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What's the Patient's Name?

Apr 14

Posted by: ACHA
4/14/2014 1:46 PM  RssIcon

By Stephie Goldfish

Have you ever carried the burden that we are the forgotten Xs who will be Xd off and signed away? Some questions going through my mind lately are: What would you do if you found yourself in a precarious situation where you became either homeless or needing assistance with day-to-day living? Have you thought of your long-term care needs? Will you go to an independent living setting or decide to be in a nursing facility?

A person I recently met made me begin to think of the concept: "What's the patient's name?"

And there are some doctors, who before given any facts about the patient, always have the same first question: "What's the patient's name?"

To be sure, most ACHD doctors know exactly where my VSD is located. They know it is located in the perimembranous tissue of the septal wall between the ventricles. That the hole in my heart is about an inch in diameter. That my clubbed blue fingernails and blue lips are signs of severe cyanotic disease. And most of this they know right away by just looking and listening.

In 1991, when I came into therapy, I was also in search of an adult cardiologist because of not having found a dedicated ACHD doctor since I'd been in the area—at least someone who considered me more than just a number.

And I explained to my therapist about being in the hospital back in 1988, when I had had my ectopic pregnancies, and I had needed an entire team of doctors to be in the surgical unit. Prior to that first surgery, the chief of cardiology had visited me. And I remembered his name, but alongside him was a cardiology fellow whose name I couldn't recall.

My therapist suggested I call the hospital and ask to see the chief of cardiology or one of his associates. So I called, and the chief of cardiology happened to be up in Boston at the time. But I requested an appointment with one of his associates.

The next week, at my appointment with the new cardiologist, the doctor right away said he remembered me from that time he had visited me with the chief of cardiology in 1988.

Thus began my long history of a patient/doctor relationship that has spanned about 26 years.

Even though I have moved away and have since been to two of the best ACHD centers, my doctor back east is the type of person whom, when he calls you at 6:08 p.m. PST (and on the east coast it's 9:08 p.m.), you know you matter. That you're not just an X to be written off. And he's someone whom I talk with as a father or spiritual guide.

When I talked to him the other evening I said, "I'm sorry to bother you." And he surprisingly said, "Stephanie, you are never a bother." One question he asked me is: "Are you going to see the Noah movie?"

He would only know to ask me about this because of our long discussions about the scriptures and each of our deep-held faiths and beliefs. I remember he had told me at one of my appointments a long time ago about his talk he gave at his synagogue on the topic of Noah.

"Yes!" I said, "Of course, I'm going to see Noah!"

How reassuring it is to find a doctor who knows more about you than just the make-up of your heart physiology, and who knows you aren't just an X, to be signed away. Yes, it is heartening to find a doctor who knows your name.

Stephie Goldfish, aka Stephanie Hodgson, was born with a large ventricular septal defect, but it wasn't diagnosed until age 17. Since her defect went unrepaired, this resulted in Eisenmenger’s physiology, and she has developed severe secondary pulmonary hypertension. Stephie is an artist who graduated at the top of her class from The Art Institute of Pittsburgh; she is currently pursuing her love of writing, and writes short stories and poetry, as well as nonfiction. Learn more at her website and her personal blog.

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1 comment(s) so far...


Re: What's the Patient's Name?

I can totally relate. I had the most amazing who knew me and my defect. He also knew about 'me' family, my profession, my fears....he took the time, at every appointment, to talk to me. Last year he retired, but before doing so he made sure to find the right doctor for who he knew would continue to follow me as he would have. I am so grateful for him.

By Susana Garcia on   4/15/2014 8:19 AM

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