Living with Lupus: Gabrielle’s Story

Let’s Talk Lupus: Conversations with Macenzie — Real stories from Canadians living with lupus.

Gabrielle D’Mello shares her experience living with lupus in Canada.

When It All Began

In the summer of 2014, Gabrielle (Gaby) thought she had come down with the flu because of her unexplained body aches, fever, and stiff joints.

But after a month of pushing through with Tylenol and seeing no real improvement, she went to her doctor for further testing. Her bloodwork came back abnormal, and her doctor eventually referred her to a hematologist, concerned that cancer could be a possibility.

At this point, Gaby noticed a change in her physical appearance as well.

“My symptoms went from bad to worse,” says Gaby. “I started to lose a significant amount of hair and weight, and developed mouth sores, psoriasis, my lymph nodes were swollen, and I had persistent high fevers.”

While all of this was happening, Gaby was also dealing with severe joint pain and swelling.

“I could hardly move my body,” she explains.

After about two months of testing and doctors’ appointments, Gaby was diagnosed with lupus. She was not entirely shocked by her diagnosis, as her mother was diagnosed with Discoid Lupus Erythematosus (DLE), a chronic autoimmune skin condition, during Gaby’s teenage years.

“I thought, okay—if it’s like my mom’s, maybe it’ll be manageable. At the time, I didn’t fully grasp the seriousness of this condition.”

Side by side images of Gabrielle D’Mello at different stages of her lupus journey, highlighting the contrast between her health before and during the progression of symptoms while living with lupus.

A Worsening Condition

After being referred to a rheumatologist, Gaby started treatment for her lupus. But after a year of steady care, her condition worsened, with severe swelling in her feet and nausea, alongside brain fog, joint pain, and fatigue.

Gaby admits that during this time, she downplayed the severity of her condition, often convincing herself it was something she could handle, not realizing her symptoms were far more serious than she initially believed.

She noticed swelling in her calves and feet from fluid retention and underwent Albumin and Lasix infusions to remove the excess fluid.

A friend suggested that Gaby have her kidneys examined after a family member experienced a similar issue. After taking her friend’s advice and discussing it with her doctor, she received a kidney biopsy.

While undergoing transfusions, Gaby developed edema, swelling caused by excess fluid trapped in the body’s tissues, as well as a pulmonary embolism and hematoma in her abdomen.

“I developed a blood clot in my lung and kept coughing up blood,” Gaby shares. “Things were so far gone, my body was full of so much fluid that I ended up being admitted to the hospital.”

Gabrielle receiving treatment in hospital during a critical stage of her lupus journey.

“I don’t think the doctor realized how much fluid I was retaining,” Gaby explains. “Even though I was holding onto a lot of fluid, I was still losing weight. I went from 120 pounds to 85.”

None of the doctors, including her primary doctor, was ready to diagnose Gaby with renal failure, even though her body was retaining significant amounts of fluid.

With doctors unable to stabilize her condition, Gaby was then transferred to Mackenzie Health in Richmond Hill, Ontario.

“I credit the doctors at Mackenzie Health for saving my life,” says Gaby, who was immediately prescribed hemodialysis for her kidneys and stationed in the ICU. The doctors also finally diagnosed her with kidney failure and Lupus Nephritis.

“Hemodialysis was very hard on my body, but I got all of the fluid out of me, and I finally started to feel better. I felt so much lighter,” she explains.

Recovery and Rehabilitation

After a couple of months in the hospital, Gaby’s symptoms started to settle, and she was able to continue blood transfusions. The next step in her recovery was learning how to walk again.

She started rehabilitation, where she relearned to walk with the support of a cane. Although she was still quite weak, Gaby chose to return home when her doctors asked if she felt ready.

A Second Chance at Life

Ten years later, Gaby’s health remains stable, although she must constantly monitor and manage her condition. During that time, she faced significant setbacks as her kidney failure and seizures returned.

In 2021, Gaby received life changing news when she was approved for a kidney transplant, made possible by the generosity of an anonymous living donor.

“We were so happy. Getting the transplant call was overwhelming, and seeing the kidney start working right away felt like the best news.”

Following surgery, Gaby began anti rejection medication for her new kidney. Although it initially functioned well, her body soon started to reject it.

“I thought, of course, this would happen to me,” says Gaby.

She was then put on a hemodialysis catheter to provide temporary vascular access and resume dialysis. After some time, her new kidney gradually began to function again.

“I know it might sound strange, but the first time my kidney started producing urine again, and I was able to go by myself, was one of the happiest and most relieving moments of my life.”

Let’s Talk Lupus: Conversations with Macenzie