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Don't Switch My Life Support Off With Aleisha Pienaar

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Published 39 min Episode 299

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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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To pushing the limits,

Lisa and team

Read the full transcript

Made from the episode's captions and tidied up automatically, so the odd word may be off.

Lisa: Well, hey everybody, and welcome into Pushing the Limits. Today I have a very personal and very touching story. I have Aleisha Pienaar to guest. Now Aleisha was in an audience where I gave a speech a couple of years ago, and she also read my mum's book, "Relentless". At the time she said to me that she couldn't really relate to some of the stories, obviously the running ones, but also Mum's story of overcoming the odds and beating every sort of odd that you could possibly have. But last year she was faced with a situation in her family where her father had a massive heart attack and collapsed at the age of 53 only, and was in a situation in the hospital and reached out for help.

Lisa: She shares, in her words, her experience, and it's a deeply moving story, and certainly quite a powerful and empowering one. I also share a little bit of my journey with my father. So forgive that this gets quite personal, and this is our opinion and our experiences, so look at it through the lens of that. But I'm sharing this because I want people to be empowered if they're ever in a situation like that, and also what you can do to maybe prevent that, and what you can do if you're in that sort of a situation — just to give you some things to think about.

Lisa: So very generously she agreed to share her story on the podcast, because she realises that she probably wouldn't have her dad today if she hadn't read my book and heard my speech and fought like crazy, like I did. So without giving away the whole story, please enjoy this one. It is quite deep and personal. And if you want to read my book that I wrote, "Relentless", which just tells Mum's story — it doesn't tell Dad's story, because we haven't got to that book yet, and there's still many, many things that I'm unpacking from my journey with my dad — but if you want to read "Relentless", you can get that in my shop. It's available there. A very powerful and empowering story as well. So without further ado, now over to the lovely Aleisha Pienaar.

Lisa: Well, hi everyone, and today I have the lovely Aleisha with me, and Aleisha has a bit of a story to tell. I had a very tiny, tiny piece to play in her story, but I really wanted to share it with you guys, because both Aleisha and I have been in situations with our dads. And as my listeners and followers know, I lost my dad three years ago, and it's been the hardest time of my life. Some of the things that happened to him in the ICU were, for me, terrible and traumatic. I have come through that experience with a very strong viewpoint on the way things should go, and that you should be given the best chance to survive. I'll share a bit more of my story later, but I wanted to let Aleisha come to word. So Aleisha, tell everyone how we met and a little bit about yourself before we get underway, and tell them your dad's story.

Aleisha Pienaar: Well, thank you so much, Lisa. I really appreciate you catching up with me today. Basically, in a nutshell, a couple of years ago Lisa attended a conference that was run by my mentors, and she shared her story about how she fought for her mum and fought — just an incredible story that at the time I honestly didn't relate a lot with, but I shelved it as an important talk, because there were natural nuggets and everything. And then just last year I had an experience where my father went through a very similar situation, where I had to consider if we would keep fighting for his life or not. And if I hadn't heard from Lisa at this conference about her story, I probably would have let go of my dad earlier than I should have.

Aleisha Pienaar: And so when we went through the situation — and we'll talk about it more in a second — I contacted Lisa to send her a message to let her know how grateful I was for the talk that she had done two years prior and how much it had impacted the decisions that we had made. And then she was so kind to respond, and so I'm really excited to catch up now and talk a little bit more.

Lisa: And you managed to read the book too. There was a point of, then this was Mum's story, let alone Dad's story, but this was Mum's story. And unfortunately I've been through this a few times now. But tell us, Aleisha, what happened to your dad? Your dad's really young, isn't he? But suddenly one day...

Aleisha Pienaar: Yeah, so my dad was 53 at the time, and he just suffered a massive traumatic heart attack out of the blue. He's a young, healthy guy, he's tall, he's strong, and then just one day he was not. It was crazy, it was unexpected. I think the official diagnosis was a ruptured cyst in his aorta, or something — I'm not entirely sure what it was, it was tricky to understand the doctor speak. But that was it. So it was completely random, there were no lifestyle issues that were connected to it. And yeah, so he suffered a massive heart attack. The worst part of it was that in the process of attempting to resuscitate him, he went 47 minutes without oxygen, which would kill anyone, and the fact that he survived was just incredible.

Lisa: Yeah, and he unfortunately aspirated, so the lungs were implicated. Tell us a little bit what happened there.

