Heart-transplant patient looks back on long journey

Brian Cassella/Chicago Tribune/MCT More than two months after his heart transplant, Steven Ross Johnson and his wife, Jill Johnson, relax in the backyard of their Logan Square home in Chicago.

CHICAGO — It was 4:30 a.m. on a Monday three months ago when I got the call to come to Northwestern Memorial Hospital: A heart had become available. I remember the exact time because I was already wide awake working on a story that was due later that day.

I could barely make out the words the nurse was telling me over the phone. I felt as though I was outside of myself watching the whole scene unfold.

My wife, Jill, just happened to wake up and make her nightly trip to the bathroom when she saw me on the phone with a stunned look on my face.

“What is it?” she said. “That was the hospital,” I responded. “It’s time.”

Her eyes widened. “You mean they have it?”

“They got it,” I said. Up until that time, it was easier to think of the heart as an object or a thing that I was receiving.

It wasn’t until the car ride to the hospital that I really began to think about what was about to happen. I felt as if I was coming to the end of a long journey, a journey that began for me almost a decade ago and has since changed my life in ways I could not have imagined.

The diagnosis To say it came as a shock the day nine years ago when I was diagnosed with a heart condition would be an understatement. But then again, given the circumstances in which I was told, I guess it shouldn’t have been too much of a surprise.

I was celebrating my 30th birthday in the intensive care unit of the hospital after trying to soldier through what I thought was a nasty virus but what ended up being a severe case of pneumonia.

“We discovered an abnormality with your heart,” the doctor said. “Your heart is pumping blood at about half the rate it should.”

It was the first time that I heard the technical term for my diagnosis: dilated cardiomyopathy, or a weakening of the heart muscle that makes it unable to pump blood at a normal rate.

For a time, it was fairly easy to ignore what was coming. I went to graduate school, interned overseas and got a job for several years as a reporter. It was not until last summer when my health took a very rapid turn for the worse.

At the time, I was working from home as a freelance writer and had just finished a phone interview when I felt extremely light-headed and heard a crackling sound coming from my lungs. I knew I was in trouble, but I ignored the increasing pains in my chest and my uncontrollable coughing and took myself to bed for some rest.

I made it to the hospital in the middle of July, breathing heavily and barely able to tell the physicians what I was experiencing. Despite the severity, I still held on to the belief that a simple visit to emergency room hooked up to an oxygen tank for a couple of hours was all I would need.

I spent the next couple of weeks being closely monitored in the intensive care unit. My wife and family came to visit often. This broke up the boredom for a few hours but also left me with an overwhelming sense of guilt once they left.

The preparation A team of doctors had been preparing me for a heart transplant since 2008 because the function of my own heart had deteriorated far past the point where medications or therapies could help.

I had several things in my favor that made me likely to receive a heart quicker than most. For one, I was 38, which meant I had a better chance of surviving the surgery and that I more likely would be strong enough to recover. Also, with my blood type being AB-positive, it made me a universal candidate who could take an organ from any other blood type.

The doctors assured me that for these reasons, I would get a heart quickly. I started feeling more at ease with the idea of getting a new heart. I started to believe life would go back to the way it used to be close to a decade ago.

Of course, that was just the latest in a long list of delusions I had about my situation. It turned out I was too sick to receive a heart right away. I would first need what is called a ventricular assist device, or VAD, implanted to help my heart pump blood so that my body could get well enough to have a better chance of accepting a new heart.

A few months after surgery to implant the VAD, my strength had built back up and I was getting around a little more easily. But emotionally, I had no desire to get around, as I spent my days lying in bed feeling like I was in some sort of limbo.

I became depressed. I was embarrassed to go out in public and stayed indoors as much as possible. Even though I had been medically cleared to begin working again, I had lost all desire to write. I told myself that I would simply wait it out until the new heart arrived, and then I could pick up in life where I had left off.

Arriving at the hospital Jan. 23 to get a new heart was a bit of a letdown compared with the scenario that had played over and over in my head, a scenario that was no doubt the result of years of watching TV medical dramas.

There was no mad rush to get me into an operating room. Instead, a very patient nurse calmly led me to a hospital bed, where I fell asleep for hours until I was wheeled off to surgery.

About seven hours later, I awoke and it was done, finally done. Out of instinct, I immediately reached for my left side to search for my VAD battery bag, but it was no longer there.

Neither was the soft humming sound that came from my implanted pump in place of an actual heart beat. After so many months, I could finally again hear a thumping coming from my chest.

New life It has now been nearly two months since my surgery, and as anyone who has ever gone through this experience can attest, there are major changes to get used to.

First, I will remain dependent on drugs — a lot of drugs — for the rest of my life. Those drugs have some serious side effects, such as causing the body’s immune system to be suppressed. It means that the slightest hint of a cold or virus must get checked out at the hospital.

Second, throughout the first year after the surgery, I will be constantly monitored, undergoing regular biopsies to make sure my body doesn’t reject the new heart. It turns out a majority of heart transplant patients have some form of rejection within the first few months after surgery, with varying degrees, of course.

Third, the new heart has a life span of its own. I have about 20 years, if I’m lucky, before I will need to undergo another transplant.

Finally, open-heart surgery is a traumatic event for the body, taking up to a year before a person has fully recovered. Despite all I have been through, I am finding this current problem one of the most difficult to deal with, and as a result, my family has to remind me constantly not to do too much too fast.

These days, it feels like my life is a tale of two ends of the emotional spectrum. There are days when I am so elated and full of exuberance that it would rival Mary Poppins. Other days are melancholy, which fills me with guilt. As much as I tell myself I have absolutely no right to feel anything but happy and grateful for the rest of my life, I occasionally feel sad and angry.

But I have come to realize that feeling bad at times is OK. After all, it’s all part of life.

I can’t seem to quell my desire to make up for lost time. Thanks to the selfless act of an organ donor, I will never meet, I now have the time to learn how to savor every second of the rest of my life.