‘A season in my life’

'Aortic dissection' became a well-known term for Janine in 2013 when she experienced the first of three events. After a difficult recovery Janine looks back on her experience and says that it doesn't rule her life.

In June 2013, Janine, who was 40 at the time, was living in Palmerston North with her husband Simon. Simon's father had unfortunately just been diagnosed with terminal cancer and the family was trying to cope with the stress of this diagnosis when Janine had her own medical emergency.

"I was eating lunch at the time, so I thought I had got something stuck." Janine recalls. "I was trying to have a drink with it, but I couldn’t drink or do anything."

Quick thinking colleagues called an ambulance and Janine was taken to Palmerston North Hospital for testing. Janine spent the night in the orthopaedic ward in quarantine pending a CT scan the following day. The CT scan revealed the cause of her pain was an aortic dissection and aneurysm and she was flown to Wellington Hospital for either surgical or medical management.

"My first event was a Stanford type B dissection, going from the descending arch to the iliac about a 49/51 split, so pretty even." Janine recalls, "After a few days in the intensive care unit in Wellington I was sent home and was pretty much medically managed from there. There were no complications whatsoever."

Fast forward to 2017

In the years following the first dissection, Janine was able to live a relatively normal life. Then in October 2017 when she was jolted awake in the early hours of the morning by a sharp pain. Janine checked her blood pressure on a home monitor and noted it was a little raised, but tried to settle back in to sleep.

"The only difference from the first dissection was I had pain behind both my ears that was radiating up towards my head. It went up my neck and behind my ears. I also had that thing where I couldn’t lie down again, it was too uncomfortable. But I did go back to bed and I fell asleep again."

When Janine woke up again a couple of hours later she told her husband what had happened and made a doctor's appointment for that morning. At the appointment, the doctor was concerned because of Janine’s history and sent her back to Wellington Hospital. A friend drove her to Wellington emergency department (ED) and 90 minutes later, Janine was in surgery.

"I'd had a type A dissection, which had torn my aortic valve, root and arch. So that was immediate acute surgery, and I now have a St Jude mechanical valve and replaced root and arch."

After surgery Janine spent two weeks in hospital recovering with no other problems.

January 2018

In January 2018 Janine was enjoying some time with her mother-in-law at a country music festival in Marton when she noticed another small sharp pain just below her bra line, which made her feel like she 'wanted to sit up'.

The pair left the festival and went home but after a few hours of feeling uncomfortable, Janine went to the local ED. However, the team at the ED were reluctant to do a CT scan so soon after a routine scan only a couple of weeks previously. She was discharged, and Janine’s husband drove them back to Wellington. 

Once the couple were back in Wellington Janine’s pain became unbearable, so they went to Hutt Hospital, where she was kept in overnight pending a CT scan.

The next day the CT scan revealed a significant change in her type B dissection (the first dissection from 2013).

"I had split my aorta in two different places. My type B descending now had triple lumens in two different places – so in two places it became three channels."

Janine was immediately taken to Wellington Hospital for surgery.

"I was told by the ambulance drivers in rush hour traffic that if anything happened they wouldn't be able to save me on the journey. At the hospital I was kept in the cardiovascular surgical ward, who monitored me until they figured out what to do. They hadn't encountered many cases like this before, so I was there for three weeks before a surgical outcome."

Surgeries two and three

"The event happened on 20 January, I was admitted to Wellington two days later and I had my first operation on 14 February. We had to do a two-stage process. The first stage was a graft for the full arch and a frozen elephant trunk. Then from there, the second approach was vascular, which was through the groin. That was a stent joining the frozen elephant trunk to mid abdominal and I still have the triple lumen at the bottom. So, we’re stable now, the doctors are happy with what they see but I’m monitored every six months."

Unfortunately, during the first stage surgery, some damage was done to Janine’s vocal cord and as a result she had no voice or breath control for several months due to vocal cord palsy.

"Initially my volume was nothing, I couldn't talk. But after a few days and weeks I could say two words to a breath and then I ran out of air. It was very exhausting. Everything was very hard to do. I also had problems with swallowing, so I could only eat a couple of bites per meal for six weeks."

"Talking is my main coping strategy, when I lost that the only people I wanted to see were Simon and my two brothers. They could read my expressions and knew what I needed without me saying anything. I isolated myself, I didn't want to see anyone else. It was hard and it took a long time to get that back."

Janine became the resident patient on the ward and after being very well looked after by the team at Wellington Hospital during her recovery, she was allowed home on 10 April.

Road to recovery

"One of the nurses up at Wellington Hospital said to me recently that she thinks part of the reason I recovered so well from the whole ordeal, is that I remained positive. I think most people would tend to say I'm a positive person. You have moments and there are times when you have to have a two-minute pity party but actually, I've got it pretty good. I’m here. Yeah, I tick (the sound of the mechanical valve), but that’s ok."

For anyone else in a similar situation, Janine encourages them to listen to how their body feels and not to push it.

"It's ok to take a rest. You don't have to be running marathons. I know there are people that do and that's really cool, but you don’t have to be a super person. The other take home is be involved in your own care. If those doctors aren't there to speak for you, you need to speak for yourself. Make sure your partner knows everything. I have my medication listed, written down in my medication case so if I can’t speak for myself my husband knows exactly where it is."

She has returned to work full time and recently visited her cardiologist to discuss getting back into doing some exercise. She has since discovered water walking and attends a weekly class with a friend. Janine is also a regular at Toastmasters (a public speaking group) and recently did a speech about her surgeries.

'A season in my life'

For Janine, it is helpful to remember that what happened to her is just a "chapter in her life".

"Each stage is just like a season and seasons change. So if you just keep going, you will get to a new season and you will get to a point when it is no longer ruling your life. It is just a season. Just a part of your life. If you'd asked me last October if I’d ever feel as good as I do now, I would have laughed at you so hard. I didn't think it could get any better, but actually you keep going, keep moving and keep putting one foot in front of the other and recovery happens."

Janine wrote this poem on 16 June 2018 during her recovery.

Most people say I'm Strong
But I can't see it.
When I’m out of breath doing simple things,
They can't see it.
You look fantastic, they say,
But I don't see it.

I live in hope, fear and frustration,
As well as love.
Hope all will be alright,
Fear that it will all just happen again.
Frustration that this is as good as it gets.
But those who love me, remind me,
It is just a season in my life.

I know I'll get through this.
Your love & Support,
& a pinch of that strength
You all think I have,
Will get me through to the next season in my life.

 

Shared October 2019

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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