Cardiac Sarcoidosis

I could really use some positive feedback to help me deal with the worrying.
About 6 weeks ago on May 16 I had a 2 wire pacemaker installed for a second degree heart block. My pulse was around 36 bpm.
The surgeon said he would be doing some further testing in an attempt to discover what caused me to need a pacemaker. On June 19 I had a PET scan. The test results stated a suggestion of Cardiac Sarcoidosis. There was no sign of Sarcoidosis anywhere else in my body except my heart. Some of what I've read about this on the internet, says it can be terminal (2 year life expectancy) and said it has a poor prognosis and mentions fatal ventricular arrhythmia.
They are fitting me with a heart monitor for the day (on July 10) and have set up a appointment for a CT scan on July 31.
I can't talk to my heart specialist about this, until my appointment with him on Sept 3, and my Family Doctor is unfamiliar with this disease.
I am a wreck. I have already been trying to cope with anxiety problems over health related issues for the last couple of years and have been seeing a physiologist for about 2 months now.
I have been trying not to think about this, but it's very difficult to put it to one side.
I entered the words Sarcoidosis on this sites search engine and read all I could. Strangely I came across no mention of the impending death in those post.
If there is someone out there who has been diagnose with this disease and could offer some positive feedback it could help me tremendously.
Thank you.
Rick6

4 Comments

Concerns were not answered.

by Rick6 - 2013-07-01 03:07:43

I did go to the hospital and talk to the technician who checked out my pacemaker a while back. I showed her my report from the PETscan. She then called on the phone and talked directly to my surgeon. I was sitting right there and heard her tell him my concerns about dieing from this condition. After that he told her to order a monitor and a CT scan for me. I never got any feedback about my concerns. I couldn't hear what he was saying to her.
I would guess that neither one of them felt comfortable commenting on my fears, for what ever their reason. All of this just added to my anxiety.
Rick6

Rick

by sunny@heart - 2013-07-01 03:07:55

I can appreciate that feeling of fear that you feel as you do some preliminary research.... I scared myself looking up Pulmonary Hypertension.... which showed up in my angiogram....
I agree with previous message to ask to talk to someone in the office... a nurse perhaps... and then take a deep breath... several times....
I'm so sorry that this has popped up in your life.... however, we often underestimate our ability to cope....

Rick

by BStanding56 - 2013-07-01 12:07:27

The Internet is a brilliant tool but it can cause anxiety where it should not. I have too scared myself to death reading the internet in the past. Your words the test result stated a suggestion of Sarcoidosis, this does not say there is. Does your consultant not have a secretary, surely you should be able to talk to someone about it. I really feel for you and do hope you are worrying needlessly, someone will be along soon and hopefully can give you some reassurancexBeth

Addressing your concerns

by chazzf - 2013-07-21 09:07:13

Find another cardiologist.

I was diagnosed with cardiac sarcoid (both via biopsy and PET scan) and my Dr. immediately said he didn't know much about this and that I should find someone who does. Check with Cleveland Clinic--you can visit (as I have) and or do remote consult. I'm sure they will help you find someone locally if you can't.

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