I'm sorry to be telling you all these, I know this is a survivors group so we should be supporting each other through these tough times. I am glad I had your stories to pull me through during those times he was unwell. Please skip my story as it was not a happy ending one, though I prayed hard for it to be one.
I'm here again after 54 days that my fiancee passed on. He was so full of life and joy that I couldn't bear the thoughts of him leaving me, hence probably still in denial but writing this blog post. But fate intervened and he did. He passed away after fighting acute respiratory distress syndrome for about one week in ICU. He was only 25 years old. His AVM ruptured during the 4th embolization and emergency craniotomy was done and he woke up for a few days, progressing well and responding, moving his fingers and toes, fully resected AVM. But unfortunately, he was unable to ween off his ventilator and his lungs succumbed to ARDS. And over the course of those days in ICU, it was really difficult for us as he would be spiking fever and oxygen saturations will be unstable but eventually, he passed on peacefully when his heart stopped on that fateful day 17th August 2013.
For those still fighting AVM, my advice would be to just follow your heart, sometimes you get bombarded by decisions and it's tough to know and predict the outcome as a surgeon but they gave us 50% chance of survival for his ARDS. But he was the unlucky 50%. So sometimes when I think back about the decisions that we've made together, I do regret and do wonder if things would have been different, if we took a different pathway, if we just let it be and not touch the AVM, would he have survived longer.
It's really up to fate I would say, regardless, preparing for the worst outcome would be the best. I was prepared for him to be half paralysed but not death. We didn't discuss it in detail and he didn't even have a will because he was so young but when it comes to AVM, I know for sure, no matter how optimistic a person can be, still, BE PREPARED FOR THE WORST OUTCOME.
Death is always a question avoided by doctors and patienrs alike. We like to think the best of everything. Being a doctor myself, I thought I was fully prepared, but sad to say I was not. I had so many things left to tell him but I didn't have a chance to because we didn't talk about it. We didn't talk about afterlife, we didn't talk about how would he like his funeral to be, his eulogy etc. But now, I regretted not talking about it. We were so at lost when he died that we all went on auto pilot mode and made decisions according to what we think he would love best, but we all at some point was devastated because we wanted to really just ask how would he like things to be.
Regardless, this would be my last post here.
Thank you for all your support and well-wishes.
I wish you all the best and may God bless each of you with good health and happiness.