Aleisha Pienaar: Yeah, so if I could share the story of what happened. He was at the perfect place to have his heart attack — I mean, if we're going to look at the positives. He was right outside a police station, and so he was responded to very quickly, CPR straight away. But in the process of having his heart attack, he aspirated, so a lot of the contents of his stomach, some of which were quite acidic at the time, went straight into his lungs, which caused significant complications later on in his recovery process, and as well affected the placement of an oxygen tube when he actually got to the hospital.

Aleisha Pienaar: When they managed to finally get him on oxygen, they tried to put it into perspective to us that at 47 minutes you would have no brain function left after having been without oxygen for that amount of time. But they worked really hard on him, they definitely did. The fact that they worked hard on the CPR — I'm really grateful for that. But they did mention to us that he probably wouldn't come out of this the same, and that he wouldn't be able to do anything for himself, he wouldn't be able to talk or communicate, he probably wouldn't have any memories of anything, because he'd basically be surviving, if he could even come out of this, if he could recover from the aspiration and the heart attack and everything.

Aleisha Pienaar: And so he was actually unconscious — they kept him sedated, unconscious, for four days. We were at the hospital for a lot of time. They tried really hard to wake him up a few times, but every time they tried to wake him up his whole system went haywire, and so they had to sedate him again straight away. And so after four days of being in hospital, the doctors very kindly took us to the side to talk to us about the gravity of the situation and suggested that we considered turning off his life support. And they worded it really well — they said, you know, we had to think about what he would want, not what we would want. But that did complicate other things, because we had multiple perspectives of what he would want in the situation. My mum and my sister and I — ultimately my mum and my sister were leaning towards turning off his life support.

Aleisha Pienaar: But in this moment, I remembered Lisa's story about her mum. And at the time I don't think we talked very much about your dad, Lisa, but I remember the story about your mum. And it was actually a bit in your book, if you wouldn't mind me sharing, that really carried me at this point. I quickly picked that up — it was this compartmentalisation, where you said it gives you the chance to block out what's unnecessary, including emotions, so you don't run around like a cabbage head. Of course, it's important to accept that you will still have to deal with the emotional turmoil later, but it helps you to prioritise.

Aleisha Pienaar: And so because that concept was ringing in my mind, I immediately switched off my emotions. I honestly can't explain how it happened, you just do. In that case it's adrenaline or whatever. And I said to them, "No, we're not switching off his life support." And I was probably a little bit rude, and I said, "You haven't given him a proper chance to wake up, so we can't actually see where he's at." And so I said to my mum and my sister, I said, "Even if we do get to wake him up in a few days' time and he's not well, I will stand by him and I will work with him through this. I know that you guys have full-time jobs. I'm very grateful that I don't, I have a lot more free time. I will work with him, and we will help him recover as much as possible."

Aleisha Pienaar: And I just had that ringing in my mind all the time. Naturally, I got to you very quickly, Lisa, and I was eating up those pages, because it was just so vital, and it carried me through that time, just hearing your story. And then on day five — so the next day — they thought, okay, well, let's give it one more go, let's try to wake him up one more time. And they did. They woke him up, he was calm, he was still very much not here because he was on so many different medications, but they asked him to squeeze their hand and they asked him to blink his eyes, and he responded to both those instructions without hesitation. And so then they knew, okay, there is brain function — the fact that he was able to respond to those. And so they immediately told us, and they said, "This is really, really great news. It means that there is some kind of response. We don't know how much of him is there, but there's something." And that's when the big recovery process started.

Lisa: Amazing. Amazing, Aleisha. And this is the thing: you don't know at the time whether you're going to be successful. You don't know whether they're going to die anyway. You don't know. But the thing is, you don't know, and they don't know, and you've got to give someone every chance, in my opinion. We go too quickly to that "let's turn off life support", because it costs a lot of money. You've got to understand the amount of resources that it costs to have someone in ICU, so you have to think, as a loved one, from that perspective, that that's what they're looking at and weighing up.

Lisa: And in the case with my father — I mean, I'd already been through this whole thing with my mum, but then with my father — they were really pushing us to take him off life support. In my case, he had had an aortic aneurysm, the same as your dad, but down here further in the stomach, and he'd survived a massive six-hour operation, 28 units of blood. He was 81, but he was an extremely powerful, strong man, healthy man, and he came through the operation against all odds. But he developed sepsis. And I had done the research previously on intravenous vitamin C, and I had come across research in regards to intravenous vitamin

Lisa: C and sepsis, and the work of Dr Paul Marik and others, and how if you put massive doses of vitamin C in, you could reduce the mortality rate by 48%. And so I started to fight for intravenous vitamin C in the hospital system, and came up against an absolute wall. So I had to fight day in, day out, while my dad's deteriorating in front of my eyes, while he's dying, and there's getting less and less options, and then them starting to force us to take him off life support, and me fighting and saying, I'm not taking him off life support, I want this vitamin C.

