Alin Gragossian, DO, checks out her scar a few days after heart transplant surgery.
A change of heart

Not waiting around to die: Considering my prognosis after a heart transplant

During my emergency medicine residency, I suddenly and unexpectedly learned I’d need a new heart at the age of 30. A month later, I got one.

Editor’s note: This article has been adapted with permission from Dr. Gragossian’s blog.

What’s your prognosis?

I get asked this all the time. When did this become socially acceptable? Luckily, I’m an open book with a loud mouth. I’m inquisitive. And I have been trained to think scientifically.

I’m an emergency medicine resident. In December, I suddenly and unexpectedly learned that I needed a heart transplant at the age of 30 because of a rare genetic anomaly. In January, I was reborn with a new heart thanks to a selfless and incredible donor.

The numbers

When people ask me about my prognosis, I can go through many different percentages. According to a paper published by Anelechi Anyanwu, MD, in 2003, 20% of heart recipients die within a year of the transplant operation. Afterward, the death rate is 4% per year for the next 18 years, so that 50% of patients can expect to be alive after 10 years and 15% after 20 years.

Alin Gragossian, DO

Or I can take a stroll through downtown Philly (with my Nikon in hand) while taking photographs of the skyscrapers that overlook the city that I’ve called home for the last three years. During this stroll, there is a small chance that I will get hit by a car.

Life is fraught with risk

According to national statistics, there is a 1 in 572 chance that I will die after getting hit by that car. It will likely be from blunt force trauma. I will hemorrhage internally, and die a fast or slow death (depending on which organ has been lacerated).

I can carefully search the internet for the descriptive statistics regarding heart transplants—the medians, the maximums, the minimums, the averages of life expectancy. I can educate myself about our mortality rates. My own mortality rate.

According to UpToDate, the median survival for heart transplants between 1982 and 2015 was 11 years for adult recipients. Many adult patients die about a decade after transplant. Younger patients usually live longer than that. I can anxiously look up the definition of “young” in peer-reviewed articles.

‘Tackle my next feat’

Or I can take the time to tackle my next feat. I have always wanted to get my pilot’s license. I was going to do it at some point after my medical training was complete. So, I can sign up for a course and start flying through the horizon, checking off another one of my life’s ambitions.

Dr. Gragossian in the hospital one day after her heart transplant surgery.

But there’s a chance I’ll die while conquering this goal. According to Statista, 561 people died in air crashes around the world last year. So my plane may crash from some sort of incorrect measurement, perhaps the plane’s fuel will be miscalculated. Most likely (55% of the time), it will be from pilot error—my own ignorance. I will die from penetrating trauma or pressure-related injuries, and my body will burn, slowly, into charred nothingness.

I can ask my doctor about my future co-morbidities. By the sixth year after transplantation, most heart transplant patients will have high cholesterol. About a third will have failing kidneys. A third will suffer from coronary artery disease. A fifth will have experienced some sort of cancer.

Or I can call my parents. I can talk to them to pass the minutes because I just can’t seem to fall asleep. I can listen to their voices telling me to make sure that I eat, make sure that I stay warm. There is a chance that an unknown someone will then barge into my apartment. I will tell my parents to hold on, and I will open my bedroom door to find a person burglarizing my home.

That person will then kill me, most likely with a gun. A gunshot wound to the head, or maybe (more likely) a gunshot wound to the chest. According to 2014 national databases, there are 15.9 homicides per 100,000 residents yearly in Philadelphia, one of the most dangerous cities in America. So I will become a fatal statistic. Random home invasion, random homicide. Cause of death: (most likely) gunshot wound to the chest.

I can Google the longest someone has lived with a heart transplant: 33 years. That can’t be right. I can Google it again. 33 years??? Perturbed, I can then think about how I won’t even make it to 65. Holy s&%#.

I can look up the fancy prognostic indicators, the things that put me at risk for early death. Or I can go for a jog, feeling the early spring wind against my face. Feeling every muscle in my body slowly get stronger after months of being deconditioned. However, there is a chance that I will suddenly die during this invincible jog. In medicine, we call it sudden cardiac death.

