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Aisha Islam
“This whole illness is just a little part of us. It doesn’t define us,” says Aisha Islam, heart transplant patient at Toronto General Hospital and psychiatry patient at Toronto General and Toronto Western Hospital. (Photo: UHN)

After receiving what she describes as the "greatest gift," a new donor heart, Aisha Islam continued to be challenged by a set of health issues she wasn't expecting - her mental health was deteriorating.

Aisha was a heart transplant patient at Toronto General Hospital (TG) over a year ago, and was the recipient of a successful transplant. Though she had been introduced to the mental health services available to her prior to her surgery, she wasn't expecting how important they would become to her post-surgery.

Seven months later, she found herself back at TG, but this time in the inpatient psychiatry unit in UHN's Centre for Mental Health. Aisha is just one of millions of people who experience mental health issues that are in some way tied to another medical condition.

Traditionally, the approach in the medical world has been to treat the physical medical illness, with mental health challenges often forgotten. UHN's Centre for Mental Health strives to change that narrative, aiming to help all people with mental health issues, including those with complex medical conditions, in collaboration with the other physical medical care they may be receiving.

"Before I had the transplant, my mom was really sick. She was in a vegetative state. So I was going through a little bit of whether I wanted to get a transplant. I was in a bit of denial," Aisha says.

In December 2016, Aisha's mother passed away. Trying to cope with this loss, and knowing she needed to take care of her heart, she reached out to Dr. Susan Abbey, Psychiatrist-in-Chief at UHN's Centre for Mental Health and psychiatrist in the Multi-Organ Transplant Program at TG, asking if there were any heart-friendly anti-depressants.

"I deteriorated so quickly that I didn't actually get a chance to start them," Aisha says. "Just maybe three or four months post-transplant I started to feel down. I thought it maybe had to do with the medications coming down."

Aisha was on prednisone, a common immunosuppressant used post-transplant which weakens the body's immune system to lessen the likeliness of rejecting the transplanted organ. While depression is a common side effect of transplant medications, she wasn't entirely sure this was the sole root of her feelings.

"I've been down before, but this was a completely different feeling," she says. "I had zero hope. There was nothing motivating me to get up in the morning. There was nothing I wanted to do in life. I could imagine the best future for myself and I didn't want it."

Unable to cope with the way she was feeling, she stopped taking her anti-rejection immunosuppressive medications consistently, at times going three days without taking them. She hoped it would somehow help her feel a bit of relief. When it didn't, she found herself at a crossroads: either continue to feel this way, or go talk to someone.

For Aisha, that someone was Joanna Lynch, a psychosocial nurse working in the transplant department at Toronto General. Joanna first met Aisha as part of her care team while she was going through her heart transplant. From day one, Aisha was made aware there was a team she could go to for any mental health support, including psychiatrists, inpatient nurses and specialists.

Joanna is one of the Master's-prepared psychiatric mental health nurses working with the psychosocial transplant program.  She is a part of a larger team in the program, providing support to patients and clinical teams with coordination of mental health care for pre- and post-transplant patients and living donors.

"Really the focus for me is to provide individualized care, so there's not one thing that I do," she says. "It's really based on what each patients' needs are."

Individualized mental health treatment

When Aisha came to Toronto General as a heart-transplant patient in heart failure, the team identified mental health challenges that warranted a full assessment. She was diagnosed with depression and obsessive-compulsive disorder (OCD).

Before Aisha was able to follow-up with the mental health aspect of her care, she was becoming very ill, so ill that she ended up in the Medical Surgical Intensive Care Unit (MSICU).

Having Aisha on her radar, Joanna visited her in the ICU to ensure the mental health challenges she was experiencing were not put on the back burner. She supported Aisha and her care team, ensuring the mental health challenges were not going to interfere with her ability to receive the transplant, and that she received help with these issues post-transplant.

Joanna worked with Aisha on developing coping mechanisms when she was feeling certain emotions. A key component was to build an individualized care and treatment plan that included Aisha's input and addressed all of her challenges.

Joanna helped Aisha enrol in a Mindfulness-Based Stress Reduction program, run by Dr. Susan Abbey and Sarah Greenwood. Then, when Aisha was experiencing a deeper depression, she started to see Dr. Abbey for interpersonal psychotherapy. She also received rapid transcranial magnetic stimulation (rTMS) treatment from Dr. Jonathan Downar, which targeted her depression and mostly her OCD.

Joanna notes just how important it is for those facing mental health issues to talk to someone, especially a healthcare professional they are comfortable with.

"If Aisha didn't feel comfortable talking about how depressed she was, and didn't come to me that day admitting she wasn't taking all of her medications and that she was suicidal – had it not been for that communication, we may not be here talking about this story," Joanna says.

The light at the end of the tunnel 

Hearing in January 2018 Aisha had stopped taking some of her medications prompted Joanna to suggest giving inpatient psychiatry a chance. Joanna says she knew convincing Aisha to try an inpatient setting would not be easy, but took her on a tour regardless so she could see the facilities.

For Aisha this meant embarrassment and shame. But that's what drove her to give her very last option a shot.

"At this point I was like, 'There's nothing to lose. I've hit rock bottom. What's the worst that can happen?' My New Year's resolution was to do everything I can to try to make my life better," she says.

skydiving
To celebrate overcoming a mountain of health obstacles, Aisha chose to mark the first anniversary of her heart transplant by skydiving. (Photo: Courtesy of Aisha Islam)

Aisha remembers feeling uncomfortable and shameful in the first few days on Toronto General's Inpatient Psychiatry unit, but that changed once she started venturing out in the unit and meeting other patients.

"From my room, it looked like everything was wrong. And then I just got to know the other patients, and how remarkable they were as people, and so funny and great, intelligent," she says. "This whole illness is just a little part of us. It doesn't define us."

She says sharing her story with other patients provided support and encouragement and motivated her in her own treatment.

"Hearing their stories gave me hope, that if things are starting to look up for them, they can look up for me too," she says.

Through her experience on the unit, Aisha hopes to find ways to give back and provide her ideas to improve the patient experience, like music programming or more weekend activities involving patients.

Her first step, though, was to get herself well enough to go back to work.

"I said to myself, 'Once you go back to work, and you're actually making money again, who knows, you may be able to help all on your own," Aisha says, who returned to work right on schedule in July 2018.

"It's still there, I just need to figure out how to do it."​

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