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Jul 6

Posted by: ACHA
7/6/2011 9:07 AM  RssIcon

By Christy Sillman

“I apologize in advance that you are sort of my guinea pig,” Terri Schaefer told me before she posted my blog as the first on the ACHA website. It made me laugh. Doesn’t that sort of sum up the ACHDer experience—being the guinea pig?

I can think of all the medications, experiences, procedures, and surgery techniques that were used on me that were considered experimental or “new.” Some of these were breakthroughs in CHD care, such as the use of prostaglandins in the newborn with CHD to keep the ductus open while they awaited surgery. When I was born in 1980, this drug was experimental and my parents “took a chance” when their only other option was to take me home to die.

Other surgical procedures initially looked successful but over time, evidence proved they were dangerous. For instance, the Waterston shunt that I received in 1980, like the Potts shunt, carried a high risk of pulmonary hypertension. Many of us are survivors of such procedures.

If you grew up seeing a pediatric cardiologist at an educational medical facility, you too may have experienced the “can I listen to your heart?” experience. Lines of medical students would form outside of my examination room, simply to listen to my impressive murmur. It’s strange how you can feel like a superstar and a super freak at the same time.

Now we’re older, and the doctors have learned a lot from our experimental days. Today children with CHD receive some of the best care pediatric cardiology has ever seen, mostly thanks to us, the guinea pigs.

If you are reading this, then you may also be a survivor. Let us not forget the many we’ve lost along the way. It seems confusing at times—why did we survive and they didn’t? There is a bit of survivors’ guilt we carry with us every day. We were spared for some reason. We’ve known of others who lost the same battle—if not personally than via statistics. The reality of how easily we could have been one of those failure statistics chills us to the bone.

That’s what makes being an adult with CHD difficult. As a child, our parents made the tough decisions on whether or not to choose an experimental treatment. Now we have to make the decisions, and if you haven’t had to yet, you know there will be a day in your future when you will.

Take, for example, the “too good to be true” Melody transcatheter pulmonary valve. If you haven’t heard of this thing you need to Google it as soon as you are done reading this. It excites me and terrifies me at the same time. The idea that I wouldn’t need to experience open heart surgery to have my pulmonary valve replacement overwhelms me with happiness, but innately I’m skeptical of the long-term implications of this invention. Is this a prostaglandin-like invention that will revolutionize our surgical approaches, or is this another Waterston shunt that may sound good at first but prove to be a total disaster? I’m praying for prostaglandin-like success.

Some of us have had this procedure already, and to you, I tip my hat. You are braver than me, but then again, I’m not facing pulmonary valve replacement at this moment. But I will someday soon.

We will continue to face new and fancy approaches to our care. It is the nature of our generation, the guinea pig generation (which truly spans many decades).

Thank you to all of us, especially those older than me and those we’ve lost. We’re all in this together, and we’re all responsible for the advancement of our field. We’re saving each other’s lives—even when we are just trying to save our own.

Christy Sillman was born with Tetralogy of Fallot with Pulmonary Atresia and now works as a pediatric ICU nurse. She is passionate about working with both children and adults with congenital heart disease. Christy writes a weekly column on her experiences as a nurse, ACHD'er, and new mother, which you can read at iPinion.us by clicking here.

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9 comment(s) so far...


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Re: Guinea Pigs

Anyone else get the feeling you're being studied? That is to say, I've always wondered if all those test results we produce go into a database somewhere to be quantified and cross referenced?

By M@! on   7/6/2011 10:09 AM
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Re: Guinea Pigs

'Guinea Pigs' does sum it up. I've never heard of the Melody transcatheter pulmonary valve. I'm going to Google that now. Thanks!

By Stephie on   7/6/2011 11:50 AM
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Re: Guinea Pigs

TPV therapy is the same thing they've been doing with Aortic valves for the last few years. I asked my doc about that before I had my valve replacement in '08. Unfortunately, my condition was too severe by then and they hadn't developed a pulmonary equivalent. It seems hopeful but temporary.

Forgive my skepticism but, I believe that somewhere down the line most CHD patients will require a complete heart transplant. Think of the body as a car. Everytime you take it apart or replace parts, it becomes less than 100% functional.

Just give me my monkey heart already.

By M@! on   7/6/2011 3:09 PM
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Re: Guinea Pigs

I have to say, I've never really felt like a guinea pig... but I do feel like I have watched an entire history of cardiac equipment over the past 39 years. I still remember the EKGs with the rubber straps + metal plates around your arms and legs and then a tech moving the suction bulb around your chest to get a reading. I've seen so many version since then - wonder what's next!

By Alissa on   7/6/2011 8:47 PM
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Re: Guinea Pigs

Your blog was right on the money for me. I also feel both extremely blessed and somewhat of a guinea pig. I know that all I experienced with my TOF not only helped me to stay alive but also helped the future generations of CHD kids. I am 44 years old and never a day goes by that I do not remember how truly blessed I am.
Thanks for the great blog...I will be following...

By Lucia Evans on   7/7/2011 9:10 AM
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Re: Guinea Pigs

This was fantastic.

By David Lacy on   7/7/2011 9:23 PM
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Re: Guinea Pigs

I'm an outsider here (although my wife is an ACHDer) but I like to think of you all as pioneers and explorers and not necessarily guinea pigs! I'm always amazed at my wife's rockstar status when we visit the docs, especially when it comes time for the head-scratching on why she's thriving despite all the odds. You're all taking us places where no one has gone before whether you consider yourself a rodent or a superstar!

By Dennis Bishop on   7/8/2011 11:54 PM
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Re: Guinea Pigs

Thank you, thank you, thank you, Christy, for writing this. My first surgery was in 1958 when they packed you in ice. I survived, wrong diagnosis and nothing fixed...coarctation of my aorta wasn't even noticed. And when it was diiagnosed and repaired in 1979, I wondered how long the 4 inches of dacron sewn on my aorta would last but was afraid to ask until 10 years later. It was uncertain how long I would live. For some reason, I was totally surprised and grateful when my 60th birthday came around. I continue to feel like a guinea pig and grateful at the same time. I can relate to everything you said: the "other' doctors poking and looking at me, the various procedures or drugs or birth control that have been taken off the market due to deaths, etc. I have just found out that the surgery at 1958 is now done on an out-patient basis...WOW! At 65, as you have said, I am both guilty that I am still alive and others are not, and thrilled at being a part of ACHA. Thank you all.

By Toni M Smith on   7/18/2011 10:49 PM
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Re: Guinea Pigs

I love being a guinea pig. I know you don't hear that to often but its true. With everything I have gone thru and how many times the teaching hospital has saved my life I see it as the least I can do. Of course I always weigh the risks. And the best thing is when my liver doctor, at the teaching hospital, says," don't tell the student what your defect is I what them to guess." I love it.

By Anna Taylor on   7/22/2011 7:30 PM

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