Paul

Carer’s story

Congenital heart disease

Heart attack

When your best hope is a heart transplant

First there was an undiagnosed heart attack. Then, a trail of treatments with either limited or debilitating outcomes. Finally came one last hope… and an agonising wait.

Paul was born with a hole in his heart. At the age of four he had an operation to repair it, and by the age of nine he was given the all-clear on his heart and the go-ahead to play sports for the first time.

He took to hockey straight away and by the time he was 19 or 20 he even played rugby for a couple of years. He went on to get married, have two children and a successful career in the tax sector.

At the age of 50 he went for a regular check-up at his doctor’s and everything appeared fine. By the age of 53, not much had changed except for some stress that was noticeably building.

On the day of the Melbourne Cup, 2011, Paul went out for a couple of celebratory drinks – literally “a couple”, he says. He went home and had something to eat, but later that evening had an episode of violent vomiting. 

“I didn’t feel too good afterwards, but (the next morning) I got up and made myself a cup of tea and sat down and sort of said to my wife, ‘I’m not going to work today, I just don’t feel so well.’ I said, ‘I think I’ve got this bug that everyone else has got.’”

Paul went to see his doctor a day later and was told to take a couple of extra days off. By Friday he planned to return to work, but was still “feeling odd”.

“Over the weekend I noticed that my chest became quite congested and I sort of thought ‘that’s really odd’ because it happened so quickly.

“I went back to the doctor the following day and explained that I’d had a very congested chest and he then began to try and treat me for pneumonia, which I probably had, but I didn’t feel it was the real issue. I became quite convinced that I’d had a heart attack at that stage.”

Heart not checked

Paul’s doctor did not test his heart. “He kept saying to me, ‘Your heart problems that you had in 1964 are nothing to do with this and it is actually a pneumonia issue.’ Didn’t run any tests for the heart at all, which I thought was odd, but he didn’t and then proceeded to put me on – I think – a series of antibiotics.” The antibiotics worked for a little while and then Paul changed them, to little improvement.

By Boxing Day, Paul admitted himself into hospital and was told he might have undiagnosed asthma and was put on prednisone. He was told he’d feel fine within a couple of days and should be “bouncing off the walls”. 

But Paul wasn’t bouncing off the walls. On January 2nd he took himself back to hospital. “The doctor actually examined me out in the waiting room and said to me, ‘I think you may have had a heart attack. If I could, I’d admit you straight away, right now, but we have to wait for the emergency doctor, the registrar, to see you.’

“So I got fast-tracked through to the registrar and they confirmed then that I had had a heart attack.” The night of the vomiting was when Paul believes it happened... 

Treatment begins

Paul ended up spending three weeks in hospital – initially in Whangarei and then Auckland – while a suitable drug regime was sorted. But as early as three or four days in, his fate became clearer. The damage to his heart was apparently so severe that, even at that stage, the cardiologist at Whangarei Hospital thought his only course of action – in the long-term – would be a heart transplant.

It was a bitter pill to swallow. “I was a bit sad that I hadn’t been a bit more savvy with what happened initially. And I shouldn’t have basically mucked around and I should have gone in (to hospital) straight away, I think, and made myself a bit more forceful about it.”

For the time-being Paul was treated with angioplasty and a stent, and sent home with medications including Furosemide.

After a month’s recovery, Paul was back at work, full-time, by February. “I was fairly weak at that time and I remember having to drive up for an interview in Kerikeri, from Whangarei, and I was in pretty bad shape, but I managed to do it.”

Gradually, however, Paul found his confidence returning and even his health improving. His ‘ejection rate’ increased from 20% to 36% and he found himself striding along the golf course instead of his mind dragging his body along.

Though he told his doctor about these improvements, his doctor increased his medication. “It turned out, that was entirely the wrong thing to do. Because I was beginning, as I say, to feel quite good and then after that it was irreversible and I ended up just going downhill again.”

By 2013 Paul’s health had deteriorated and he was fitted with a pacemaker. It didn’t stop his heart from racing though. He was given Amiodarone to slow the heart down, but Paul had a reaction to the medicine and ended up back in hospital for a week.

“There were signals in the heart that weren’t being picked up by the pacemaker and they couldn’t guarantee that it wouldn’t happen again, so they decided at that stage that I was a good candidate for a heart transplant.”

The waiting – and even more operations

Now on the transplant list, doctors decided to increase Paul’s beta-blocker dosage: his health continued to spiral down. 

“I went from being quite active and walking to being very inactive, very quickly, and within about 10 days I couldn’t do anything.”

All of this meant yet another surgery for Paul – this time to implant a left-hand ventricle assistance device (LVAD) – essentially a mechanical heart pump which would keep Paul’s heart ticking until his transplant. Unlike a pacemaker, an LVAD is connected by a cable (or driveline) to a battery pack worn outside the body.

Paul remembers waking up from that 12-hour operation and, during the transfer, hearing hospital staff refer to him as ‘Paul from Middlemore’. “I remember trying to tell them I wasn’t from Middlemore, I was from Whangarei, and apparently I suffered another heart attack then – being quite stressed about where I was supposed to be from.”

Paul describes the ‘Middlemore’ moment as one of the things they see the funny side of now. “When we hear from Middlemore, I always say ‘I’m not from Middlemore!’”

There was more trouble to come though. After the LVAD operation, Paul had a rupture so was taken back into theatre for a further four-hour surgery. “And I managed to still stick around after that and recover,” he says.

“I wasn’t the happiest of patients at one of those stages and then it was just rebuilding my life from there.”

Paul spent three months in Greenlane Hospital – a difficult time in which both his parents passed away. “My mum died at the beginning of September and my dad at the end of September, and I was let out to see them off.”

