. My Protein Losing Enteropathy (PLE) was corrected after a couple of weeks. I was home in two weeks and hiking in three. Needless to say, I feel amazing and highly recommend a transplant for those trying to decide… [Lynnette] is amazed. As a nurse she is a realist and wasn’t confident in my outcome. But, as my wife and the love of my life she believed in my optimism and confidence in my own future. I’m so grateful for her support and friendship. I am a very lucky man.”

With a new heart and energy he’s never had before, Paul’s musical career can now resume. “My first public appearance on February 15 in Salt Lake City will be a concert at prestigious Abravanel Hall with musician friends as we celebrate life. We are giving a scholarship to an adolescent with CHD from a silent auction fund.” Tickets to the concert are available by calling  1-888-451-ARTS (2787) and are also available online.

And after the concert? Paul plans to climb Mount Olympus (the one in Utah, not Greece) on June 9, 2010.

And after that?

“Life,” Paul responds, a simple one word statement that carries so much meaning. “Creating memories.  When you have second chance at life all that matters is each other and making sure we spend enough quality and quantity time together. In the end, your family is all you got.  Also, I’d like to have opportunities of sharing my story with those who need to be uplifted and inspired, as well as educating the general public of the growing concern of Congenital Heart Defects (CHD).”