how a heart transplant turned one woman into a vocal advocate for organ donation
8 minute read
rita spiteri, a heart transplant recipient, uses her voice and story to help spread awareness in the hopes of saving many more lives through organ donations.
andrew downs
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rita spiteri, a former flight attendant, wife and mother of three in toronto, was an avid runner and very active. whether she was in paris for work or at home, she would run or go to the gym to keep her physical health in tip-top shape.
about two decades ago, she started experiencing loss of strength on her left side while running, to the point of dropping her portable walkman, tripping, or even falling off the treadmill.
she went to see her family doctor, who referred her to a specialist because her symptoms were giving red flags of cardiomyopathy, and was immediately told to give up her career. the tests she was given at the hospital didn’t turn up with anything conclusive, and she was told her symptoms stemmed from anxiety.
she went back to work and continued with her active lifestyle, but the issue didn’t stop there.
“if i was running, i’d have to stop because i was out of breath. one day in paris, i fell down the stairs, and security guards had to come to my aid to help get me up,” she said. “and then it happened at home, and when i was at the gym.”
the gym attendant wanted to call an ambulance, but because she was told it was anxiety, spiteri objected, saying that all she needed was a little fresh air.
“in the past, that’s all that would bring me back, just to have some cool air on my face,” she said. “so i was getting coolness on my face and just getting fresh air. i drove home from good life gym and collapsed in the front foyer of my house.”
her husband, who had been out grocery shopping, found her on the floor and immediately called 911. that led to her finally being given a proper diagnosis and her journey toward a heart transplant.
a cardiomyopathy diagnosis that changed everything
spiteri was given many tests to see what was going on with her heart, including a heart monitor that would catch any issues and send it directly to the hospital in real-time, similar to a fax machine. one day while gardening, she had another collapse, and by the time she crawled inside, her doctors were already ringing her phone to tell her that she needed to come in immediately because her heart was stopping.
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she had arrhythmogenic right ventricular cardiomyopathy (arvc), a rare and progressive genetic heart disease caused by fatty and fibrous tissue replacing healthy heart muscle.
she was given a defibrillator to see if that would work, but because her heart muscle was so weak, it kept shifting and coming out of her heart, leading to the leads in the machine poking holes in her lungs. this happened three times before they tried using smaller, child-sized leads to fix the issue. however, it still wasn’t working well enough.
“i was at the function of the [edmonton oilers] arena opening and st. john ambulance was there, and i was dancing, and i started not feeling good and really lightheaded, so i walked over to my husband, and i collapsed in his arms,” she said.
she was “zapped” by her defibrillator to get her heart working again. the first zap didn’t work, so they had to try another before she came to. her husband drove her back to toronto general hospital, where she was receiving care, and she was given a different type of defibrillator to try. her heart only became weaker.
“a year later … i was so weak i couldn’t even walk to the car without going into cardiac arrest. i was at 11 per cent [heart function] when i went in to the hospital,” she said of her experience leading up to being put on the heart transplant list. “i needed a transplant. i wasn’t going to survive. they said i would be lucky to survive christmas.”
getting on the heart transplant list
after being put on the transplant list, organs came, and they went, with many not being a match for one reason or another, many attributed to her rare o-positive blood type. during that time, she was even taken off the list temporarily because she had a stroke due to her heart’s inability to function properly, leading to two clots forming in her brain.
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however, a year after she was put on the transplant list, a perfect match came, and she had her life-saving heart transplant at toronto’s peter munk cardiac centre at united health network (uhn).
during that period, she had to undergo numerous tests and psychological evaluations to ensure she was a candidate.
“if you don’t pass the psychiatric evaluation, you don’t go on the heart transplant list. you have to be mentally stable and strong enough to do it,” she said. “they do pet scans of your entire body to make sure there’s no cancer.”
they evaluated everything to ensure that spiteri could handle the trauma of the entire ordeal, both physically and mentally. she also grappled with the fear of either dying or living with someone else’s heart in her chest.
