Imagine having nose block that never, ever goes away. Imagine waking up at night soaking in blood due to nose bleeding. Imagine the hassle of keeping up with your doctors’ appointments (especially if you’ve a full-time job). Imagine using drug to get your life back. Imagine living in uncertainties not knowing how much longer you can live.
If you ask me what it’s like to live with an autoimmune disorder, these are my answers.
For many people, the diagnosis of a rare disease comes out of the blue. In Aug 2012, I went for a sinus surgery and walked out with an autoimmune disorder. Not really, but that’s what it felt like. I didn’t really think there was anything wrong with me except having frequent nose bleeding. I’ve always been a healthy person, and I rarely get sick.
What is Wegener’s Granulomatosis?
I was diagnosed with an autoimmune disorder called Wegener’s Granulomatosis (WG) after two sinus surgeries. Having an autoimmune disorder in general means that your immune system gets confused and starts attacking a part of your own body.
WG is a form of vasculitis (inflammation of blood vessels) that affects small and medium sized vessels in many organs. The inflammation makes it hard for blood to flow. It affects the nose, lungs, kidneys, and other organs. Due to its end-organ damage, it is life-threatening and requires long-term immunosuppressant.
Luckily, I was detected early and there was no lung and kidney involvement yet. Even though this disease is chronic (no cure) and the effectiveness of treatment is unpredictable, my rheumatologist assured me that my prognosis is good. He prescribed prednisolone (a type of corticosteroid) and cyclophosphamide (a drug used in treating cancer and also WG). I started right away.
The First Year – still manageable!
The first year was rather smooth sailing. I did everything I could to get healthy and stay positive. I went for specific blood tests every 2 to 3 months to ensure that the disease is under control. Except battling with weight gain (side effects of prednisolone), I lived my life as normal.
The Second Year – the trouble began!
I was down with a lung infection, my airways were congested, and I couldn’t breathe properly. I went to see my rheumatologist, and was told that I might have a relapse. As there were signs of lung involvement, I was referred to a pulmologist for Heart CT Scan and further treatments.
After I recovered from the lung infection, my rheumatologist discussed a new treatment for me. Rituximab is an expensive drug used to treat certain types of cancer, and it’s also an alternative treatment for WG. It’s more effective that steroids and cyclophosphamide as it’s a B-cell targeted therapy. It’s given through intravenous infusions.
The treatment costs about $14,000. Despite the high cost, I decided to go for it. I convinced myself that I can earn back that amount of money – I only have one life and I can’t risk it. I was hospitalized twice for the infusions.
Thankfully, the treatment worked well for me and my disease is under control until now.
By the end of second year, I started suffering from side effects of cyclophosphamide. I had hair loss, night sweats, and my menstruation stopped. It was no joke – waking up in the middle of the night drenched with sweat was very suffering.
I went to see my rheumatologist again and did a hormone test. The results showed that I had early menopause. I was referred to a gynaecologist for hormone replacement therapy (HRT). This was my toughest ordeal. Hearing the word “menopause” when I was not even 40 years old, it broke my heart and my eyes welled up in tears.
I braved myself to undergo HRT. Several weeks later, I felt myself again and I recovered. My menstruation cycle returned to normal.
The Third Year – began to feel good, but still uncertain
The third year was good. My disease is under control and I changed my medication. The new medication does not have side effects (but more costly). I shed all the kilos that I’ve piled up since 2 years ago through a slimming program, and I’ve never felt so good before.
However, my happiness didn’t last very long.
I experienced blurred vision recently, especially after spending long hours working at the computer. I went to see an optometrist, and he suspected that I might have glaucoma after conducting an eye check and went through my medical history.
My rheumatologist suggested that I should see an ophthalmologist for a detailed eye check as WG may potentially affect the eyes too. I was devastated and somewhat angry. ENT, pulmologist, gynaecologist and now, ophthalmologist. What else is new? Why there is no end to my disease? And why me? Life is so unfair!
Last week, I dreaded myself for a detailed eye check at Singapore National Eye Centre. After a series of tests, the ophthalmologist ruled out glaucoma and cataract. For the first time, it was false alarm.
The reasons behind my blurred vision are dry eyes and higher degree of myopia. I was given eye drops and a prescription to change my glasses. It was such a relief after worrying about it for days. And I walked out of SNEC feeling hopeful again!
This coming September, I’m entering the fourth year. They say what doesn’t kill you makes you stronger. In a way, I agree – it makes me re-evaluate how I was living my life and take serious steps to improving my overall health.
This trial is never-ending to me. Although it hasn’t advanced to a level that cause a major disruption to my life (I pray hard that it will NEVER), I feel frustrated with life sometimes. I kept most of the anger and disappointment to myself because I didn’t want to affect anyone in my family.
Nonetheless, this disease also makes me see things differently now. It’s a liberating experience to say the least. Every day when I wake up, I’m thankful to see the sun rises on another day of my life. To be with my loved ones for another day, I strive to make every day counts. I want to be here for them for as long as I possibly can.