Archive for the ‘Heart Transplant’ Category

One Year

September 9, 2010

…who knoweth whether thou art come to the kingdom for such a time as this? -Esther 4:14

One year ago Paul Cardall got the news:  The heart he desperately needed for transplant was available! Since then he’s resumed his career as an award-winning musician, started a Foundation that grants scholarships to CHDers to attend college, written a book, and become one of the most effective Congenital Heart Defect Advocates that I know of.

Congratulations, Paul! Even though we have never met in person, I am proud to call you my friend and fellow Heart Warrior. Thank you for all you do to fight heart defects, and may your new heart be continually filled with the love of your friends and family.

Yours;

A new link to an old friend

August 29, 2010

Paul Cardall has started a new blog. Titled Before My Heart Stops, it is a series of inspirational writings related to the story of his heart transplant and his new book. You can find a link in my blogroll, labeled Heart Warrior Paul’s Book Blog.

The link to his Living For Eden blog is still there, too, for anyone who happens by and wishes to read it. He hasn’t said anything about taking it down, and in fact earlier when he was contemplating ending it, he was going to leave it up for anyone who might be facing a heart transplant and was searching the internet for information. So if he’s going to leave it up, I’ll keep a link to it. Living for Eden is a wonderful story, much too valuable to fade into oblivion.

And Paul is a true Gentleman – I wrote him a few weeks ago, and asked if I mailed him a copy of his new book, would he autograph it for me? It arrived a few days ago, and on the inside front cover it reads:

MIRACLES HAPPEN! – PAUL CARDALL

No more heart transplants?

July 13, 2010

Will heart transplants one day be a thing of the past?

I think the answer is yes – one day. Not today, and certainly not tomorrow. But there are a lot of options being worked on that hopefully one day will help patients avoid a heart transplant. One of these we have discussed before: The Ventricular Assist Device, or VAD. The VAD is a small pump that is surgically implanted into the body and connects the ventricle to the Aorta. Technically, they can assist either ventricle, but the majority of them are connected to the Left Ventricle, the name “Left Ventricle Assistance Device” and the acronym LVAD are sometime used to discuss any variety of the pumps.

The LVAD was originally thought of as a temporary device to be used to assist a heart until a transplant organ became available, a “bridge to transplant” option. But the units have improved so much that today they are also considered as a permanent implant – “Destination Therapy” that will allow the patient to resume his or her life. With that viewpoint in mind, two important tests have recently begun.

HeartWare International recently won approval from the Food and Drug Administration (FDA) to test their LVAD system as a Destination Therapy device. HeartWare has plans to select 450 patients at 50 U.S. hospitals for the study. Patients must be in “end stage heart failure who have not responded to standard medical management and who are ineligible for cardiac transplantation.” Every patient enrolled in the study will receive an LVAD. Two thirds of them will receive HeartWare’s system, while the rest receive any other FDA-approved LVAD. The study is expected to last at least two years.

Meanwhile, World Heart Corporation is testing its new LVAD, the Levacor VAD. The Levacor VAD unit is being tested as a bridge to transplant only right now, but it is a pretty amazing little machine. The Impeller (a rotor inside the unit; the part that actually pushes the blood through) doesn’t touch anything – it is suspended in place by magnets above and below it. It turns smoother, and since it doesn’t rub against another part it should never wear out. And it is small, too – the unit is about the size of a hockey puck.

The drawback is that both LVADs require battery packs that are outside the body. Unlike pacemakers, no one has been able to implant a LVAD battery unit in the body yet. But I think that is coming, though I can’t predict when.

HLHS Advice

June 22, 2010

Hypoplastic Left Heart Syndrome (HLHS) is a known killer. It is 100% fatal if left untreated, and before 1981 there was no treatment. For several years after that there were very few survivors as doctors learned that a surgical correction could not be done in one step, but rather took two (and eventually three) separate operations. Infant Heart Transplantation was a dream until 1984.

So doctors have only been able to combat HLHS for 30 years, and there is still a lot that is unknown. The hows and the whys of the defect are still only being guessed at. The operations are delicate: not only are they demanding on a newborn’s Circulatory System, but so much depends on blood flow and pressures in the heart. All of the blood now flows through the Tricuspid Valve, which wasn’t designed to move that much blood. The proper “balance” often depends on the patient and there is no “standard” series of operations for HLHS. Each one must be customized to the individual.

Which leads to this interesting report from the March 2010 issue of the  medical journal Pediatrics. 749 Pediatric Cardiologists were surveyed concerning their management recommendations when giving a diagnosis of Hypoplastic Left Heart Syndrome. 99.7% of all Pediatric Cardiologists recommended the three surgery approach. 67% of the doctors discussed a heart transplant with the new parents, and 62.2% discussed Compassionate Care without a surgical intervention. (The high numbers in each category shows that the doctors were not limited to one response.) However, only a small percentage – 14.9% discussed all three options.

