New cardiologist, new investigations

Day 1,550.

I traveled from the island to Auckland for my first cardiology appointment in my new city.

The appointment was first thing in the morning. So I went over on the ferry the night before. Auckland is a beautiful city at night, especially from the water. The city of sails.

A refreshed echo

My appointment started with an echo. An echo is a type of CT scan of the heart, measuring the size of each heart chamber when it’s filled and empty, seeing how the blood flows and importantly checking the heart function.

The echo showed that my heart is moderately impaired. With the scale options being not impaired, mildly impaired, moderately or severely.

The technician was lovely and clearly very skilled. Her images were clear and she got the ejection fraction (EF) without any problems. That’s a metric of how the heart performs. Normal hearts have an EF of about 50%. Mine is now between 40 and 45%.

My last few echoes had been hard to interpret.

The cardiologist

I really like my new cardiologist. She seems practical, and discussed my condition and treatment options with me openly.

I did go into the appointment worried about having to go off Infliximab. When we spoke on the phone to setup this appointment, she spoke about how the treatment protocol is being established to get patients off Infliximab infusions as soon as they have a clear PET scan. My PET scans have been clear for two years.

We discussed how Methotrexate hadn’t worked on it’s own for me in the past. And the risk of infection while on Infliximab. Ultimately we agreed that we wouldn’t change that part of my treatment for now. Yay!

VT and Amiodarone

I had a new VT a month ago. This is very likely from permanent scarring to my heart, caused by cardiac sarcoidosis when it was active. Rather than from newly active sarcoidosis.

I am on Amiodarone to keep arrhythmias like VT under control. Long term Amiodarone has some nasty side effects. Like issues with your thyroid.

If I go off Amiodarone, there is a high chance of me having loads of new VT episodes. Or worse - VFib. My ICD will of course catch these, but those episodes are very disruptive and distressing. Typically, if ends with me lying on the ground, dizzy and clutching my chest.

The cardiologist will have my case reviewed at an arrhythmia group at the hospital. They evaluate potential cases for VT ablation. In Wellington, ablation was raised a few times as a possibility for me. But it was always ruled out as an option due to the location of the scar on my heart. Interested to see what the feedback from this group is.

High cholesterol and losing some weight

I had my cholesterol measured with a blood test by my new GP. The result came back as high. Quite high. I spoke with the cardiologist about this.

She said it’s definitely a concern, and if it doesn’t go down within six months I may need to start statins to treat it. Diet alone won’t resolve it.

Something else that will help is some serious weight loss. We spoke about GLP-1 meditation. I will probably give that a go. Losing weight with diet alone will take a long time. I have been trying to lose some weight for over 2 years now, and it is slow and painful process so far.

The cardiologist also said it would better to be in better shape in case we can do an ablation. I will be doing some calculations regarding the budget side of things, and having a chat with my GP.

New investigations

The cardiologist is going to refer me for two new scans.

• A cardiac MRI to see what the scan on my heart looks like now that there is no active inflammation.

• A DEXA scan to check my bone health since I have been on Prednisone for a few years already.

It sounds like the next few weeks will be action packed again.