Keep on Keeping!

It’s been 4 and half years since my life changed. 4 and half years since I was diagnosed with a heart condition while I was 37 weeks pregnant with my littlest baby.

That moment of my life, without a doubt, was singlehandedly the most frightening I’ve ever felt. Hearing the words mortality, rupture, open heart surgery, ICU, was like living a nightmare. I was about to become a mum for the third time and while I should have been embracing the moment, I was scared out of my wits as to how it would all end….But thankfully with the support of an amazing family, wonderful friends, the best cardiologist I could ask for and the strength that all of this provides for me to keep on keeping, I’m still here to tell my story!

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This week I had my annual heart scan. This past year has been a very busy one. Between work, the kids education and sport and the busy day to day chores of life with 3 kids, how can life not be busy. We travelled to the States where my daughter decided to split open her head – cause that’s not going to give your heart a scare! Our son was diagnosed with anxiety, OCD and a motor and vocal tic – that’s enough to raise my blood pressure most days! I trained for my first half marathon and to date have run 2 now – this was always going to be a question of is it too much?

But after lying there, feeling sick to my stomach like I always do during my scan on Wednesday, it was so delightful to hear my results hadn’t altered since my last scan. Yippee!!! I was so relieved. It’s always the fear of the unknown with my condition. You just never know. Although I look and feel fantastic on the outside, without that scan who knows what’s happening on the inside. What deteriorates my condition is high blood pressure and thankfully mine is always low but you just never know!

Last year’s scan, for the first time since diagnosis, there was some deterioration. It was only slight but it was movement. I was taken back to all the emotions I felt when I was first diagnosed – scared, overwhelmed, anxious, timid. But that was my scan after I lost my nana – that movement was clearly from a broken heart;(

My aorta is now dilated to 4.6cm. It’s still just sitting in the moderate range as severe is 5cm and I shall do everything in my power to maintain this to avoid open heart surgery. Each day I make conscious decisions on my food intake, I exercise 5-6 times a week, rest when I can, sleep as much as I can and do things for myself that make me happy!

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Next month I see my cardiologist to discuss my health and any further plans that need to be made. But for now I will keep on keeping. I will enjoy the small things in life. I will laugh out loud when I need to. I will remain as calm as I can when I really want to rip someone’s head off (lol). I will appreciate what my life consists of and I will be grateful everyday the moment our little angel baby was conceived, because without her, who knows how long I would be on this earth to tell my story!

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I AM the lucky one….

Three weeks ago I had my yearly echo and today I’m finally getting my results back! What a loooonnng three weeks it’s been. Hoping and praying that my results haven’t changed since I was diagnosed with a heart condition two years ago. All I want to hear today is that my aorta hasn’t dilated any further. I’ve worked hard this 12 months to maintain my fitness and weight loss, which gives me the best chance of keeping my blood pressure down. And have I lead a stress free life like I’m suppose to? As much as you can when you are a prep special Ed teacher and mother of 3 children who are 7,5 and 2!

As I sit here in the hospital waiting room I’m feeling sick and nervous. I was hoping that starting to write this blog would keep my mind occupied but it doesn’t completely stop me from feeling worried. I can’t believe another year has passed. It only feels like yesterday that I was here and another year before that, waiting in the same room. As I walked from the carpark to the Mater hospital and through the corridors, all the memories I’ve lived at this hospital come flooding back….birthing my three children, having a curette after my miscarriage, having half my thyroid removed and the biggest health challenge yet my heart! But with each memory lived the door was closed behind me, this door is different, it’s one that will stay open for the rest of my life. The Mater hospital will be a place I visit indefinitely……

Thankfully my name was called out about 15 minutes after I sat down, which was good as it didn’t give me much time to think! As I took a seat in my cardiologist’s office I felt calm and ready to hear whatever I was to be faced with. We had our usual discussion on how my health has been over the past year. He was happy with everything. My blood pressure was perfect and he is extremely impressed with my fitness and overall well being! AND the best news of all my heart is no worse than last year’s echo….to say I’m thrilled is an understatement!!!!!

As I thank god that I’ve made it through another year, I’m also so very thankful that I’m even aware of my heart condition. Each time I visit my cardiologist he reflects with me how lucky I was to have this picked up while pregnant with my third baby. It is unknown how or why my heart’s aorta is dilated, but he believes I was born with this condition and in most cases you are unaware until its too late. At this time of year I’m always brought to tears as to how different my life could have ended up if we didn’t have Mia…my angel baby!

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I will spend the rest of my life kissing this baby for saving me!!

