'My brother gave me his kidney,' A story of pain, sibling love and hope

"I call it my bean-shaped friend," Lucy Johnson says with a laugh, more thankful than ever that she has a second chance at life.

Now 34 years old, Lucy has spent nearly nine years of her life on and off dialysis due to kidney challenges.

However, after three years of post-operative treatment and a successful kidney transplant, she is beginning a new chapter.

Lucy’s journey with kidney disease was not an easy one. The repeated visits to different hospitals, the constant struggle for proper treatment, and the emotional toll it took made for a challenging and exhausting experience.

She recalls how, back then, her care would take a toll on both her family and herself. It often felt like everything was getting worse before she could finally receive the right care, leaving them feeling hopeless.

“Post-kidney transplant patients, especially those like me, have to stay diligent. The journey doesn’t end after the transplant, but the feeling of finally being on the other side of dialysis is indescribable,” she explains.

Her health journey began in 2003 when she was just in Class 3.

“I started feeling unwell and was treated for rheumatic fever, a heart condition commonly found in children, and later diagnosed with hypertension instead of kidney issues,” she recalls.

For much of her childhood, Lucy was misdiagnosed, often being treated for conditions that didn’t address the root cause of her illness.

Living in a rural area, with limited access to healthcare, she trusted that once her symptoms were treated, she was well. Unfortunately, the underlying kidney issues were overlooked.

Fast forward to 2012, she got married and became pregnant with her first child. Sadly, she lost the pregnancy the following year (2013) as her condition worsened, and doctors were forced to choose between saving her life or that of her child.

It was during this time that doctors at PGH properly diagnosed her with kidney failure after it was discovered that her arteries were severely compromised due to inflammation, and immediately started her on dialysis.

“If only this had been seen earlier, perhaps this wouldn’t have been the journey I had to go through,” Lucy notes.

In July 2021, after years of waiting, Lucy received a kidney transplant from her younger brother. Her brother, who had been unaware of her condition, learned about Lucy’s illness only when he was older.

His willingness to become a living donor provided Lucy with a new lease on life and she’s forever grateful for his selflessness.

Since the transplant, Lucy has gone from weighing just 38 kgs to a healthier 54 kgs. Her brother remains her best friend, checking in on her regularly to make sure she’s doing well, fondly asking, “How’s your little ‘kakitu’ doing?”

Now, Lucy is passionate about helping others facing similar struggles.

Before her illness, she worked as an accountant, and while she now works from time to time in the field, her passion lies in helping renal patients. She has shifted her focus from past struggles to the present, working as a counsellor for renal patients.

Lucy guides them through their journey, encouraging dialysis patients to stick to their treatment plans and reminding them that their journey is personal, not anyone else’s. “Don’t give up,” she says. “Have compassion for yourself and take care of yourself.”