Why I was Delayed again and again… oh well

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!