Archive for the ‘Transplant’ Category

I Could have Danced all Night

October 27, 2010

TEDMED is a yearly medical conference in San Diego, so attendees must have wondered what was going on when Charity Tillemann-Dick (Who performs under the name Charity Sunshine) walked out and sang for the audience.  TEDMED has an unusual format – every speaker, from the most well-known to the guy you never heard of, gets 18 minutes to make their presentation. This woman could really sing, but her clock was running. Whatever point she was trying to make, she had better get to it.

And that’s when Charity dropped the bomb: “One year ago today, I awoke from a thirty-day coma after receiving a double lung transplant.”

Charity had been diagnosed with idiopathic pulmonary hypertension, a disease that causes the blood vessels in the lung to lose their elasticity and the right side of the heart to enlarge. Doctors told her she would have to give up singing. Charity wasn’t pleased with that option, so she changed doctors. The drug she chose to slow the hypertension down has to be infused 24 hours a day and requires a four and a half pound pump. Charity learned how to hide it under her opera costumes and just kept on going. As expected, her health deteriorated to the point that she needed a transplant.

There was a good chance that a lung transplant would kill her voice, so she asked the doctors to do a special procedure to try to save her vocal cords. The transplant was a hard thing, throwing her into a coma for a full month. But one year ago, Charity woke up, and began to piece her life and her singing career back together.

By now her 18 minutes were drawing to a close. “We need to stop letting disease divorce us from our dreams. We will find that patients don’t just survive, we thrive,” Charity said, and with that she ended her presentation with a very fitting song.

She sang I Could have Danced all Night.

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;

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!

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.

Change of Heart, Part II

March 29, 2010

Sharon concludes the story of her husband’s heart transplant. I’ve also included a link to Part One just in case you missed it!

It’s been a year since these events took place, and Anthony continues to do well with his new heart! And be sure to leave a comment (on Sharon’s blog, not here!) wishing her and Anthony the best!

If you haven’t signed an Organ Donor card yet, why not?

Heart-a-versary, Part I

Heart-a-versary, Part II

Change of Heart

March 26, 2010

“You can  settle for less – an ordinary life – or do you feel that you were meant for something better? Something special?”

I used to have a T-shirt that read “Change of Heart at UAB”. UAB is the University of Alabama at Birmingham, and in the late 1970’s it was THE place for Cardiac surgery in the Southeast. After my second heart surgery the staff expected you to get up and get around, and one day my “travels” took me into the hospital gift shop, where I bought my shirt. My dad contended that had to be the most expensive shirt I had ever bought (Buy a T-shirt, get a FREE Heart Operation!) but I was proud of it.

But right now, I’m going to send you on a trip. You’ll be visiting my friend Sharon, who is going to tell you the story of an event that happened last year – one year ago exactly, March 26, 2009.

“Pack a suitcase for 3 days and get here as soon as possible,” he said. I started to cry and scream all at the same time. “You’re kidding? Thank G-d!!! We have it! You’re getting the heart!!!” I still get tears when I think of this moment.

You’ve guessed it – you are going to ride along with Sharon as her husband gets a desperately needed heart transplant. You won’t find the entire story – Sharon says she was in tears as she wrote it and had to take a break. But you will see the next part when she posts it.

And I bet you’ll be in tears, also.

But for right now, GO! I told Sharon that she’s have some company today!

Click here to read Sharon and Anthony’s story!

Friday Music: The Load Out

March 25, 2010

For Anthony, who got a new heart on March 26, 2009.
And for Paul Cardall.
And Euan Sharp.

Sung to the Tune of “The Load Out” by Jackson Browne.

Now the halls are all empty
Visiting hours ended long ago

All the patients have settled down
And she’s the first to come and last to leave
Looking for what can’t be found
Tonight the patients are alright
Waiting for their time
And she always tells them to never give up
And they’re so sweet–
But now she can hear the sound
Of a telephone loud and clear

And that’s the sound she loves to hear

Now call the Surgeon and wake up the flight team
Prep the gear and check it all again,

‘Cause when it comes to moving fast
You know you guys always win

But when everything’s been packed away
We’ve got one more call to make
So just make sure you are all set to roll
Before I let the family know.


Now the plane is on the way
And the patient is ready to go

We’ve got to fly all night
and save a heart in Chicago
or Detroit, I don’t know

We’ll go anywhere we need to go
And all hospitals just look the same
We just pass the time in the corner of the room
Trying not to get in the way

Till our turn comes and we receive the heart
And then we’re on our way home

Now we got extra ice and saline on the plane

We’ve got the surgeons on the telephone
We’ve got Air Traffic Control on the radio
We’ve got time to think about what we do

Carrying your life in our hands
And you’ve got time to be with the ones you love

While the miles just roll away
But the only thing that isn’t fair
Is we never get to see your face.

