Robyn

Cardiomyopathy

Heart failure

Waking up to cardiomyopathy and more…

Robyn woke up one morning and had no idea she was in Dunedin Hospital nor any recollection of how she got there. Here is an abridged version of her story as told to the Heart Foundation in an interview.

“At first, there were many, many chest infections, fortnight after fortnight. I was at the doctors twice a month with chest infections and then, I think, I’d lost the will to sort of… live.

“I just used to go home and sit and eat and drink all the fattening stuff, all the fizzies and lollies and biscuits and of course my weight ballooned. From then on, I just went downhill. I woke up one morning and I didn’t know where I was, and I was in Dunedin Hospital, where they drained seven litres of fluid from around my heart and lungs.

“Nicki (my daughter) had called the ambulance to come for me. Apparently they kept me in overnight and transferred me to Dunedin the next morning.

“So Wednesday, Thursday, Friday of that week I really don’t remember much. Although they tell me I gave the firemen a bit of a hard time about coming up to my house with the sirens going. We as women always think ‘oh yay, I’d love to be carried somewhere by a big burly fireman – I got that, but I can’t remember!’

“I ended up on the floor and no one could pick me up. There were two ambulances there at once and none of them could lift me up. So that was when they called the fire brigade.

“And then they flew me to Dunedin by helicopter. Apparently I didn’t get all the way, they had to transfer me over to the ambulance. I don’t know why, I never really asked, because it was always on the bucket list, to ride in a helicopter – again, I don’t remember.”

Being cared for, but still confused.

“When I awoke, Nicki, my daughter, did ring and I think all I said to her was ‘where am I?’ But after that I got really confused.

“I was out of it, kept seeing things, all sorts of things. And my son rang one day and I said to him, ‘Gosh this place is pretty out of it.’ Because all I could see was things floating around and dolls sitting up and floating and this was what they put down to the lack of oxygen. As the days went on, that got less and less.

“After I told them that I kept seeing things, they had to do some quick changes. I ended up in the respiratory ward and there I spent two weeks getting better. I think I was pretty much a loner there. And as you do, you sort of go down and wallow in self-pity for a wee while. Then one of the nurses came along and just told me how it was and I needed that kick, otherwise I probably never would have got up and kept going. I can’t even remember her name to say ‘thank you’. Whatever they gave me wiped it. Which is a bit frustrating.  

“The doctors gave me pills for this and pills for that, and then I got infections and then I kept seeing things. One thing I wasn’t though, I wasn’t in pain. They kept asking me several times a day, did I want a Panadol, but no, it wasn’t pain.

“Sometimes I do think, well, was I meant to be in pain?? I got the message from them that I was very, very lucky to be alive. If they had to bring me back again though, I would not survive. And that sort of shattered me a bit... 

Finally, a diagnosis.

“It was two or three days before they actually told me what had happened, and it just worked out that my whole body collapsed – that’s probably about the best way to describe it. Everything stopped working. Congestive heart failure, Type 2 pulmonary failure, and yes I come with all these other little extras like COPD (Chronic Obstructive Pulmonary Disease) now, with my asthma.

“I hadn’t been an asthmatic up until eight years ago. With the collapsed part of my lung, they decided that it was a virus. So yes, I was left breathless, shattered, wondering however was I going to survive?

“I always think I got the death sentence, because I didn’t smoke, only have the odd drink, and normally I’m a healthy, on-the-go person. And I get lumbered with all this. So life hasn’t been easy. In fact it’s been terrible. And I have often thought of suicide. Because no matter what I did, I just seemed to get something else.

“And then they decided to tell me that I was a CO2 retainer, which took a bit to understand but I totally do now, so I learnt that I was no good for anaesthetics and I don’t think I’d been operated on before. That left me wondering later how I would get my knees replaced, so it was certainly a learning curve.”

How her recovery went

“I’d been in hospital for two weeks and then my son came home from Australia – once he got home I perked up and then they discharged me. And as the time has gone, I think every day I’ve learnt something.

“I had to sort of go back to learning how to walk properly. I couldn’t get upstairs or down, and I panicked… I certainly lacked confidence. I couldn’t walk very far, otherwise I would have collapsed.

“And once I got home I sort of shut the doors behind me and then would stay there for many weeks. I just didn’t want to go out, I didn’t want to see anybody. I was scared they were going to laugh at me.

“Because it has affected my memory. I’m not remembering lots of things. I’ve tried, I’ve spent a lot of time trying to go back, but it’s best left back there now, I think.

“I’ve had numerous, numerous trips backwards and forwards for check-ups and they are still quite concerned about my lungs. But the heart man told me at the beginning of the year that I was down to a yearly visit, but the lung man is still six months.

