Cardiac Sarcoid......Prognosis

Hi all my husband was Diagnosed with Cardiac Sarcoid in jan of 2008. He continues on Meth and prednisone and has an ICD/Pacemaker implanted. We are only 44 and I am wondering are there other cardiac sarkies that have led a full life for over 10 years? 20 years? should we start planning an earlier retirement (child in colllege, junior HS and 6th grader) He doesnt want to retire until 62.......will he make it? :( Thank you for any input

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What is his percentage of time pacing right now?

I had and ICD implanted on 8/31/09 and was in full A/V block at the time. I've been on pred and MTX since, and, although I'm having chest pains and shortness of breath, it's not from my heart! My last echo, EKG and nuclear stress test all show my heart is working fine now, pacing < 1% of the time...which is fantastic.

I wish the rest of my organs would follow suit! LOL

If he's not having any other issues, and the pred and MTX has been working, that's great. Keep us posted.

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Hi LMDaisy,
If you peek at my profile page you can get an idea of what we have been through.
What is your husband's ejection fraction?
My man's cardiologist wanted to put him on the heart transplant list but put that all on hold when the Sarc went into remission in April 2009. Not knowing he had cardiac sarcoidosis until his heart stopped has caused him multiple problems...brain injury after having sudden cardiac arrest, the damage to his heart caused by SCA and he was going downhill pretty fast until April 2009.
That is the thing with sarc anywhere in your body...there is no "normal"...the Lord has blessed us with more time together and I am grateful.
As of today my man is only on many heart sarc meds. His EF is 40% and he has trouble doing almost everything...difficult thing for a strong, young (46), ex-fire dept mechanic...he misses his old life but he is happy to be alive.

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Keep the faith miracles are performed daily.

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Hello LMDaisy,
I was diagnosed with Cardiac Sarcoidosis in August 2007 also at 44 yo. I've been through the ICD implant, pacing etc. but ended up on the transplant list. Mine was caught late so the heart meds did little to improve my situation. I'm currently on an LVAD and 1A just waiting for the call.
The hospital has a small support group and I have met a couple of people that have already been transplanted from Cardiac Sarcoidosis and both are doing well. One is back to work, he is similar age to us, and the other enjoying retirement.
I don't know where your husband is with Ejection Fraction. Hopefully they caught it earlier than mine and can do more with the heart meds. As the last post said, being on a low EF for some time is very frustrating because of your physical limitations.

I wish you both good luck!!

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Hi everyone thank you very much for your responses. Mike I would love to know where you are being seen and where the support group is. we are nearby in Littleton Massachusetts :0)

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I'm in Gardner. The support group was started at UMass in Worcester. I started out as a patient there, in fact they were the ones that diagnosed the sarcoidosis. I'm listed with Tufts for the transplant as they have close ties with UMass. The group meets every month and the next one is in Marlborough. I've found them helpful as a sounding board and for the inside scoop on what to expect. So far everything I've been through someone in the group went through so its good to chat to them and get their perspective.

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could you send me the exact info I'd love to go (with my husband who has Sarcoid of course hahah)

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I'm about an hour north of Philadelphia and am going to the Temple Lung Center at Temple University Hospital on Friday, 4/9 to see a pulmonary sarc specialist. My heart issues are OK, but the rest of me is going to hell in handbasket.

I've been seeing local docs associated with our hospital network, St. Luke's of Bethlehem, PA.

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Thank you Todd

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I had an ICD put in the end of Jan of this year. My heart is fine, but the electrical circuit with the brain is out of wack... My Cardiologist believes this is related to my sarcoidosis and is working on scheduling some sort of nuclear study to find out... I'm not sure if it matters or not...

Has anyone had a similar experience, where the heart is okay, but "electrical physiology" problems exist?

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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