Posts Tagged ‘Amy Verstappen’

Birth of a CHD Advocate

April 27, 2010

I’ve written about Amy Verstappen’s entry into the world of Congenital Heart Defect (CHD) Advocacy before, but her story is so powerful that you have to hear it firsthand for the full impact. Amy was kind enough to take a few moments on Lobby Day and tell her story once again.

A Moral Obligation: Amy Verstappen, CC-TGA

March 21, 2010

NOTE: It’s been a busy weekend for me, I’ve been dealing with some personal issues. It is not health related; but it has been time consuming… so much that I haven’t really had time to write for the blog. So here’s a blast from the past dated October 2008:

Born with Congenitally Corrected Transposition of the Great Arteries, Amy Verstappen had a normal childhood. Although she had “a bizarre heart murmur and a weird EKG,” her life was on track until she decided to have a child of her own. “In my sixth month (of pregnancy) I had lots of shortness of breath, edema, and my Nurse-Midwife says to me `You’re looking funny and we’re worried; we think you need to go back to your cardiologist.’” The cardiologist dismissed their concerns. “`They’re just Nurse-Midwives, what do they know about the heart?’”

Amy successfully gave birth to her daughter, Lena, and was contemplating pregnancy again two years later. “Before my pregnancy I had very pristine heart function. Two years after my pregnancy, I was planning another child but I was very tired. I had been tired a long time but I had a little baby.”

Stunned to learn that her heart function had “really gone south,” Amy was also shocked to be told that she needed a heart transplant. When she asked questions about her condition, the answer was “Mrs. Verstappen, you are in denial.”

After searching for answers, Amy found a clinic where the doctors were familiar with Adult Congenital Heart Defects and were capable of giving her a correct diagnosis. The news was good: She did not need a transplant, nor was her heart enlarged. Her reversed Ventricles merely created that illusion. But one of her valves was wearing out, and she would need to have it replaced. “Instead of a transplant I had a valve repair,” Amy says. “Luckily my heart function really snapped back, and I have pretty much normal exercise function.”

Afterward, one of her doctors not so gently told Amy that was time for her to make a difference:  “After I had my surgery, (Mayo Clinic Cardiologist) Dr. Carole Warnes looked at me and said `You are incredibly lucky. Very few people with your anatomy actually get to have surgery and you have a moral obligation to speak out on behalf of them.’”

Amy’s recent close call – and that moral obligation – led her to a fledgling organization known as the Adult Congenital Heart Association (ACHA). Joining the Board of Directors in 2000, Amy stepped off the Board in 2005 to become the Association’s first full time paid President.

In the past year, The Adult Congenital Heart Association has begun to transition from only dealing with adult issues to actively working for both adults and children with heart defects. The ACHA has recently joined with several other Congenital Heart Defect organizations to form the National Congenital Heart Coalition. (NCHC)

“I’m very excited about the new legislation that we are drafting,” Amy says. Her face becomes more animated as she speaks, her passion for better Congenital Heart care reflected in every word. “We’re actively writing a bill that we hope to have turned into law. The working title right now is the Congenital Heart Futures Act. It will say – very strongly – that Congenital Heart Disease is a lifelong disease, and this country needs to make a commitment to treating people over their lifetime, not just in childhood.”

“I am 100% positive that in the long run we will have an integrated, high quality care system for all survivors,” Amy says as she looks toward the future. “Our really long term goal is to have a very unified system with research, a registry, a way to quantify outcomes, all the centers talking to each other, sharing information and building knowledge together… that’s the long term goal and I am very positive we’ll get there.”

“You’ll see the ACHA working more and more with the Pediatric community. Remember that ACHA doesn’t just involve patients and families but also health care professionals. We’re really working to get the Pediatric Cardiologists together more with the Adult Congenital Heart Defect (ACHD) doctors and clinics because we still have a huge problem in this country in that we’re not getting good transitional care.”

“We designed a new brochure for parents, very specifically talking about what kind of care their children would need,” Amy recalls. “And when I presented a pilot version of this brochure to a group of Heart Moms – all leaders of some of the advocacy groups for children – three of them told me that no one had ever told them that their child was going to need this level of care. So what I would say to Heart Moms is that your kids can do great, they can thrive, you can have a high quality, excellent, full life…but the second thing I would say is parents should talk very specifically with their Pediatric Cardiologist and ask them hard questions. How often do you expect my child to see a Cardiologist? What kind of doctors do you think they might need? We don’t know all the answers right now but there are guidelines, like the Bethesda 32 report. The bottom line is anybody who has anything complicated, has to go at least every two years and be seen at a highly specialized Congenital Heart Center. And that includes those children with a complete repair.”

Amy turns quiet as she recalls an all too familiar event: “One of the saddest things about my job is to find someone who says to me, `By the time I got back to good heart care it was too late (for me).”

Local support – the best kind!

