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An Open Letter to ACHD Cardiologists

Apr 18

Posted by: ACHA
4/18/2012 1:36 PM  RssIcon

By Christy Sillman

Note: I compiled these tips after informally polling some adults I know with congenital heart disease. I don’t intend to speak for us, but I want our voice to be heard by you—the cardiologist—because without you we’d be the lost survivors.

First off, I want to thank you for devoting your career to caring for adult survivors of CHD. It’s a specialty within a specialty and you’re on the cutting edge of lifelong congenital heart care.

Here are some things I have compiled after my informal poll that I think you should know about us:

  1. Some of us may be hyper-vigilant patients—you might even go so far as to call some of us anxious. Imagine if from the moment you were born the odds were against you. You were told you were going to die early, but you didn’t. You survived. You’re an adult now with dreams, aspirations, and SO much to live for. Every change in our health, regardless of how minor, brings back the feelings of terror from our childhood. We fought to live. We will keep advocating for ourselves and for our lives. We don’t mean to annoy, or cause you grief—we just really want to live.
  2. You have devoted your entire career to studying CHD. We have been taught since birth to pay attention to our bodies. We know our hearts well, so when we detect a change, please listen to our concerns. Our gut feeling may be the strongest vital sign.
  3. Trust is everything. There is nothing more vulnerable than putting your life in someone else’s hands. Many of us are transitioning to you after years of developing a trusting relationship with our pediatric cardiologist. If there was one thing you could do when starting with a new patient it would be to harness trust. We understand you’re busy, but we want to feel important and HEARD. Let the trust-building process guide your practice.
  4. Try not to patronize us. Some of us may yield from “tiger parents” and we hear plenty of opinions from those around us. We need honest and open conversations. Let’s work as a team.

    Example: “Can I get a tattoo?”
    Wrong answer: “No.”
    Outcome: Patient goes ahead with the tattoo without the cardiologist’s guidance.
    Better answer: “Well, because you’re on a blood thinner a tattoo would be a bleeding risk as well as an infection risk. I would urge you to seriously consider these risks before you decide on getting a tattoo, but if you insist on getting one let’s try to make it as safe as possible. Let’s talk about it.”
    Outcome: Patient makes an educated decision under the guidance of his or her cardiologist.

  5. We appreciate full disclosure—it helps build trust. If you don’t know something, just tell us. If you’re consulting with another physician, please tell us. If you’re stumped and want to order more tests, tell us. We want the truth. Don’t sugarcoat or diminish the seriousness of a situation. We’re tough. We need compassionate honesty.
  6. Empathy is the best bedside manner you can have. Put yourself in our shoes. Imagine what it must be like to be us. When you’re feeling overwhelmed and frustrated take a step back, “flip the coin,” and try to see things through our eyes.
  7. We’re smart. We’ve grown up in the medical community, BUT a knowledge assessment should be an integral part of every appointment. Have us repeat back what you said. Many times we don’t hear what you’re trying to say, especially when we’re interpreting medical jargon. Write all orders and plans out for us.
  8. Make us part of your team. Yes, we’re your patient, but we’re also your greatest colleague. If we can work together we’ll get much further together. We want discussions, not orders. We’ll learn from each other and tread this new cardiology territory together.

You’ve dedicated your life to working with us, and we are forever grateful to you. We would love to hear from you, the ACHD cardiologists, on ways we can help you help us. And personally, I’d love even more input from us—so ACHDers, how do you see yourself and your relationship to your cardiologist?

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 by clicking here.

Location: Blogs Parent Separator ACHA Blog

9 comment(s) so far...


Re: An Open Letter to ACHD Cardiologists

I also have TOF / PA and understand what you wrote and feel the same. I've been very fortunate that most of my cardiologists do approach me the same way as you recommend. The times that I have run into problems is when I was in an emergency situations. Trying to get the local doctors to communicate with my doctors in Philadelphia can be frustrating but when they do, things worked out.

By Michael on   4/18/2012 2:18 PM

Re: An Open Letter to ACHD Cardiologists

Your open letter to cardiologists is an amazing idea. I was born with Tricuspid Atresia and have been eternally grateful for the lifelong care I have received at Children's Hospital Boston. As an insurance agent, specializing in medical malpractice insurance for physicians and surgeons, I see the need for letters such as yours as they help to promote communication and empathy within the physician/patient relationship, not to mention risk management. I have also experience anxiety such as Michael when I needed to visit a local hospital - being so afraid they wouldn't communicate with my ACHD team. I plan to follow you in ipinion. Thank you for your commitment to writing and your chosen field of nursing.

By Michelle Marie Perron on   4/18/2012 4:03 PM

Re: An Open Letter to ACHD Cardiologists

I am the mother of a 34 year-old daughter with CHD and I couldn't have said this better myself. The transition to adult care has been the most difficult and frustrating experience so far.

By Rochelle Greenberg on   4/18/2012 6:12 PM

Re: An Open Letter to ACHD Cardiologists

I dont know much about your illness but was there at UCLA with your parents and grandparents for one of your surgeries. Glad you are still with us and able to use your person knowledge of this condition to help others.

By robert baird on   4/18/2012 10:10 PM

Re: An Open Letter to ACHD Cardiologists

I have TOF, Christy. It's a great letter. Thanks for stepping out. I haven't yet experienced having to depend on docs at a facility other than my primary treating hospital (OHSU, Portland OR) but I'm sure I will. Thanks again.

By Randy Hunt on   4/18/2012 10:10 PM

Re: An Open Letter to ACHD Cardiologists

This is brilliantly written. I see that other ACHDers are reading it. I would LOVE to see that some cardiologists read it. I have not had the fortunate experience of continuity if care but I am working on it. And while I have worked with many well meaning and hard working cardiologists I have yet to build a trusting relationship with any if them. Mostly because I have been a zebra in a herd of horses at a cattle ranch!! Get my drift. I am now entering into the care of an achd clinic. To be continued...

By Kristen Downing on   4/19/2012 8:01 AM

Re: An Open Letter to ACHD Cardiologists

I'd like to engage my doctor in a conversation away from the hospital setting, away from the politics and the procedures, without all the test results, the statistics and rhetoric, just to sit back and really philosophize with him over a few drinks.

By M@! on   4/19/2012 9:43 AM

Re: An Open Letter to ACHD Cardiologists

I find all these blogs interesting and amazing. You are all amazing people with to whom we are ALL privileged to provide care in ACHD. It's apparent to me that so many of you have amazing stories to tell and so for some time I have wondered how many of you would be interested in telling your story to really get the word out in both an art and science project? I wonder.

- MJNickolaus, CRNP, AACC

By MJN on   4/20/2012 8:13 AM

Re: An Open Letter to ACHD Cardiologists

Very beautifully written. There's not so many who can write about CHD as well as you can. Thank you for this really insightful post. Keep writing.

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