Also, the doctors were asked what they would recommend when confronted with a prenatal diagnosis of HLHS. Almost all of them (98.8%) recommended continuation of the pregnancy with surgery after birth. 53.5% argued for continuation of the pregnancy with Compassionate Care/no surgery; and a very high 74.3% discussed termination of the pregnancy. Only 36.5% discussed all three options.

Interesting numbers, and much to think about. The bottom line is that most Cardiologists would tell you to fight for your child. But why would so many of them recommend ending the pregnancy when HLHS is diagnosed prenatally?

UPDATE: A reader has brought to my attention (See comments) that the research report states that the Cardiologists/Surgeons discuss these options rather than recommend them. A discussion, of course, is not a recommendation. Some patients may treat it as such (“The doctor will probably know best…”) but it does answer my closing question much better – and reflect the experiences of my readers who have chosen to comment.

I have stated before that I am not immune to mistakes, that is why I try to include a link to anything that is not in my personal experience – so you can check my work for yourself.

And I would like to publicly thank the commenter for bringing this error to my attention.

Heart of the Game

June 12, 2010

REMEMBER: Grand Rounds hosted at Adventures of a Funky Heart! on June 15, 2010! Entry Guidelines are HERE.

“We can be heroes, just for one day…”Heroes, David Bowie

He’s back!

Adventures of a Funky Heart! first noticed Erik Compton back in March of 2009, when the professional golfer and two-time heart transplant recipient (That’s right – not one, but TWO heart transplants!) played twenty holes of golf with Cardiac Kid John Paul George as his sidekick.  The pair walked onto the course like two gunslingers at High Noon and for a while, Erik had the entire PGA on the run. We haven’t heard much from Erik since then, not through any fault of his own. The Funky Heart has many interests, but golf isn’t one of them. As baseball star Rogers Hornsby once said, “When I hit the ball, I want someone else to chase it down!”

Erik has had his ups and downs since then: he has qualified for four PGA tournaments, only to be frustrated by his heart. Erik does well enough to qualify but then by Sunday, he’s exhausted. His score goes up like a rocket and he falls further and further behind. Last week Erik considered skipping the next tournament qualifier (Not having a PGA Tournament card yet, Erik has to play his way into the weekend match.) But he changed his mind and entered – and promptly found himself in a shootout. Thirty six holes of golf will wear anyone out, but the match ended with a three-way tie. Two would go to the tournament. But this time was different, as Erik took one of the last two slots.

Oh… I haven’t mentioned which golf tournament he qualified for? You may have heard of it – Erik Compton will tee it up in the U.S. Open held at Pebble Beach.

Considering the accomplishments of Paul Cardall and Erik Compton, it looks like a good month for heart transplant recipients!

At the top of the world

June 11, 2010

REMEMBER: Grand Rounds hosted at Adventures of a Funky Heart! on June 15, 2010! Entry Guidelines are HERE.

Paul Cardall felt water on his back as he climbed Mount Olympus just outside of Salt Lake City yesterday. Concerned, he checked his backpack for leaks. Wife Lynnette quickly found the source:

A few yards into Wednesday’s hike, Paul’s commemorative “Celebrate Life” hike T-shirt begins to soak. He checks his backpack for water leaks, but there are none. His wife, Lynnette, touches his back.

“It’s sweat,” she says.

“Sweat,” the professional pianist repeats. “A new thing for me.” – The Salt Lake Tribune

No one thought Paul could do it. Shoot, no one even thought he would be here. Last September Paul Cardall, Husband and Father, was reduced to a shell of a man as his tired overworked heart slowly wound down. Born with Tricuspid Atresia and Transposition of the Great Arteries, his heart defect didn’t care that he was an award-winning musician. It didn’t care that people all over the world were following his story through his blog, Living for Eden. It didn’t care the his wife and young daughter needed him. All it knew was that 1 in 125 people are born with a Congenital Heart Defect. On that day, at that time, and in that place, Paul was the One.

And now it was a race. A game of Beat the Clock with Paul’s heart as the clock. Find a donor heart quickly, get it to the hospital, and our side has a chance. Let the final seconds tick off the clock and – well, no one wanted to think about that. But Paul and Lynnette had sat down and had THE TALK. What happens if…?

The call came – on Christmas Eve! – but that heart had a problem and Paul was left waiting. Then nine months later, another call. This time everything was GO! and the transplant went smoothly. Heart 2.0 even began to beat on its own, not waiting for the electrical jolt that was supposed to start it. Nonplussed, the surgeon zapped it anyway.

