Victories and tears: How the heart transplant team holds it together
April 18, 2016
A few years ago, a patient was flown to our ICU after suffering a heart attack on an airplane. His family arrived at the hospital, frantic. His wife, a health care professional, understood the gravity of the situation – that her husband might not make it through the night, and, if he did, he would almost certainly need a heart transplant. Our team never forgets those first hours with a patient in the ICU.
But not every patient is flown to us in critical condition. Often, a patient has had a slow decline in health due to chronic heart failure and is referred to us when their doctor tells them, “There’s nothing else I can do. You need more specialized care than I can provide.”
We care for these patients over months and years as they fight for their lives. They’re with us as they await a transplant, and if they’re fortunate enough to receive a donor heart, we care for them during surgery and recovery.
It’s a long, emotional journey we take together, and it’s not always easy or possible to hold back our emotions and “remain professional.” These aren’t just patients. They’re like our friends.
Losing the battle is never easy
Many patients go on to lead happy, fulfilling lives after transplants, but not all of them survive. Friends ask me, “Mark, how do handle it when your patient dies?”
We’ve had cases in which we’ve battled and exhausted every therapy, and the patient still doesn’t survive. It’s a devastating loss, every time. You have to be aware that not everyone’s going to make it. You have to figure out a way to process that, even though it hurts deeply when it happens.
Transplantation can be a long battle, and we want every patient to survive. But no heart transplant team can win every time. Patients come to us in times of crisis, and we form a very special bond with them and their families. They want to reclaim their lives, and when we can’t give that to them, it’s hard on all of us.
We know how hard these people fight, how hard their families fight, and what the patients mean to their families and friends. Doctors always want to be professional, but we’re also human. The families can tell. There are times when a patient dies despite our team’s best efforts, and tears well up in our eyes – sometimes you just can’t control that.
Dealing with loss is a difficult part of our role as transplant cardiologists, but we also know there will be far more victories. Our team makes sure to share those triumphs with each other, no matter how small they seem. Sage advice I was given many years ago was that if you are in it for the long haul, it’s important not only to learn from your defeats but also to celebrate your victories.
Celebrating the victories
We celebrated a victory with the gentleman who was transferred here after his in-flight heart attack. Fortunately, we stabilized him, and eventually he received a heart transplant. Today he’s enjoying a future none of us was certain he’d have.
It’s humbling how appreciative the patients and families are. Many times when I’m seeing patients in the transplant clinic, they spontaneously offer thanks to our doctors and transplant nurse coordinators for the “gift of life.” They understand they could have died, and now they have the chance to graduate from college, or perhaps fall in love for the first time, or see their kids grow up or their grandchildren be born. When they say they know our team cares about them as a person, not just as a “case” or an “illness,” I know we’ve done our job well.
One of the highlights for me each year is our Transplant Reunion, when we host a special dinner in honor of all our organ transplant recipients. We’re approaching 600 transplants since the heart program began in 1988. As you can imagine, that’s a lot of happy patients and families!
This event is an amazing chance for us to see our patients outside the clinic, enjoying and living their lives. It’s a night of victory that helps us remember why we do what we do. I find that our transplant team gets as much enjoyment out of it as the patients who are being honored.
One of my favorite memories from a reunion a few years back was a recipient who had invited the mother of her donor to the dinner. The mother brought along a shoebox full of remembrances of her daughter, who was a young woman when she died. The donor’s mother and the recipient were close in age and shared the same cultural heritage, and they formed a close bond. When they visit each other, the mother sometimes listens to her daughter’s heart beating inside the recipient’s chest.
The range of emotions at that moment was striking. The mother had suffered the tragic loss of her daughter, whose memories were now captured in a shoebox clutched to her chest, yet at the same time she was filled with pride because her daughter had saved her new friend’s life.
Donors and their families are the real heroes
It’s breathtaking that a family, in the midst of the tragedy of losing a loved one, could have the generosity to donate a part of their loved one’s body to help someone else live. They, along with the donors, are the heroes in the transplant process, no question. It’s an incredible gift they give, and we’re humbled to be part of it.
Registering as an organ donor is a personal decision, but there is a strong misconception I sometimes hear that I want to clear up for people who are on the fence about it. Many people think that if someone is sick enough to be on the transplant list then he or she isn’t going to make it anyway, or that organ donation will merely keep that person alive without a measureable quality of life.
That’s simply untrue for most patients. The majority of outcomes are quite good. Recipients often can resume their regular, active lifestyles with only a few modifications. We took care of a gentleman a few years ago who, just six weeks after his heart transplant, was begging to go back to work!
Most recipients also are able to go back to exercising. Although they probably won’t be able to perform at their pre-heart failure level, the majority of patients absolutely can resume the recreational activities they love. In fact, we host a transplant golf tournament every year, and the recipients who participate can be very competitive!
If a typical heart transplant recipient walked into your house, you couldn’t tell that he or she’d had a transplant. The person would seem totally normal to you.
The transplant process requires a team effort: transplant cardiologists and surgeons, dietitians, nurses, social workers, and many more. We’re just a small part of the process. When I step back and think about it, it’s incredible that we can put new organs into people who are about to die and restore them to a very high quality of life. It’s amazing, and we’re fortunate to be involved in this process.
There are 13,000 Texans on the transplant list waiting for hearts, lungs, livers, kidneys, and other organs. If you’re so inclined, it’s easy to register as an organ donor. You could make an incredible impact on a family in crisis and give another person the gift of life.