Personal Struggles

Living with the Burden of Wegener’s Granulomatosis (Part 1)

autoimmune-disorder-blood-testThe long list of blood test I just had at SGH

It’s been more than a year since I last talked about my autoimmune disorder. If you’re wondering whether I’ve fully recovered from it, the answer is NO. For a Wegener’s granulomatosis patient, chances for a complete recovery is very, very low. Unfortunately, Wegener’s is also a disease in which relapses frequently occur.

Therefore, I’m not hoping that I can ever fully recover, and I’ve resigned to fate that I’ll live with this disease for the rest of my life. =(

I was diagnosed with Wegener’s granulomatosis in year 2012. In Wegener’s, an abnormal type of circulating antibody called antineutrophil cytoplasmic antibodies (ANCAs) attacks small and medium-sized blood vessels. Injury to blood vessels affects several organs, including the lungs, kidneys and upper respiratory tract. If left untreated, there is a risk of kidney failure and death.

According to the Vasculitis Foundation, Kansas City, USA, this disease affects about 1 in 30,000 people. The cause is unknown, although it tends to strike between the ages of 30 and 50. The disease can damage vital organs and severely shorten one’s lifespan if the patient is diagnosed at the later stage of the disease.

I’m truly thankful that I was diagnosed early, before any lung or kidney involvement were detected. Since then, I’ve been seeing a private consultant rheumatologist at Gleneagles Hospital. I’ve been taking oral medication for the past 4 years, and my condition is under-control.

The main problem that I face now is frequent nose bleed, and it’s quite severe when I travel due to temperature and humidity. I’ve a very sensitive nose and whenever I sneeze hard, my nose will bleed. Sometimes, the bleeding is quite heavy and hard to stop.

The frequent nose bleed is due to my deviated septum caused by the disease. A deviated (or misaligned) septum makes it difficult for air to pass through the nostrils and into the lungs. The curvature of the septum also creates turbulence as air passes through the nostril. The more turbulence on the septum, the drier it becomes, and that leads to a bloody nose.

I used to feel very depressed whenever I look at the mirror. I hate my nose. I had wanted to go for a cosmetic surgery to repair my nose. But nowadays, it doesn’t bother me as much as it used to be. I’m just glad that I’m still alive.

For patients who are still working like me, the burden created by the disease is much higher. I’ve to take routine blood test every three months to monitor the ANCA level, which is commonly elevated when the disease is active. I’ve to take time-off from work for my check-ups. Cost of medication is also quite high.

Recently, a close friend suggested that I should switch to a public hospital. With subsidies for specialist care in the public hospital, I can reduce my medical cost. I always have the impression that waiting time is very long at public hospital, and I dread going to polyclinic to get a referral letter.

Nonetheless, I decided to give it a try. Two weeks ago, I went to Hougang Polyclinic. I was pleasantly surprised that I could make an appointment online. I booked the last slot at 3:45pm and within two hours, I was done with my consultation, payment and referral letter. It was indeed faster than I’ve expected.

Two days later, I received an SMS from Singapore General Hospital with my first appointment at the Autoimmunity and Rheumatology Centre (ARC). My appointment was fixed on the following week. I couldn’t believe how fast it is, as I was expecting at least one month waiting time. And the best thing is, I can easily re-schedule and keep track of my appointments via Health Buddy mobile app!

My first consultation at Autoimmunity and Rheumatology Centre (ARC) was a pleasant one. I did a comprehensive blood test. Six syringes of blood were drawn for the test, and I was so exhausted after that. From specialist consultation at ARC to blood test at clinical laboratory and medicine collection at the pharmacy, the whole process took just 3 hours.

“See life differently now”

I may have said this many times. This disease makes me see life differently now. I know that I should be thankful because I can still lead my life as normal as long as I take care of myself. Even though I need to take a bunch of pills every day, I work hard to not let this disease rule my life.

In addition, I reset my priorities in life. Health and happiness rank the highest to me now. I couldn’t care less about everything else. I don’t want to waste my time comparing and complaining, or make myself unhappy over trivial matters in life. To be with my loved ones for another day, I strive to make every day a meaningful and happy one.

Flower

Part of my aim in writing this series is to raise awareness about Wegener’s Granulomatosis. If you know someone who’re suffering from this disease, please help to spread the word. I want to reach out to them to share our trials and triumphs against this disease.

 

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4 Comments

  • Reply
    Amy
    November 22, 2016 at 10:25 AM

    Dear Emily,
    Wish you a speedy recovery from your illness. Shall keep you in my prayers. I’m happy to hear that you’re dealing it with all your positive vibes. Take care yeah!

    • Reply
      Emily
      November 28, 2016 at 9:45 PM

      Dear Amy,
      Thanks for your well wishes. Cheers!

  • Reply
    Li Pheng
    November 24, 2016 at 9:01 AM

    I’m so sorry you have to go thru this. I admire your writing on this blog. Just to let you know that there are some of us out here in this big big world who care about you, even if we’ve never met in person. Always give yourself a big pat on the back for all the things you’ve accomplished while enduring this disease. Take care of yourself and never give up.

    • Reply
      Emily
      November 28, 2016 at 9:45 PM

      Dear Li Pheng,
      Thanks so much for your concern and kind comment. 🙂 Truly appreciate it.

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