Posts Tagged ‘Heart Transplant’

We can fix that!

February 3, 2010

I keep writing about advances in cell therapy, cell transplantation, and cell replacement options that are coming in the future. You might think that this is all dream technology – the kind of ideas you have that always start with “Wouldn’t it be nice if…”

All this is exciting stuff, but it won’t be ready tomorrow. Medical research takes time – as much as you want something to work, you can’t rush it. I am sure that Heart Defect researchers know the percentages, they know that roughly 105 people per day are born with a Congenital Heart Defect (CHD) – but they also know that if they don’t get this right, they could inadvertently make a bad situation much worse. And sometimes “getting it right” means trial on human subjects. Early versions of the Fontan Procedure didn’t live up to expectations, but further research and study has made it into a better operation. Sometimes you just have to hold your breath and step into the unknown.

Since we don’t hear that much about medical research until something hits (or goes wrong), you may wonder who’s out there? How many companies are looking for answers? I can’t give you a total number, but a recent report, Tissue Engineering, Cell Therapy and Transplantation: Products, Technologies & Market Opportunities, Worldwide, 2009-2018, gives us some good information about tissue and cell research. The numbers are staggering: In the report, 148 companies are profiled (Click here for a list) and they account for a total of over $1.5 Billion US Dollars spent annually.

Whoa!

The report isn’t for “normal” people – it’s intended for corporations and foundations that might want to drop a spare million dollars or so into a research project but aren’t sure where to start.  (Of course, the only thing you need to obtain a copy of the report is $2,950!) Looking over the detailed table of contents is a real eye opener, it contains not only a list of companies working in the field but also worldwide research goals. There is not a research project titled “Limiting/Curing Congenital Heart Defects” listed anywhere, but CHD related projects are widespread. One of the major goals is combating Congestive Heart Failure (CHF) – Heart Failure often accompanies a CHD, and reducing or eliminating CHF will really cut down on some of the healthcare costs we all endure. More than half of my medication is designed to keep my CHF at bay. Another research goal is replacing heart valves, and a third is heart transplantation – issues that CHDers could very well have to deal with.

And that’s not all. Looking down the list of possible therapies, you notice that someone has a plan to replace or repair almost every body part! I’m hitting the “ol’ man” stage and my bones are beginning to creak, I’d like to have a talk with some of these people.

So take heart – we’re not out here alone.

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!

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).”

With Special Guest Star….

December 11, 2009

Coming up on Adventures of a Funky Heart!….

On Sunday, December 13, 2010, Funky Heart! will host SurgeXperiences, THE premier Surgical Blog Carnival! Be sure to stop in and read the very best writing by Bloggers who really know how to make a cutting remark! As far as I know, this will be the first time that someone with no medical training hosts SurgeXperiences!

And on Tuesday, December 15, 2010, we’ll feature an interview with Heart Warrior and award-winning musician Paul Cardall! Paul is recovering from a recent heart transplant and writes the blog Living for Eden. His latest album, Sacred Piano,  recently spent 20 weeks on the Billboard New Age Music charts and reached #5!

All that and more, so stay tuned!

He’s Living for Eden

October 15, 2009

First, Paul Cardall is a very talented musician. He can literally make a keyboard do things it was never designed to do, and it all looks effortless and sounds wonderful. But I wonder if he didn’t miss his true calling.

Paul was asked to speak to the organizers of the Children’s Miracle Network (Yeah, the people who organize the telethon every year!) and the text of his presentation is on his blog Living for Eden. Paul hit a home run… no, he hit a Reggie Jackson home run: He tore the cover off the ball; knocked it out of the park!

…I witnessed first hand these kids, these cute little kids in their hospital gowns with IVs, teddy bears, and nurses pulling them around in their wagons to x-ray at 6am each morning. I was deeply affected by the amount of ill children who I saw fighting for their lives...However, in my own experience I could not think of a better place and a kinder group of folks who selflessly serve and accommodate families without much public recognition.

I’m sending you over to Paul’s place to read his speech, and you won’t be disappointed.

I promise;

Don’t bury your heart

October 9, 2009

Here’s a Letter to the Editor published in the October 7 edition of the Atlanta Journal-Constitution that you really need to read: My son waits, while hearts are buried.

Here’s an excerpt:

My son, Shannon Leach, is one of the 37 people in Georgia and 2,898 in the United States who is awaiting a heart transplant. Doctors at Emory University Hospital put him on the transplant list in February of this year after four hospital visits for heart failure…We are using every opportunity to let people know of the great need for donors and how easy it is to become one. People are dying every day just because there are perfectly good organs being buried in the ground!

It’s a powerful letter, please read it. And once you’ve read it, you can go over to Shannon’s page at the Georgia Transplant Portal or join his Facebook group.

But the most important thing you can do is to make the decision to be an Organ Donor. The Funky Heart is an Organ Donor… yes, they couldn’t use my heart, but I’ve got eyes, kidneys, blood vessels, and a lot of other organs in reasonably good shape. If you really want it, I’ll even let you have this hernia that keeps bugging me!

Not many people get the opportunity to be a hero. Here’s your chance – donate your organs!

HE’S BACK!

October 8, 2009

You can’t keep a good man down!

Fellow Heart Warrior Paul Cardall has decided that his Living for Eden blog will live on! He’s feeling really good after his heart transplant, and positive comments from his friends and fans convinced him that it wasn’t time to let Living for Eden go dormant just yet. He plans to be posting once a week!

The Dirty Little Secret of HLHS

October 1, 2009

She didn’t even have a name for it.

