Health care system holds heart patients hostage

Check out ABC News' Hostages Dying for Healthcare Reform article... it sounds just like my family, does it sound like yours?

Some takeaways from the article:

• Many of us are captive to our big company insurance plans - no other companies will take us, and if we lapse in our policies, we're out of luck due to pre-existing conditions.
• In 2005, 60% of all bankruptcies were related to medical expenses. Wonder what it is now that the recession is in full swing...
  
• Heart conditions account for $123 billion in health expenses a year.

We may not agree within our community of heart warriors what the best solution is for health care reform, but we have all, likely, lived first-hand the need for change. Take a moment to write your congressional representative and share your story with them.

Treatments Hard to Come By...

Take a peak at this entry on the Wall Street Journal blog... it doesn't come as a surprise to patients and families of CHD patients, but it's news all the same:

There is not enough research into CHDs.

What's wrong, however, is the statement that this problem is too small for companies to invest research in. With 1 in 120 (approximately) kids born with heart defects, and a large percentage of those kids needing intervention, you can bet it's big enough to pay attention to.

The article does highlight, though, that there is hope in terms of new research. According to WSJ, the NIH is studying treatments in children with certain heart conditions and the American College of Cardiology is launching a catheter registry that aims to help inform doctors who treat kids. And at least one heart device for kids appears to be on the way: Medtronic’s experimental heart valve for both children and adults who had heart defects at birth.

Baby steps, but we can get there!

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?

Why Me but Why Not Me!

Why Me? But Why Not Me!
By Mom 2 Andre

Why me? If I only knew how life would have turned out when the day I learnt I was pregnant. I was told on numerous occasions that life would not be the same when you have a child. I accepted it with a smile because I believed that God blessed my life. I was looking forward to the time my little bundle of joy would be here, counting the days on the calendar, earmarking all the doctors’ appointments and ultrasounds that came along with the journey.

Nothing would have ever prepared me for February 12th, 2008. It was a phone call from my ob/gyn, telling me that my little one had an enlarged heart. I remember feeling numb all over, it was a feeling of total despair. What did I do wrong? How could I fix this? What did I do to deserve this. Why me?

Nothing would have prepared me for the birth of my first born. I was induced at 39 weeks of gestation. “It’s a boy!” everyone cried to me. “It’s a boy! Congratulations!” they said to me. I heard my little boy’s first cry; yes, the one I longed to hear from the time I knew I was pregnant. I cried with my husband, and he cried with me. We named him Andre Jacques. Minutes later, my eyes laid on my little treasure, head covered with his little hat, and tightly wrapped in the hospital receiving blanket. This moment only lasted for a few seconds. It was not fair, I thought. He was rushed to NICU, in case something was to happen with his heart. I suddenly felt sad. I wanted to be the first one to hold him like a new mother could. I was his mother after all. No one should not have been allowed to hold before I did. However, because of my c-section, I was only allowed to hold my son 12 hours later. I was mad. Why me?

Nothing would have prepared us for Andre’s first heart procedure, known as valvoplasty. We were waiting to see what happened, how he would develop during the first week of his life. At 6 weeks old, we were at the hospital for a routine echocardiogram. The next thing we knew, I was carrying Andre half dressed from one building to another. I was walking with tears rolling down my eyes. I saw people looking at me, wondering why I was crying. I finally reached the PICU. I laid Andre down on his bed. I stared at him from one corner of the room while nurses frantically hooked his little body to monitors. He looked very pale; his lips had no color. The next day, he was taken away from me for his first heart procedure, not knowing if I were to hold him ever again. His heart was in a bad shape. Why me?

Nothing would have prepared me for the phone call that I received from the cardiologist days later. He told me that the valvoplasty did not produce the outcome he was expecting. Open-heart surgery was in sight. I was in Andre’s bedroom, sitting on the computer chair. I put the phone down and all I could do is cry. I felt helpless. I would do anything for my little guy to avoid surgery. Why me?

Nothing would have prepared me for the last minutes with Andre before he was taken away from me once again. Totally sedated and ready for surgery, he did not know who I was; I could see it in his eyes. Sad images raced though my mind. What did I go wrong? Where did I fail? I wished my family were here. Why me?

Why Not Me? I have everything. I have a roof on my head. I have food on the table. I have clothes on my back. I have a good God. I am healthy. I have the best husband I can ever ask for. I have a supportive family. I became a mother on May 1st 2008.

Andre was diagnosed with a congenital heart defect known as severe Pulmonary Stenosis, Tricuspid Valve Regurgitation, and an enlarged right atrium. I became the mother I always wanted to be, one who would bond with my child at a different level that many would not have the chance to experience.

