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Cardiomyopathy in the News
Monday, October 22, 2012 | fostoriafocus.com | Cardiomyopathy in the News
In his early 30s, Nick Hunter seems too young to have had a heart transplant. But after two years of increasing heart complications from a genetic disorder, Nick, a Tiffin native, received a new heart in early September.

It was a traumatic procedure, but one that was necessary to save Nick’s life.

“Mentally, going into this, it seemed like it wasn’t real,” Nick said. “But I had to do what I had to do to live.”

At a young age, Nick found out that he had a genetic mutation for familial dilated cardiomyopathy — a condition in which an enlarged heart inhibits the heart’s ability to pump blood — in 2000, during his freshman year of college at Ohio State University.

Though dilated cardiomyopathy can be caused by hypertension, coronary heart disease and other factors, Nick’s condition was caused as a result of genetics. Sudden death is not uncommon among those with dilated cardiomyopathy.

Unfortunately, Nick’s family members who also shared the disorder were no exception. His grandmother had died in 1989 as a result of the disease, and Nick’s mother, Denise, died of a sudden heart attack in 2002, while Nick was still a young college student.

But, in spite of the condition, Nick had lived a relatively normal life for the ten years following his diagnosis.

“I was pretty asymptomatic,” he said. “There were light symptoms but nothing that was huge.”

He graduated from Ohio State in 2005 and moved to New York City to work in pharmaceutical marketing. He met regularly with a cardiologist while he was in school in Columbus and after he moved to New York, and continued to feel few minor symptoms from his heart condition.

Then, in 2010, Nick’s life changed.

“I started getting really sick,” he said. “I felt like I had the flu. I started noticing that I couldn’t walk and that I felt terrible all the time.”

He met with his cardiologist in New York, who diagnosed Nick with end-stage heart failure in November 2010. His doctor told Nick that he would need a heart transplant within five years, and Nick had an internal defibrillator implanted as a precautionary measure to save him in case he suffered a heart attack.

“People with this type of disease [often] die a sudden death, where all of a sudden their heart goes into a really fast rhythm and it causes them to go unconscious and into cardiac arrest,” Nick said.

Earlier this year, that defibrillator saved Nick’s life.

“I was at a restaurant in New York after work and my heart went into a deadly rhythm and I passed out. My defibrillator shocked me and I woke up,” he said.

After this incident, medical personnel told Nick that had the defibrillator not been in place, he would have died. As his health gradually declined, it became apparent to Nick and his cardiologist that a heart transplant would be needed sooner than originally expected.

“My heart was working probably one-fifth of what it should have been,” he said. “So it was working very badly. It was barely pumping oxygenated blood.”

Nick decided to come back to Ohio to have the transplant done at the Richard M. Ross Heart Hospital in Columbus, where he had once worked and also knew many of the hospital’s staff. Nick also had the support of his family and friends — a necessity for have done it without a 24-7 caretaker.”

Nick came back to Ohio in late June, and, after two possible heart transplants fell through, he received a new heart Sept. 4, and was finally released from the hospital six weeks after surgery. Though his health improves each day, Nick still has a long way to “The new heart is working very strongly,” he said. “It’s going to take a whole year to recover.”


Read More: http://www.fostoriafocus.com/article.php?id=4337
Monday, October 22, 2012 | Sbnation.com | Cardiomyopathy in the News
With a somber look on his face, Channing Frye walked to the make-shift conference room to talk in more detail about the suddenness of a virus that has rocked his and the Suns for the upcoming season.

Suns President of Basketball Operations Lon Babby flanked Frye at the table opening up with genuine remorse over what is happening to his employees, and more important to a member of his family here with the team. Lon, consistently, leaned over to Frye with a pat and a whisper to make sure he was ok or if he wanted to continue. About 20 feet away Jared Dudley looked on with fresh sweat coming out of a workout and his practice gear on -- he wasn't going to miss the opportunity to support his teammate and friend.
Little to the crowd's knowledge former Suns forward Grant Hill was also in the back lending his support as all the attention was on Frye.

Despite the aura in the room of a player telling the world he has a health condition -- not an injury -- that will keep him off the court for the foreseeable future. The term "indefinitely" is a broad stroke, but when you are talking potential life or death it is the right course of action. Frye will miss this season due to the dilated cardiomyopathy found in a routine NBA offseason physical.

"You have to give credit to the NBA," said Babby about catching this during the offseason. "I'd like to take credit for it from the Suns standpoint, but this is really an NBA protocol. It's about making sure players are healthy when they get on the court and we are very, very fortunate that we had the information we needed before it became catastrophic."