Now the race was on again, but this time it was different. Doctors told Paul to expect a two month hospital stay to recover. Paul was out in two weeks.

It was in that hospital that Paul stood and stared at Mt. Olympus and promised that he would climb that mountain. Not one day, not someday, but on June 9. Exactly one year after his brother died, and less than a year after his heart transplant.

His doctors fainted. Well, all but one of them:

Though some of his doctors at Primary Children’s Medical Center had wondered aloud whether Paul could actually make the climb less than a year after the transplant, cardiologist Angela Yetman not only believed he could do it, “she started up the mountain after we did and caught up with us,” he said. – The Deseret News

Someone glanced at their watch when they hit the summit: 1:00 PM. Photographs were taken, a prayer was said, and there were hugs all around. But Paul hadn’t walked the final steps; hadn’t reached the peak. It seems like such a little thing, less than a foot away, but mountain climbers are a pretty insistent bunch. You either reach the peak, or you don’t. There is no almost.

Finally Paul stepped forward and placed his foot on the summit at 1:10 PM… the moment his brother passed.

Paul has a motto, just as I do. He will often say “Let’s Celebrate Life!” That’s your assignment for the weekend – celebrate your life, especially if you have a heart defect. My father grew up in a time when a child born with a Congenital Heart Defect lived a short, painful life. I live in a world where a heart transplant recipient can climb a mountain.

What will the Cardiac Kids of the future see?

LET’S CELEBRATE LIFE!

The heart to climb the Mountain

June 9, 2010

1:00 PM June 9, 2010: Paul Cardall at the top of Mount Olympus

“You gotta have the heart to climb the mountain if you wanna see the other side.” – Randy Travis

GO PAUL!

I get by with a little help from my HeartMate II

May 28, 2010

I’ve written about Left Ventricular Assist Devices (LVADs) before – these are small (and getting smaller!) machines designed to be attached to the Left Ventricle and give a weak heart a needed boost. Usually it is used as a “bridge to transplant” – to keep a heart going until a donor heart can be found – but more and more often they are being used as a temporary measure. The LAVD is being inserted and left in long enough for the heart to rest; if the natural pump improves the artificial one can be removed.  Robert Jarvik and a team from the University of Maryland are even developing LVADs that can be used on children and infants!

Henry Ford Hospital in Detroit Michigan has been studying LVADs and they have discovered that they help improve the right side of the heart, too. They also show that a newer model of LVAD, the HeartMate II, has a significantly lower risk of infection than its predecessor.

The HeartMate II is a continuous flow pump – unlike the earlier model, which tried to simulate the beating of the heart. Because of this, someone using a HeartMate II LVAD has almost no pulse!

“Get outta here, kid!”

May 26, 2010

Gabriella had her heart transplant on May 17 (We followed her progress HERE) and on May 25th, her doctors kicked her to the curb!

It is my understanding she is still in the area – living in a temporary home while her doctors get her meds exactly right and her parents learn how to care for a post-transplant child – but she is no longer in the hospital!

We have a problem!

May 21, 2010

Well, here’s something else we have to work on… Adults with Congenital Heart Defects (CHDs) don’t fare as well as others when they receive a heart transplant.

That’s what the research shows, but I can tell you that ain’t always so. My friend Anthony had has defective heart replaced just over a year ago and he is doing quite well! Paul Cardall is also doing well – and on June 9, 2010, Paul is going to climb Mount Olympus just outside of Salt Lake City, Utah!

But let’s look at the “official” numbers. First, this report is from the United Network for Organ Sharing (UNOS) so there is no doubt it is legitimate. According to the new research, almost 8500 patients who received a heart transplant between 1990 and 2008 were studied. Of the 8496 people in the study, 575 of them were adults who had a CHD. While the number of Heart Transplants seems to be trending down, the number of adult CHDers receiving a transplant trends up! (This may sound strange, but the study focus on patients who received a heart transplant only. Overall, we seem to be doing more multi-organ transplants – heart/lung, heart/liver. The study does not count these patients.) And while more of us are getting new hearts, we don’t seem to do as well. More of us need another transplant, or even pass away.

These are scary statistics, no doubt about it. But they are helpful – before we can fix a problem, we have to realize that there is a problem. I am sure that some transplant surgeons have known for a while now that Adult CHDers don’t seem to do as well after transplant, but all they had to base that on was experience. Now we have scientific evidence to prove it.

The next step is to study the numbers some more, or redesign the study, and try to find out why we don’t do as well after transplant. I’m willing to bet that UNOS is already doing that.

Find the problem, then fix the problem.