At 6 weeks old, Andre was in the hospital for his valvoplasty. I did not know if I was going to hold him ever again but I lived to be a mother for another 6 weeks.

At 3 months old, Andre was in hospital for his open-heart surgery. The cardiologist recommended that it were done earlier, but the surgeons advised to wait until he was 3 months old. Ideally, it should been a surgery better performed at 4 months old, but it was too risky to wait any longer. I lived to be a mother for another 2 ½ months.

Through this entire ordeal, I did not have to work a job outside the home. This meant I could be by Andre’s side 24/7/365 during his recovery.

With the medical expenses adding up to unimaginable figures, I had medical insurance to cover all the procedures that were required for Andre.

I live 15 miles north of the country’s best hospitals for pediatric cardiac care.

I have access to great support from the CHD community.

I believe that everything in life happens for a reason. We may not understand it right away, but all I know that each of us has a God given destiny.

I believe that we are the chosen ones to deal with these difficult situations because we can.

I believe that remaining thankful for everything throughout difficult times keeps our heart from allowing anger to stay and develop into bitterness.

I believe that new purposes arise from difficult times.

I once believed in “why me?” Along with extremely difficult experiences with Andre, a new purpose in my life has emerged. Today, I am able to help others through their time of difficulty. I now ask a new question: “Why not me?”

Social Experiment on FaceBook

Chances are, if you've come across this blog, you're likely also involved in a social network of one kind or another online. Many are on FaceBook... so we've created a bit of a social experiment, trying to pass the word onto others about heart defects and, hopefully, create a free-flowing community of supporters for the cause. If you're on FaceBook, you can find us under causes at "CHD Awareness Campaign."

From time to time announcements about various events throughout the nation will be posted. The cause is not affiliated with any group, but if funds are raised (and some have been), they will all go to the Children's Heart Foundation to further research.

The Care Behind the Kids!

Mark O'Shea and the Staff of the Pediatric Heart Institute at Vanderbilt Children's Hospital (Nashville, Tennessee) are back! But this is not a music video... it's a nine minute look at the Doctors, Nurses, and Staff of the Heart Institute and what they do. We present this to you on Valentine's Day with love and best wishes from both Kim and Steve!

Carrying the fight to the enemy

175+ people affected by Congenital Heart Defects (CHDs) attended Lobby Day 2009 in Washington, DC! The attendees were CHD Survivors, their family members, and their cardiologists. Brought together by the National Congenital Heart Coalition (NCHC), members of seven different CHD support groups united to to promote the Congenital Heart Futures Act, a new law that, if passed, would establish permanent federal funding for CHD research. It would also mandate that Congenital Heart Disease is a chronic Illness requiring lifelong care.

After a briefing/training session, attendees were split into groups by geographic location and sent to meet with their Senator or Representative. Steve didn't lobby, but stayed in contact with the groups via telephone and Twitter and blogged the event. His contacts reported fourteen congressional visits, with a high majority of them receiving a positive or very positive reaction. And obviously, those were only a fraction of the total number of visits.

Steve had personally been worried that the vote on the Stimulus bill that was occurring in the Senate would be a "distraction" from our promoting the Congenital Heart Futures Act. It may have been; we will never know. But Lobby Day had been scheduled many months in advance and just happened to fall on the same day as the vote; the only thing that could be done was to work around it.

Although from different groups with varying levels of lobbying experience, our lobbyists meshed quickly and worked together as a team. After all, we have a common enemy: Congenital Heart Defects are the #1 birth defect. A new CHD is detected (diagnosed either at birth or later in life) every 14 minutes! So in the ten hours of Lobby Day 2009, there were 42 NEW cases of a Congenital Heart Defect reported.

The Congenital Heart Futures Act will ensure that their life experience with CHD will be vastly different than ours. That's why this fight is so important.

Inspiration

There's a great new blog out there by Teri Martin, an adult CHD survivor... Inspiring Hearts. Teri's personal blog, Finding Inspiration Every Day has often been a source of solace for me during stressful work days - she lists simple things she loves, reasons to be happy, tidbits of her life. And her art work is amazing. She says her art is a direct result of her CHD - while other children played sports that were not an option for her, she pursued art - and is thankful for her gift. (Some of her art is featured in this post - more can be found on her Etsy site!)

Here's Teri's story, and an introduction to the wonderful things she's doing to spread awareness, create cohesion in the CHD community between the generations of survivors and to infuse others with hope, creativity and a passion for life.

