My husband has cardiac sarcoidosis.
He was diagnosed with lymph node sarcoidosis in Sept 02.
The swollen lymph nodes were found in a yearly physical.
We were happy when the biopsy said it is "only sarcoidosis", not cancer.
He was treated with prednisone for 2 months.
He has been healthy and strong with no problems with his lymph nodes until....July 19,08
My husband had sudden cardiac arrest.
No clogged arteries, no warning signs.
A few weeks and a lot of tests later the answer came...cardiac sarcoidosis did alot of damage to his heart.
Now he is taking prednisone and heart meds. He has an inplanted defibulator. We will see what happens now. He is 44 years old.
Sarcoid
I just got the news on Friday that I have cardiac sarcoid. Months after my pulmonary sarcoid diagnosis and complaints of chest pain, followed by SVT and a heart ablation in January - and doctors telling me along the way that cardiac sarcoid is very, very rare - a PET scan showed I have sarcoid in the mid and basel portion of the heart and 100% AV Block.
I have been on predinsone for 4 months now, started at 40 now on 20mg. The doctors want to meet with me this week. I am terrified and don't really know what to expect at this point.
Any feedback would be appreciated.
To rrobustelli
Be sure to check out www.inspire.com
There are a few people with cardiac sarcoidosis.
I am glad that your sarcoid was found before it stopped your heart.
Cardiac Sarcoidosis
I'm sorry to hear about your husband - I know what a devastating disease this can be. I am 44 as well. I was first diagnosed with Cardiac Sarcoidosis at 41, but I apparently have had it at least since I was 33. That was when I was diagnosed with 100% AV block and had a pacemaker implanted. If you or your husband would like to speak to me directly, please contact me - I would be happy to answer any questions that I can. You can e-mail me at andrewblakeslee@bellsouth.net.
Andy