Meeting the cardiologist

Day 51.

After what felt like an eternity I finally met with the cardiologist at an out-patient clinic on Tuesday, 19 July 2022.

Our clinic was delayed as he was trying to get hold of the rheumatologist, who he wanted to consult with on the medication to prescribe.

Questions I had

How long have I had cardiac sarcoidosis, based on the scarring they are seeing?

The cardiologist isn’t sure, but would say at least a year.

Is the sarcoidosis only in my heart or is any other organs involved?

The PET scan also showed sarcoidosis inflammation in my spleen and lymph nodes. The lymph nodes next to my lungs.

Would I stay home during treatment or be in hospital?

Home. The treatment is mainly in the form of cortisteroids which I will take as a pill every day until the sarcoidosis inflammation in my heart goes down.

How intensive would treatment be? Can I work, or look after my son?

The cardiologist was unsure. This is a question for the rheumatologist.

How close am I to heart failure?

Heart failure is not an absolute. The cardiologist expects a better view of the scarring and damage to my heart once the cardiac sarcoidosis inflammation lifts. The cardiologist said my ejection fraction is 36%. This is much lower than the number indicated on my discharge sheet from the hospital (47%).

What is my prognosis with cardiac sarcoidosis?

In the end, I didn't ask this question as the cardiologist wouldn't commit to commenting on heart failure. I figured he was not going to comment on my prognosis.

I have read there is a genetic element to cardiac sarcoidosis. Is there a chance my family has it too? For instance my mother or my son, can they get it or have it too?

No, they won't have it. No specific gene has been identified to perform genetic testing.

My notes on the genetic nature of sarcoidosis: I am not sure the advice from the cardiologist is correct in this instance. Some genetic markers have been identified that can be tested, and the disease has definitely been shown to occur in families. In fact I met another patient who's grand mother and cousin both have cardiac sarcoidosis too.

Next steps

From the clinic with the cardiologist, the following action plan was created:

• Start prednisone immediately as treatment of the inflammation caused by cardiac sarcoidosis.

• Stop candesartan immediately.

• An out-patient clinic with the rheumatologist in 2 months' time.

• A follow-up out-patient appointment with the cardialogist in 3 months' time.

In summary, I was happy to have some questions answered and so very happy to start treatment. It felt like a lot of time had passed since my initial ventricular tachycardia event.