On the 29th of October I had my Surgery and began recovery.

Although they planned for me to be complicated (and had many back up plans) they didn’t need to make any extra measures during my whole surgery. They said it was systematically successful from beginning to end.

It was the 5th time I was booked for the surgery, and due to my 4 previous delays (you can read my delays here), it almost didn’t feel real or like it was going to happen at all.

Honestly, it was almost like I was desensitized to the fact I was about to have a CABG (coronary artery bypass graft).

I woke up at 5, had a shower with my special antibacterial soap, and was in bed dressed and waiting at 5:30. Before I knew it surrounded by my lovely mum, dad, my darling sister and my gorgeous husband, and we were all waiting again!

Although this time, it was for reals!

7am, just had 20mg Temazipam and waiting to go in

The Doctors came in and said they were ready for me, I gave everyone big hugs and kisses and got wheeled off in my bed.

As soon as I was out of my families site and in the room,just before theatre the tears starting flowing. I felt scared but not petrified anymore, excited but anxious, confused but informed. Many emotions were hitting me at once.

Once in the theatrenroom the nurses, doctors and anethitist were nothing but amazing and were constantly checking up on me, holding my hand, explaining what they were doing… They were just amazing humans.

Due to my anxiety I told them I don’t want to feel myself being put under, so they slowly gave my IV medication and asked me all the usual questions – what surgery am I having, is this my signature on the consent form… and that is the last thing I remember of the theatre room.

The next thing I know is I’m awake, but not acknowledging everything that just happened. All I knew is I was awake, surrounded by my beautiful family and grateful to be fixed and happy. I literally was too groggy to understand what I went through, all I could do was act on the emotions I was feeling right then and there – Love, happiness and thankfulness.

The only thing that felt yucky and annoying was ventilator (a machine that will move air in and out of your lungs, essentially “breathing” for you)

It didn’t hurt, I was just aware it was there and I couldn’t talk – lucky I was good at doing and signals 👍👌!

Me just waking up with the tube still down my throat

As my surgery was so successful I went under around 8am and woke up at 1pm. They said when I woke up I was in a bit more pain then I could handle so they let me sleep for another hour.

During the surgery they use a Heart and Lung machine. This basically means that the stick and intravenous line through my groins main artery and take control of the heart and lungs. The machine deflates my lungs completely and stops my heart from beating, it takes control of my whole circulatory system.

I woke up pretty quick, they said it would take hours, I took less then 1 hour to wake up. While I’m waking up with the ventilator in my throat the machine is doing the breathing for me and helping me get Oxygen in and pushing all the carbon dioxide. The pain I was feeling in my lungs while waking up was all the carbon dioxide pushed in my lungs from the machine.

I was really worried about the tube before the surgery, so when I woke up I think I was a bit anxious… After what felt like forever I finally had the tube removed from my throat (honestly don’t remember too much about this, at the time I was scared).

While I had the tube I asked for a pen and paper, and the rest was left to my family to decode my ramblings…

Then spent the rest of the night in ICU, with my magic button that delivered 10mg of Fentanyl.

This button was able to be pushed every 5 minutes, which meant you could use it every now and then or build up the dose by using it a few times in a row.

That night I clicked it very frequently.

I also found out the Perfusionist (the person that looks after the Heart and Lung Machine did not have to clamp my system and stop my heart, they just slowed it down.

They were also amazed at how fast it was, they said “it could take 5 or 8 hours, or more…”. It only took 5 hours!

Overall my doctor said “everything was systematically successful, we didn’t have to use any simple precautions. We had a whole back up team waiting, we also had a range of different back up plans, none had to be used”.

I am extremely grateful to be alive, and thankful for my families love and support!

I am writing this exactly a week post surgery and I’m still shocked about tee fact I have an normal amazing heart!

To be continued…

Today was the 4th time my surgery has been cancelled, and tomorrow is 3 weeks in the hospital. I am scheduled on the 29th of October 2018, tomorrow morning for my CABG Bypass.

I am confident in myself and my team. I am petrified but I am strong.

Everyone keeps calling me brave, but how can you be a brave person when you don’t have a choice. I guess I could discharge myself, refuse the surgery, but where will that leave me? A few more years until I am rushed into hospital as an emergency, no way to safely start a family, continuing to live not known what might happen or when? I guess that would be the cowards way out, just to live forever scared.

My Mum raised me to be stronger than that. She raised me to be intelligent, ask questions, make informed choices, accept challenges and power through them with strength and positivity!

Tomorrow I will have my bypass, I will be finally fixed and I will recover strong!

