Cardiac scardiosis

Hi, I'm new here. Dual lead Boston implanted Dec. 2023. 48 yr old w/Bradycardia. Just had cardiac MRI...it looks like I'm dealing with Cardiac scardiosis. Anyone here been diagnosed with that? Looking for information, encouragement, hope. Cardiologist thought I have pacemaker induced myocardial due to lower ef (40-45%) that wasn't present at implant 4 months ago. I felt better for a little bit after 1st surgery, then started not doing well with exertion and lots of "sensations" or discomfort in my chest, lightheaded etc. Going back for a 3rd lead and CRT in 3 days. 

1 Comments

Cardiac Sarcoidosis

by Gemita - 2024-04-29 04:06:22

CEO, Welcome.  I recall I have responded to your posts in the past, but there is no trace?

I am very sorry to hear about your diagnosis.  There are a number of members here with Sarcoidosis.  If you search top right under “Q”, you will find several pages of posts.

If my understanding is correct, your doctors initially thought they were dealing with pacemaker induced problems causing a fall in your ejection fraction (EF).  I hope therefore an upgrade to cardiac resynchronization therapy (CRT) in a few days time will help recover your EF.  Clearly if a fall in your EF is due to Sarcoidosis, this may require other treatments too.

As you will know, Cardiac Sarcoidosis is an inflammatory condition which can occur in any part of the body (frequently lungs, lymph nodes) but also our eyes, skin, heart and other organs.  If it occurs in the heart it can cause scarring and heart rhythm disturbances.  Your doctor may prescribe medication like steroids to suppress the inflammation, to help prevent further damage to your heart muscle.

I see the cause of sarcoidosis is largely unknown, but that experts think it results from the body's immune system responding to an unknown substance.  Although there is no cure for sarcoidosis, patients can do very well apparently even with no treatment or only limited treatment.  In some cases, sarcoidosis can go away on its own. However, sarcoidosis may last for years and cause organ damage if it is not controlled.

I hope your cardiac sarcoidosis has been caught early and that you will improve your EF and feel better with CRT.  I note you are not receiving a defibrillator, so perhaps this suggests your doctors are not concerned at this stage that you are in any imminent danger of having a serious heart event like a dangerous arrhythmia.  Current guidelines recommend placing an implantable cardiac defibrillator for patients with cardiac sarcoidosis with a severely impaired left ventricular ejection fraction of less than 35%.  I see your EF is 40-45%, so with CRT this should hopefully improve.

I note you have bradycardia.  Complete heart block is the most common finding in patients with cardiac sarcoidosis.  I would try to be optimistic that your Sarcoidosis has been found early and that with treatment, you can look forward to a good quality of life for a long time to come.  Good luck

You know you're wired when...

You have a T-shirt that reads “Wired4Sound”.

Member Quotes

One week has passed and I must admit that each day I feel a little stronger.