People you’ve got the power over what we do
You can sit there and wait
Or you can pull us through

So come along, pray us home
With your help we can’t go wrong
‘Cause when that morning sun cracks the sky
You’re going to wake up with a new lease on life
But we’ll be scheduled to appear
A thousand miles away from here…

Heart of Steel

March 17, 2010

My brother used to be a Manager for a major movie theater company, so I have a few movie posters. A lot of movie posters are produced; the average movie generates several different versions. There’s one for a movie that is coming soon, one for when the movie is actually in the theater, and sometimes there’s even a new poster produced for the last few weeks of the run, especially when the box office receipts are close to breaking a record. And then there is the “teaser” poster.

The teaser poster is the first poster to be hung – the movie may be 6 months from its opening, it’s not even COMING SOON TO A THEATER NEAR YOU yet. I have a teaser poster that has… nothing. Just a blue sky and white clouds. And at the bottom of the poster is one line:

On June 18th, you will believe that a man can fly.

You may have guessed by now – this is the teaser poster for Superman: The Movie. Superman featured new technology that made the flying harness disappear: The camera was filtered to not pick up a certain color, and of course, the harness and wires were all that color. It’s old hat now, but in 1978 it was a new special effect and when Christopher Reeve tore open his shirt and then leaped into the sky, audiences gasped.

So what’s this got to do with the heart? Friend and fellow Adult Congenital Heart Association (ACHA) member Jason was at a Comic Convention and saw this shirt:

Kryptonian at Heart T-Shirt

If you can’t tell, Superman’s S shield is where the heart should be. Jason went crazy for this shirt, explaining to the people in charge of the table just what a shirt like this would mean to someone fighting a Congenital Heart Defect. They literally began to cry and gave Jason the shirt.

I’ve got a bad case of STEVE WANT, and I’m going to get one. If you want one too, click on the T-shirt, then click on the DC Comics link in the lower left corner. Once the DC Comics shirts page comes up, page down to the Kryptonian at Heart T-Shirt link. Click it! (It’s very close to the bottom of the list) Or better yet, call them at 1-800-699-0115 and order one… and tell them that it is for a real superhero!

Because isn’t your favorite Cardiac Kid or Heart Warrior just as strong as the Man of Steel?

The line in the sand (With Update)

March 16, 2010

There’s no update about Euan Sharp, either on his Twitter accout or his blog. I’m an optimist, so I’m certain the reason he hasn’t updated is because he’s in Recovery getting used to his new heart!

(Gosh, I hope so…)

Euan’s last blog entry is all about the insidious nature of Congestive Heart Failure, and how it steals your world away. Little bit by little bit, inch by inch it will slowly shrink your world.

I’ll let Euan continue, he states it so well:

But that’s what happens with heart failure. Every now and again, your life shrinks a little. Sometimes it’s almost imperceptible. And other times it’s in leaps and bounds. First it dines on your independence. Then it gobbles up geography. It swallows up friendships. And drinks away your good times. It devours your ability to work. Then finishes off your your dignity. Just when you think your bubble couldn’t shrink anymore it does. And does again. And again. And again. Until you wake up one morning and your bathroom that’s ten feet away is suddenly too far to get to without some help.

But there eventually comes a point when there is nothing left to give up; Heart Failure has taken everything; and then it comes back wanting more. It wants the only thing you have left to give – your life. And that’s where Euan says no.

There’s a scene in the 1996 movie Star Trek: First Contact that, for me, encapsulates the the feelings of a person being forced to give up too much. It happens about two-thirds of the way through the movie… When pushed, Captain Picard’s resentment boils over:

“I will not sacrifice the Enterprise. We’ve made too many compromises already. Too many retreats. They invade our space and we fall back. They assimilate entire worlds and we fall back. Not again. This time the line must be drawn here. This far and no further!”

It’s a wonderful moment that resonates true for many people fed up losing ground again and again to a relentless disease. He might just as well have been talking about Diabetes or Parkinson’s, Alzheimer’s, Cancer, or Heart Failure. They all take and never give back. At first you don’t mind much, but by the end it’s a pretty shitty deal.

But Euan and the Transplant team have drawn their line in the sand.

This far, and no further.

March 17, 2010; 6:40 AM Eastern US Time: Still no news about Euan.

LIVE Heart Transplant!

March 16, 2010

I was searching the American College of Cardiology meeting posts on Twitter and came across this tweet from Euan Sharp:

Called for heart transplant @ 1:29am. In hospital getting prepped. Let’s hope it’s third time lucky!!

… and there hasn’t been anything else since.

Euan has a Twitter account (http://twitter.com/euansharp ) so you can follow him as we wait for an update. And keep him in your thoughts!

Go Euan! Third time is the charm!