I cannot wait for my future with my family and friends, to start a family with my husband, to study hard and guide many others through their challenges!

With my family and friends love and support, I am determined, I am fierce and I am strong!

1. Delayed due to IV infection, took over my whole body for a week.
2. Doctor was working on a transplant all night
3. ICU was too full
4. This time its a 6 hour delay depending if someone is getting a lung transplant, happy for them! Eager to go in for this surgery though!

I just want to say I am 100% happy that other families are getting what they urgently need! Good on them, so happy for them!

On the plus side I got Toast and a tea!

Whenever a doctor or anyone listens to my heart they can hear all the different sounds… the three holes whooshing, my blocked artery flowing and the unique pathway my heart pumps my blood through all my rewiring.

It has its own beat and rhythm.

So my gorgeous husband says it sounds like dubstep!

Here are some awesome Dubstep songs! (Wait for the drop…)

• Bangarang
• Eyes on Fire
• Kickstarts – bar 9 remix
• Monster

Not dubstep, but I’m sharing this song because it always makes me swoon!

Can’t help falling in love with you!

💜💜💜

So, I originally was brought into emergency on the 10th of Oct. I was at work just typing away and all of sudden I felt this… pinching feeling. Something I haven’t felt before… like a direct pinching … right about here:

Being a cardiac patient I did want to wait around and find out if it was just muscle pain. So my wonderful Dad picked me up from work and took me straight to the emergency department (ED). From there they did 4 hourly tests to check a certain heart enzyme called Troponin. If this test comes back positive it means that there is heart damage.

Luckily enough I had negative results. However, as I was booked in sometime soon for a bypass and had chest pain my cardiologist thought it would be best to be transferred to Prince Charles Hospital. It did take 3 days to find a bed available for me, so finally on Wednesday, I was transferred by Queensland Ambulance Service – QAS.

As soon as I was in bed they told me I was booked in for my Angiogram the next day. They did many different tests – you can read about it here: My Bypass is tomorrow…

After my angiogram, my Cardiologist explained that my pain is mostly from just common cardiac pain from previous surgeries, also that I was wired differently from my switch (Where my medical journey started!) and muscular-skeletal pain from CMT (What is Charcot Marie Tooth – CMT?).

However, the blockage is still there since birth and since I was waiting for a corrective bypass that I may as well stay as an inpatient and just have the surgery the following Thursday (the 18th). Ok, only 1 week in hospital – not so bad.

I can laugh now but really it was bad. After my angiogram my troponins raised, this is normal because they were inside my arteries causing the enzymes to raise. So I went to a high care ward while I recovered. While I was there, unbeknownst to me I was growing an infection.

Without saying too much (still under investigation)… a nurse did not listen to me about my IV not being safe anymore and I ended up with a Staph Infection. The next day I went back to the general cardiac ward to wait for my bypass.

When I woke up the next morning I had a lump under my IV. I showed my nurse and explained what happened and he quickly got it out. Then it got bigger like a hard golf ball. Then after finally getting a doctor to look at it, he said if it gets worse I may get delayed. So ice it was for that afternoon.

That night I started getting shivers and sweats, my temperature hit 40! (a bit about temperatures). My body had the infection flowing through it, for the next few days I was on a strong antibiotic called Flucloxacillin. I was on a permanent drip (obviously a new IV), 6 hourly doses for 5 days or so, then 2 days Orally.

I was told during this time I was going to be delayed after 7 days of antibiotics, and 2 days of no medication.

They even did an ultrasound on my arm and found a large blood clot… this long:

Lucky it was only in a Superficial Vein not a Deep Vein. Which meant it was gong to go to my heart or become dangerous.

FUN FACT: As the blood thinners I was on dissolved the blood clot, the doctor explained that my vein and the blood clot may dissolve together and my body will just grow a new one in its place! (So now I figure we are all part Starfish and can regenerate the same).

ANYWAYS, I finished my antibiotics on Sunday the 21st (at this stage I had been in hospital for 2 weeks – 14 days of fun).

I had no set date as of yet but simple maths (7 days antibiotics, 2 days without left me with either Wednesday or Thursday).

By Monday I was not in a good mental state. I had been on an emotional rollercoaster… mentally preparing myself for surgery and now having to do it again, not to mention the 14 DAYS IN HOSPITAL. I was about to implode. Luckily I had kind nurses and Doctors that understood. I was no longer on Telemetry or had an IV in my hand.

Photo of telemetry and nurses wireless monitoring

So they let me out on day pass – which was spent with my gorgeous hubby, just hanging out and enjoying each others company.

