Years 1 to 3 of living with cardiac sarcoidosis

Day 974.

I have been a little quieter than usual at the end of last year. I had some family and professional things to work through. Nothing like a bit of stress when you have sarcoidosis, hey.

As a nice way to close off last year I thought I would do a summary of my sarcoidosis journey to date.

2024

Year 1 - 2022

I was first diagnosed with cardiac sarcoidosis in 2022. Looking back, it was one of the most difficult periods of my life.

I had some very dangerous heart arrhythmias, over which I was in complete denial for the first few months. I had one major event every month from May until December. The worst was a day in July where I was shocked 3 times within an hour by my ICD.

The treatment was brutal. At the height of it, I was on 60 mg of Prednisone - a corticosteroid medication to treat the inflammation caused by sarcoidosis.

By the end of the year I started on Amiodarone tablets, which finally got my heart palpitations and frequent shocks by my ICD under control.

Year 2 - 2023

2023 was the year where my arrythmias became under control. It was the year where I started to feel hopeful and despondent all at the same time.

The first 6 months were great. I finally had no more arrhythmia. I could start driving again. We found the cardiac sarcoidosis was active again, but I started Infliximab. Infliximab greatly improved how I was feeling. The fatigue almost disappeared completely.

The second half of the year was when my mum died. This stress caused my heart to act up again - more arrhythmia. I was also frequently sick after starting the Infliximab with my immune system now heavily suppressed. But the scans showed the sarcoidosis was no longer active.

A roller coaster of emotion then.

Year 3 - 2024

The first half of the year was quite unpleasant. It started with me having a ton of heart failure symptoms. This was resolved when I started taking Furosemide only to be followed by some long lasting arrhythmia in February and March. By mid-year it was capped off by terrible nightmares every night of the week. I was miserable.

I became serious about weight loss. My doctors expressed concern in February and I lost 7 kg by July. I had an abdominal ultrasound mid-year which showed my liver had fatty infiltration and I tried even harder to lose weight. Overall I lost 10 kg. My face is starting to look normal again. Overall I am finding that doctors have a hard time looking at other issues when all they seem to see is my weight.

By the end of the year I had finally gotten over the fears from my arrhythmias earlier the year. I was feeling happier. I did a podcast with John Carlin. My rheumatologist reduced my methotrexate dosage as I am now stable in his view, and also my regular blood tests are starting to show some concerning values for kidney and liver.

Overall I ended on a high from a health point of view. I can't ask for much more than that.