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Heather MacInnis couldn’t have been happier to receive her new lungs. The 26 year old wasn’t expected to live past six years old, because she has cystic fibrosis.
Things took a turn for the worse when she flew home from Toronto, after her double-lung transplant. Within a day, she was back at her doctor’s. The STU student found out she had a lung infection, and a couple weeks later she flew back to Toronto.
“I went up by myself because as much as my family thought I should have somebody with me, only pieces of these travel expenses are covered, and very little is covered for a support person. So I decided I needed to do this on my own,” MacInnis said in an email.
After a week a tests, they told her she had widespread infection, cellular rejection and potentially anti-body rejection. The doctors said she needed to receive treatment right away, which meant she ended up waiting four days for a hospital bed.
She spent three weeks in treatment, but she still wasn’t well enough to go home. Uncertain of how long she would be there, she asked her mom to come to Toronto. MacInnis said this was only possible because of the New Brunswick Lung Association and a private donor.
“The New Brunswick Lung Association helps a lot of people, not just cystic fibrosis patients, and have been a big help to me. In the future I’d like to have more time to volunteer or possibly even start a career with them, so that I can dedicate as much time as possible to raising awareness about a disease that has greatly affected my life.”
MacInnis started an IV steroid treatment, and waited to find out the results. Meanwhile, her brother was preparing to get married. The doctors let her go home to New Brunswick for the wedding, which they had previously postponed for her.
“Being at my brother’s wedding meant a lot to me. My big brother has always been my fiercest protector, and during my transplant he spent a lot of time and money flying back and forth to see me.”
When she returned to Toronto a bronchoscopy discovered her infection had healed. Two days later she found out the steroid treatment had fixed the cellular rejection. This meant the anti-body rejection was causing her suffering.
They started using two medications, thymoglobulin and plasmapheresis, last Monday. So far so good. MacInnis was finally given the okay to come home on Sunday. If everything goes as planned, she won’t go back to Toronto for another three months.
MacInnis planned to go to the T-Pin ceremony, and Shinerama at STU and UNB. But at the beginning of September, she was still battling the infection. Now that she’s coming home, she hopes to finish her degree at STU.
“STU has also been an amazingly big help to me throughout my journey with CF and transplant… I could never thank everyone or really convey my gratitude for the support and encouragement I’ve received.”
STU’s Shinerama raised $2,849.63 towards finding a cure for cystic fibrosis.
“Fundraisers like Shinerama are a part of a bigger dream; a dream that someday a diagnosis of cystic fibrosis will not be a death sentence, and people like me will no longer have to attend the funerals of kids, their age or younger, who had to fight everyday for so little time.”
Alison Belyea, learning for success coordinator at STU, says she thinks MacInnis will help and inspire those living with cystic fibrosis. Medicare in New Brunswick only pays for someone to be with MacInnis in Toronto, when she’s not in the hospital, making it expensive for cystic fibrosis patients like her to receive treatment. She wants to change that.
“Even though she walks that line of life and death, she’s living. It’s amazing in that way,” Belyea said.
Aside from finishing her degree this year, MacInnis plans to continue working with Great Strides, Catch a Breath Foundation and the New Brunswick Lung Association. She also will be planning her wedding. Her boyfriend, Sean Campbell, proposed this summer.
“He’s a pretty amazing guy, standing by me when most guys would have ran for the hills long ago. He’s extremely supportive and understanding and has without fail, told me everyday that he loves me and thinks I’m beautiful, no matter how long I’m away for, how many hoses I have coming out of me or how much water I’m retaining.”
MacInnis is thrilled to be finally coming home. When she was in the ICU she refused to be heavily medicated. She says she would rather fight through the pain than be so unaware that she would stop fighting.
“Why did I hold on when I was so sick and in so much pain? Two reasons. My family. I couldn’t do that to them. They have been so strong, fought so hard and have sacrificed so much for me, I knew I couldn’t do that to them. I couldn’t just let go. My handsome and amazing boyfriend…We had already been talking about marriage and I wasn’t going to let anyone marry him but me. In a very real way he helped save my life.”