Like so many people who are faced with health complications, some can be fixed and so many can’t. I feel so blessed that my condition is now known and I now have the chance to live a long healthy life! I AM the lucky one. Yes I have to live the rest of my life with a defect on the organ that keeps me alive, and yes I can’t do EVERYTHING I want to do from a physical perspective and therefore I must be extra careful and cautious, BUT no matter how I look at this situation I AM the lucky one and there are far more people worse off than me!

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So where to from here?…The next step in relation to my heart is to have an exercise stress test, to check to see what my blood pressure does while I exercise. Then I’ll be back to the hospital in March next year for my annual echo. I am to keep doing what I’m doing in terms of keeping fit and eating healthy and I have to keep as stress free as I can. I could lye down and not move and rap myself up in cotton wool, but that’s one: not a life and two: not realistic! I don’t look at this as I’ve been given a death sentence, I look at this as I’ve been given a second chance. A chance to take the best care of myself. And I will spend the rest of my life giving myself the best chance to live a long, healthy and happy life with my beautiful family.

Today I feel blessed. I feel like I can keep going for another year. I feel free again for a while. Free to live, free to love and free to enjoy the simple things in life! Cheers to my heart!

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A Surreal Moment in Time!

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My last few days before my nightmare started were spent at my favourite place – the beach!

It’s been almost 18 months since I was delivered the news….”you have a bicuspid aortic valve and a dilated aorta!”……say what!

I was in the third trimester of my 3rd pregnancy when I started experiencing heart palpitations. I remember watching television one night and I said to my husband that I felt nervous like I was about to present a speech to a thousand people! A couple of nights later, I went to bed only to be disturbed by the loud thumping of my heart, to the point where I thought it was going to jump out of my chest! I had a routine appointment that week with my GP who noticed I had an irregular heart beat. I explained to him the episodes I’d been having so I was put on an EEG machine to monitor my heart rate. Nothing serious showed as did nothing serious show in my bloods. I was told to take it easy and come back if anything got worse!

Heart palpitations can be something pregnant women experience so at the time my GP said it could just be pregnancy related. I continued having palpitation episodes so when I went for my 36 week check up at the Mater, my GP wrote a note about what I’d been experiencing. I saw a really lovely obstetrician that day who thankfully was thorough. She agreed that the heart palpitations were probably pregnancy related, but because I’d had two other pregnancies with no signs of them, they wanted to be cautious and run some routine tests.

This involved having an echocardiograph (heart scan) and I had to wear a heart monitor for 24 hours to monitor my heart’s activity! Nothing significant showed up on the heart monitor, but my echo results were a different story! I didn’t have a gut feeling something was wrong, I went in thinking everything was going to be fine. My sister came with me that day. Mum and dad were on holidays and Kane had to work. This day was the beginning of a whirlwind of events……!

The doctor went through my results with me and explained my echo had showed that I had a bicuspid aortic valve when normally it’s tricuspid and my aorta was dilated 4.5cm, 5cm being severe! At first I was shocked that the results weren’t normal like I thought, then there were a million questions running through my mind? What does this mean? How serious is it? Will I be ok? Will my baby be ok?

That day was spent seeing a few different doctors and I was left with differing opinions. One doctor was happy for me to have a normal delivery, but my cardiologist preferred that I have a c-section because this being a rare condition in females meant there wasn’t enough research to support either way! I was told to go away and think about it for a couple of days and come back for a round table discussion with a heap of different doctors in the coming days….what else could I think about now???

I was due to go down the coast for a few days with my beautiful family and nothing was stopping me from doing that! This would be our last family holiday as a family of four and I needed the R n R! The weather was bliss! The kids were having a ball and I was like a beached whale! I wasn’t too stressed over my heart as I knew I was being looked after by the best and they wouldn’t have let me leave the hospital if I was going to cark it on the spot….and then the phone call that changed everything!!!!!

I will never forget this moment as long as I live! One of my obstetricians rang to say they wanted me to consent to a c-section over the phone incase I went into labour over the weekend and the staff needed to assist my case wouldn’t be on! I was hearing words like: aortic valve rupture, mortality, danger, risk, unknown….what the?? I got off the phone and was a mess to say the least! I couldn’t speak. Mum and dad were with me as Kane was meeting us after work. They kept asking what was wrong and I just couldn’t stop crying…the reality of the cards I’d been dealt had finally sunk in!

I wasn’t prepared to make any decisions; one without my husband and two without the advice of the doctors from the meeting that was going to be held! My sister, who is in the medical field, did a heap of research for me and the risks of having a baby via a natural birth or c-section were similar, but again nothing was very conclusive because this condition is more dominant in males. I was left guttered and confused!