Those cautionary tales of Jeff Green, Chuck Hayes, Willie Cager, as well as the most extreme situation, which was Hank Gathers.

"When we see patients with dilated cardiomyopathy, with heart muscles that have increased size and diminished in function there is a whole host of potential causes," said Team Cardiologist Tim Byrne. "At the end of the day the most likely cause of this is a virus and many times those do improve." When asked about the chances of a full recovery, Byrne responded that the "chance is better than not."
There is a very good chance that this virus subsides and is gone in 90 days when the next check-up is scheduled for Frye, but also a chance that this lingers. In the mean time Frye has the rare opportunity to take a year off of basketball to focus on his health, rehabbing his shoulder, and more importantly spending time with his family that includes a wife and two children ages two and four months.
For the Suns it is back to business. After a tough situation happens in any family you address it, resolve it, and then get back to business as usual. Frye knows that as he stated he will be involved, but not to the point where he is getting in the way:
""I told Lon and the team that I was going to soak it up over the weekend and really see. For me I like to be involved and I like being part of the guys, but at the same time I have to let them have their own chemistry. I don't think traveling a lot is going to be in the cards, but being there to help some of the younger guys and see my friends, Jared (Dudley) and some of the older guys."
The team now looks to fill the void that is the teams' fifth leading scorer (10.5 per game) from last season and a versatile weapon on offense. His loss is even bigger from a leadership standpoint.

Read  More:
http://arizona.sbnation.com/phoenix-suns/2012/9/22/3371050/channing-frye-embarks-on-the-toughest-challenge-of-his-life
Monday, September 10, 2012 | Wnep.com | Cardiomyopathy in the News
A family from Williamsport is dealing with the losses of their mother and sister. Both died within five days of each other from the same heart disease. Two other siblings in the family are living with that same disease.

Alan Neidig and his sisters are trying to heal from the tragedy that shook their family from Williamsport this week.

“Can it get any worse? It can’t,” Neidig said.

Last Wednesday, their 46-year-old mother Ann died from a heart disease called Hypertrophic Cardiomyopathy.

“She was always helping other people. Always giving and giving and not much receiving,” Neidig said.

Just five days later, their 22-year-old sister Alicia Hall passed away from the same disease, and both of Alan’s sisters, Amanda and Alanna have the disease too.

“It’s very difficult for me to watch them go through this knowing their mom and sister went through it,” Marguerite Wolfgang said.

Marguerite Wolfgang lives near Allenwood and has known the Neidig family for more than 30 years.

Newswatch 16 spoke to a cardiologist from Geisinger Medical Center. Doctor Peter Berger did not treat the Neidig family, but he says people living with Hypertrophic Cardiomyopathy have a 50% chance of passing on the disease to their children. Up to 1.5 million Americans are living with that form of heart disease.

A Facebook page has been set up to remember Ann and Alicia. The family does not have life insurance, and hardly any savings. So friends are holding fundraisers for the Neidig family.

There will be a car wash this Saturday morning at Advanced Auto Parts in Montoursville. Money raised will go toward funeral expenses and medical bills.

Read More:http://wnep.com/2012/09/04/a-familys-tragic-loss/

Friday, August 24, 2012 | Politicalnews.me | Cardiomyopathy in the News
Menendez, Lautenberg Introduce Legislation to Educate Families about Cardiomyopathy

Cardiomyopathy Estimated to Affect 30,000 Children

U.S. Senators Robert Menendez and Frank R. Lautenberg (D-NJ) introduced the Cardiomyopathy Health Education, Awareness, Risk Assessment, and Training in the Schools (HEARTS) Act, which is designed to increase awareness of the disease and the risk of sudden cardiac arrest among health professionals, parents, and educators. Cardiomyopathy is a chronic and sometimes progressive disease in which the heart muscle is abnormally enlarged, thickened and/or stiffened. The actual muscle cells and the surrounding tissues of the heart become damaged and eventually the weakened heart loses the ability to pump blood effectively. February is National Heart Month.

“As a parent, I remember worrying over my children when they had a simple cold, so I cannot imagine the pain the parents of a child with cardiomyopathy must go through,” said Menendez. “This is a devastating disease, one which we simply do not know enough about. Cardiomyopathy is a leading cause of sudden cardiac arrest, which strikes 7,000 children a year, with only a 5 percent survival rate.Schools need to be educated and ready for a cardiac emergency, as do families. The HEARTS Act is the first step toward raising awareness and saving lives.”