Inspiring Hearts
by Teri Martin

If I had to pick a word that summed up my life's motivation, it would be inspiration. I was born with Hypoplastic Right Heart Syndrome PA/IVS with moderate TA. Being one of the oldest survivors of this complex disease, I never really knew many people with CHD growing up. So I focused on what inspired me to get through a lot of the hard times as a child and teenager. I could not go play on the playground when it was too cold or too hot, let alone try a sport. So I spent hours creating art and writing. Even as a kid, every time I was depressed I would bury myself into things that inspired me to be something more. My mother would probably say I had a very active imagination.

It wasn't until college where I really met people like me who had CHD. Still, back in college information was scarce, what I could find on the internet didn't make much sense unless you went to medical school. It wasn't until years after I graduated, that I learned about CHD associations like the ACHA. I was a bit hesitant to join, but I eventually I did, when I thought it was best to seek advice from those who could understand me and know what I have been through. So this past May, I went to my first conference, mostly to learn the information that was to be presented to us, but I walked away from the conference with much different objective. I wanted to learn my new friend's stories. The best times I had at the conference where the times we just sat down and shared our lives with each other.

I left the conference inspired to help others. When I returned home I kept thinking that there wasn't any place where we could really share what we have been through. The ACHA message board is great, but was more geared to talking about medical issues which is a great thing, when you want advice, need to vent your frustrations, or just want a friend to listen to you.

While I was at the conference some mothers were there who had young children and they asked us so many questions. When I got home I would have daily emails from parents, and teenagers asking me a lot of the same questions I was asked at the conference. So, as 2009 approached, I drew from something I already loved to do and had been doing for a few years already; I started another blog.

I started off by asking different parents CHD groups to send me questions, I also asked my fellow survivors what questions they think are important to answer. After I had gathered my question I went to my fellow ACHA'ers and asked them to volunteer to answer these questions and tell their stories. The response was overwhelming! Some of these questions are really hard to answer so it takes time, but each week I have gotten back at least one person responses, and I hope to have more in the months to come.

So in January I took my favorite word inspiration and named my blog "Inspiring Hearts," Living with Congenital Heart Disease: These are Our Stories. I want this blog to be a place where adults with Congenital Heart Disease are able to give hope to future generation of survivors, but also inspire each other to live life even in the face of such challenges.

Thank you, Teri, for all you are doing for the CHD community, your peers and the generations of survivors to come. You are, truly, an inspiration!

Tomorrow's a Big Day!

Over 200 people are gathering in Washington DC tomorrow to promote the Congential Heart Futures Act. Steve, my co-blogger, will be there, keeping us filled in on the progress, providing some interviews and promoting the cause. I'm disappointed that due to last-minute circumstances I can't make it!

Here at the CHD Blog, we frequently receive stories and poems, some of which we post. There are a lot of heart warriors out there, and, in my mind, it's a wonderful thing. Lately we've received a few emails from a Heart Dad in Kentucky, one of which we posted. Recently he sent a poem to share with our readers. After consulting with my co-editor, we felt it was well worth posting, and hope you will agree, even if you come from a different religious background!

My Life Yet To Come

by David Moore

My days were numbered from the very start

I fought for every breath due to my heart

My PDA closing I started to gasp

Just trying to breathe became such a task

The medicines they worked for a couple of days

But my heart still beating like I was running a race

It was beating so fast it was wearing me out

My heart was failing there was not doubt

My parents were worried, distressed, and confused

The tears now flowing due to the news

Tomorrows the day I go under the knife

I'm not even two weeks and fighting for my life

My lactic's were climbing and my function so poor

I had not the energy to play on the floor

I'm feeling so weak I just want to sleep

Something my mom is watching is starting to beep

I can hear them talking but just don't understand

I am still comforted by the warmth of her hand

The tone in her voice as she started to speak

Something about Jesus and my soul to keep

I have my eyes closed but I still see a light

I'm am very little but I know something's not right

I hear my mom cry as I took my last breath

But I am to young fear this thing they call death

The first thing I saw when I reached towards the glow

Was the figure of a man that for some reason, I know

He wrapped me in his arms and I felt so safe

I reached up to him and I touched his warm face

He spoke so softly and as not to startle me so

He told me he loved me and was letting me go

He told me a story of my life yet to come

That one day my living would be witness to some

I don't know why and I still can't explain

But I opened my eyes when I felt a sharp pain

I took a deep breath and I started to cry

I looked up to see mom with a tear in her eye

Still hooked to wires and lying in bed

For some reason I'm stronger and wanting to be fed

My parents don't know it but I saw God that day

He gave me more time to frolic and play

God has his reasons that some live and some die

What some parents have to endure leaves a question. Why?

