Never Give Up

An article published by Associated Press today left me dumbfounded. It reminded me to never, ever give up hope. You've GOT to read this article in its entirety (see summary below). See if you feel the same...

British girl's heart heals itself after transplant

Excerpted from Maria Cheng, Ap Medical Writer – Tue Jul 14, 12:40 am ET

In 1994, when Hannah Clark was eight months old, she developed severe heart failure and doctors put her on a waiting list to get a new heart. But Clark's heart difficulties caused problems with her lungs as well. To avoid a risky heart/lung transplant, doctors took a chance at a new and novel idea.

Sir Magdi Yacoub of Imperial College London thought that said that if Clark's heart was given a time-out, it might be able to recover on its own. So in 1995, Yacoub and others grafted a donor heart from a 5-month-old directly onto Clark's own heart. After four and a half years, both hearts were working fine, so Yacoub and colleagues decided not to take out the extra heart.

However, the powerful anti-rejection drugs Clark was taking caused cancer, which led to chemotherapy. Even when doctors lowered the doses of drugs to suppress Clark's immune system, the cancer spread, and Clark's body eventually rejected the donor heart.

In February 2006, doctors removed Clark's donor heart. Luckily, by that time, Clark's own heart seemed to have fully recovered. Since then, Clark — now 16 years old — has started playing sports, gotten a part-time job, and plans to go back to school in September.

At the moment, doctors aren't sure how that regeneration happens. Some think there are a small number of stem cells in the heart, which may somehow be triggered in crisis situations to heal damaged tissue.

Granted, Hannah's case is a rare and miraculous one, but it does give us a window of hope for the future!

Side note - even if this were to become an option for treatment in the future, there is a serious shortage of donor organs available for such transplants. Consider becoming an organ donor today, and asking your loved ones to do the same!

Great News: Scientists ID'd Heart Stem Cells!

Source: Constance Holden, ScienceNOW Daily News
2 July 2009

I was thrilled to read today that scientists have finally identified the cardiac stem cells that create all of the major cell types in the human heart. In recent years, scientists identified these cells in embryotic mice, but now a team at the Massachusetts General Hospital in Boston have found these same cells (that express the protein Islet 1) in humans. The team reports its work in Nature.

What does this mean? That researchers are one step closer to creating new cardiac stem cells in the heart's major cell types: heart muscle (cardiomyocytes), smooth muscle, and blood vessel lining (endothelium).

Chien, the researcher who made this astounding discovery, cautions that these primordial stem cells could not be used for therapy because they could develop into undesired cell types, but they could be used for disease modeling and drug screening and - most importantly to those of us affected by CHD - further research on congenital heart malformations. Chien speculates that CHD's "may be a stem cell disease" because Islet 1 cells are clustered in areas that are "hot spots" for heart defects.

The future I hope it holds for us? The possibility of growing human "heart parts" (such as strips of muscle or a valve) to assist CHD survivors.

Physical Restriction after Fontan: How do You Know?

A recent article in the American Heart Journal from researchers at the Hospital for Sick Children in Toronto questions the use of physical activity restrictions for children after undergoing the Fontan operation. In the abstract online, the researchers studied how the information regarding restrictions are conveyed from the cardiologist, parent and in the medical charts - often these three sources disagree. Regardless of the cardiologist reported restrictions, 70% of parents reported that their child's activity was restricted. Parents and cardiologists report the same body contact restrictions, but differ for exertion and competition restrictions. Medical charts reflect competitive sport, but not body contact or exertion restrictions. So, what to do if you're a parent?

This study suggests that parents are left with uncertainty about physical activity, and rightly so, given the significant variance in the sources of information they receive.Primary care doctors are often not included in the loop (medical records don't reflect the restrictions for exertion and body contact).

Cardiologists need to work to ensure that activity restrictions are accurately conveyed, which will enable parents and primary care providers to confidently encourage the active lifestyles. And parents, talk to your cardiologists - don't take the advice of the primary doctor (though he or she may be correct). While your primary care physician is likely a wonderful, well rounded person, the specialist is better able to answer the questions specific to your child's condition.

Charities Recognized for CHD Efforts

This past month, two outstanding CHD-related charities were selected by IntelliClear as its 2008 Clarity Trust recipients. Congratulations to Its My Heart and HeartGift Foundation!

As the Congenital Heart Futures Act is being introduced to both houses of the United States Congress this spring, IntelliClear recognizes this year the outstanding efforts of It's My Heart and HeartGift as leading the charge on children's CHD.

"According to the American Association of Thoracic Surgery, an astonishing 93% of the world's population has no access to cardiac surgery. With the assistance of generous corporate citizens like IntelliClear -- by combining our resources, our skills and our compassion -- HeartGift's all volunteer team of pediatric physicians will continue to save the lives of children born with CHD," says Lisa Rodman, Executive Director of The
HeartGift Foundation.

"Since CHD is America's #1 birth defect, it is vital that we bring awareness to the nation via community outreach, hospital programs and other support services that bring families and resources together. It's My Heart, Inc. relies heavily on the compassion of corporations like IntelliClear Inc., allowing us to further our advocacy and awareness programs for those affected by CHD," says Corrie Stassen, Executive Director of It's My Heart, Inc.

If you haven't taken a chance to check out these two fantastic charities, take a look today!

