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1 day ago · What is protein-losing enteropathy (PLE) and how it is related to HLHS?

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Protein-losing enteropathy (PLE) is a rare and complicated disorder regarding the loss of proteins in the intestines. The signs and symptoms of PLE include bloating, diarrhea, edema, pleural effusions, ascites, and failure to thrive.

In some situations, PLE can occur after the Fontan procedure. The Fontan procedure is typically the third surgery for patients with hypoplastic left heart syndrome (HLHS) that reduces the amount of work of the right ventricle. During this procedure, the surgeon creates a path for the oxygen-poor blood in one of the blood vessels that returns blood to the heart (the inferior vena cava) to flow directly into the pulmonary arteries. The pulmonary arteries then transport the blood into the lungs. This procedure allows the rest of the oxygen-poor blood returning from the body to flow to the lungs. After this procedure, there’s no mixing of oxygen-rich and oxygen-poor blood in the heart.

Currently, there is no single treatment for PLE but rather multiple treatments used together to decrease the loss of proteins. These treatments can include a variety of options including dietary changes, medications, and sometimes surgical or catheter-based interventions. Talk to your doctor or care team for more information.

PLE does not exclude participation in research studies here at the Todd and Karen Wanek Family Program for HLHS. Email the program at HLHS@mayo.edu to find out more.

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The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. To learn more or to participate in the research, email HLHS@mayo.edu and follow the HLHS program on Facebook, Twitter and Instagram.

Wed, Jun 28 8:40am · Save the Date for Feel the Beat 2017!

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The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. To learn more or to participate in the research, email HLHS@mayo.edu.

Tue, Jun 6 10:25am · What is ejection fraction and what does it measure?

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Ejection fraction is a measurement of the percentage of blood leaving your heart each time it contracts.

During each heartbeat pumping cycle, the heart contracts and relaxes. When your heart contracts, it ejects blood from the two pumping chambers (ventricles). When your heart relaxes, the ventricles refill with blood. No matter how forceful the contraction, it never is able to pump all of the blood out of a ventricle. The term “ejection fraction” refers to the percentage of blood that’s pumped out of a filled ventricle with each heartbeat. Ejection fractions are calculated during an echocardiogram.

Typically, the left ventricle is the heart’s main pumping chamber that pumps oxygenated blood through the aorta to the rest of the body, so ejection fraction is usually measured only in the left ventricle (LV). An LV ejection fraction of 55 percent or higher is considered normal. An LV ejection fraction of 50 percent or lower is considered reduced. Experts vary in their opinions about an ejection fraction between 50 and 55 percent, and some would consider this a “borderline” range.

For individuals with hypoplastic left heart syndrome (HLHS), the right ventricle is the heart’s main pumping chamber. A good ejection fraction for someone with HLHS would be above 50 percent. Many individuals with HLHS have right ventricular ejection fractions that are somewhat less than this range but do not have any significant limitations. One of the goals of our HLHS program is to better understand what is a good measure of ventricular function in a person with HLHS and how to best clinically describe it so that we can recognize a decline in function and treat it.

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. To learn more or to participate in the research, email HLHS@mayo.edu.

Fri, May 26 8:21am · New study highlights the importance of genetics research

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An exciting paper was recently published in Nature Genetics titled “The complex genetics of hypoplastic left heart syndrome”.  This elegant study was led by a research team at the University of Pittsburgh School of Medicine and highlights the creation of the first mouse models of hypoplastic left heart syndrome (HLHS). Genetic analysis of these mice revealed mutations in two unique genes that, when combined, cause HLHS.

The genes impacted by mutations in the mouse model are SAP130 and PCHDA9. Recognition of the importance of these two genes in the mouse model led the team to look for mutations in 68 patients with HLHS. This revealed 1 out of 68 patients to have a mutation in both SAP130 and PCHDA9. While this is an intriguing finding, these results provide additional support for the complexity of the genetics of HLHS. (Check out this previous blog post on the subject.)

This paper is very exciting for the HLHS community. The more research teams we have focused on understanding the molecular basis of HLHS, the faster a cause and new therapies may be discovered. The study also highlights another very important aspect – the more people participating in research, the more teams are able to learn about the specific disease. For questions on how to participate in our HLHS program’s genetic research, email us at HLHS@mayo.edu.

Congratulations to the team at the University of Pittsburgh School of Medicine!


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.

Mon, May 22 11:01am · Feel the Beat 2017

In 2013, team members of the Todd and Karen Wanek Family Program for HLHS wanted to find a way to thank research participants and their families for all that they’ve done for the program. Without their support and participation, none of the work would be possible. It was also a perfect opportunity to bring together people from around the country so they could learn more about the HLHS research. Thus began the “Feel the Beat” event.

Now in its fifth year, “Feel the Beat” has grown and continues to bring together families, advocates, researchers and doctors. This year’s theme is inspiration. You’ll hear from patients and parents, learn about the ongoing research, and take part in engaging activities!

Please join us on October 14, 2017 from 8:30 a.m. until 3 p.m. in Rochester, MN.