January 18, 2010

It’s been a frustrating weekend. First, I had to turn down a meeting with federal officials as an Adult Congenital Heart Association (ACHA) representative. If you remember, the Funky Heart and ACHA President Amy Verstappen appeared before a Social Security Commission policy conference in September of 2008. Amy spoke on behalf of the organization while I said a few words as an adult living with a heart defect.

We’ve been invited to appear before the Commission again, but the meeting is on a Monday morning. I would have to fly up on Sunday, and the regional airport I use must take Sunday morning off – the earliest I can get a flight is 3:30 PM! It doesn’t matter how much I try to juggle the schedule, I can’t work around that departure time. So I had to call the ACHA office and tell them that I just couldn’t do it.

The second thing that went wrong is I had to turn down a speaking engagement because of family obligations. I’d love to go, but the family thing has been planned for a month and I promised I would be there, so that decision was pretty much made for me.

I really hate to miss these events! When we get a chance to work at the Federal level, we’re doing something for every American affected by a Heart Defect – the Social Security policy conference is attempting to rewrite their guidelines about considering a Congenital Heart Defect (CHD) as a disability, and we’ve been asked to provide expert testimony.

But I really hate having to turn down the speaking engagement. If I had been able to accept it, I would have been speaking in front of a small, local group – no more than fifty people. But this is “where the rubber meets the road” – these local CHD support groups is where 95% of the support starts.

This is who you call when your Cardiac Kid has an unexplained fever in the middle of the night and you aren’t sure what to do. These  people are the ones who will sit all day in a hospital with you during surgery. When you get that first diagnosis and you don’t know hearts from a hole in the ground, all you know is that it sounds really bad, these are the people who will sit down with you and talk you through it. And its this group of people who are going to be there when you need them.

The Federal government can’t do that. A large national organization can’t do that; but the local chapters will. And they are very good at it – because they have all been there and done that.

Speaking to the Social Security Commission is important, but doing something on the local level is even more important. Your local CHD organization is where you can do the most good.

CHD Blog Carnival: Heroes

March 24, 2009

“Who am I? You sure you want to know? The story of my life is not for the faint of heart.” — Peter Parker, Spider-Man

Welcome to the first Congenital Heart Defect Blog Carnival! When the Carnival was announced, “The Gifts and Challenges of a Congenital Heart Defect” was chosen as the subject. As the entries began to arrive, it became apparent the the Challenges of a Congenital Heart Defect and the unexpected Gifts that occur because of them give all of our entries a certain… heroic quality about them. Average people overcoming the odds. The little guy who wins in the end. Follow along, and you’ll see what I mean. But don’t forget, if you enjoy a writer’s work, be sure to comment in the comment section under their post. The Author might not know of your appreciation if you post it over here! Of course, I’ll forward the comments on the essays hosted on Funky Heart.

Challenge: Something that by its nature or character serves as a call to battle, contest, or requires a special effort.

Sara Wallace of Palmetto Hearts offers a lyrical account of the battle her Cardiac Kid fought – and the battle every Heart Mom fights.

Jen Wright continues the theme as she writes not only of the heroism of her child, but as her community comes together in her darkest hour… and the greater good that may come of it.

Andrea Himmelberger and her family face challenge after challenge…and only later does she recognize the gifts that come from those who share a similar challenge.

Baby Hearts Press Author, Editor, and Heart Mom Anna Jaworski writes about her son overcoming HLHS to become a teenage robotics wiz. I think Alex has an ulterior motive – this Cardiac Kid plans to build himself a replacement heart!

Gift: A special ability or capacity; natural endowment; talent. Challenges we understand, but gifts? Who in their right mind could think living with a Heart Defect could be considered a gift?

In this September 2008 interview, Adult Congenital Heart Association President Amy Verstappen  recounts the personal challenge that was issued to her after heart surgery… and the gifts that she has given (and received) through service to other CHD Survivors. I consider Amy to be one of my CHD gifts; along with being a talented organizer and administrator, she’s a personal friend.

Awesome Mom recognizes the challenge that her son faces but also found an unexpected gift, for which she is grateful. Awesome Mom truly is awesome – she blogs during Sesame Street!

Teri, Author of the Inspiring Hearts blog, offers a ten point list of how her heart defect has made her the woman she is.

Paul Cardall has learned that life is a gift, and he takes a moment to thank the people who are special to him. When you’re fighting for your life you want someone to cover your back, and Paul’s team isn’t going to let him down. Give this link time to load; the photographer captured the Cardall family perfectly!

Heroes, one and all. Special effort? Special ability? Could it be that gifts and challenges are really just two sides of the same coin? Is one that closely related to the other? Your humble host closes with another line from the movie Spider-Man, turning the Green Goblin’s malicious threat on its head as he reminds us that “We are who we choose to be!