Paul became house-bound for the next 12 months – his usual life and routine usurped by the single-minded focus of staying alive. The wait for a heart donor, he was told, “could take anything from a couple of days to up to two years”. But nothing could have prepared him for life attached to a 2.5 kilogram battery pack that kept his heart pumping.

Even when he was sleeping “it was a curse of a thing”.

“You had to strap it down because if it moved during the night you could rupture where the wire went into your stomach. That was a very tender point and a very sterile area so that had to be looked after intensely well.”

Paul couldn’t be alone with the LVAD, so Donna left her fulltime job to stay by Paul’s side 24 hours a day. “It was pretty traumatic, but it was really important to do,” says Donna.

Rather than feeling their lives were on hold, however, Donna felt that through the journey, her and Paul grew stronger.

“I suppose, in marriages, sometimes you grow apart, you start doing your own things. But it was a time where we grew really close together and it’s helped us through some really sad things that have happened in our life since then.

“One of the times I recollect, it’s really weird, we got told we had to get out and get back into the community when Paul had the LVAD, and we were frightened. So we went and sat and watched the planes land at Auckland Airport from a viewing site and just enjoyed seeing different people around us. And another time, sitting at Mangere Bridge watching children fish, those sort of things were really special moments for me,” says Donna.

In Paul’s last six weeks on the LVAD, he started declining, says Donna. Everyone around them, including staff and friends at Hearty Towers – a rehabilitation unit for heart and lung transplant patients at Greenlane Hospital – was aware that he was going downhill. One of the many friends they’d made at Hearty Towers, Daniel, who’d also been on the LVAD, did not make it out of his transplant operation. “It was a very difficult time for us, we found it really hard.”

But then finally, one Sunday, came the call. After one year and 20 days on the LVAD, Paul heard the phone go and immediately thought to himself “that’ll be Greenlane”. Donna answered it. The coordinator from Hearty Towers first asked if Paul was available to come to hospital, and then offered the good news: “We have a heart ready for him here.”

The heart transplant

Paul and Donna were extra careful on the drive down from Whangarei to Auckland, not wanting to be “run off” the road. “I remember being overtaken quite swiftly by two motorbikes and I said to Donna, ‘Well, you know they’re potential heart donors those two.’”

Paul rang his daughter who was holidaying in Samoa and told her his news. “She was able to fly back and see me before I went in for the surgery, so that was really neat.” His son and daughter-in-law in Hamilton also managed to come up before the surgery, and – coincidentally – once everyone arrived at the surgical ward they saw a friend of Paul’s who had just had a lung transplant. “We sort of did these big massive hugs and it was really good.”

The surgery was expected to take 10-12 hours – longer than usual because of Paul’s LVAD and defibrillator which needed to be removed. But it was considerably quicker – just under eight hours.

When Paul woke up on Monday night, he was able to immediately phone Donna. “I had no intubation – that had already been removed – so I was able to ring my wife and tell her I was well. I think she came in fairly smartly after that.”

Apart from developing a small chest infection after surgery and needing his lungs ‘hoovered’, the road to recovery was swift and Paul has not looked back since.

Only a few days after surgery, he could walk without a walker, and then at his first walk test – to establish if he could be discharged – “I achieved the go-home criteria straight away.”

Walking without the LVAD was a relief, though he kept “sort of looking for it” when he’d wake up.

“I did feel really good. You could obviously feel a different beat to the heart, shall we say, because mine was not that notable I suppose, and I could feel a new heartbeat virtually straight away.”

Beating a path to recovery

Only six weeks after the operation, Paul was fit enough to walk up One Tree Hill. He kept making strides and in July 2016 saw in his two-year anniversary since his transplant.

For Donna, as much as Paul, it was a welcome milestone. “Once you’re past the two-year anniversary you’re quite grateful and you do a really big heavy sigh. You come out of there with a lot less weight on your shoulders.”

With that milestone came Paul’s last angiogram. “So all he goes down for now is bloods and an ECG if they require it,” says Donna. “His colour’s really good, he looks good, people take a second glance when Paul says ‘I was transplanted’ and he walks faster than I do.”

To stay as healthy as he does, Paul takes extra precautions all the time, says Donna. “If there’s a virus or vomiting bug….we’ll ask people to stay away from us because we don’t have the same ability (to fight it). He’s on a lot of medication – rejection medication – so that’s really important that we take care.” She adds that they don’t eat out very often, due to the risk of food poisoning, and that Paul’s chosen not to drink alcohol due to the medication.

“We’ve found it hard for some of our friends to understand what we’ve been through, they seemed to think that we could just get back into life and start where we ended off. And you can’t… I can’t. Too much has happened and so I don’t feel I could ever be that person that I was, I’m a little bit different.”

Despite the hardship of the past few years, Donna describes her life now as fuller. “I think I appreciate life; the small things they don’t matter anymore.

“I’ve changed, I love my life and I love where I am now. It’s given me a purpose, it’s made me appreciate a family that I don’t know and a gift that I never realised would be so important,” says Donna in reference to Paul’s heart donor.

She says there were staff at Hearty Towers and other transplant patients who shared their journey all the way along, and with them they’ll always have a bond.

“Our transplant people we met, they became our family and so the connection we have there, the understanding that we have of each other, is something that our real friends in our outside world don’t quite understand and never will understand. We’d be just sitting in the lounge and to see each other was enough. We didn't have to say anything to each other…. Our grieving was together and we shared it, we got through those hard times with our friends at Hearty.”

Paul and Donna wish to add their sincere thanks to the donor family and to all the staff at Greenlane and Auckland Hospitals.

Shared February 2017