Lisa: And I had to go up against the ethics committee, and then things like weekends would come when nobody's working in the weekend, and you're just desperately holding on because your dad's dying and his organs are failing. And I eventually won the right to let my GP come into the hospital and administer IV vitamin C. Now, what they didn't realise in this whole battle that was going on is that I wanted that every six hours. That was the protocol that was with the clinical research that I brought to them, and they said to me at the beginning, the clinical research is completely irrelevant to us. We don't care about the clinical research. This is a legal matter. Our asses are on the line if we do something and then your dad dies. And I said, somebody's dying anyway, I will sign whatever you want me to sign. And they said, no, we will still be in the firing line, and so therefore we can't.

Lisa: And so I had to get every single doctor and every single nurse and the whole of the ICU team on board to do this. And I eventually got my wonderful GP to come up into the hospital, and this was now, unfortunately for us, 15 days into the battle. And so Dad was at multiple organ failure, death's door, could die any minute. And we did the first vitamin C, and it started to reverse things. It dropped his CRP in half, which was massive — it was still high, but it was massive. His kidney function went from 27 to 33, and they got him off noradrenaline and he was able to maintain his own blood pressure.

Lisa: And then I said, I need this every six hours. Now, my doctor could only come up in between her surgery, so that was 12 hours, and then they stopped me doing it. They did all sorts of things like get me out of the room while the doctor came in to do it and then tell her there's no IV line for you, we can't do it, and she went away, and I'm like, what the hell? I've been waiting. So there were things like this going on in the background. This is the absolute truth. And so we managed to get three IV vitamin C's in, but they were over 18 hours apart, which is just too much, and it was very small — she would only do 15 grams, we needed 30 grams plus.

Lisa: And on day three, she came in and she said, I've looked at all his obs, and there is now no way back. And she was the only doctor that I trusted in that situation. When she told me that, and I could see my dad suffering, at this point that's when I agreed. But if I'd had the vitamin C earlier on in the piece, when I wanted it, would my dad be with me now? I'll never know. All I know is the clinical research, and the clinical research is conclusive: the earlier you can get that in, the better your chance — and thiamine and the other things that were in Dr Paul Marik's study. And there have been other studies since. And while that would never be a guarantee that he would have come out, I would have had a chance.

Lisa: And so it's very ironic that we fought for my mum and we managed to save her life, and we fought for my dad with everything I had — I mean, I threw everything at it — and we didn't win. But the beautiful thing about your contacting me and reading my book and coming to my speech and stuff is, I feel like my dad's death has not been in vain, if that makes sense. And I'm going to let you come back in and tell the rest of your story, but it feels to me like my dad was on the other side and influencing us in that.

Lisa: And I hope, through this recording — my dream is to change the law in New Zealand that you have the right to try. In America, in some states, they have a right to try law, which is where, if you're at the end of life and the doctors have got no more options, that you're allowed, within reason obviously, to do things like this, and that you sign the papers that they're not responsible, and that you have the right. And I believe this would be an absolutely necessary law here. Everybody is talking about you should have the right to die, and you should have the right to turn off your life support. And I was told with my mum, you should sign a non-resuscitation order, and I absolutely, frankly refused, because I believe that life is precious and I will fight tooth and nail. And I've worked for eight years rehabilitating my mum, so I'm not talking out of a hole in my backside. I know what it takes to rehabilitate someone. But is that worth it? For me, it was definitely worth it.

Lisa: And I know that my dad had always joked, if I'm ever in that situation, just pull the plug. But when it came down to it, my dad was fighting alongside me, and it was his wish to continue to live. He was intubated, but he was able to tell me enough that, I want to fight and I want to stay with you. They took the tube out on day three, and they thought we had him, and he told me in no uncertain terms that he wanted to keep fighting. And in the following days, when he was re-intubated, he still told me with his eyes. I said, Dad, do you want me to keep fighting? And he would squeeze my hand and go, yes, please. So that fuelled my fight to keep fighting for him.