“they would mention the word transplant, and i was uncontrollably emotional,” she said. “i was afraid after the transplant, i wouldn’t be me any longer. my heart was gone. i couldn’t love the same. i wouldn’t be the same person.”
she and her family rented a cottage as a last getaway in case things didn’t work out positively for spiteri, and during that time, she was “just beyond herself,” because of having to make end-of-life decisions while other, happier plans were also in front of her.
“we were planning weddings. we were planning baby showers. we were planning so much in life. my life was still just in front of me, and i couldn’t make decisions. i couldn’t make plans. the plans i had to make were getting a funeral plot, updating my will, writing letters to my kids that i wanted them to know how i felt.”
spiteri said that she couldn’t complete the letter to her husband because she “just couldn’t get there” through all the grief.
“it’s a hard journey emotionally, and i get why there’s so much psychiatric evaluation to go through it all,” she said.
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in the end, spiteri got her transplant. afterward, her doctor, whom she had been referred to at toronto general hospital after a chance meeting with a professor of cardiomyopathy on one of her flights, after she was dismissed with anxiety and finally caught her diagnosis, came into the room and told her she “only had half an inch to live.”
“the biggest heart that he had transplanted was from a marathon runner. i was the second biggest. my heart was the size of a cantaloupe,” she said. they had to move fast, too, because she went into cardiac arrest five times while on the operating table.
learning her condition didn’t just affect her
dealing with having arvc affected spiteri immensely, but it wasn’t just her who was given the diagnosis. spiteri and her family found out that seven other family members also have the rare genetic condition.
shortly after the transplant, her son went into cardiac arrest while playing hockey before being diagnosed, and that same march, her sister passed away from the condition.
“we hadn’t even planned the funeral yet before now dealing with this, too, so the impact it’s had on my family, it’s really serious,” she said.
since going through her transplant and seeing her family deal with the condition, too, spiteri has become very vocal about her story.
“i just thought for so long, it was just my story. it was just my life. it wasn’t a big deal. it was just my life,” she said, noting that she now spreads awareness about arvc wherever and whenever she can because she was first dismissed with anxiety, and if she hadn’t of been, it would have been caught sooner.
“sometimes it’s not anxiety. sometimes it’s not just you. if there’s something wrong with you, you have to get tested. you have to get your family history done. it’s so important because had matthew [her son] not had that defibrillator [when he went into cardiac arrest] he would have 100 per cent died,” she said. “he was at the right place at the right time. my whole journey in life is being in the right place at the right time.”
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giving back after a heart transplant
now that spiteri is regaining her health, she is using her voice, story, and time to give back. she’s currently a volunteer with ontario’s division of the canadian transplant association. working with the patient advisory committee, she hopes to enact real change in organ donation that not only helps people who need them but also supports people following the operation.
“one that’s really important to me is mental care. i now suffer from ptsd [post-traumatic stress disorder], as well as lots of other people in our group,” she said. “but that’s not covered by our health benefits.”
she notes that many others, such as those living with post-partum depression or anxiety and cancer patients, receive that level of care, but there’s a gap for people who have undergone organ transplants because they have to pay out of pocket, which isn’t always easy after such a major surgery.
“i’ve been seeing a therapist since february of last year, every two weeks, to try to get through my ptsd, try to get through my anxiety. in the beginning, i felt like my anxiety was more grief that someone had to die for me to live. although i’m grateful, i feel i was mourning their passing just after the heart transplant,” she said.
she also takes part in we walk uhnited, a newly established annual charity walk organized by uhn in may of 2025 to raise funds for research, innovation, and access to patient care. the walk is a 5km route with a 2km accessible route, and it finishes with the we walk uhnited block party. this year showcased many activities for families, community ambassador appearances, and performances from kardinal offishall, dwayne gretzky and other celebrities.
“i’m just trying to advocate and give back to the hospital, uhn. they saved my life,” she said. “they never gave up on me.”
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“i’m so blessed that i came into the people that i needed help from and that uhn took me on as a patient, gave me hope, gave me innovation, never lost hope, just kept doing tests until they came up with a diagnosis,” she said. “i wanted to survive to have more life with my family, that meant the world, and uhn gave me that … i feel now that this [advocacy] is my purpose to be the voice that i thought i didn’t have that i now have, just making awareness, and if i reach one person and get them to sign their donor card, i’ve done by duty.”
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