My first week in hospital

Days 2 to 6.

The first night in the hospital I couldn’t sleep. Too much adrenaline from the ventricular tachycardia (VT) and the ultimate shock. No sleep introduced an immediate challenge as I didn’t have anything with me. Not wearing much clothes. No books or a phone for entertainment - yikes! A lovely nurse brought me some pen and paper, and I did some sketching instead.

I did two sketches that evening, and to be honest: both edged on the dark side a little.

The next morning a battery of tests started to try and figure out the underlying cause of the VT rhythm. As one cardiologist put it: you are too young to be seeing these kinds of rhythms.

Echo

On the Tuesday morning, a technician rolled her echo ultrasound machine into my hospital room. It had friendly stickers of cartoon lions on it - the hospital mascot. She proceeded to scan my heart with the ultrasound. It was fast and efficient. After the scan the technician spent some time measuring up my heart from the scans she had made.

Cardiac MRI

After reviewing the echo, the cardiology team at the hospital managed to grab me the last scan of the day with the MRI scanning team. I was wheeled downstairs in my hospital bed the Tuesday afternoon and met a friendly Scotsman who was to be my cardiac MRI technician.

I got to lie down in a perfectly white, tubular tunnel. The MRI scan works by ejecting magnetic signals. For this reason you are asked a whole bunch of safety questions before you start about potential metals in your body. I don't have any, but still had visions of teeth fillings popping out of mouth onto the MRI tube wall. So, a little bit scary.

Once the scan started, I relaxed a bit. The scan involved a lot of coordinated breathing and holding of your breath in order to create still images of your heart. It was rather meditative and lasted about 30 minutes.

I was given contrast for better imaging. All in all it was completed rather easily.

The Scotsman's face gave nothing away of what the scan results might be. I was swiftly wheeled back upstairs to the ward in my traveling hospital bed.

Truth bomb time

At the Wednesday morning rounds I was visited by the cardiologist. He arrived with a posse: a registrar doctor, and some ladies who were making notes. It was serious faces all round. I am asked about my young son, which I assume was noted by the ambulance.

The cardiologist tells me the MRI had shown scarring on my heart - on the septum. The heart function is impacted. It has introduced conduction issues for my heart with signals not being able to move up my heart from the lower chambers to the upper chambers.

He says there are still many directions this could go. I will possibly need a device called an Implantable Cardiac Defibrillator (ICD). They don't think I have valvular issues, but need to rule it out. I need to have an angiogram to rule out issues with my pipes and valves, and at the same time a biopsy will be done of my heart to see what is causing the scarring. I am also quizzed on heart problems in my family history. I can't think of anyone dying young.

To be honest, I was in shock and also denial after this conversation. Things felt serious, but also like once we find the problem we can tackle it head on.

The "S" word - Sarcoidosis

During the Thursday cardiology rounds was the first time I heard the word "Sarcoidosis". The husband was with me on this occasion, and he asked the doctor what they were leaning towards in terms of cause.

After some hesitation, the doctor said sarcoidosis. He said we would likely need the biopsy or a PET scan to confirm whether this was the underlying cause or not. He said PET scans were not part of regular testing, so there were some extra approvals needed to get this scan.

After he left, of course we Googled sarcoidosis. I read the list of symptoms, which was all mainly related to sarcoidosis in the lungs. It didn't make sense to me at all, and frankly I thought the doctors were clearly making a mistake in going down this route.

More denial.

Angiogram and biopsy

I was waiting for a surgery slot to receive the angiogram procedure from Wednesday until Thursday. I was told that the surgery team would use the same entry point for the angio to do the biopsy too.

There was a slight game plan change by the surgeon on the biopsy on the day - this was going to occur via an entry in the groin for the biopsy. This was done first, and was pretty easy going in terms of access. I felt quite nervous about someone scraping and taking a piece off of my heart. 3 or 4 samples were taken in the end.

Next up was the angiogram. The surgeon accesses the heart in an angiogram by inserting a small tube up an artery from your wrist up your arm. While the biopsy was taking place, my arm was already tied down - ready for the angio to start. Both the left and right pipes need to be checked, meaning going up the arm twice.

This was extremely painful for me. The surgeon reckoned it was likely due to my arm spasming from being tied down for longer than they usually do. I had a bit of a cry towards the end of the procedure.

Afterwards I was wheeled back upstairs to the ward with a recovery nurse who tried to make me feel better while I shed some tears. I had a bit of a sleep and missed the usual supper time. My arm was still really painful that night. Luckily most of the pain was gone by the next morning.

ICD implantation

On the Friday morning a cardiologist came to see me. She told me that they were performing some device surgery that day, and that she would like to add me to the list for an Implantable Cardiac Defibrillator (ICD) device implant.

This immediately meant no breakfast and no lunch. I was a bit sad as I was quite hungry after not much food before the previous day's procedure.

An ICD nurse came to speak with me about the device and to answer any questions I might have. There was quite a lot of information in this chat, and I will do a separate post on this topic. She showed me an example of what the ICD lead looks like, and said inserting the lead into the heart is like inserting it "into butter". That made me feel really queasy to be honest.

The cardiologist forgot to tell the ward nurses that I was being added to the surgery list, which meant I was hurriedly prepped at around 1 PM for surgery at 2 PM. I was wheeled downstairs again.

I was really scared going into the implantation procedure. It felt like my heart was going to be opened up to the elements a lot more in this surgery. The experience of the previous day probably didn't help.

The surgery team really tried to make me feel as comfortable as possible, and I was given local anesthetic that made me have a lovely nap. When I woke up things were all done and the team was busy programming the ICD device.

My specific ICD settings are:

• Under 40 beats per minute - pace up

• Over 170 beats per minute - pace down

• Over 220 beats per minute - shock

Going home

The Saturday morning I had a lovely hospital breakfast.

An ICD specialist technician came to test my device. The test involved sending pacing signals to my heart to see that the lead was working correctly. Everything looked good and I was given the all clear to be discharged.

My discharge papers had a whole lot of interesting information about the test results from the week, which I saw for the first time. It contained information I hadn't even thought to ask. For instance it stated my ejection fraction, which is the number that indicates my hearts ability to pump out blood.

One other interesting thing it noted was a follow up appointment for a PET scan.

The husband and the boy came to pick me up.