"This legislation will help raise awareness about a deadly heart condition that threatens tens of thousands of young children” said Lautenberg. “Sadly, many more children may be at risk for cardiomyopathy but go undiagnosed because of failures to properly screen for the disease. It's time to raise awareness of this disease and provide parents, schools, and health departments with the tools to respond quickly and effectively when heart conditions strike."

The HEARTS Act has the support of 21 organizations, including the Children's Cardiomyopathy Foundation (CCF) in Tenafly, NJ, which was founded by the parents of two children who died from cardiomyopathy. CCF, the American Heart Association, and nineteen others wrote a letter to the Senators on behalf of The HEARTS Act bill.

“As a parent who lost two children to cardiomyopathy, one to sudden cardiac arrest, I thank Senators Menendez and Lautenberg for their leadership and foresight in introducing this life-saving legislation”, said Lisa Yue, President and Founder of the Children’s Cardiomyopathy Foundation (CCF) of Cresskill, New Jersey. “By educating families and schools about cardiomyopathy and the risk factors associated with sudden cardiac arrest, this legislation has the potential to save the lives of many children."

Read More:
http://politicalnews.me/?id=11978&keys=CARDIOMYOPATHY-CHILDREN-EDUCATION-HEARTS
Wednesday, August 22, 2012 | Dailymail.co.uk | Cardiomyopathy in the News

A man with a rare genetic disorder will be the first to complete the London marathon with a built-in defibrillator that will zap him back to life if his heart stops mid-race.

Chris Taylor nearly died when he went into cardiac arrest suddenly last year. Since then he has worn a small heart-shocking device implanted under his skin similar to footballer Fabrice Muamba’s.

Chris, 23, was born with a condition which means the walls of his heart are sponge-like instead of ‘compact’ like a normal heart.

It means that at any time he could suffer another arrest and must limit his physical activity at all times.

But despite his potentially deadly condition, Chris has pledged to take on the 26-mile challenge on April 22 in the hope of raising thousands for the British Heart Foundation.

His case comes just weeks after Bolton Wanderers midfielder Fabrice Muamba dramatically collapsed on the pitch suffering from a similar heart condition.

Muamba was technically 'dead' for 78 minutes after collapsing during the FA Cup tie at Tottenham last month, but was released from hospital on Monday after being fitted with a defibrillator implant.

Chris, from Lytham St Annes, Lancashire, said: 'I heard about it after it had happened and watched it back afterwards.

'I saw the paramedics shocking him and it was very close to home for me.

'I can’t remember how long my own heart stopped for, but seeing the Muamba incident makes you remember being in that position

'It’s one of the reasons that I’m so determined to complete the marathon because I want to raise awareness of heart conditions such as his and mine.'

Chris was diagnosed with the condition, called left ventricular noncompaction cardiomyopathy, at 15 after a series of MRI scans.

His a genetic illness so rare that at that time only a handful of cases had been discovered.

His father Tommy, 48, an airline pilot, carries the faulty gene and had also passed the condition on to Chris’s sister, Vicky, 24, a trainee solicitor.

Read More: http://www.dailymail.co.uk/news/article-2131059/Heart-zap-gizmo-help-man-million-heart-condition-stay-alive-London-marathon-bid.html
Wednesday, August 22, 2012 | Abcnewspapers.com | Cardiomyopathy in the News

Sisters usually swap toys, clothes and secrets.

But Madison and Sidney Rippy have also shared something quite rare – the need for a new heart.

Both Madi, 6, and Sidney, 3, have been diagnosed with dilated cardiomyopathy – a disease that affects the size of the heart and how it pumps. They have also both received heart transplants at the Mayo Hospital.

For parents Linsey and Noel Rippy of Blaine, the last four years have been anything but what you might expect raising a couple of little girls.

Madi’s story

Madi first got sick when she was 2 1/2 years old, while Linsey was pregnant with Sidney in October 2008.

“One day she started acting really weird, her eyes were funny and she was slumped to one side so we called an ambulance,” said Linsey.

After being transferred quickly from Mercy Hospital to Children’s Hospital, doctors performed an MRI and discovered the little girl had suffered multiple strokes.

“When they did an X-ray they found she had this enormous heart,” said Linsey.

An enlarged heart that isn’t pumping properly can throw deadly blood clots.

“In essence the strokes saved her life,” said Linsey.

Madi was started on medication and doctors told Noel and Linsey a third of children diagnosed with dilated cardiomyopathy get better, a third get worse and a third stay the same.

In mid to late July 2009 Madi was stable. Noel and Linsey had gone out to a movie when they got a phone call from her dad and stepmother who were baby-sitting.