I know it's not fair but I don't question the choice

I am a witness for him and I still have a voice

My heart isn't normal but it's perfect you see

Because without it there's no story, no poem about me

I'm one of Gods miracles a testament to his grace

I was only a week old but I got to touch his face.

David, like many of us, saw a need and void in the CHD community, so created a network, kentuckianalefthearts.com.

Within the heart community there is a lot of talk - how many groups are too many? Aren't our efforts too diluted already? Yes, we are diluted, and we need to unite. But are there too many groups? My answer, though many will not agree, is that different people need different levels of support, wish to be active in different ways, and have different overall goals. We all have one thing in common though - we all are, or love, someone with a heart defect. We all strive to make a difference for others that have walked down the often scary and lonely path of CHD survival and loss. We find it in a diverse array of ways, but we are united in spirit and hope for cures, better support systems, increased research and greater awareness.

Share your group's information and services, and we'll be happy to post them here - the more we network, the greater impact we can make!

Five Minutes: A Heart Mom's Story

It's National CHD Awareness Week! This year we will be posting entries daily, once again - 7 entries for 7 days.

I've had the privilege of meeting some incredible people who work very hard to share their lives with others, opening windows to allow the public to peek into the life of their innermost struggles of living with CHD.

Today's post features the writing of one such person - a heart mom who lays out the truth of the struggles many face with such honesty it stings. Though I haven’t been down the same road she has, I felt like a piece of my heart and soul were read to me. Perhaps some of you will feel the same...

Five Minutes
by Josie Kurz

Five minutes. Probably more time than it will take you to read this post, significantly less than it has taken me to write it. Certainly enough time to change a life.

A Mother's Instinct

Two years ago, when we first contemplated bringing home a sick baby, Michael and I relied upon his medical background to assure ourselves that everything would be alright. But as we came to learn, Claire's health is complicated and in retrospect, it becomes obvious that no amount of schooling could have prepared us for this journey. With no medical north star, we navigated rough waters, lots of tears, and some long nights. Lonely and scared are only the tip of that iceberg.

What became our beacon of hope was the emergence of a primal, almost unworldly instinct. To say that I know Claire is a bit of an understatement. It isn't just that I nursed her, or that I didn't leave her side for the first few months of her life and burned every minute detail of her health into my brain...it is something deeper. Michael has described our attachment by saying that despite their best efforts, our doctors hadn't cut the umbilical cord. Maybe because we are so similar, or maybe because I had to, or perhaps it was a gift from God, but whatever the reason, I know and understand that baby on an almost psychic level. With a little encouragement from some other heart momma's, Michael and I learned to rely on my instinct, particularly when Claire's health began to fail. When I felt something was amiss, something was always wrong.

Year Two

Sometimes I have to laugh at myself and the way that I came to handle the issue of Claire's heart; I tolerated its presence in our family so long as it stayed very quietly in its own corner and allowed us to live very much the way we want to without intrusion. Maybe because in the beginning we coped with diagnosis by clinging to the notion that Claire would get the switch and then be "fixed," it never really settled into my consciousness that congenital heart disease is a chronic illness in every sense of the definition. Once she flew through her open heart surgery, I was convinced that the worst was behind us and I never wanted to look back.

And then Claire got sick.

As I sat by her bed in the PICU, I suddenly realized that we could still lose this baby. For the first time that thought sunk in, and it was as horrendous as receiving the diagnosis all over again...although this time almost worse because by now Claire was more than an idea, a daughter about to arrive, this time she was Claire, a very real and amazing little girl who had stolen the hearts of our entire family. And those eight days were a very difficult battle for us because Michael's instinct was to rely on the opinion of the highly qualified physicians charged with her care and my instinct ran directly counter to their suggestion that, outside of being severely taxed by a difficult and devastating virus, Claire's heart was fine. I can't explain it, but I knew with every fiber of my being that all was not well.

Suddenly, congenital heart disease was no longer something hiding just outside my daily stream of consciousness as something we'd been through, but rather was standing on my chest, gnashing its teeth in my face. Year two of being a heart momma became infinitely worse than year one. There is no fix for this scourge, it's here to stay.

There were approximately six weeks between Claire's discharge from the PICU and her catheterization. During that time we did follow my instincts, and with the help and encouragement from family and friends, went to work creating a plan for managing Claire's health. I remember walking around in a daze, feeling like a live wire. I could feel impending doom, I knew we were facing a bad outcome.

