Many people are grateful that they did not have to experience dialysis first hand.
However, for many chronic disease patients, the only options that they have is choosing between death or living their lives as normal as possible with a slight inconvenience, such as dialysis.
I was fortunate to be able to interview Sheryn (not her real name) about her inspirational journey with lupus and dialysis. Here’s how she was able to make it so far.
Sheryn was a normal first year college student, ready to embark on her life journey, once she graduated college. In 2011, something happened out of the blue. She was having joint pain all over her body, and blisters on her lips that smeared blood on the pillow when she slept. She had high fever intermittently for more than one month, and rashes surfacing on her face and her limbs. When she went for a blood check, her white blood cells were extremely high, whereas red blood cells count were critically low.
Sheryn’s family members had a heredity history of leukemia whereby she had two cousins who passed on following the diagnosis of leukemia, at a young age. Her parents were in despair thinking that she could potentially have inherited this disease as well with her unusual bloodworks. Fortunately (or unfortunately? I learnt that this is a matter of perception), her rheumatologist diagnosed her as Systemic Lupus Erythematosus (SLE), instead of leukemia.
With lupus, Sheryn often felt joint pain and fatigue that caused disruption to her classes. Her rheumatologist even advised her to take leave from her course so that she could focus on recovery. But she was determined to complete her course, even if it would take her longer as she had to miss some classes. In 2012 her joint pain was under control, and she believed that she was on the road to remission. She understood that if her lupus stayed inactive for 2 years since their first activity, the illness becomes stable and less likely to be activated again.
In 2014, Sheryn’s lupus started to attack her kidney and she was diagnosed with Lupus Nephritis Stage IV. The prescribed immunosuppressant caused her difficulty in breathing therefore she had one less option in her medication. Her kidney was in a state of deterioration from 2014 – 2016, however the ultimatum took place when her creatinine shot up to 370, 416 and to 1102 in March 2016. Creatinine is a waste product contained in the blood, the normal range is less than 100umol/L, it increases when the kidney’s ability to filter and remove waste significantly decreased.
She had diarrhea frequently and her stomach started bulging up because of the inability of kidney to filter the toxins in her body. She had a pseudoaneurysm in her stomach that bleed as a result of the constant attack lupus had on her kidney. She was hospitalised for more than a month and experienced a drastic weight loss from 60kg to 41kg.
She had AVN on her hips, a condition whereby there was interruption of blood circulation to the body part, causing a slow decay of the bone tissues. She was not able to walk, and often fall because she would occasionally lose consciousness on the hips area. However she was determined on trying to walk 10 minutes everyday with the help of her mother. She was on a wheel chair for nearly a month, before being able to stand up and walk again. The doctor told her that she needs to be mentally prepared, in case her AVN did not improve, she might not be able to walk again.
In 2016, she started dialysis as her kidney function is severely deteriorating. She had a permanent catheter fixed near her neck, where a tube will be connected via the catheter to the dialysis machine whenever she went for dialysis. The dialysis process takes around 4 hours, where blood was flown from her body into the dialysis machine, filtered and cleansed before being sent back to her body. She had to go for dialysis sessions three times a week.
Sheryn was not able to attend her college graduation in 2016 as she was hospitalised. She could not find a full time job as the dialysis sessions took up three days each week. However she persevered, and managed to find a part time job where she works twice a week. She finds purpose in her job and continues her treatment. She goes to the gym and exercises frequently. She still goes out and hangs out with her friends despite her health condition, for eg sometimes having Irritable Bowel Syndrome and having multiple scars on her skin because of lupus.
Despite all the adversities, she said what pushed her forward, was her favorite line: Stay positive even when it feels like your whole world is falling apart. She said she owed much to her mother, whom stayed strong and came to visit her everyday in the hospital, despite having a full time job. Mom told her that she was a very precious gift from God, and that she will do everything she could to make sure she survived.
She did not see herself to be seriously disadvantaged despite having lupus and the need to go for dialysis. She believed that everyone is responsible for their own lives and well-being, so she fought hard to make herself normal again. I asked her how did she find dialysis to be a normal part of life when it clearly caused her multiple inconveniences. She said it was not as bad as how people perceived it to be, and she was glad that the nurses and doctors in the dialysis centre knew her and treated her well. She felt blessed that she was able to continue with her normal life without major issues.
Her creatinine readings are now improving, to 800 as of now, and the frequency of her dialysis is reduced to twice a week. She hopes that one day her kidney will recover and she could be taken off dialysis eventually.
When I interviewed Sheryn, I finally understood why I had impostor syndrome previously, because I did not think that my condition was severe enough to inspire anyone. After I heard from her on what would transpire to be my worst case scenario, I realised that we are not in a race to see who had a worse lupus condition, but instead, to encourage each other by showing that everything is possible if you persevered.
Let us embrace our lupus and not let it be our bosses. Try your best to be normal again and be grateful for the health that enable you to read, think and exercise. Focus on your recovery, and continue doing the things that you enjoyed doing before you had lupus or any chronic disease. If you could not do it due to physical condition, still be connected and keep yourself abreast of the latest development of your passion, because you will be picking it up again soon! Believe in yourself, and eventually lupus will believe in you too.