Then the next day the Clinical Nurse came in “You’re all booked for surgery tomorrow, go have lunch, pack up your things and we will move you up to the surgical ward”. FINALLY it was happening!

The next morning at 6am I woke up, showered with my antiobiotic soap and waited patiently. Then I went off and had my bypass… Then I was told there was a delay, my surgeon had been up all night doing a Heart or Lung transplant and was not able to do my surgery that day.

Honestly, that’s fine by me. I don’t want a tired surgeon, and I am glad that someone more urgent then me got what they were needing!

So, I had another day pass and spent it shopping for post-surgery appreciate front zipper bra’s and button up tops – and just had a blast hanging with my beautiful hilarious family!

Then this morning I woke up at 5 and was told there was no delay and to get ready. Shower, gown, patiently wait. My family arrived and the nurse came and gave me 20mg of Temazepam so I was nice and calm for my journey.

Then an hour later we were told there was a delay. We waited patiently till 2pm. All 6 of us enjoying a game of Trivial Pursuit in my room. I have to stay although everyone else went and had breakfast and snacks I was fasting from midnight the night before so I was starting to get pretty Hangry!

One of the surgeons finally arrived with news. Someone in ICU is not ready to leave the ward yet so there will be no room for me to go there when I’m in recovery… However, my surgeon has me set for Sunday the 28th! – he is making an exception just for me! (How lucky! Otherwise it would of been another week!).

I’m 100% happy with the fact that they didn’t rush anyone out of ICU just so incould have my spot after surgery. It means they care and it also means I am not urgent.

So, now 2 and a half weeks later I am patiently waiting for this Sunday the 28th for my surgery. I have day passes allowed everyday before hand. Which is obviously awesome!

AND that my friends is the extremely long reason for all my delays!

I am exactly where I am supposed to be right now!

UPDATE – Read here: Why the delays?

Ok… before we get into that lets rewind… here is a post about Where My Medical Journey Started.

Now through the years because of my Cardiac surgeries, CMT (What is Charcot Marie Tooth – CMT?) and with that my scoliosis and muscular atrophy that comes with it -I have had a fair bit of muscular skeletal pain and pain from scar tissue and common pain from surgery.

Every 1 or 2 years I have a Cardiac Stress Test, either running on a treadmill or having Dobutamine Stress Test (a chemical which is like adrenalin and speeds up the heart as if you are exercising, while really you are just laying on a table).

I really have had my fair share of Stress tests and Angiogram (where a special camera goes from my groin to my heart).

2 weeks ago I was rushed to hospital with bad pinching pain. I had a more intense angiogram. During this test they did a FFR – Fractional Flow Reserve, a IFR – Instantaneous Wave-free Ratio and a IVUS – Intravascular Ultrasound.

Basically they put in a pressure test wire in my artery and looked at it at rest and then with dubutomine in my system.

The really cool thing is the IVUS – it’s a ultrasound of the INSIDE of your teeny tiny artery. How amazing is that – here is a really awesome animation!

They have always been good and shown the same thing, that I have a 60-70% blockage (see Where My Medical Journey Started for more info).

However, now I am at the age when I am ready to have babies with my gorgeous husband and start a little family of our own – it is time to get fixed!

Between my aorta and pulmonary artery, I have another smaller (but as important) artery that is squished. As you can see below from my beautiful finger art in Paint!

So this squished artery has caused me some problems moving forward. Not only with the fact that age will make things harder on my heart to stay healthy with my current situation, but with starting a family of our own.

When you are pregnant your heart changes, swells and grows, therefore the pulmonary and aorta grow. Mine would the swell so much that it would squish that small artery so much it would block off and therefore cause a very dangerous heart attack (even a silent one). The damage to my heart would start as early as 8 weeks, and at 20 weeks I could have a heart attack at any moment.

So, my husband and I have made an informed and educated decision that we will wait until I have had this bypass, and after 6-8 months of recovery, we can start our beautiful family!

I am extremely excited to be able to have this surgery, it is giving me the strength I need to continue with our plans… because we have so so so many!

I get this question from a lot of puzzled Doctors after they view my medical history.

I was diagnosed genetically with Charcot Marie Tooth around the age of 8, but my mum always noticed something was off with my walking. I had a lot of signs…

• high arched feet
• muscle atrophy
• muscle aches from standing and walking too long
• muscle and foot soreness
• random tingles every now and then on my legs and arms

 

 

Here is a bit more about Charcot Marie Tooth (CMT)

A detailed page about CMT and Here is a great video

Charcot-Marie-Tooth disease (CMT) is one of the most common inherited neurological disorders, affecting approximately 1 in 2,500 people! It IS that common, some people have no idea they have it. Until they happened to find a Doctor that knows about it, or find their own research online or joins a CMT Facebook group!