I was convinced that the cath would show heart failure and that we would head immediately for another surgery. I was unreasonably petrified of needing another surgery, of what it meant about Claire's heart, her odds, her long term survival rates. I was so focused on what that cath might show that I never once stopped to worry about the procedure itself.

Laying her down

During our first round at Children's, Claire was still so tiny that they would allow us time to say goodbye and then they would take her away to sedate her and prepare her for the procedure. This time she was old enough that they allowed us to stay with her as they sedated her. What I didn't realize was that this entailed me carrying Claire into the cath lab and laying her on the (adult sized) table as she's still clinging to me; leaning over her with my face as close as possible to hers as they start the medicine and feeling her fight to stay with me. It took a lot of medicine to get her down and it seemed like an eternity that I held her little body as it struggled, but I would have stayed there forever if only to avoid the sensation of her finally letting go. Never have my arms felt so empty. Never had my heart felt so lost.

What were we doing when Claire was in the cath lab? Sitting in the waiting room, reading magazines, laughing at my nephew's antics. I think we wandered to the cafeteria, recalling how the pear trees were in full bloom when we'd been in this position less than a year earlier. I know I was numb, so fixated on preparing myself for the days and weeks ahead. I know I was traumatized by what had just transpired. But I wasn't worried about my baby, not just then.

What was I doing during those five minutes when my baby's heart did not beat? I can't tell you, I don't know. The greatest horror of learning that Claire had arrested for five minutes was the knowledge that I didn't know, during those five minutes, that something had gone desperately and drastically wrong. Me, with my touted mother's instinct and my ineffable connection to Claire...I wasn't aware that it could all be ending. I felt then, and still carry now, this overwhelming anger that I have been robbed of my one final safety net ~ not only could we still lose this baby, but I might not know it as it happens. All at once, the worst wasn't in the past, the worst is the fear of what could come.

In the wake of those five minutes

Who am I in the wake of those five minutes? Surely the mother and wife and daughter and sister that I was before and yet certainly never the same again. Those words are soul-searing, heart shattering, life changing. Nothing can ever be the same again. And yet, we had no time to stop and process, barely even time to grieve. What do you do? What can you do? We went first to the Chapel to turn everything over to God, by whose hands I believe all of our fates to be sewn. And then to our daughter, so tiny in that bed, surrounded by a very skilled team of physicians working to keep her here with us.

It's a blur, a pain-filled hazy blur from which I have spent the past nine months running. The walls penning in those five minutes and the havoc they wrecked on my heart and my soul began to crack in November. Suddenly, in the midst of a headache-induced daze, I found myself confiding these exact thoughts to confidantes who are the very few who could actually understand that pain, my sisters on this agonizing road, mothers to heart daughters, achingly familiar with this burden.

Leaving 2008 in 2008

Only now can I put into perspective the fallout of those five minutes. I freely acknowledge that those moments irrevocably changed me but I sense that the fallout had a wider impact. Because it is precisely what it is, no one wants to discuss it. Within our family, the ripples have been felt quietly; but families carry on, buoyed by love and understanding. Friendships seem a bit more vulnerable. While some have grown stronger, others seemed to wither on the vine and I didn't exactly understand why until I read this fascinating insight on another blog (in the context of how friends and relatives respond to a parent's grief):

"like the mourner, friends and relatives are often angry that this bad thing happened, angry, perhaps, at the universe, the gods, the unfairness of it all. But, in many cases, I think they're also very angry about the loss of their old relationship with the mourner. They don't know or particularly like this new, sad person. They want things to go back to the way they were, to reconstruct the world in the shape it was before everything shattered. At some level they realize that that's not going to happen, but it's probably not all that uncommon to be [angry] at the griever, blaming them for making it impossible...many friends don't express these feelings directly or, perhaps, aren't fully aware of them."

When I read this passage I had such a strong feeling of recognition that I felt almost ill. To be honest, there are times when I myself am angry that this has all happened and, on some level, I would love to go back to the person I was before Claire, to the relationships I had then...but not if it means going on without Claire. And then I feel frustrated that there are those out there who expect me to be the person I was two and a half years ago, who can't understand how impossible that might be.

