680 WBC

Hi all - Wanted to share my CML story!

While on holiday in Bali, I started to feel extreme fatigue and vertigo. After visiting the doctor and thinking it was Bali belly, they did a blood test only to see my white blood cell count at over 600! The doctor in ED immediately said to me, 'you have leukemia'.

This was a complete shock! Immediately booked the first flight back to Aus and straight to the hospital (still in denial and in shock about the what I was told in Bali). Also barely was able to make it from Bali to Aus how weak I was while at the same time travelling with a toddler and pregnant wife.

Hospital in Aus confirmed it was CML and measured WBC at 680 when I was admitted. Spleen was 4 times the size of normal and pushing up against my lungs limiting levels of oxygen. Spent 10 days in hospital, half of that in ICU until my bloods dropped down to under 20 and are now at normal levels while taking Nilotinib. Thankfully the medication is available and works for me.

I lost hearing in my right hear and now live with single sided hearing loss which was caused by the high amount of WBC which damaged my nerve. My eyesight was down to 20% in one eye but thankfully recovered.

Now that I look back, the signs such as abnormal night sweats, bloated abdomen and blurred vision were all there and had I gotten checked earlier, maybe I could have avoided hospital, ICU and the hearing loss.

On the other hand it's a small price to pay and thankfully there are options available.