Source: Best Health magazine, January/February 2016
Best Health: What was life like before it was interrupted by heart disease?
Donna Hart: I was active. I ate well and exercised on a regular basis. In July 2014, I went with my cousin and her friends on a five-day backcountry kayaking trip around Broken Group Islands National Park. Later that season, my husband and I travelled to a backcountry lodge in Jasper National Park. That trip included a bike trip from the Bow River up to Lake Louise (Hart, pictured above). We felt unstoppable.
Then, in December, I went for my annual physical. I was out of breath walking up a flight of stairs and thought I just needed a puffer. Instead, I found myself in cardiac intensive care at Trillium Health Centre with a diagnosis of myocarditis: Only 30 percent of my heart was working. I left the hospital on New Year’s Eve but was back in intensive care just three weeks later. I was on heart medications and my heart was failing. By now, only 13 percent of my heart was working.
BH: This all seemed to happen so quickly.
DH: Yes. Prior to all this, I had an app on my tablet that measured pulse. When I saw that my pulse was 145, I assumed that the app wasn’t working. I never felt my heart racing, even when it was up to 173 beats per minute.
BH: Wow. So what happened next?
DH: When I was readmitted to Trillium, I was also diagnosed with ventricular tachycardia and developed congestive heart failure. I was failing quickly and moved to Toronto General Hospital’s cardiac intensive care. On the second day there, they talked to us about a heart transplant.
I had a heart biopsy, which confirmed that I had giant cell myocarditis. There is no cure for giant cell myocarditis; the only treatment is a heart transplant. So that’s when I was placed on the transplant list ‘ it was early February. Patients aren’t listed for heart transplants until they’re in the end stages of heart failure and a heart transplant is the only option.
BH: Did you know how long you’d have to wait for a heart?
DH: Yes. When I was listed for a heart transplant in early February, I was told to expect that the wait would be two years. In February, I was given an implantable cardioverter defibrillator and sent home a day later. I was on medications to help control the ventricular tachycardia and giant cell myocarditis. My cardiac symptoms were monitored at a clinic called the Heart Failure Outpatient Clinic.
In March, I was given a device that monitored my blood pressure, pulse, blood oxygen level and weight on a daily basis and sent the results to a nurse via email. The day my pulse was 103 and my blood pressure was 75/34, I was readmitted to cardiac intensive care. The ventricular tachycardia was no longer being adequately controlled by the medication.
This time, I was told that I was unable to leave until a new heart was found for me. By now, my wait time for a new heart was estimated at around six months. My kidneys were starting to fail because they weren’t receiving enough oxygenated blood. They talked to me and my family about the possibility of inserting a mechanical heart.
BH: What was the wait like?
DH: My blood was tested for kidney failure every day. The results of this test determined whether I would need a mechanical heart ‘ this was very stressful. Several times, the doctors came in with the news that they weren’t happy with my kidney function [unstable creatinine levels]. I began to develop thyroid problems, along with an ongoing problem of low magnesium levels. A mechanical heart would mean that I would wait in cardiac intensive care until a new heart was found. This was less stressful for my family because they hoped that if I had a mechanical heart, I would live.
BH: How long did the wait go on before you received your transplant?
DH: It was a while. By May 10 ‘ Mother’s Day ‘ I was still waiting. I remember thinking that, despite my best efforts, I wasn’t going to win this heart disease battle. Then, first thing on May 11, one of my doctors came into my room and said, ‘Your heart has come in.’
I notified the key players in my life: my sister, Sue, my husband, Barry, and my children. Barry decided that we shouldn’t tell anyone to avoid jinxing it. At some point, Sue came to see me and we packed up almost all of my stuff.
At 10 a.m., I was called down to do a chest X-ray. I was in the waiting area when I was told that the chest X-ray was cancelled and wheeled back to my room. I thought to myself, ‘The deal is off,’ but then my nurse explained that the chest X-ray was cancelled only because the transplant team would take their own.
At 5:30 p.m., I sent this email to my family: ‘They are taking me to the operation room in half an hour. I’m in the home stretch. This is what I have trained for my whole life.’
My sister replied, ‘Show them what you’re made of!’
My daughter replied, ‘No longer a bride in waiting. You are ready for this!’
Around 6 p.m., I was moved up to the cardiac intensive care surgical unit and prepped. As they wheeled me into surgery, I said to them, ‘This is a good time for me. I am ready for this.’
With real estate and employment, your first offer is your best offer, as it is for heart transplants as well. I was ready. In the operating room, I looked at a large machine to my left; I asked if it was the heart-lung machine. They said, ‘Yes.’ I thought to myself, This machine will keep me alive. It’s the last thing I remember.
BH: Wow. That’s powerful stuff. Can you articulate what it’s like to have someone else’s heart?
DH: The first weeks after the transplant were very emotional. I was extremely grateful to be given a second chance at life. I was also extremely sad to know that this gift of life for me came at the cost of someone else’s life.
Prior to my surgery, while I was waiting in intensive care, I knew a heart was coming. I thought about a family standing around a loved one and saying goodbye. I know that pain, and I was very sorry for their loss. I was sad but also relieved that my wait was over, as I knew I wouldn’t make it much longer.
Physically, it is wonderful to feel a heart beating in my body. Before I had known anything was wrong, I noticed that I hadn’t felt my heart beating in a while, which I found strange at the time. After my transplant, my sister asked me what we should call my new heart. I told her ‘Mine’ ’ I wasn’t giving it back.
BH: Has your life returned to normal, or a new normal?
DH: Now, on a typical day, I get up and complete a normal morning routine. In the morning, before 11 a.m., I try to get outside and do some sort of exercise. I stay in the house when the sun is most intense. I tire quite easily and am out of breath walking up a flight of stairs. I am getting stronger each day, but I’m not back to where I was in November 2014. Every two weeks, I have a heart biopsy at Toronto General Hospital and meet with a team of cardiologists and a nurse practitioner. Most of the side effects from my medications are managed to the extent that I can have some normalcy in my life.
UPDATE: Just prior to publication, we checked in with Hart for a progress report. Here’s what she had to say: ‘I am much stronger now, out doing more things. I feel wonderful ‘ really wonderful.’
BH: What is the one thing you’d like people to know about your ordeal?
DH: Organ donation saves lives. Without the generous gift from a family who was able to see past their grief, I wouldn’t be alive today. Words can’t express the gratitude I feel, but I am eternally grateful.
Make the Pledge
Many of us have good intentions about becoming donors. In fact, 90 percent of Canadians support organ and tissue donation, but less than 25 percent ever make plans to donate, according to the Canadian Transplant Society (CTS).
In the meantime, more than 1,600 Canadians are added to organ waitlists annually.
This is one area of medicine that we all have the power to change. While Canada doesn’t have a national registry, most provinces and territories have programs that allow you to pledge your organs after death.
If you’re interested in getting more information or becoming a donor, the CTS can help. On its home page is a Pledge button that will redirect you to your province or territory. From there, you’ll be directed to a Consent Registration Form that will get your name and your intentions into the system. For more information, visit cantransplant.ca.