My Journey with Lupus
At 11 years old I started getting sore joints and chest pain. My joints had swelled up and walking and sitting were very difficult. I was in intense pain all the time.
When I lay down flat I found it hard to breathe.
I ended up in hospital having to get lots of tests and the doctors seemed very sure I had rheumatic fever. But they weren’t convinced it was just rheumatic fever.
One night I started deteriorating quickly. I got extremely breathless, with oxygen levels lessoning and by morning I was given the timeline of roughly an hour to live. My heart was severely inflamed and I was drowning in excess fluid caused by Lupus. I was rushed by helicopter to the nearest hospital which had the required equipment to drain the fluid. I was in hospital for around three months, still suffering from very sore joints, and they had to confirm my diagnosis of SLE Lupus. This was the beginning of my twice yearly visits to the specialists.
SLE Lupus (that attacks all the organs of the body rather than one or a few parts within the body) can be a very debilitating autoimmune illness. Basically, my own body is attacking itself.
The Lupus lay dormant for seven years until I was 18 years old, which is when I got diagnosed with stage 4 Lupus Nephritis:Lupus of the kidneys.
I was put on chemotherapy which tries to kill the active Lupus cells that are attacking my kidney. The doctors caught it in time and were able to treat it. If they didn’t, I would most likely have had a kidney transplant.
On a daily basis I deal with arthritis in my joints, and at times I am left with a butterfly rash that is common in many Lupus patients. I also have fatigue and a high chance of having a stroke.
Around my early teens, my rheumatologist (Lupus doctor) informed me that around the age of 20 or so I would need to get two of my heart valves replaced.
At 21 I had to have open heart surgery to replace two of my valves. It was no easy task for the doctors to decide which types of valves I would need. Pig valves have to be replaced every 15 or so years, but mine would have to be replaced earlier, as the soft tissue in them would be highly vulnerable to an attack from Lupus. In the end, we chose mechanical valves, which are lifelong but have a higher risk of a stroke.
Georgiana is raising funds for the Lupus Foundation of America and their research of finding a cure for Lupus. Lupus is an autoimmune illness that has debilitating consequences, where a person’s own immune system inappropriately attacks tissues in various parts of the body. As many as 1 in 250 people may develop Lupus. If you would like to support this cause you can make a donation or attend the Purple May Charity Ball on the 16th May 2020.