June 2009. 

The month it all started.

It started as swollen feet at the end of the work day. I thought nothing of the situation, as I had been having more and longer “on the feet” days at work, and the swelling would resolve by elevating my legs. In July, I noticed that I was getting tired and short of breath on my usual walks to the nursery from the pharmacy. The excuse I used then was unfit…need to exercise more. But then the swollen feet became swollen legs, which did not resolve with elevation. Concern set in.

I made an appointment to see a physician to get some answers. The day of the appointment came. The usual vitals taken. Everything fine until…blood pressure; 180/100. But let me put that result into context. My usual blood pressure range was 100-110/60-70. Blood pressure retaken, but this time in the supine position, 200/110! My physician went into emergency mode. A slew of tests was ordered and referral to a Nephrologist given. The results came in, provisional diagnosis made…Lupus with kidney involvement.

In August, the Sunday before my scheduled kidney biopsy I worked, more for a distraction than to dwell on the procedure to be done. I arrived on the ward early Monday morning, and the usual paperwork and vitals taken for admission. The biopsy was performed with no complications and I was discharged the following day. I would get the results later that week. 

I got the call the Friday night. My kidneys were damaged. I had Lupus Nephritis stage IV. Now if you know me, I like to be very methodical in all that I do. Well, my body had other plans so no overthinking could be done. That weekend was torture as I got progressively ill. I was now swollen up to my torso. My husband contacted the Nephrologist, who advised to take me to the hospital where he would meet us.

When we reached the hospital, I couldn’t even walk from the car. Upon arrival to the ward, via wheelchair, I was quickly admitted and given oxygen. More blood works ordered. When asked to provide a urine sample, I could not. My kidneys had finally shut down. Emergency dialysis was ordered. I cried like a baby. I now had to do dialysis three times per week. Difficult discussions about treatments, including chemotherapy, were had. I remembered an ICU resident coming to take me to the Unit as my condition had deteriorated rapidly. I refused. The ward became my home for the next 3 weeks. I started my chemotherapy.

By November, I was no longer needing dialysis and my treatments were working. I’ve been in remission since 2011.

However, I struggle daily to pretend I am well so you will not show me pity. I struggle daily to pretend that the medications are not negatively affecting me. I struggle daily to be seen as a person and not as a label. I struggle daily to have a normal life. What healthy person has to take thirteen pills daily to stay alive? So, you say I don’t look sick. But when you look at me, what do you really see? 

by Julie-Ann E. Jemmott (Registered Pharmacist, Lupus Warrior)