Maybe because of those five minutes I am suddenly able to be gentler to myself, more protective of myself, more forgiving of myself than at any other point in my life. I know I have been traumatized, I know that I suffer through bouts of PTSD and depression, I know that I experience intense anxiety about the things that are in God's hands only. I allow myself to deal with those emotions, to be sad when necessary, to cry, to worry, to hover. But I also refuse to let myself wallow in the negative, because bottom line, I still have my baby girl laughing and running and dancing and getting into all kinds of mischief (not to mention her beautiful and healthy big sister, a true light in our lives). As Michael said from the very beginning, we will endure unspeakable pain and suffering now if it means that Claire will never remember the struggle or understand what we (and she) went through in order for her to survive. While those five minutes devastated me, they were same five minutes that that allowed Claire's failing heart to return to optimal functioning.

Looking Ahead

So to me, 2009 is full of promise. I enter it feeling older, wiser, and more purposeful. I have set goals for myself, some involving letting go and others, starting anew; moving forward in ways that were too overwhelming to contemplate last year but seem natural and comfortably enticing now. I accept the truths that I learned in 2008 and I honor them by living life to the fullest, by loving my children with everything that I have in me, finding joy in our moments together, carving out special time with my husband and giving myself space to be who I am and to feel how I feel. Every day is a gift, and so even when it's storming, I intend to get us out there, dancing in the rain.

CHD Survivor Video!

This is Mark O'Shea's video for the song "Look at You Now!", filmed at the Vanderbilt Children's Hospital Pediatric Cardiology Unit. As you'll see at the end of the video, Mark's one of us!

Enjoy!

It works better when you work together!

It’s hopeless.

We can’t do anything.

That is what parents of babies diagnosed with Hypoplastic Left Heart Syndrome (HLHS) were told not many years ago. The word Hypoplastic means “underdeveloped”, and that is exactly what has happened: the heart’s Left Ventricle is much too small to pump blood to the body. The hypoplasia extends much further than the Ventricle; the Aortic and Mitral valves are tiny (or nonexistent), and the Aorta itself is tiny. The child is alive only because of a Patent ductus arteriosus, a “built in” heart defect everyone is born with.

The Ductus Arteriosus is a small connection between the Pulmonary Artery and the Aorta that allows the heart to function while still in the womb. Once the child is born, the connection will close by itself, usually in less than two weeks. A connection that is “stuck open” — a Patent ductus arteriosus — is easily corrected. But in this case, when the ductus closes, blood flow drops and the child goes into shock.

HLHS was the defect the doctors had no answer for. Obviously, a surgical repair was the only option, but how? How do you fix a heart that is, for all intents and purposes, missing the left half? A heart transplant was an option, but rarely was an infant’s heart available, and there was almost no time to find one.

But in the early 1980’s the answer came. Rather than try to fix everything at once, make the repair in stages. Three operations, (known collectively as the Norwood Procedure) performed in sequence, allowed the child to survive. Certainly it was understood that this wasn’t a cure, but the child could live if he or she received lifelong medical care.

Fast forward to 2009. The first generation of HLHS survivors are now in their early to mid 20’s. And with no older survivors, no one has any idea what future health problems may affect them. Like Edmund Hillary climbing Everest, no one’s been here before, and no one has a clue what's ahead.

The CHD Blog and Adventures of a Funky Heart will both be in Washington, DC on February 10, 2009 to support the National Congenital Heart Coalition (NCHC) effort to create a national registry of patients with heart defects. The NCHC is made up of several different CHD organizations, working together for the first time. The American College of Cardiology, the Adult Congenital Heart Association, It's My Heart, the Congenital Heart Information Network, Mended Little Hearts, and the Children's Heart Foundation have all come together to work for this important cause. (The group information is taken from the cover of the informational packet that was mailed to attendees; there may have been more groups that have joined the effort since then!)

If data is gathered about those of us living with a Congenital Heart Defect right now, it could be analyzed and used to predict our future health care needs. It can also be used to make things a little easier for the next generation of CHD patients. As an example, I take 11 different medications. Yes that is a lot, but some CHD’ers take more, and some take less. If the knowledge gained from a national registry could eliminate one medication that each of us has to take, the savings would be phenomenal.

Much too often you read in your local newspaper about the child who needs surgery for a major heart defect (Infant Survives Heart Surgery, reads the title of the one and only article about me in the local Daily Planet) but what happens after that? Usually you don't see a follow up article in the local press. But Cardiac Kids grow up; we get jobs, pay our taxes, fall in love…

... In other words, we live our lives.

Pick them up and put them down!

It's a proven fact that exercise improves your fitness level. If you have a CHD, that's important: Strengthening a damaged heart can make it work better, function longer, and be more resistant to shock if you happen to have a health crisis. In short, exercise can extend your life.