When Dr. Helen Taussig wrote Congenital Malformations of the Heart in 1947, she described one malformation as “Atresia or marked hypoplasia of the aortic orifice prevents the expulsion of blood from the left ventricle in the normal manner.” Taussig described several variations of the defect – actually different defects, later grouped together under the same deadly name – but could offer no treatment suggestions. Her Tetralogy of Fallot (ToF) patients could at least squat and get some temporary relief; children cursed with this malady died in less than one week. The left side of the heart wasn’t damaged as much as it just wasn’t there.

It wasn’t until 1958 that Dr. Jacqueline Noonan and Dr. Alexander Nadas named the group of defects Hypoplastic Left Heart Syndrome (HLHS). Hypoplastic comes from the root word hypoplasia, which means “small”.

But having a name for it didn’t make it any less deadly as HLHS continued to claim 100% of its victims. This sad story continued until 1985, when the first successful infant heart transplant took place.

At about the same time the Norwood Procedure was developed. Originally designed as one operation (which consistently failed) the procedure was soon split into two heart operations – and eventually three – which seemed to work. HLHS children now had a chance. Obviously long term survival rates aren’t known yet, but approximately 70% survive the three surgery protocol.

And thats when the dirty little secret of HLHS showed itself: While survival rates for the three operation procedure may be in the 70% range, getting from Stage I to Stage II is the hardest step.

The goal of the Stage I operation is to make the Right Ventricle do the job of the defective Left Ventricle – getting the blood to the body. With all of the blood flowing through the right side of the heart, that side is subject to higher flow pressures than it usually receives. A lot higher. In a defect in which the entire left side of the heart is damaged, a successful outcome usually depends on the Tricuspid Valve – located on the right side of the heart.

The inital results were confusing. The Norwood worked – then it didn’t. There didn’t seem to be any rhyme or reason to it, no way to predict outcomes. The surgery itself worked, but too often the results  seemed to be as random as a roll of the dice. The answer was the Sano Shunt, invented by Japanese surgeon Shunji Sano – a direct connection from the Right Ventricle to the Pulmonary Artery through a Gortex conduit. (this sounds redundant, but the Pulmonary Artery is normally disconnected from the ventricle in the Stage I operation). Studies showed that survival chances with the Modified Norwood was 11 times greater than with the Classic Norwood.

And now it is time to turn the tables – we’ve got a nasty little trick of our own. Heart defects have to start somewhere… at some point in fetal development, there must be one isolated problem that seems to “snowball” into something bigger as time passes. If we could find that one little problem and repair it then, maybe we can stop the snowball before it gets too big. A pretty cool idea, and maybe one day…

Someday…

A study released Monday (September 28, 2009) revealed that for seven years, doctors at several hospitals in Boston and Harvard Medical School have been detecting Aortic Stenosis in fetuses. Fetal Aortic Stenosis is a snowball; it usually becomes HLHS as the fetus develops.

70 future HLHS patients underwent surgery while still in the womb – a needle was inserted into the mother’s abdomen, passed into the fetus, and into the heart of the unborn child. A small balloon was used to enlarge the abnormally small Aortic Valve. 51 of the procedures were considered successful… and 30% (17 children of the 51) were born with two functional ventricles. That’s 17 children who won’t have HLHS.

Mark September 28  on your calendar… that was the day that the CHD world changed forever.

Slow down, Man!

September 21, 2009

I’m embarrassed!

Paul Cardall has posted on his blog that he has walked for 30 minutesseven days after getting a heart transplant! That’s longer than I walked yesterday! At least I can claim I cut it short because it began to rain on me.

But as Guy Fieri would say, “That is off the hook!”

A little good news/bad news about Paul’s blog, though… the bad news is that he is planning to abandon it, at least temporarily. He’ll leave it online, for anyone in the future who may stumble across it, need a lift, or perhaps be fighting their own battle with the odds stacked against them. Because he has been there, and done that, and has a chest full of scars to prove it.

The mark of a true warrior is the willingness to share their experiences to help others as they fight their wars.

The good news is Paul is abandoning the blog because he feels it is time to turn his attention to other things in his life – his wife and his little girl! The name of his blog is Living for Eden, and I have a feeling that is exactly what he is going to do: Start living for Eden (his daughter). And for his wife. And his music. And living for Paul, too.

Because on June 9, 2010, Paul plans to climb Mount Olympus. Personally, I think he already has.

Gracie’s Theme

August 5, 2009

Gracie Gledhill had to fight from the moment she got here. Born with Hypoplastic Left Heart Syndrome (HLHS), Gracie had the first stage of the Norwood Procedure at four days old. She never received the second operation, the Bi-Directional Glenn Shunt, because her doctors felt that she was too sick for the operation. Finding a transplantable heart became her only option. (For those who would like to know, all three surgeries to repair an HLHS heart are very well described in the HLHS link)

Gracie  fought and scratched, tooth and nail, never giving up. And finally it looked like she was about to win: the call came, a donor heart had been found, and Gracie was the lucky recipient.

Not so lucky… the new heart was itself damaged, the left ventricle barely functional. Gracie fought, her doctors fought, people worldwide (including Funky Heart readers) prayed, but in the end, Gracie slipped away – not quite one year old.

Fellow Heart Warrior Paul Cardall had become friends with the Gledhill family and introduced his new instrumental Gracie’s Theme at her funeral. Paul has honored Gracie again, by assembling a short video of her life with Gracie’s Theme as the background music.

“I dedicate this video to every family who has lost a child.” – Paul Cardall