Mapping the Heart: Cross-functional Research Leads to Breakthrough

Source: http://www.bjhcim.co.uk/news/2009/n904026.htm

Imagine if imaging of the earth's inner core could lead through to a breakthrough in cardiology... and you will get an idea of what is happening at Bournemouth University.

A computer modeling program was created by Professor Nick Petford to study how liquid metal flows through cracks during planet formation. “For a long time people thought the flow of liquid iron along the edge of grains and through narrow channels and cracks was not possible. NERC funding allowed me to develop a technique for importing object images of rock slices into a software package and then run a fluid-flow computer simulation to look at how liquid metal inside a meteorite moves around under pressure.” Then he realized that the software could be used to do so much more...

Working with a heart radiographer at the Royal Bournemouth Hospital, he used the same simulation technology to look at the blood flow in a diseased human heart. They used data from an actual MRI scan, adjusted the viscosity and density of the fluid to reflect that of human blood, then solved the equations to discover where a blockage existed.

The MRI had not shown an obvious blockage, but utilizing the software, they predicted, exactly, where a clot was located. Just imagine the implications for future studies in this area and earlier diagnoses for patients!

A detailed article regarding this research can be found at: www.nerc.ac.uk/planetearth.

Congenital Heart Futures Act - Now a Reality!

Late yesterday the Congenital Heart Futures Act (Bill S. 621 in the Senate and HR 1570 in the House) was introduced to Congress! In the Senate, Senator Dick Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi. In the House, the bill's lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida. We are thrilled that this groundbreaking piece of legislation has already received bipartisan support.

So what's next? Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation. It just takes a minute - here's how you do it:

1. Go to http://www.senate.gov and http://www.house.gov to look up your representatives and their email address.
   
   
2. Draft your email - Here is a template to get you started.
   
   Dear [Lawmaker name here]
   
   I am writing as a member of the Adult Congenital Heart Association to ask for your help in making a brighter future for all those born with heart defects. Yesterday the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570) and help all those born with heart defects live longer, healthier lives.
   
   Congenital heart disease is this country’s number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.
   
   [Insert 2-3 sentences saying why you care – some examples:
   
   From an adult patient: Since being born in 1956 with a complex heart defect, I have undergone 4 open heart surgeries and am currently on disability due to my heart. I have struggled to get the information and care I need to take care of my rare condition, as doctor after doctor answer my questions with, “we just don’t know”. The federal government should use my tax dollars to do the research to get those questions answered, so that both today's adults and tomorrow's children get better care.
   
   For a parent: My daughter was born with a complex heart defect and underwent three open heart surgeries before she was three. I want to be hopeful for her future, but right now I know there is a severe lack of research, awareness, and resources available to help us help her do well as she gets older. Please help me help my daughter survive to become a healthy, productive parent and grandparent.
   
   From a health care provider: As a doctor taking care of congenital heart patients I struggle to find the information and resources I need to help these patients thrive. These patients face high risks of developing additional heart problems as they age, and we have limited information on best treatment strategies. Many health care providers are unprepared to care for their complex life-long needs. Please help me protect this pioneering and vulnerable population.
   
   To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.
   
   Thank you in advance for your help in securing a future for all those living with congenital heart disease.
   
   Sincerely,
   
   [name]
   [full mailing address]
   [email]
   
   
3. Make your letter personal to you. The template has a place to add two or three sentences (more is NOT better in this case!) about why this legislation matters to you personally, and offers some samples to help get you started.
   
   
4. Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress.

That's all there is to it! After your done, take a moment to pass this news on to your friends, family and colleagues.

If you are a constituent of Senators Durbin or Cochran or Representatives Space and Bilirakis, we encourage you to email or call their office and let them know how much you appreciate their leadership of this effort.

Need more information? Contact info@achaheart.org with any questions.

Stem Cells: What Does it Mean for Us?

By now you've likely heard the news - Obama has lifted the ban on stem cell research, which will open the way for many new lines of embryonic stem cells. It's controversial to many, but what does it REALLY mean in terms of research and innovation for the creation of heart tissue?

First, let's clarify what, exactly, embryonic stem cells are. Human embryonic stem cells are our body's most versatile cells, possessing the potential to develop into any cell type in our bodies (with the exception of a placenta). Already such cells have been used to form heart tissues and valves. Embryonic stem cells are created during in vitro fertilization for persons with reproductive issues. Blastocysts are formed, from which the cells are harvested. The permission of the donors are given to donate these cells for research. Only 21 lines of these cells have been researched since 2001, due to a ban Bush placed on further research beyond the existing lines.

In a press release dated March 9, the International Society for Stem Cell Research (ISSCR) applauds President Barack Obama’s executive order, citing its potential to relieve suffering caused by diseases and conditions (including those caused by heart defects). The new policy allows scientists to utilize the many hundreds of valuable lines created since 2001, and relieves them from the substantial hurdles in duplicating equipment and other resources in order to separate privately- or state-funded stem cell research from federal government-funded efforts.

It's a hot topic most of us don't want to discuss in public. But it's a discussion we need to have. What do you think? Does the announcement restore the "integrity to the relationship between politics and science that has been traditional in the U.S.,” as asserted by Irving Weissman, President-Elect of the ISSCR? Would you be a willing recipient of the tissues and valves created in this manner?