For any exercise to be effective, your heart and respiratory rate have to increase - safely! So be sure to consult your doctor before beginning any exercise program. If your doctor clears you for exercise, be sure to ask if he/she recommends a certain type of exercise. Be sure to start slowly and build your strength.

Music can make your exercise routine go by faster and keep you going when your body says "Wait a minute!" You also tend to move with the beat: faster music makes you work harder. Don't believe me? American Pie is a classic song, but just try to exercise to it. 500 Miles by The Proclaimers works much better!

This website will sell you "workout music" with faster or slower beats, depending on how intense you want to exercise. Or you can download your favorite MP3's. Either way, if your doctor approves, get out and get moving!

Put down the Vicks!

No, not Michael Vick, the former NFL quarterback... that subject is an entirely different post for an entirely different blog! We're talking about Vicks VapoRub, which can be found in nearly every medicine cabinet in America. I bought a bottle myself the last time I was at the drugstore. We all have memories of our moms coating our chests with VapoRub when we were sick. Recent research has proven that we were all doing it wrong.

"The ingredients in Vicks can be irritants, causing the body to produce more mucus to protect the airway," said Bruce K. Rubin, MD, of Wake Forest University. While that's not good for anyone, it's especially not good for small children. And even though the report doesn't mention this, it can't be a good thing for someone with any airway issues... including a Congenital Heart Defect.

The study showed that VapoRub increased mucus secreation 59% in healthy, uninfected lungs. Even when a child is healthy, that much mucus could lead to airway inflammation and irritation, possibly closing the airway. Also, VapoRub doesn't actually make it easier to breathe. The menthol triggers a cold sensation as it enters the nasal cavities, which tricks the brain into believing there is increased airflow.

Newborn Screening Test Could Save Lives

Research paper: Impact of pulse oximetry screening on the detection of duct dependent congenital heart disease: A Swedish prospective screening study in 39,821 newborns

The British Medical Journal

Routine screening of blood oxygen levels before discharge from hospital improves the detection of life threatening congenital heart disease in newborns and may save lives, according to a study published on bmj.com today.

The low false positive rate of pulse oximetry screening and the reduced need for treatment because of a timely diagnosis also makes this a cost effective intervention, say the authors.

Pulse oximetry screening has been suggested for early detection of congenital heart disease, but its effectiveness is unclear.

The authors found that in apparently well babies ready for discharge a combination of clinical examination and pulse oximetry screening had a detection rate of 82.8% for duct-dependent heart disease. The detection rate of physical examination alone was 62.5%. Pulse oximetry also had a substantially lower false positive rate (0.17%) compared to physical examination alone (1.90%).

However, some babies had been detected before discharge examination, meaning that the introduction of pulse oximetry screening in West Götaland improved the total detection of duct dependent heart disease to 92%. This was significantly higher than the 72% detection rate in other regions not using the screening technique. Interestingly, improved detection was achieved by a maximum of just five minutes of extra nursing time per baby.

Links for CHD Families

Here are several very important links for you to read today. Read them online, download them, or print the file, whichever you choose. If you try to download the file as a .pdf document, you won't be able to... the writers are trying to protect their work, you can read the details on the download page. But you can print the entire file, which is just as good! The only bad thing is that these links are from medical journals, written by doctors for other doctors. It's almost 100% medical terminology, and you'll probably have to have an interpreter.

Tetralogy of Fallot (ToF) in a seven year old girl

Some thoughts on Tetralogy of Fallot (ToF) surgery

The Fontan Procedure... what's down the road?

This next link refers to the Glenn Shunt, and has a very good illustration. The illustration, however, is of the Classic Glenn Shunt, which was first used in the 1950's. The modern version, the Bi-directional Glenn Shunt, was first described in 1966 and not popular until the 1970's.

Click the .pdf button to be taken to a three page file concerning both versions of the Glenn Shunt. This is important reading for anyone who has a Glenn!

This link has more layers of information than a seven layer Chocolate Cake! Above the illustration, click the heading labeled "Contents"; there you can find 40+ links to heart defects, surgical procedures, and case studies. There is lots of information here, and not just on the Glenn Shunt.

Who We Are

So who are we?

We’re 1 out of every 120 people... there’s a new one of us every 14 minutes. We are both genders and we are all ages. A million of us are adults, and about 800,000 of us are children.

We’ve made it through surgeries, hospital stays, infections, Endocarditis, pacemakers, and Heaven know what else. We’ve given gallons of blood, one vial at a time. We’ve fought back against tremendous odds. We’ve been so sick that we’ve scared the world’s best doctors witless… and then amazed them even more when we recovered.

