I should be happy
- Jul 9
- 2 min read
Day 1135.
After 3 years of treatment for cardiac sarcoidosis my most recent PET scan shows no active sarcoidosis. Organs that had shown inflammation in the past has completely cleared up now. I am incredibly relieved and grateful.
I have been feeling so good lately. I am even trying to walk a few hills again.
But. Now I am in that weird space that a lot of sarcoidosis patients seem to get to: I have been stable for a while and the doctors need to see if the disease will now stay away if they reduce my medication.
I want to be happy about this, I really do. I have seen stories on a Facebook community about folks reducing their meds and staying healthy for years or even decades.
But I have also seen stories about folks having a flare up within months. Flare ups with major ramifications like needing to have cardiac ablations to fight ongoing VTs. Or getting shocks from their ICD with new inflammation. Or having to restart Prednisone to get raging inflammation back under control. Or having new damage to their hearts from new inflammation, leading to new treatments being needed.
Feeling anxious
My biggest fear is going back to the beginning with my health. Everything is so settled and going so well right now. How much of that is because of the medication, and how much is because the sarcoidosis is not active anymore?
Will the sarcoidosis stay inactive if I stop Prednisone or Methotrexate or Infliximab? Or is the only medication keeping the inflammation at bay and I will have to start all over with high doses of Prednisone to get sarcoidosis under control again? Will my body build resistance to Infliximab if I stop taking it now?
Will the heart arrhythmia come back if I stop taking Amiodarone?
My next annual appointment is with the rheumatologist in September. This time the hospital is sending a new rheumatologist instead of my usual doctor. As sarcoidosis treatment is so unique to each patient and dependent on each doctor's experience and views, does this mean my treatment will change now?
So many unknowns make it incredibly hard to enjoy how well I am feeling now. I try not to think about it at all.
Feeling guilty
I have also been feeling incredibly guilty when talking with my friends who also have sarcoidosis. When everyone shares how they are doing I feel bad to share how good I am feeling or that my scan results are good.
That is not to say that I am not feeling any symptoms from sarcoidosis anymore. I still have to pace myself and need a rest day on the weekend after a full week of working.
However, I feel guilty when one friend's recent scan showed their sarcoidosis is active again. Or another friend's struggling with fatigue. Or another friend has had heart rhythm issues and surgeries.
I try not to talk about how I am doing, and just be supportive.
Something I clearly need to work on is just being happy.
Kia ora M. I too received the ‘all clear’ status in December last year. This was my first Interval Scan. My previous scan, which formed the basis of my diagnosis, had been in July. My remission status produced both relief, followed almost immediately by anxiety about what that meant for any follow up and supervision. I also experienced feelings of survivor guilt and then confusion about my responses followed by a second layer of guilt, around these responses.
I have a friend whose journey has been a far tougher one than mine. I feel terrible for her when I hear her suffering. I’m mindful of what I share with her an about my health and I remain thankful that,…