Lisa: And so it's a powerful story, and I think your dad's story is even more powerful, because your dad woke up. Tell us about what happened then, after he did wake up.

Aleisha Pienaar: Well, it's interesting. I just wanted to mention, with your father communicating with you that he wanted to fight and he wanted your support — unfortunately, in these first early days, my dad wasn't able to communicate that, because he was in a coma. But I think it was near the end of his ICU stay, he started getting a lot of his memories back. He still doesn't remember the incident itself, but he remembers very distinctly one morning, two doctors or two nurses and someone standing over him and talking about the potential of switching off his life support. And he says that in his heart, even though he was out, he could hear, and in his heart he was saying, just wake me up, I want to live.

Aleisha Pienaar: He had had this in his heart, he couldn't communicate it. And how many people can't communicate that desire to live because they are in a state where they can't? And how easy it is to just switch it off, because they haven't had that opportunity to communicate what's actually important to them. It made us rethink our entire — we wrote out our own desires in a clear document after that, so that if anything like that was to happen to us, that people would know exactly what to do in the situation.

Aleisha Pienaar: And when you were also mentioning the fighting for the vitamin C — one thing that we did in the ICU, my mum and my sister and I at the time, because of Covid rules only two of us could be with him at a time, and so we had a rotating schedule, but we kept an eye on his numbers. And we asked the nurses, we said, can you tell us what that means? Can you tell us what that means? What is this? What are we looking for? What's positive? What's negative? Because they're overwhelmed, they don't have time to keep an eye on all the small details. And one thing we noticed is all his numbers popped up positively whenever he had magnesium being given.

Lisa: Wow.

Aleisha Pienaar: And so we pushed that, that that was a regular thing, because the more magnesium that he had, the more his body seemed to respond well to whatever treatments they were giving him. And he was on so many different medications, and contra — what's the word? Contraindications.

Lisa: Indications, yeah.

Aleisha Pienaar: And they had to try and balance that out with another medication and everything. So it was a long road. He was intubated for a very long time, started causing issues with infection and such in his lungs because of the aspiration and the tube. So ultimately, when he was well enough, they ended up switching to a tracheostomy, because that way they could keep everything a bit more hygienic. And that was a big challenge.

Aleisha Pienaar: There were lots of things like that that we had to be very — we had to ask for things a lot, and we had to point out numbers a lot. And it was really, on a negative side, which was really sad, there was one particular nurse who my dad later had said he didn't trust her, but for us, we just didn't like her. Let's just say we didn't like her. And there was one point when I was asking her about some of his numbers, some of the things that were on the screens, and she said, well, if I had been with you to start off with, I wouldn't have told you what all that meant.

Lisa: Oh, so basically —

Aleisha Pienaar: No, no, she basically said, I wouldn't have told you what that means, because we shouldn't be telling patients' families what everything means.

Lisa: Exactly.

Aleisha Pienaar: And I'd like you to find out what it means, because they can only give so much. They're not emotionally attached to the person. You are. You're the one who's fighting for their life. They're doing their job.

Lisa: Arrogance. The arrogance of that just makes me — because I did exactly the same thing. I started to study, because we had a medical misadventure. Just going back to Mum's story, she was missed with six hours left with a brain aneurysm, and they said she's having a migraine. So that put me on high alert when we found out that it was. And I went, okay, then I'm going to always pick up things, so I'm going to be hyper-vigilant. And I had no medical background, but I've got a good brain, and so I started to study, and I studied and I studied, and I haven't stopped studying, and I study every day, three or four hours a day, because I don't want to miss anything.

Lisa: I now work with a lot of people, and I have them — you need to trust yourself, to study, to understand, and to be hyper-vigilant, because as you say, you get people like that. And I've had a lot of medical professionals like that who just wanted to write them off. They don't care. This is not their mum, this is not their dad, and they are another statistic, and they're on to the next one. And so you've got to understand the limitations — that they're overworked, they're tired, they're under-resourced as well, and then they have strict limitations, and a lot of them have institutional ways of thinking, a very narrow way of thinking, that does not

Lisa: ...take anything into account that is outside of their narrow pharmaceutical view. That's my very strong opinion, and there are the goods and bads of that. They're brilliant at things like surgery, brilliant at things like drugs and all of that. But a lot of these drugs cause massive nutrient depletions, a lot of the illnesses cause massive nutrient depletions — like the vitamin C, like thiamine, like magnesium, like these things that are crucial if that person is going to recover. And then there is this whole systemic problem because of the legal side of things as well. So you're fighting not only the illness or the thing that the person's fighting, you are fighting against all of that to try to get them to survive this.