“Emotionally, I go through different phases. I am scared of dying, I have decided. And I’m very aware of anaesthetics, so I can only hope that me and hospitals don’t see each other for a very long time. I just have to get it together and move on. And I think this is possibly why I’ve decided to tell my story – that perhaps I need to stop feeling guilty and stop being so hard on myself, to get rid of it.”

Family support is a lifeline

“It’s certainly been a wake-up call for not just me, but also my kids. They now appreciate their mother more than what they did. Both of them had to wake up a bit and think ‘well hey, mum is not always going to be there’.

“I go back to my granddaughter, China, who is 11 going on 16. She has vivid memories of the firemen trying to pick me up and put me in the ambulance and also of coming to see me in Dunedin Hospital. I was unconscious with tubes in and out and that’s one thing she always reminds me of. She remembers ‘it made mum cry’ because she’d never seen mum cry before.

“Support-wise, my kids have helped me more than anybody. And I am still close to one of the other patients that I met in hospital, even now.

“I lost my partner four months before this all happened. He died… and I do wonder how I survived. But yes, four and a bit years since my collapse, I’m still alive and keep getting new lists of things to deal with.

“I’m not sure Nicki knows how to handle mum when she’s down, because I tend to just shut off and only speak when I’m spoken to. And it’s no good reaching out because there’s nobody out there to go to. That’s where I’ve hooked into a Māori lady – I always call her T – and she keeps an eye on me.”

Other forms of help in times of need

“You’ve got to have money to go to a counsellor. You are subsidised to a point but you still have to contribute.

“When I was really bad suicide-wise, desperation drove me to a chaplain who used to be at the freezing works when I worked there. I’d just had enough. I mustn’t have wanted to die because I made the reach out to him, and he kept me together, gave me things to think about. And it’s probably thanks to him, and my kids, that I’m still here.

“The physios helped me enormously and the asthma lady at the hospital was absolutely amazing too – I can’t speak highly enough of her. I’m just so thankful to her because she knows how I work now. She knows I’ve got to be doing things like exercise, to help my head, and she knows what happens if I don’t – and I didn’t even tell her this!”

Exercise is part of recovery

“I should walk more than what I do. But I do swim and I do Tai Chi when I can – I love it – if you can love a sport. I’ve actually taken on meditation, and I ride the exercycle at the hospital for 25-30 minutes, two or three times a week. By the time I get home, I think I should go for a walk but ‘can’t be bothered’ comes into it.

“In Dunedin they gave me the message that I’ve got to lose weight or I’m going to die. So it was a short, sharp, real kick, which I needed, and I think in four years I’ve lost about 30-35 kilograms. So it’s been a lot of hard work and I think especially in the last year, perhaps with fixing my knees, I have got more physical.

“I’ve also created a mini-garden, (but) because I really can’t get out there and dig I’ve created it in pots. So I love pottering around outside now, but it’s getting over the ‘can’t be bothered’ bit.

“I doubt I’d ever be able to go back to – and certainly wouldn’t be able to do – a full-time job. And part-time, well nobody’s going to employ me part-time.”

Frustrations with returning to normal life

“A lot of physical things have come up. Carrying the washing in and out, pegging it up on the line. I can bring it in, but between walking from the house over to the line and back, I’m out of air by the time I get back.

“Pea straw – I had pea straw for my garden and I couldn’t lift it out of the back of the car and I thought ‘Oh my God, what am I going to do now?’ The young guy next door came home, got them out for me, and threw them over. But it’s so hard having to know that I can’t do it… and it’s just so frustrating having to wait for someone.

“I do a lot of cleaning now with a seat, like if I’m in the bathroom or at the sink I have to sit down. The kids have got stools in different parts of the garden, so I can sit. But I think it’s more the back pain at the moment that’s getting to me. I went to the physio today and she said, yes, my lower back was very stiff and I thought, yes, that’d be right, more arthritis. It’s just so frustrating.

“You know, for the last four years, it just feels like I’ve gone downhill. Sometimes I think ‘oh what’s the point’ and I wallow in it for a wee while and then something inside tells me to stop my rubbish and to get up and get out there.

“So it’s been a battle, but health-wise now I’m pretty good. Bone-wise, well, I’ve got good knees – that’s about it. So yes, it just comes back to looking after myself and doing what I should be doing, not what I shouldn’t be doing, including looking after my mental wellbeing.

“I’ve been given that second chance at life again so I’ve got no intention of ending up back down there, because I know that I won’t get out… and I don’t feel like dropping dead just yet. Not now that my little grandson is on this earth. He’s made the difference to our family. It’s been amazing, we all want to babysit.” 

Shared February 2017