We aren’t related by blood but we are a family. We call ourselves the Cardiac Kids and Heart Warriors. We have an amazing inner strength, but we are terribly fragile at the same time. We know that most of us shouldn’t even be here and so we live every moment as if it is our last. We’ve celebrated our victories and we’ve mourned our losses. Our heroes include a Flying Tomato, a golfer, and a former movie star, because we are them and they are us. Our parents are Heart Dads and Heart Moms, and we consider those titles as Badges of Honor. They deserve it; they were the first ones to discover that a heart defect doesn’t just break one heart... it breaks three.

We work, we play, we pay our taxes and we live our lives. We’re in your community, in your church, in your school, in your office, and quite possibly in your home. We move a little slower, do some things a little differently, but we usually get along without causing a fuss.

We are people living with Congenital Heart Defects.

Welcome, Steve!

It is with great pleasure that the CHD Blog introduces a new contributor... Steve!

Steve, who blogs at Adventures of a Funky Heart, is a 42 year old male born with Tricuspid Atresia. Despite three heart operations, a stroke, and a pacemaker, he lives and thrives in rural South Carolina.

Over the past several months, Steve has allowed us to cross-link to some of his excellent entries. Now, Steve will be adding content to the CHD Blog on a more regular basis. We welcome Steve, and look forward to the wealth of information and insight he'll be providing! Be sure to visit his blog, which provides a front-row seat to the issues (and joy, and pain and pleasures) relating to life as a CHD survivor.

Second Opinions: It Never Hurts

The following letter arrived in the CHD Blog's inbox from Farshid Bayat...

My daughter Ava was born with DORV, D-TGV, PDA, large VSD, ASD and COA on 21 October 2006. In a nutshell, Ava had two surgeries at the ages of 2 and 12 months. Her final surgery took place on 27 April 2008. Although most of the cardiac pediatricians we had visited before were of the opinion that Ava's life could not be saved, the excellent pediatric cardiac surgeon Dr. Navabi Shirazi managed to thoroughly repair the main defects in a ten-hour surgery. Ava was discharged from the hospital after a ten-day stay.

Today Ava acts like any other child with no physical restrictions. She is a bundle of energy who loves running and playing football with her older friends. Parents of children with CHD should remember to ask for a second opinion before choosing a surgeon. Had we known about Dr. Navabi from the very beginning, Ava would have been treated by only one surgery.

I wish I could say that it's the only time I've heard of such a story, but it simply is not the case. Until we have a central registry of CHD cases and better reporting information for CHD cardiac care facilities, the need for second opinions will remain vital in your (or your loved one's) quality care. Many times, at diagnosis, we have little time to prepare. We may feel comfortable with the individual(s) who provide the diagnostic results and recommendations, and be lulled into a sense of comfort in working with them. But I urge patients and parents alike to be diligent - ask those tough questions, research the facility and its staff carefully and talk to fellow CHD survivors and families when you can - it can make a tremendous difference.

No Flu for me, thank you!

It's a given that Congenital Heart Defect Survivors need to try to keep themselves as healthy as they can. Our weakened bodies are susceptible to just about every illness that comes along, from the common cold to that winter monster... the Flu!

The first thing you should do, of course, is check with your cardiologist. If he/she recommends it, get the flu shot! This should be second nature to us by now - when the weather gets cold, we put on an extra layer of clothes, try to remember where we stored our gloves and scarf, and get the flu shot.

There are two web based resources that can also be useful in fighting the flu bug: The Centers for Disease Control (CDC) maintains a web page dedicated to information about the flu. They also offer an online weekly flu report. The weekly report usually refers to last week - it take a little time to compile all the information - but it is a very detailed assessment of Flu Activity in the United States. If you love numbers, charts and graphs, the weekly flu report is just your thing!

Google also offers a "flu tracking service", in a sense. They have flagged the words "flu" and "flu symptoms" in their search engine, and also flagged words that describe most of the major symptoms of the flu. They figure that when people start feeling sick, a lot of them will sit down at their computers and Google their symptoms. A lot of people do exactly that - and Google collects and tracks that information.

The result is Google FluTrends, a chart showing the number of people typing the symptoms into Google's search engine, along with a map showing the states those searches are coming from. Google says that unlike the CDC weekly report, their system anticipates the Flu. Because people tend to look up their symptoms as they appear, Google claims FluTrends is actually a day or two ahead of an outbreak. According to FluTrends, Texas is not the place to be right now!

Who's right? CDC has been tracking contagious illness for a long time, and they are good at it. But Google seems to be on to something... so why not use both?