Lisa: And so, by empowering — I've worked with a number of people whose loved ones are in ICU dying and they've reached out for help, and we lose most of them. We've lost a lot of them. We've been fighting for vitamin C, we've had lawyers, we've had professors, we've had the clinical research, we've had things, and nothing happens. And you are fighting up against the clock — this person is dying in front of your eyes, you've got to go hard. And to me it's just wrong. It's morally wrong, and the system needs to change.

Lisa: So I now try to work on the positive side of prevention, prevention, prevention, prevention, so you don't get there. Unfortunately, things can come out of the blue like your dad's. You can't prevent everything. We can lower our risk factors, but you can't prevent everything. So understanding where you're at, and understanding there are people like that nurse, or doctors, that have a very arrogant point of view: you're a loved one, you have no medical background, you're probably an idiot — and they treat you as such. That's got to stop.

Aleisha Pienaar: And it's important to know that you one hundred percent have the right to ask for different people to care for your loved ones as well. We went to the charge nurse and we explained that situation and we said, we don't want this person looking after my father, and they were obligated to get someone else, and it worked. We have made some great relationships with a few of the other nurses there. Every now and then we'll still stop in at ICU, because they need a positive story as well. They need to see someone who has come through, see someone they have helped. So we'll stop in so that the people can see who they save when they put all their effort and their love into it.

Aleisha Pienaar: And another thing that we did and we pushed for — okay, it's probably a bit more personal, but I insisted that I have the right to decorate his room in a way that could help him recover. And so I had positive quotations on the wall, I had pictures of his family, I put it all up so that when he's lying there unable to do anything, he's seeing what he's fighting for. Because at one point we all had to go back to life. My mum had to go back to full-time work, my sister had to go back to Auckland, my husband wasn't able to keep caring for the children full-time, and I couldn't keep being at the hospital. It would be different if it was a home setting, because they could be around at the same time. And so we all went to life as normally as possible, and he was alone for hours of the day, and there's no one to look after him except the one nurse who's keeping an eye on his observations. So he needed something to remind him what he was fighting for.

Aleisha Pienaar: And it's been incredible to see the recovery since then. He lost a significant amount of muscle mass while he was stuck in the bed. One of the things I started noticing, similar to what you pointed out, was that drop foot with your mum. And so I would do the exercises — we did some exercises with him. And because my father is really tall as well, he doesn't fit on any hospital equipment, he's too big for it, and so it was even more so that you could notice things. And they don't notice those little things because they're so much focused on the more life-threatening things.

Lisa: Yeah, they're focused on hearing the ringing bells. They're not so focused on watching the little differences.

Aleisha Pienaar: So my mum and my sister and I went in, massaged feet, we would do everything we could just to keep him in a good space. And then when he finally had his trachy and he could communicate with us, the amount of gratitude he was able to communicate, it just warmed our hearts. And so he still, sometimes, doesn't realise how big the entire event was. He doesn't realise it at all, because a significant portion of his memory is interrupted with everything. He had some hilarious hallucinations, Lisa. He had some real crackers.

Aleisha Pienaar: But he's working now, he's full-time working again, he's able to look after himself, he's exercising. There are still complications that we have to deal with. A part of his left ventricle is no longer functioning in his heart, and he has about a thumb-size blood clot that's sitting in there because of it, and so they've got to keep him on various medications and things. But we've gotten him onto a vitamin regime, we've gotten him onto an exercise programme that works for him that doesn't overtax his heart. He's now got an Apple Watch to keep track of everything as well, so that you can see where everything's happening. And he's functioning one hundred percent. He's playing with my daughters, he's a hundred percent himself, and even better, I would say, coming through that. And I'm so grateful for it, because I know, like you say, Lisa, the majority of the stories don't end happy like that.

Lisa: And because you fought so hard, and he fought so hard — and I'm sure that the rehabilitation process was arduous, difficult, tough for everybody involved, for him. I know that, I live it every day. But he is back with his family, he's there for your grandchildren — you know, all these beautiful things that you get to now live and experience with him, because you fought.

Lisa: And this is the message that I want people to take away from today: don't just leave it up to other professionals. Be hyper-vigilant. Do all the extra things, like you said — touch and massage and watching for changes in the body, because you were there for hours and hours on end.