“They said ‘we called an ambulance – we think Madi is having a stroke’,” Linsey said.

One of the drugs had gone toxic in her system and she required a temporary pacemaker.

“In early July of 2009 we had started a transplant workup at Mayo (Clinic) just in case, because dilated cardiomyopathy is the number one cause for children to need a heart transplant,” Linsey said.

After complications following open heart surgery to install a permanent pacemaker, Madi was transferred to the Mayo Clinic with the hope of getting her off the intravenous heart drugs.

At that point, she was placed on the transplant list.

“Eighteen hours later she got a heart,” said Linsey.

Read More:  http://abcnewspapers.com/2012/05/30/blaine-sisters-shared-the-need-for-a-new-heart/

Monday, August 13, 2012 | Mcall.com | Cardiomyopathy in the News
The images flashed on the screen in the auditorium at Emmaus High School: There was Hank Gathers, the All-American basketball player, collapsing and dying on a basketball court in 1990.

Then an unnamed girl suddenly collapsing like Gathers in a school hallway. Two teachers rush to her aid, perform cardiopulmonary resuscitation and within two minutes shock her chest with an automated external defibrillator. She lived.

It was a scary, sobering presentation by Dr. Matthew Martinez, director of the Sports Cardiology program at Lehigh Valley Health Network. It is being repeated around the state in one form or another, as a new law requiring schools to present information annually about sudden cardiac arrest took effect at the end of July.

Gov. Tom Corbett on May 30 signed the Sudden Cardiac Arrest Prevention Act, reportedly the first law in the nation to address the condition in children and young adults.

Sudden cardiac arrest is not a heart attack, in which a blockage prevents blood from getting to the heart. Instead, it is an electrical malfunction that causes an irregular heartbeat that stops the heart from pumping blood through the body. About 250,000-450,000 cases occur a year, but almost all of them involve older adults, according to the Mayo Clinic.

The shocking deaths of Gathers and around 100-150 other people younger than 30 every year are unnerving, but what may be even more unsettling is that there is no simple answer to sudden cardiac arrest.

"Much remains unknown," Martinez said. "Many of the signs are no signs."

Some of the causes of sudden cardiac arrest cannot be detected in screening, Martinez said. The American College of Cardiology does not recommend automatic screenings for all athletes. In 10 percent of cases, Martinez said, electrocardiograms present "false negatives," or results showing problems where none exists.

Portable defibrillators, called AEDs, can save lives, but the window to save someone who has sudden cardiac arrest can be as little as five minutes, he said.

So what is a student, parent, coach and athletic director to do?

The first thing, Martinez said, is for student-athletes to undergo a full pre-sports physical, which would include a review of family history of cardiac arrest, since some risk factors may be inherited. Doctors also would screen for a history of fainting, chest pain, dizziness, racing heartbeat or difficulty breathing during or after athletic activity.

Read More:http://www.mcall.com/news/local/eastpenn/mc-sudden-cardiac-arrest-20120812,0,3457433.story
Friday, August 10, 2012 | Courant.com | Cardiomyopathy in the News
Hours after receiving a heart transplant, Colby Salerno awoke and spoke to his family, surrounding his bed.

"He said, 'I want to make my donor proud,'" his mother, Kelly Salerno, said Wednesday in front of Hartford Hospital, where her son received his new heart

Salerno, 24, from Cheshire has been blogging about his stay in the hospital — more than five months — waiting for a new heart. The blog gained an avid following, including New York Yankees' manager Joe Girardi, who called Salerno weeks ago.

Kelly Salerno said her son is now sitting, exhausted and in a lot of pain. Dr. Detlef Wencker, director of the hospital's heart transplant program, said the operation went well. Colby Salerno will be out of the cardiac intensive care unit in three to five days and should be home in two weeks. His drug regimen will at first consist of 32 different medications, mostly to keep his body from rejecting the new heart.

Salerno was diagnosed 12 years ago with hypertrophic cardiomyopathy, a condition that is usually detected during the teenage years. It is a congenital defect in which heart muscle thickens in the heart's left ventricle, which interferes with blood flow. That forces the heart to work harder to pump blood, according to the U.S. National Library of Medicine.

Salerno's condition began worsening during college. Because his condition doesn't allow for a mechanical pump, doctors had to rely on a cocktail of drugs to keep his heart functioning, but they cautioned Salerno that the medications wouldn't continue working for long. A transplant was deemed the best option.