Kane and I decided to finish our family holiday and wait to make a decision until after I’d met with all the medical professions involved! I remember the day of the meeting and walking up the Mater Hospital hill feeling sick to my stomach! I walked into the conference room to a round table of various people. The head of the Mater obstetrics started the meeting and I remember sitting there looking around, listening to what was being said and thinking I can’t believe this….these things don’t happen to me, I watch tv shows like Grey’s Anatomy and Private Practice where these things happen, but I can’t believe this is actually happening to me! It really was a surreal moment in time!

I left that meeting with a plan. The plan was that I was able to have a natural birth, but had to be induced two days later, which meant hooked up to machines, they wanted me to have an epidural and an assisted delivery….everything I didn’t want. But even though this wasn’t how I wanted to birth my last baby, what was most important was that my baby and I were as safe as possible. And safe I did feel. When I was admitted to hospital, I never once felt unsafe. I knew that all the top cardiologists in Brisbane knew about my case and were on call if anything were to happen. Between all the doctors and nurses I could not have felt more safe.

The day of Mia’s birth was long and tough. I was hoping when my induction started and my waters were broken my body, who’d been there and done that before, would remember and go into overdrive and things would happen quickly….no such luck! I spent a lot of time sitting around and waiting for things to happen that day. I can’t believe I was getting excited every time I felt pain. I kept telling myself every bit of pain got me closer to meeting my baby. I had so many different doctors coming in and going over the same questions as the doctor before – everyone wanted their finger in the pie that day. For the first part of my labour my heart rate and blood pressure were good. My midwife was under strict instructions to let my doctor know if my heart rate and blood pressure went past 100. Once my labour started to progress I went and stood in the shower as the hot water was acting as pain relief….this is how I birthed Sienna so was hoping to do the same, but my heart rate went up past 100 so after that I was confined to the bed….grrrrr!

By 3.30 that afternoon I was finally in established labour and 4 hours later without an epidural and an assisted delivery my beautiful little baby, Mia Natalie Trew entered this world. I was stoked that I did it and a piece to this puzzle was complete. Things didn’t go exactly to plan, but pretty close and my heart handled the whole event! There was talk that after I had Mia I would have to go to ICU or the Coronary Care Unit to be monitored for the first 24 hours, but the hospital allowed me to stay with my baby in birth suite overnight, where I had my own nurse who monitored me. I was admitted to hospital on Wednesday and discharged on Sunday….my longest hospital stay, so I was so happy to go home. I had mixed emotions this time. I remember getting home and my dad came over and I just fell into to his arms crying. Poor man I don’t think he knew what hit him. The reality of everything was really hitting home. I was so grateful to be ok and to have a perfect little baby, but I was always going to be left with a heart condition after it was all over!

The next three months were crucial for my condition. I had to keep a diary of my blood pressure and heart rate readings and alert the hospital if I had any chest pains. I tried not to think about it too much as it was doing my head in! It was nice to go back and speak to my cardiologist at my 3 month check up. When I was first diagnosed with my heart condition, all that was important was getting Mia out so we were both safe. Questions about my heart and what had to happen to fix it couldn’t be answered until after I had her and I waited out the 3 month period! The next step was an MRI. This test was crucial to my treatment plan. I was stoked after getting the MRI results back. It showed that I do have a dilated aorta but my heart has a tricuspid aortic valve and not a bicuspid one like the echo showed!

My cardiologist explained that an echo isn’t as accurate as an MRI so I was granted with best case scenario news!!! This means that instead of looking down the barrel of open heart surgery now, I can be closely monitored with yearly echoes and regular blood pressure readings. The thought of having such a major operation with three small children was so overwhelming. I also have to live a stress free life….mmmm ok….I certainly will try! Thankfully since the day I was diagnosed, my blood pressure has consistently stayed around 90/60 and by losing weight and keeping fit this will contribute to keeping my blood pressure down, which is the key to my aorta dilating any further or not.

This whole experience has been very surreal, but I have learnt so much as well! I appreciate the smallest of things in life now and appreciate everyday I am on this earth being a mum, wife, sister granddaughter, niece and friend. I take time out for myself and don’t feel guilty for it. I look at my baby Mia and thank God everyday she was conceived, because if I didn’t fall pregnant I wouldn’t have found out about my heart until it was possibly too late! If I can give any advice from all of this, it would be to listen and pay attention to your bodies! If there is something that you are unsure of and you know it doesn’t seem right, get it checked out. Life is far too precious and when it comes to your life, you can never be to careful!

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The little girl who saved my life!