A Moral Obligation: Amy Verstappen, Adult Congenital Heart Association President

September 30, 2008

Born with Congenitally Corrected Transposition of the Great Arteries, Amy Verstappen had a normal childhood. Although she had “a bizarre heart murmur and a weird EKG,” her life was on track until she decided to have a child of her own. “In my sixth month (of pregnancy) I had lots of shortness of breath, edema, and my Nurse-Midwife says to me `You’re looking funny and we’re worried; we think you need to go back to your cardiologist.’” The cardiologist dismissed their concerns. “`They’re just Nurse-Midwives, what do they know about the heart?’”

Amy successfully gave birth to her daughter, Lena, and was contemplating pregnancy again two years later. “Before my pregnancy I had very pristine heart function. Two years after my pregnancy, I was planning another child but I was very tired. I had been tired a long time but I had a little baby.”

Stunned to learn that her heart function had “really gone south,” Amy was also shocked to be told that she needed a heart transplant. When she asked questions about her condition, the answer was “Mrs. Verstappen, you are in denial.”

After searching for answers, Amy found a clinic where the doctors were familiar with Adult Congenital Heart Defects and were capable of giving her a correct diagnosis. The news was good: She did not need a transplant, nor was her heart enlarged. Her reversed Ventricles merely created that illusion. But one of her valves was wearing out, and she would need to have it replaced. “Instead of a transplant I had a valve repair,” Amy says. “Luckily my heart function really snapped back, and I have pretty much normal exercise function.”

Afterward, one of her doctors not so gently told Amy that was time for her to make a difference:  “After I had my surgery, (Mayo Clinic Cardiologist) Dr. Carole Warnes looked at me and said `You are incredibly lucky. Very few people with your anatomy actually get to have surgery and you have a moral obligation to speak out on behalf of them.’”

Amy’s recent close call – and that moral obligation – led her to a fledgling organization known as the Adult Congenital Heart Association (ACHA). Joining the Board of Directors in 2000, Amy stepped off the Board in 2005 to become the Association’s first full time paid President.

In the past year, The Adult Congenital Heart Association has begun to transition from only dealing with adult issues to actively working for both adults and children with heart defects. The ACHA has recently joined with several other Congenital Heart Defect organizations to form the National Congenital Heart Coalition.

“I’m very excited about the new legislation that we are drafting,” Amy says. Her face becomes more animated as she speaks, her passion for better Congenital Heart care reflected in every word. “We’re actively writing a bill that we hope to have turned into law. The working title right now is the Congenital Heart Futures Act. It will say – very strongly – that Congenital Heart Disease is a lifelong disease, and this country needs to make a commitment to treating people over their lifetime, not just in childhood.” ACHA has a list of twenty or more potential sponsors of the bill.

“I am 100% positive that in the long run we will have an integrated, high quality care system for all survivors,” Amy says as she looks toward the future. “Our really long term goal is to have a very unified system with research, a registry, a way to quantify outcomes, all the centers talking to each other, sharing information and building knowledge together… that’s the long term goal and I am very positive we’ll get there.”

“You’ll see the ACHA working more and more with the Pediatric community. Remember that ACHA doesn’t just involve patients and families but also health care professionals. We’re really working to get the Pediatric Cardiologists together more with the Adult Congenital Heart Defect (ACHD) doctors and clinics because we still have a huge problem in this country in that we’re not getting good transitional care.”

“We designed a new brochure for parents, very specifically talking about what kind of care their children would need,” Amy recalls. “And when I presented a pilot version of this brochure to a group of Heart Moms – all leaders of some of the advocacy groups for children – three of them told me that no one had ever told them that their child was going to need this level of care. So what I would say to Heart Moms is that your kids can do great, they can thrive, you can have a high quality, excellent, full life…but the second thing I would say is parents should talk very specifically with their Pediatric Cardiologist and ask them hard questions. How often do you expect my child to see a Cardiologist? What kind of doctors do you think they might need? We don’t know all the answers right now but there are guidelines, like the Bethesda 32 report. The bottom line is anybody who has anything complicated, has to go at least every two years and be seen at a highly specialized Congenital Heart Center. And that includes those children with a complete repair.”

Amy turns quiet as she recalls an all too familiar event: “One of the saddest things about my job is to find someone who says to me, `By the time I got back to good heart care it was too late (for me).”

Baltimore, Day One

September 23, 2008

Made it to Baltimore just fine, the only problem I had was that my flight changed at the last minute. The guy assigned to pick me up had to wait a little while, and I feel sorry for making him wait. But other than that, it was an uneventful trip.

On the way from the airport to the hotel, I was passed by a truck owned by the most unusual businesses I have ever heard of : Crappy Pappy’s Dog Waste Removal Service. I kid you not. I was hoping they had a website so I could link to it, but they don’t. You just have to trust me on this one!

I was able to interview Amy Verstappen, the President of the Adult Congenital Heart Association. I’ll wait until I get home to listen to the recoding and write the interview, but I’m hopeful you will find it interesting. I’m not going to do it now, because I am on battery power with my laptop.

There’s no doubt I’m in a big city. Every fire engine that the Baltimore Fire Department owns is driving by the hotel. I hope it’s not us!