Kelly Salerno said her family does not know the identity of the heart's donor, other than that the person was 18. The family of Jesus Vega, an 18-year-old from Bristol who died Monday after injuries he suffered a week earlier on a basketball court, has said that it was his heart that Salerno received Tuesday.

Kelly Salerno said Wednesday that she would like to know more about the donor and his family at some point, but for now, she's focused on helping her son recover.

The hospital's policy doesn't allow officials to release the name of the donor without the family's permission.

Read More:http://articles.courant.com/2012-05-30/news/hc-heart-transplant-blogger-0530-20120529-28_1_new-heart-heart-transplant-heart-muscle
Monday, August 06, 2012 | Buffalonews.com | Cardiomyopathy in the News

Aisha Rivera needs to undergo a second heart transplant for her third lease on life. And she is only 20 years old.

The Hamburg woman underwent her first heart transplant at age 10 in the University of Pittsburgh Medical Center after experiencing cardiomyopathy, a disease of the heart muscle, according to her fiancé, Dennis Brown. He and Rivera's mother, Ana, have been at Rivera's side every day since the petite young woman was transported by Mercy Flight about three weeks ago from Buffalo General Hospital to Strong Memorial Hospital in Rochester.

There she remained, sedated and hooked up to an extracorporeal membrane oxygenation device until about a week ago. That's when she underwent an unconventional surgery intended to sustain her until a suitable heart donor is found.

"They used this machine to save her life initially when she went into cardiac arrest and had to leave her on it to buy time for a plan," Brown explained in a recent email.

"Her best option would have been to get a heart, but since a heart didn't come in time and the fact that she may have to wait months and months, maybe even years, for a heart, the doctors had to do something."

What doctors did was implant two artificial heart pumps to give her failing, 10-year-old transplanted heart a lift. Brown said doctors at Strong Memorial had to get permission from the inventor of the device, Dr. Robert Jarvik, to use the patented Jarvik 2000 artificial heart pump in a way that it had never before been used.

"Because this was the only way they could save Aisha's life, it was approved, and Dr. Jarvik himself came to Rochester to assist in the surgery. The surgery took close to 10 hours and was a success," Brown said.

Rivera's most recent bout with heart troubles began about two months ago, after she told family she was experiencing fatigue and shortness of breath.

"She started to get better, and they let her come home [June 26] ... but she got really sick after that," Brown said, noting that Rivera had begun to experience congestive heart failure.

Once she arrived at Strong Memorial Hospital, Rivera went into cardiac arrest for three minutes before doctors were able to stabilize her.

Read More: http://www.buffalonews.com/city/communities/hamburg/article960685.ece

Wednesday, August 01, 2012 | Buffalonews.com | Cardiomyopathy in the News

Aisha Rivera needs to undergo a second heart transplant for her third lease on life. And she is only 20 years old.

The Hamburg woman underwent her first heart transplant at age 10 in the University of Pittsburgh Medical Center after experiencing cardiomyopathy, a disease of the heart muscle, according to her fiancé, Dennis Brown. He and Rivera's mother, Ana, have been at Rivera's side every day since the petite young woman was transported by Mercy Flight about three weeks ago from Buffalo General Hospital to Strong Memorial Hospital in Rochester.

There she remained, sedated and hooked up to an extracorporeal membrane oxygenation device until about a week ago. That's when she underwent an unconventional surgery intended to sustain her until a suitable heart donor is found.

"They used this machine to save her life initially when she went into cardiac arrest and had to leave her on it to buy time for a plan," Brown explained in a recent email.

"Her best option would have been to get a heart, but since a heart didn't come in time and the fact that she may have to wait months and months, maybe even years, for a heart, the doctors had to do something."

What doctors did was implant two artificial heart pumps to give her failing, 10-year-old transplanted heart a lift. Brown said doctors at Strong Memorial had to get permission from the inventor of the device, Dr. Robert Jarvik, to use the patented Jarvik 2000 artificial heart pump in a way that it had never before been used.

"Because this was the only way they could save Aisha's life, it was approved, and Dr. Jarvik himself came to Rochester to assist in the surgery. The surgery took close to 10 hours and was a success," Brown said.

Rivera's most recent bout with heart troubles began about two months ago, after she told family she was experiencing fatigue and shortness of breath.

"She started to get better, and they let her come home [June 26] ... but she got really sick after that," Brown said, noting that Rivera had begun to experience congestive heart failure.

Once she arrived at Strong Memorial Hospital, Rivera went into cardiac arrest for three minutes before doctors were able to stabilize her.

"She was sedated for quite a while after that," Brown said.

Read More: http://www.buffalonews.com/city/communities/hamburg/article960685.ece

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