 

Feel the Beat Hotel Accommodations

The HLHS program has reserved a block of rooms at the CenterStone Plaza Hotel. The CenterStone Plaza Hotel has a discounted rate for the event of $89 a night including a free shuttle to and from Mayo Clinic. For more information, please call the hotel directly at 1-800-366-2067 and mention “Feel the Beat” to book the room.

All reservations for this deal must be made before September 30.

The a complimentary shuttle runs from 5:30am to 10pm seven days a week.  It services all the Mayo buildings, downtown Rochester, and other area businesses.  It’s an on-call shuttle so whenever guests are ready to leave the hotel they stop by the front desk.  The number to call to request shuttle back to the hotel is 507-288-2677.  If there is a larger group of 10 or more people at one time a shuttle time can be set up in advance.

Mon, May 15 12:39pm · Share the Science: Strengthening the HLHS Heart with Cord Blood

Join Dr. Nelson, director of the Todd and Karen Wanek Family Program for HLHS, this Wednesday, May 17 at 2 p.m. CT to learn more about using umbilical cord blood stem cells to potentially strengthen the heart.

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The free webinar is hosted by Save the Cord Foundation and Mediware, Inc. Share the Science is a free webinar series focused on the cord blood industry and the latest research in this field.  The webinar is intended for both health professionals and the general public.

In this webinar, you will learn:

  • The importance of banking umbilical cord blood for babies with HLHS
  • What makes Mayo Clinic’s Todd and Karen Wanek Family Program for HLHS unique when it comes to umbilical cord blood banking
  • Details about the clinical trial using umbilical cord blood for babies with HLHS
  • How HLHS research at Mayo Clinic’s HLHS program is changing the future for HLHS individuals

Register today!

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.

Fri, May 5 10:26am · Mayo Clinic’s Fontan procedure study shows improvement in survival rates

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Mayo Clinic recently published the largest single center study on the outcomes of the Fontan procedure. The goal of the study was to determine how well patients were doing 10, 20 and 30 years after a Fontan procedure at Mayo Clinic. The most promising result from the study shows that due to the surgical advancements of the Fontan procedure, survival rates have continued to improve over the last 40 years.

In 1971, two surgeons, Dr. Francois Fontan and Dr. Guillermo Kreutzer, separately pioneered the Fontan procedure to treat a heart defect called tricuspid atresia. During the Fontan procedure, the surgeon creates a path for the oxygen-poor blood to flow directly into the pulmonary arteries. The pulmonary arteries then carry the blood into the lungs. The Fontan procedure treats most forms of single ventricle defects, including hypoplastic left heart syndrome (HLHS).

The study examined the records of 1,052 who had a Fontan procedure between October 1973 and June 2012 at Mayo Clinic. It showed the 30-year survival for these patients was only 43% but survival since 2001 has improved to 95%.  The study demonstrated that survival rates have continued to improve over the years due to improved surgical techniques.  Also important to note, 85% of all patients felt that their clinical status had improved after their Fontan procedure and 82% rated their current health status as “excellent” or “good”.

While the study showed that the Fontan procedure is a life-saving surgery, study participants exhibited the negative consequences associated with Fontan surgery including heart failure, arrhythmia, liver disease and protein-losing enteropathy (PLE).

Read the whole study in the Journal of the American College of Cardiology.  J Am Cardiol Cardiol 2015; 66: 1700-10


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.

 

Mon, Apr 17 8:59am · Congratulations to the 2017 IMPACT Winners!

On March 18, the Innovative Minds Partnering to Advance Curative Therapies (IMPACT) program engaged over 200 undergraduate students from 23 different Minnesota colleges. IMPACT is a competitive program open to Minnesota undergraduate students that encourages them to submit hypotheses for different challenges. It is sponsored by Regenerative Medicine Minnesota and the Mayo Clinic Office of Applied Scholarship and Education Science.

This year, teams of students chose one of three challenge topics to answer:

  • What is the underlying cause of hypoplastic left heart syndrome (HLHS)?
  • How do obesity and type 2 diabetes increase the risk of pancreatic cancer?
  • What pedagogical approach should be used in surgical residency programs to improve patient outcomes after inguinal hernia repair?

One winning team from each category was chosen after a day of poster and oral presentations.

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Congratulations to Brian Nguyen, Achai Biong, Vivian Ma, and Kurt Schwieters (University of Minnesota, Rochester) for their winning hypothesis of the HLHS challenge topic. Their hypothesis states, “We hypothesize that intrauterine hypoxia induces the overexpression of microRNA-210, leading to the suppression of Nkx2.5 and fetal cardiac underdevelopment of the left ventricle, resulting in hypoplastic left heart syndrome.”

The winning team members will receive $1,000 along with the opportunity to conduct their research at Mayo Clinic for the summer. Congratulations to the first place winners!

IMPACT was launched in the spring of 2014 and has continued to expand each year, reaching over 500 Minnesota undergraduates to date. By engaging undergraduate students with a spirit for innovation, this initiative will continue to forge collaborations toward the common goal of advancing the health and well-being of patients. For more information on the IMPACT program or how you can participate, please contact Katie Campbell, IMPACT Program Director, at 507-284-0820 or email her at IMPACT@mayo.edu.

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.