Don't Switch My Life Support Off With Aleisha Pienaar

This is a powerful episode, its very raw and rather emotional but I have Aleisha Pienaar to guest who shares her story of her Dad who had a heart attack last year at the tender age of 53 and  who was, after being revived,  left fighting for his life in ICU.

Aleisha had read my book "Relentless" and  had attended one of my speeches where I talked about my Mum and Dad's stories, It  was in her time of need that these stories became the catalyst  for her to fight hard for her Dad.

The ICU team were convinced her Dad would not wake up from the coma and that if he did, after having been without oxygen for 46 minutes, that his life would be not worth living and that the  brain damage would be massive or he would be in a vegetative state.

They were told they must take him off life support. Aleisha reached out and I encouraged her to fight, to be vigilant and not to give up when all others had. 

A couple of days after they were told to take him off life support her father incredibly, woke up and although his rehab  was hard and rather long her Dad is now back full into life, working, exercising and enjoying his family again.

I share too, my personal story of fighting for my Dad in ICU and how I was blocked at every turn from getting what I needed for him.

Please note these are our very personal, real stories and your experiences may be very different but we want to share openly, the good, the bad and the very ugly of what we experienced and a message of empowerment and a message of not to give up too early. If I had my mum would also not be with us now.

We hope by sharing this, we will help other families faced with  similar situations, we also hope that it might initiate change in our system.

I have a dream and that is to get a law change in NZ - to get  "The Right to Try" law which is implemented in some states in the USA which basically says that if the doctors have no more answers and someone is dying that you can sign a waiver and try anything reasonable to save that person's life. I wanted that for my Dad, I was wanting intravenous vitamin C and thiamine as per the protocol of this study 

But I was blocked due to legal issues and I had to fight for 15 days against the ethics committee - all mind you, while my father was dying and they had nothing more to offer and while they were actively trying to get me to sign off on taking him off life support. I eventually won the right by finding a loophole that allowed Dad's GP to come in and administer it but by then he was in multiple organ failure and could die at any minute and despite that the very first infusion (which was only half of what I wanted) dropped his CRP in half, improved his kidney function and enabled them to take him of Noradrenaline but then we were blocked for 18 hours from getting him the next infusion and again the next infusion and by then - it was way too little and way too late and I was forced to take him off life support and they morphined him in front of my own eyes until he died. Now I am left not knowing if we had been allowed to do it from the very beginning whether his life could have been saved and quite openly I have been left severely traumatized from this experience.  Some of the things I witnessed in there were horrifying, I don't and can't share all of what we went through but suffice to say I believe things could have been different had we been given a chance.

BIO
Aleisha and her husband, Emil, are based in Dunedin Otepoti, New Zealand. Aleisha is a full-time parent to two little girls, and Emil manages a rest home. They have a heart for people whose voices are not heard, and have invested time in humanitarian work in the Amazon Jungle, as well as local outreaches to those who struggle in their home city. With a strong mission-mindset, Aleisha and Emil are working towards creating more impact in their community. They have faced several medical challenges, including misdiagnosis of a now-irreversible medical condition, two miscarriages, as well as the very near loss of Aleisha's father to a heart attack. As a whanau, their desire is to raise awareness of complications in the medical field that can be addressed if caught early enough, and believe that if enough people are vulnerable and willing enough to share their story, we can see a change in the health care system that will bring a lot more happy endings.

And now a summary of how your book and story helped us save my dad.

Lisa spoke at a conference that Emil and I attended two years ago, sharing the story of how she rehabilitated her mother through determination, self-education, and persistence. In 2022, I found myself facing a similar situation, when my father suffered a catastrophic heart attack. In all the confusion and uncertainty, Lisa's story came to mind, and I knew I needed to get my hands on her book, "Relentless." I devoured the pages, reread my notes from the conference, and what I immediately saw was the importance of standing firm, comparmentalizing emotions, and taking the necessary steps to fight for my dad's right to live.

After a few days, we were asked to consider turning off my father's life support. I wasn't willing to settle for that result, and insisted that he remain on life support until we were able to successfully wake him and assess his brain function. The very next day, my father woke safely from his coma, and responded to instructions the doctors gave him. After a month in ICU, dealing with multiple crises and complications, my father was healthy enough to come home. His brain function is perfect. A few months of physical therapy rebuilt his muscle mass. He is completely himself, and alive, thanks to Lisa sharing her story two years ago. We are so grateful!

 

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