Tumour causes heart attack

Feeling like a fraud, speech and language therapist Annabel went to get the ‘vague heaviness’ in her chest checked out by a doctor. Tests showed she had had a heart attack. Further tests showed that the heart attack was caused by a tumour inside her heart.

Annabel was out jogging with her regular jogging buddy one day last August when she ‘lost her puff’ after jogging up some stairs.

“I said to my friend, I don’t think I can run up this hill anymore. I just felt a bit weak, and a kind of vague heaviness, a bit of an odd feeling in my chest. I could easily have ignored it.

“Looking back on it, if I was to say what the key learning from my story would be, having had that experience of having a heart attack, it was how mild it felt, it felt like nothing.”

Annabel walked home. A fit and healthy 45 year-old, she had never had similar symptoms before but because she’d felt the sensation centred in her chest, she was aware that it could be heart-related.

“I feel like maybe I had picked up on some of the messages that I had seen from the Heart Foundation around heart attacks. Subconsciously, I just felt it was something to check up on.

“I wasn’t thinking I’d had a heart attack but that it was possible, so let’s go get it checked out. Don’t ignore it.”

Annabel’s husband took her to the local medical centre, where an ECG showed everything to be fine. The staff told her to do a blood test, and sent her down to the hospital – by ambulance. “You feel like such a fraud in the ambulance, but I guess that’s what they do.”

Her husband stayed home to look after their daughter who was sick with a cold, but kept in touch using video-chat on her phone. In the emergency department a second ECG showed changes, “and then it was all go.” An angiogram confirmed that Annabel had had a heart attack.

Finding a cause

Friends and family who came to visit Annabel in hospital couldn’t believe she had had a heart attack, and kept repeating the same thing – ‘but you’re so fit’. 

“My husband did a good job. He had to deal with his shock and horror and look after our two kids. Friends started doing baking and delivering meals – people were amazing. Mentally, it gives you a boost when people help out and reach out and do things for you, it’s lovely and so appreciated – it sounds kind of cheesy and glib, but it’s true.”

Initially the doctors thought the heart attack may have been a spontaneous artery dissection (SCAD), but when Annabel was sent for an echocardiogram the next day there were surprising results. “There was a shadow on the aortic valve, so that was something new...”

“I had to wait until Friday to have a transoesophageal echo (TOE), and that found this tumour. So I went from the shock of maybe having a bad luck heart attack to having a quite rare heart tumour in a really bad place, on my aortic valve.

“A bit of the tumour had broken off and floated into my blood supply to cause this heart attack. But it could have been worse if a larger bit had fallen off, or if it had chosen to head off toward my brain to cause a stroke.”

Breaking the tension with laughter

Annabel was in hospital for sixteen nights in total. “Going through it, the most horrible bit was waiting. Waiting to hear the full diagnosis, waiting to hear what the plan would be, waiting for the surgery and then on the actual day waiting the whole morning until you had to go off to surgery.”

Visitors helped to keep her mind off the waiting, teasing her that she didn’t need to go so far to get some attention.

“The tumour, it was a fibroelastoma, they’ve got lots of little tendrils. So we called it the enemy anemone, which we thought was funny. The cardiologist and my husband had a bit of a disagreement because the cardiologist thought we were being too glib or didn’t understand how serious it was, but we fully did, that’s just how we coped, by laughing.

“I wasn’t ill, so to be sitting in this hospital suite with a view of the lake, I tried to tell myself it was like I was on a spa holiday, this was like my hotel room, I had a room with a view. It sounds a bit silly, but when as a mother do you get to sit in bed, watch TV, read magazines and have lots of cups of tea? It was an awful time for everybody, but I just tried to think of it as an enforced break.”

Speaking up in hospital

“The day after surgery was awful, I felt like death warmed up. That was horrible to go through. But then they start taking a drain out here, or some kind of sensor you were attached to there, and then every day gets better after that.”

The first – and biggest – challenge in Annabel’s recovery was speaking up about pain management. “I was lucky to have my husband with me to speak up for me. I lost a lot of sleep because of the pain, and I think if you’re not sleeping it takes longer to recover from things.” Once they raised the issue, hospital staff were quick to give Annabel a different and “probably stronger painkiller, which was great.”

However, when it came to discharging her a few days later, the initial paperwork didn’t include the prescription for the medication that had been working. “I think a lot of people wouldn’t query it, they just kind of believe the doctor knows best. But my husband queried it, and we ended up having to wait for another hour while they fixed it before they discharged me.”

Annabel is now a strong advocate for people to speak up, “because I don’t think people always ask the right questions. You have to be quite proactive about that.”

House-bound

Annabel found it was hard to breathe deeply, to cough, sneeze or turn over in bed after her open heart surgery. “They say to start moving straight away, but obviously mobility-wise, you are quite sore for a few weeks.”

Never having been a ‘napper’, Annabel found it odd to have to go for a big sleep in the middle of the day, but found that the need for this faded away over time. She was confined to the house for several weeks initially, and off work for two months.

“I was house-bound. You’re not allowed to drive for six weeks, and it would have hurt too much, I wouldn’t have tried anyway. Even after six weeks I’d end up quite sore after driving, so I definitely felt the limitations of that.

“Having to take medication each day makes you feel like a bit of an old nana, but that’s nothing really. I did a lot of crossword puzzles, read lots of books, and eventually went for little walks up and down the street very slowly. It did feel a little bit lonely at times, but people visited when they could, but it’s a little hard when you’re used to getting lots of social interaction at work. By the end of that time I had really had enough of staying home alone.”

Getting active again

It was a challenge to start getting active again, with walks to the letterbox and back leaving Annabel short of breath to start with.

“I remember one of the first days I walked up to the primary school to pick up my daughter – someone else had been doing that job for me – I was walking so slowly, I was embarrassed. So I got my phone out and pretended I was replying to a text, just to hide the fact I was walking so slowly and was so out of breath, I couldn’t go any faster. These little hills suddenly felt like mountains.”

Seven months on, Annabel was getting back into jogging, and now she’s back to about the same amount of exercise as what she was doing before the heart attack. “I go to a boxing gym and we gave each other boxing fight names, and they suggested that my boxing nickname could be Lion Heart - gives me a good laugh.”

One year on

“It’s coming up to the one year anniversary of my heart attack, I feel like I have to celebrate the fact that I’m through it, and still alive”.

“I think mentally, it kind of helps to put things in perspective and you try not to sweat the small stuff. Just to try and keep calm, and take deep breaths when life throws things at you.”

“It was major surgery, a huge disruption to life, and I really just had to put life on hold for a few months afterwards, but in a way it’s lucky, I feel very lucky because it’s a total cure. I don’t have heart disease. They found it, they removed it, end of story. It could have been a lot worse.”

Having lived through the heart attack, Annabel is spreading that message to ‘get it checked out’. She says, “It may be really minor, but look what happened to me. I had no idea I had been growing this tumour for five or ten years. If you feel anything like I felt, go and get it checked out.”

 

Shared June 2017

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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1 Comment

  • Bridget 28 June 2017

    My sister the Lion Heart! You are an inspiration!