A lifesaving heart and lung transplant could be the only option left for a young Queensland law student born with multiple heart defects, and never expected to survive beyond the age of two.
Mater Private Hospital Brisbane patient Ksenia Borodin celebrates every day like it could be her last, as she awaits a phone call to find out her eligibility.
“The doctors at Mater have done everything to keep me alive for this long,” Miss Borodin said.
“I am in and out of hospital a lot and doctors are considering if a double transplant is something I can even do. My heart is failing. I am dying–a transplant is my only option right now,” she said.
The 22-year-old is shining the spotlight on heart health during National Heart Week, to inspire others not to give up hope.
Miss Borodin was born with a hole in the wall between her heart's upper chambers as well as an abnormal connection between the lower chambers and an inability to produce normal blood flow through the heart.
“No one can visibly see how sick I am, so no one knows about my heart defects.”
She suffers pulmonary hypertension which causes shortness of breath. Often turning blue from low oxygen levels, Miss Borodin had to leave high school halfway through Year 10 due to major surgery.
“I was dying and had to have my colon removed due to ulcerative colitis,” she said.
Her condition was detected at 18 months old after her parents became concerned that she wasn’t eating or walking, and she had surgery soon after.
“Doctors told my parents I would be dead by the age of two as the heart operation they needed to perform only had an estimated 30 per cent success rate.”
Having to deal with her own mortality from a young age, Miss Borodin said she hopes she lives long enough to meet sister Rebecca’s baby, due in a few months, and to be around to become a godmother again.
Mater provides care for about 650 patients with Adult Congenital Heart Disease (ACHD) each year, which affects people aged 16 and over living with a heart defect acquired during foetal development.
Adult Cardiology Clinical Nurse Consultant Wendy Senior said survival rates for people with congenital heart disease had improved dramatically over time with most patients now reaching adulthood.
“For the first time adults living with ACHD outnumber children with the disease, meaning we must now look beyond childhood and consider whole of life care,” Ms Senior said.
“Patients with ACHD require care that is lifelong, holistic and both person- and family-centred.”
Miss Borodin said the emotional rollercoaster of staying alive had taken its toll, but she’s started talking about her condition more, and documenting things on Instagram.
“If my journey can help one person out there, then that’s great.”