It all started with a mysterious polyp, the size of a big red bean, in my nose.
For fear that it could be nose cancer, I went to see an ENT specialist for examination. After a CT scan, the specialist suspected that there was infection in my sinus, and he advised me to go for an operation.
It’s called a functional endoscopic sinus surgery (FESS) – a common type of surgery for chronic sinus disease. It’s performed using a small endoscope inserted through the nostrils, without an open incision, and through general anaesthesia. A biopsy was also performed to determine whether the polyp is cancerous.
I was discharged from the hospital the next day. The post-operative pain kicked-in, and it worsened every time I returned to the hospital for nasal cleaning to remove the blood clots in my nose.
It was a painful procedure, but I had to endure.
Fortunately, the biopsy report showed that it wasn’t nose cancer. The diagnosis is abnormal fibrous tissues that are slowly growing in my maxillary sinus. The doctor suggested that I should go for a second operation called Caldwell-Luc operation, where he will cut through my upper gum to remove the fibrous tissues.
Sounds scary, isn’t it? I googled for Caldwell-Luc and when I saw this video, I completely freaked out!
The risk of not removing the tissues is that it might affect my eyes, but there is no definite answer as to when it will happen. At the end, I chose the ‘wait-and-see’ approach. I was so fearful to go for another operation, so I chose to live in fear, not knowing what will happen to me in the future.
This could be the worst decision I’ve ever made in my life.
All went well for the next six month, and I thought that the ‘thing’ must have stopped growing. Then, my nightmare came when I started to have unusual nose bleeding.
I took up the courage to see another ENT specialist for a second opinion. I went through another CT scan. To my horror, that ‘thing’ has changed drastically since my last scan. As a result, the specialist didn’t think that it was just fibrous tissues. Something is more aggressive in there.
My heart skipped a beat when I heard this.
At the end, I had my second functional endoscopic sinus surgery (FESS) as well as Caldwell-Luc operation – something that I thought I could avoid, but at the end, I still had to undergo it. The pain and side effects like vomiting and face-swelling – it was very tough. I don’t want to elaborate any further as it gives me phobia every time I think of it.
3 Aug 2012 marked a new chapter in my life when I was diagnosed with Wegener’s Granulomatosis (WG). When my doctor broke the news to me, I could immediately feel the chill down my spine. The only thing that I can comfort myself is that it wasn’t cancer. I can still be treated. I still have hope.
WG is an incurable form of vasculitis (inflammation of blood vessels) that affects the nose, lungs, kidneys, and other organs. Due to its end-organ damage, it is life-threatening and requires long-term immunosuppression.
To further explain it in layman’s terms, WG is a rare disorder in which certain blood vessels become swollen and inflamed. The inflammation makes it hard for blood to flow. The cause is unknown but it’s thought to be an autoimmune disorder.
The scariest fact is that severe WG typically carries a dismal prognosis, with up to 90% of patients dying within 2 years, usually of respiratory or renal failure. Luckily, I was detected early and my chance of recovery is high with appropriate treatment.
Prior to WG, I usually take one multi-vitamin tablet and call it a day. Now, I’ve a whole cocktail of medicine waiting for me every morning. I have to see my rheumatologist once every 3 weeks for check-up and blood test.
These medications caused a lot of side effects like weight gain, ‘moon face’, water retention, fatigue, hair loss etc. Every time I look at the mirror, I feel so depressed seeing how drastic my physical appearance has changed since I started the medication in Aug 2012.
Knowing that I’m unable to conceive when I’m taking the medication (it will cause birth defects) also saddened me to no end. But I have no choice. My health is more important than any other things now.
Thanks for your time for reading this long post. It has been a long and tiring journey for me with plenty of disappointments and challenges. I still don’t know whether I’ll recover.
I’ll be going for a new treatment very soon. According to my rheumatologist, the effectiveness is very high but it comes at a whooping price of $14,000. I’ve decided to give it a try, rather than taking long-term oral medication and continue to suffer from its side effects.
This medical condition makes me see things differently now. It also a liberating experience to say the least. Every day when I wake up, I’m thankful to see the sun rise on another day of my life. To be with my family and loved ones for another day, I live every day like it will be my last.
I’m eternally grateful to my husband for his love, patience, support and care throughout this painful experience. My son is my biggest strength. For him, I’ll continue to fight against this medical condition.
Every time I go to the hospital, he will ask me “Mama, are you sick?” And I’ve always tell him, “No, Mama is not sick. I’m only temporarily unwell. I promise you that I’ll be healthy very soon.”
I believe everyone will have their trials and tribulations. I choose to look at it positively. This is my trial and I have faith that I will come out triumphant.
Lastly, the simple joy of being alive, being able to move freely, and being able to live with our loved ones are daily blessings that should never be taken for granted.
Update on 23 Mar 2013:
Thank you, thank you, from the bottom of my heart, for all your well-wishes, prayers and encouragement. I deeply appreciate all your comments, SMS and e-mails.