Aleisha Pienaar: And I would pick up things that they weren't picking up. I would notice when something was going awry, because they can't — they've got a thousand other patients that they've got to deal with.

Lisa: And research. Like drop foot, something that I've had to deal with for now still — Mum's foot doesn't work properly. If I had known about drop foot, I could have prevented that whole drama from the very beginning by doing the exercises earlier. Unfortunately, I didn't pick that up until, I don't know, year two or something, that that was such a thing. So there's little things like that.

Lisa: It's a very empowering story, Aleisha. I'm just so glad that you are so beautifully sharing this with us, because it'll help other families, other people in this sort of situation. And life is precious. Once you die, that's it, forever. You don't ever come back, right? And that concept of forever is sometimes hard for us to grasp when we're tired, we're stressed, we're being pushed into a direction. And I still have nightmares and I still have trauma from the experiences that I went through, and I still have moments of, why did I let them take him off life support, even though intellectually I know that at that point I did not trust the people in ICU any more. Not when they believed that he was gone. They also believed that my mum was gone, and I was told over and over again, she's never going to have any quality of life, put her into an institution.

Lisa: And just like you, I knew that if I could get her home, surrounded by her things, her loved ones, her memories, her photos — on some level, even though she was massively brain damaged and not much over a vegetative state, that she would understand on some level that she was loved and that she was wanted, and that she would have a reason to fight. If she was in an institution somewhere, stuck in a corner, where the hell would you fight? So she had that, and that did help her come back, and the familiarity of things, and the fact that we were there focused on her recovery. And it put a massive, massive strain on the family.

Aleisha Pienaar: But discomfort is worth it in the end, isn't it, Lisa? Because the value of whānau outweighs everything else. When we got my dad home, the recovery was long, but my daughters, who are two and four now — they were one and three at the time — they were aware of all these things. I would tell them, oh, it's important to pick up your toys, and my eldest would say, oh yeah, we don't want Grandpa to fall. They were able to take part in his recovery, because we ended up moving in with him for a few months just to help out while he did that. And it was just incredible to see that family dynamic grow. So I definitely think as soon as someone is able to function without all the extra equipment, get them home, give them a strong environment that is familiar to them. Maybe make some changes to make it safer, I guess, you know, you have to make some changes. But then when you have that family, and you see what you're fighting for every single day, the recovery shoots up. The acceleration of his recovery went up significantly as soon as he got home.

Lisa: And, you know, look, over there's Mummy with her horrible-tasting drinks and things that she has to have in the morning, but that's a part of her recovery. But she's here with me, and we live that every single day. And I'm just so sad that Dad wasn't — I don't feel like he was given the best chances of survival. I take my hat off to the surgeons, the surgeons were absolutely amazing, but there were some other things that weren't good. There were some really good doctors and there were some ones that — I had one doctor come in, this is when I'd finally got one vitamin C, and he came in the next morning and he just sat at the entrance to the room and he goes, oh, the old bugger is still alive, and I thought he'd be dead by now, so I told the doctor not to come in for the vitamin C. That's the sort of thing that was going down. And he said that in front of my father, in front of me, and I had to go and fight to get the doctor back, who couldn't come for another day. So that type of doctor should not be there. Unfortunately, we have them. And that's why it's so important.

Aleisha Pienaar: I think when I talk to medical students, I just talk about people skills, you know, really making people skills — look at it from the perspective, yes, you can't allow yourself to be emotionally involved in every patient you deal with, that's true, but consider from a logical perspective what they're going through and what their family's going through. And my husband is a nurse himself, and he's had to face these things in his practice. He's faced the same limitations of what he can and cannot do to help people. So I mean, we have to have grace for them, like you say, for the doctors, because some things — the legal system is an issue. But then there are some people who really just need to learn that it's more than just a body in front of you. It's a person, and it's a family, and it's a whole lot more than that.

Lisa: And thank you, you've been so generous with sharing your very deep story today, and I really appreciate your openness. My love to you, your dad, your mum, your kids. I'm just so glad that we got to have a little bit of a piece of that journey, and I feel that that sort of helps me emotionally with getting over my dad's passing, because I feel like he's had a little bit to play and Mum's had a little bit to play in the story. So thank you for sharing today, thank you for reaching out, and it's been a real privilege to spend some time with you this morning.

Aleisha Pienaar: Lisa, so thank you. And thank you for sharing your story — that started it all.

Lisa: Yeah. Thanks, Aleisha.