My sarcoidosis diagnosis

I waited very impatiently to hear back the results from the PET scan. The 3 working days came and went.

The Internet research

Time is a dangerous thing in the hands of a diagnosis-less patient. I fully admit to watching pretty much every YouTube video on the subject, and all of them were from a clinician or cardiologist's perspective.

I didn't want to commit to joining any social media groups for people who have been diagnosed and living with the disease, as it felt a bit premature. But I did want to know more. I wanted to know my chances of having cardiac sarcoidosis, and I wanted to know the prognosis. Because one of the first things you read when you start Googling cardiac sarcoidosis is that your life expectancy is about 2 years.

I have done a lot of reading and talking to other cardiac sarcies since then, and the general consensus is that this statistic is out of date.

A lot has changed in the diagnosis and treatment of cardiac sarcoidosis in the last few years.

The call

About 2 weeks after the scan I received a call from an unknown number while having a nap on a lovely Sunday afternoon. It was the cardiologist who was sent the results of my PET scan (finally).

He said the scan results confirmed sarcoidosis in my heart. He also said the biopsy results had no tissue findings to back this up, unfortunately. From my Internet research, this is pretty common if the biopsy was not guided by the cardiac MRI or PET scan imaging.

He was contacting his rheumatology colleagues to provide treatment support. Again, it was not a surprise to me that he would involve a rheumatologist after all my research - rheumatology typically administers cortisteroids like prednisone.

We agreed to speak at clinic the next week as I knew that I had too many follow up questions for a phone conversation.

It definitely felt like a life changing moment. I went to tell the husband.