Posts Tagged ‘Transplant’

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.


September 14, 2010

From Broken Hearts of the Big Bend’s Facebook page:

The heart for Ramsey is a MATCH! The transplant is a GO!

From Ramsey’s Mom:

Ramsey went into OR at 7. They said they would give me an update in about 3 hours.

If they are on schedule that update will occur in 12 minutes. Keep this family in your thoughts!

UPDATE 11:31 PM EST: Ramseys dr and about 4 other drs just came by us with a rolling cooler. I’m sure that was the new heart!

UPDATE 3:20 AM EST September 15, 2010: the surgery is complete and we should be able to see Ramsey in about 45 minutes. So far everything is great.

UPDATE 6:21 AM EST September 15, 2010: We all got to see Ramsey. She is doing good but they want to keep her sedated for awhile to keep her calm.

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.

Five CHD Questions: What?

May 10, 2010

What is the long term outlook for a child born with a  Congenital Heart Defect (CHD)?

It varies. A child born with a simple Artrial Septal Defect (ASD) or Ventricular Septal Defect (VSD) may have the defect close spontaneously as they grow. Although their lifespan may well be normal these children should be monitored by a Cardiologist at least once a year and the majority of their lifetime medical needs can be satisfied by the general medical community.

At the other end of the spectrum, there is no long-term data available for children who have Hypoplastic Left Heart Syndrome ( HLHS). The Norwood Procedure – the three surgery repair for HLHS –  was developed in the late 1970’s and early 1980’s, and Infant Heart Transplantation only became available in the mid-1980’s. The oldest HLHS survivors are in their twenties and thirties, and there is no good data yet on how these hearts are going to react to a lifetime of wear and tear.

Many recent developments could conceivably extend the lifetime of a patient with a weak heart. The Left Ventricular Assist Device (LVAD) is a small pump that is surgically implanted in the body and helps the heart to function. Most draw power from an outside source and require the owner to carry a small bag at all times, but at least one new model has no outside connections at all. It uses magnets to provide the energy needed to keep the heart pumping.

LVADs are mainly used as a “bridge to transplant” to keep a heart going until a suitable donor heart can be found, but there are other options being explored that do not involve a heart transplant – and may not even involve surgery.

One of the most promising is the insertion of replacement heart valves by Catheter. Medtronic’s valve replacement system recently entered clinical trails in the United States. Using Stem Cells to repair the heart are also an option that is being explored.

I think the future is bright for CHD survivors – a future which not only involves fewer surgical procedures but gives us an increase in quality of life and in length of life.

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…

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.

Next Year, in Salt Lake City!

March 11, 2010

We’ve got our first 2011 event for our the Funky Heart and Friends tour! It’s our friend Paul Cardall – the Celebrate Life concert was such a success that Paul’s going to do it again! Mark your calender for Valentine’s Day weekend 2011, when Paul will once again be on stage in Salt Lake City, Utah. Obviously, the details have yet be worked out, including the exact date, time, and location of the concert, but he’ll post all that on his blog, Living for Eden.

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!

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.


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.

In His Own Words

February 2, 2010

A few days ago I wrote about the Wake Forest Institute for Regenerative Medicine growing organs for transplant. Here’s the director of the Institute, Dr. Anthony Atala, talking about some of the tissues and organs being created in his lab right now. (Wait until you see the heart valve!)

Get ready to be amazed.

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