"I am going to do anything and everything I can, until I can't."
Aisha Islam's new mantra was adopted out of both necessity and will.
On May 1, exactly one year to the date of her heart transplant, the 33-year-old Torontonian and native of Pakistan, soared out a plane from 14,000 feet above, on a pristine spring day near Niagara Falls.
With the wind at her back and perhaps a prayer, Aisha lived her mantra with a personal first.
"I have always been an adrenalin junkie," she says. "I always wanted to skydive.
"I had decided that on my first-year anniversary, I would do it. There was no fear at all."
With no previous experience except bungee jumping, Aisha is now setting her sights on the next fear-defying thrill – walking around the edge of the CN Tower, or over hot coals. She hasn't yet decided.
"I don't know how to top this," she says of the skydive, her smile pouring through each word.
Her medical team at the Peter Munk Cardiac Centre (PMCC), and various units across UHN, would likely tell you Aisha has already topped it – by beating the odds, navigating a mountain of obstacles and other demons to survive.
Complex cardiac case
During her 20s, the business analyst at Scotiabank was found to have an arrhythmia (irregular heartbeat). It was never treated but "kept under control," she says.
Then, in mid-2016, she began to feel seriously unwell, with laboured breathing and swelling in both her legs and abdomen. Googling symptoms indicated congestive heart failure.
In August 2016, she was diagnosed with dilated cardiomyopathy – an enlarged and declining main pumping chamber or left ventricle – depriving Aisha's heart from pumping blood normally.
She underwent an ablation (procedure to destroy tissue in the heart that causes an abnormal heart rhythm) and subsequent cardioversion (procedure that jolts the heart back to a normal rhythm through electric shocks) at Sunnybrook Health Sciences Centre, before being transferred to PMCC.
As her health continued to rapidly deteriorate, Aisha's mother suffered her second stroke at age 56, slipped into a vegetative state, and passed away in December 2016.
Gripped by grief, the young patient's harrowing medical journey became more complex.
She went into cardiogenic shock (sudden inability of the heart to pump enough blood to the body), experienced multi-organ failure; spent two weeks in the coronary intensive care unit – part of that on life-support through extracorporeal membrane oxygenation (ECMO), a technique which provides extended cardiac and respiratory support when the heart and lungs are not able to function normally.
Finally, she was told only one option remained. She needed a new, donor heart.
For six days, her name was placed on the waiting list for a heart transplant.
Reversal of fortune
Finding herself in a severely weakened state, Aisha was turned down for surgery before her string of misfortune began to change.
That reversal of fortune was aided in part by what happened one day in the Coronary Intensive Care Unit (CICU), where some of Canada's most ill cardiac patients are treated.
"His hand was the one thing I saw and it was immediately comforting to me," says Aisha, recalling that moment with clear precision. "I call him my guardian angel."
He is Dr. Juglans Alvarez, one of two cardiac surgeons at PMCC who decided to proceed with Aisha's particularly challenging operation. The other, was his colleague, Dr. Terrence Yau.
"I never lost hope, but was aware that we were dealing with a very high-risk case," says Dr. Alvarez, a Cardiac Surgery Fellow from Brazil, who recently became a staff surgeon at UHN.
"From a subjective and personal perspective, we can call it a gut feeling (I prefer to call it a heart feeling). I read in her eyes that she wanted it and would be able to make it."
Aisha says, he voice lifting, that, "Dr. Alvarez believed in me more than I believed in myself.
"He came to see me every day while I was on ECMO for two weeks. He also visited me in the psych ward," which was part of the next chapter in her medical journey.
Aisha remembers being told, "They want you to fight." She responded, "Okay. I will."
Fierce fight to the finish
For his part, Dr. Alvarez says he was struck by several factors: "her young age, Aisha and her family's willingness to survive, and the acknowledgement of previous PMCC team achievements in similar, difficult cases."
A new, donor heart in place and discharged home, Aisha suddenly faced a new round of challenges last fall. She "felt down," culminating in treatment at Toronto Western Hospital's Neuropsychology Department and six weeks in the psychiatric ward of Toronto General Hospital – battling depression and obsessive compulsive disorder.
"I really wanted to die," she recalls. "Being in the psych ward was life-altering. I was scared at first and then found out how marvellous the people there were. They just don't have the coping mechanisms."
Coping is something Aisha knows a lot about. Her dogged determination persists, even following the latest diagnosis – muscular dystrophy – which she learned of after her stay in the psych ward.
Aisha's goal now is to make a meaningful impact on patients in the psychiatric ward, for which she has a long list of ideas including the addition of music and activities to better advertise the one-on-one sessions that are provided to patients.
Through it all, one guiding thought steers her belief and actions. It is also the impetus for her mantra.
"Whatever I do, I have to protect this heart," Aisha says.
Aisha Islam’s Medical Timeline
Aug. – Cardiomyopathy diagnosis
Nov. – Ablation procedure at Sunnybrook Hospital
Dec. – Mom passes away
Mar/Apr – Cardiac resynchronization suggested at PMCC
Apr – Coronary Intensive Care Unit (CICU) for 3 days with multi-organ failure
Apr – Medical-Surgical Intensive Care Unit on ECMO
May 1 – Heart transplant procedure
May 29 – Discharged from hospital after stays in CICU and Transplant Ward
Jan/Feb – Neuropsychology unit at Toronto Western Hospital
Jan/Feb – Psychiatric ward inpatient at Toronto General for six weeks
Mar – Muscular dystrophy diagnosis
May 1 – Skydives to mark the first anniversary of heart transplant surgery
July – Planned return to work