I am extremely lucky I am not severely affected by it as some, because CMT can vary from almost non-existent to constant physical and emotional agonising pain.

This video is a great funny explanation – You know you have CMT… and here is a video about How CMT shows

CMT can mostly be explained as an Invisible Illness. I know myself having a disability parking permit and being young, and not sometimes visibly seen as Disabled, I have copped a lot of RUDE people. So next time you see a ‘perfectly’ fine abled body person park in a disability park, check yourself!

 

 

 

 

 

 

 

I can’t even count the amount of times or weeks/ months I have spent in hospital. It’s the little things people never talk about hospital stays that are just pain annoying.

Before I begin – everyone is entitled to a rant about s#!t that annoys them, no matter how lucky they are.

Also, this list is definitely subject to change!

This is my official First World Problems list as a patient at a world class hospital:

• ECG dots – I’m sure anyone that 99% of anyone that has had a ECG dots on longer than a day will tell you “they suck”. They’re sticky residue stays for ages, even after scrubbing. Unfortunately for myself I’m allergic to the glue that slowly eats away at my skin. Trust me if this happens always ask for the hypoallergenic type!

• Gowns, gowns, gowns. So many types. No matter how nice and nearly you put them on and how tight you tie the back up… they always somehow unravel themselves! I just put them on backwards now and tie them at the front. Then I can keep an eye on them, rather them hoping no-one can see my backside!

• Biopotential Telemetry…aka Portable ECG machines. Don’t get me wrong they’re great, you can walk away freely from your bed. But have you ever tried to shower with them? First you can’t get them wet so they have their own special sleeve… then you go in the shower and there is no where safe to put them… So you end up shoving them behind the soap dispenser, on a railing or giving up all together and holding one arm out the whole time praying it doesn’t get wet.

• Also, let’s not even get started about trying to shower with the ECG machine, various short lead wires and sticky dots. Honestly, the list goes on… can never get a decent shower!

• Now… let’s talk about Obs time… that lovely time at 1am or some other absurd time your nurse wakes you up to check your vitals. I know, it’s important, but it’s crappy when you’re already feeling crappy. I do not envy nurses jobs!

• That brings me to skin-wringing blood pressure cuffs. These bad boys can be used every 6 hours, sometimes every 4 hours if you’re lucky like me… now I have some lovely tiger stripes on both of my arms… my poor poor skin.

Like I said first world problems, but they still suck!

To be continued…

Thought I would share some photos I have found!

(1 year old me at Prince Charles Hospital, Brisbane)

The night I was born it became pretty obvious I had some issues… you see, I started turning blue. I was born with Transposition of the Great Coronary Arteries (TGA), VSD (Ventricular septal defect), PDA (Patent ductus arteriosus) and PFO (Patent foramen ovale).

This all left me with Ischemic Heart Disease – which in short means that when arteries are narrowed, less blood and oxygen reaches the heart muscle.

By the time I was one I had already had two Open Heart Surgeries…

My first one, one month after being born, was an Initial atrial septectomy where they were trying to create a small hole between the upper two chambers of the heart, to give my heart some room to flow. They use a small Balloon to open the artery up. They were doing attempting this via a Coronary Angiogram.

Unfortunately, the angiogram was unsuccessful due to my pelvic veins getting in the way… so they had to do it manually via Open Heart Surgery.

Just after turning one, the second one was a Transposition of the Great Arteries – Arterial Switch Repair using the LeCompte manoeuvre (watch this video).

Here is an extremely medically detailed link

Or see here an explanation from a Doctor:

Haha, but trust me… watch the video… it’s a great explanation!

Basically, my main pipes were around the wrong way. One was getting oxygen rich blood instead of deoxygenated blood and vice versa. So they switched them!

My favourite image I have in my head was painted by my aunty. She said the Dr explained my surgery like:

“Working on a beating chestnut with two-minute noodles bursting out of it”.

Nowadays, at 27 years old, my narrow artery is a bit like this (see below my detailed medical diagram made in paint)

Wow, that is a terrible drawing!

My point being my LAD is narrow and causing a blood supply restriction to my heart.

That’s the brief basics of it, for now… This was only the start of my journey.

Hope you enjoyed my 1st blog as brief as it was!