I will begin experiencing an arrhythmia that my transplanted heart was statistically more prone to than a healthy native heart was. I will clench my chest, fall over, and die. Someone will find me in a few minutes. They will try to save me. But, according to national prehospital data, I will likely be dead upon arrival to the ER.

Life is finite

I can spend hours upon hours meticulously punching in the numbers, searching the resources in our medical libraries, asking the cardiologists and the epidemiologists—what exactly is my prognosis?

Or I can take the time to breathe. To live. To laugh. To cry. To love.

To write my thoughts out and think about the beauty of life, the irony and the mystery of this thing that I’ve been given (twice actually, technically).

To smile. To be grateful. To be happy. To be angry.

To feel.

To remember that, for all of us—not just for me—life is finite.

The scientific values and prognostic indicators and the what-if’s and why-not’s don’t change this one thing that we all have to remind ourselves (unfortunately) more often than we should:

that, ultimately,

life

is

finite.

Related reading:

Lung transplants: What primary care physicians need to know

DO student donates kidney so his fiancee can receive one

Write for The DO: The DO is seeking essays and opinion pieces written by DOs, medical students and health care professionals who embrace the patient-centered philosophy of care. Learn more about how to submit here.

16 comments

  1. Your prognosis is your outlook. Great written piece. Enjoy every moment every breath holding onto your future. It’s so promising. Blessings.

  2. Hello,
    I just wanted to encourage you. My brother had a heart transplant at age 45. That was
    21 years ago. He is still enjoying life. Take care of yourself and enjoy.

  3. Dear Dr. Gragossian-
    You’re awesome and have a great attitude. Keep on living your life to it fullest, don’t ever be a coward, boring or cheap.
    Best wishes from a fellow EM doc and native Philadelphian.
    Mark Melrose, DO

  4. Alin:

    That was beautifully written. I will pray that you continue to touch lives with your story as I was touched. You are a survivor. We only have the moment so live it well. Feel the moment

  5. I enjoyed this, excellent thoughts. Your prognosis is indeed your own. The record for longevity will certainly be broken in the future. There’s no reason it couldn’t be you! Diet and exercise still work. :)

    1. I agree, specifically Lifestyle Medicine is critical. I started to comment to Alin something in that regard, yesterday – but held off. Would love to see the two of you at this year’s annual meeting of the American College of Lifestyle Medicine.

      1. Dear Dr. Gragossian,
        Thank you for your sharing of your remarkable transplant and post operative life experience. I especially appreciated your candid and unique writing style and way with words. As a survivor of a jet crash, I and many of our crew have elected to do two things: Appreciate life more, our slogan is Life is Good! and we celebrate each anniversary of the incident as a second birthday. Reminds us of the gift of one more day we all were granted. All the best in your future health, endeavors, and life.

  6. Great piece. Thank you for sharing. May I ask what genetic condition you have? Also, beautiful name and wondering how it’s pronounced.

  7. I’ve lived most of my life with a “terminal disease”. My PCP tells me I’m 15 years past my expiration date and don’t start to read any long novels. Meanwhile, I’m having fun. Started 4 new businesses in 2018 and keep on trucking and having a ball.
    The concession I’ve made to my mortality is in actually planning for things to continue after I’m gone. I’ve taken on and mentored younger partners who, hopefully, can keep the projects growing after I’m gone. My wife will be fine and is deeply involved with the businesses.
    So my advice to the good doctor is to understand and accept your mortality, take it into account with your planning, but don’t let it define you or hold you back. Life is a ball. Enjoy every day.

  8. Good for you! You should pat yourself on the back for living by your current philosophy of life. At times it takes a major event ( heart transplant in your case) to make one stop and truly consider what they want their destiny to be. “ Be healthy, be wealthy” was a toast that an acquaintance used to say each time. Just take good take good care of yourself,which you’re doing, and continue to enjoy life. Pursue your career goals and ,as someone suggested above, don’t let your illness define you. You’re no good to yourself or anyone else if you allow your health to deteriorate. As physicians we see this every day. All the best to you.

  9. I love you and your attitude. It sometimes takes a crisis for people to think about their life and what they can accomplish. I thank god for watching over me. religion and prayer help.
    Kudo’s to you.

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