Changes in my sarcoidosis treatment

Day 1,519.

My new cardiologist from Auckland Hospital phoned me within a week of me moving here to chat about my currently prescribed medications. And we spoke on the phone for about 20 minutes. I was really impressed by this!

She is very experienced, and is on a newly formed Sarcoidosis Advisory Panel in New Zealand. She is trying to standardise treatment for cardiac sarcoidosis patients across the country as part of her role on the Panel alongside other experts.

An updated plan

She had questions about three areas of my current treatment plan:

• Methotrexate - she normally recommends continuing Methotrexate for about 5 years from diagnosis. But we stopped Methotrexate for me after 3 years due to the impact on my liver. She suggested that we might substitute Methotrexate with something else that I can’t remember the name of.

• Infliximab - the treatment protocol that she recommends stops Infliximab as soon as a clear PET scan is achieved. She felt that I have been on it for way too long, and would like to reduce my risk of infection. Prolonged use also increases the likelihood of building resistance to the medication.

• Amiodarone - she is concerned that I am quite young to be on Amiodarone. This is not the first cardiologist to tell me this. Last time the cardiologist suggested that I might be a candidate for an ablation, but the team in Wellington ruled this out. I am keen to understand what the alternative to Amiodarone might be. I don’t think nothing is an option.

That is a lot of change, but she wants us to be brave. That is all good and well, but it makes me feel extremely nervous to change a treatment that has worked so well for me. I have been stable, and the last thing I want is to start all over again with VTs and shocks and not being able to drive for months at a time. She does understand and sympathise with this.

I did expect change, as it is a new doctor and it’s a rare disease without a well established treatment protocol. That doesn’t mean I feel comfortable with it.

Another interesting point is that the cardiologists here manage their own medication, as they have a lot of experience with it. So I won’t have a rheumatologist for cardiac sarcoidosis moving forward.

I have an in-person appointment booked with her to discuss all of this.

Impossible to reach anyone

I did have a cardiac nurse call me to arrange my next Infliximab infusion in Auckland. She gave me a few calls until we booked in an hour exact date and time. But I never received an update of the location of the infusion. There is more than one hospital with many departments across them.

So I tried phoning the hospital to try and find the cardiology nurse that I spoke to. The hospital’s telephony system made this impossible. It gave me 3 options: say the name of a patient I want to speak to, enter a phone extension I know, or say the name of the department I want to contact. None of these options worked for me. And when I said cardiology, it would just say that it doesn’t know that person!

It was infuriating. I finally found a patient enquiry phone number for the Cardiology department on Healthpoint NZ. I ended up getting through to a call center responsible for appointment scheduling, but they had no record of my infusion appointment. Every person I spoke too was confused, and then inevitably said “Leave it with me”. But I also never heard back from anyone again.

Finally the lovely nurse phoned me back and arranged for an email to be sent to me with the location. Not a moment too soon either - my infusion is the next day.