My 45 year old husband was diagnosed with constrictive pericardits last summer. In August he was sent to Birmingham for surgery. The surgeons removed the 1 1/4" layer of calcification from about 50% of his heart(leaving it on the back & where it penetrated the heart...pulmonary artery area).
He continues to be in poor health,suffering from congestive heart failure. He is short of breath all the time, is slowly retaining fluid(more on the left side of his body),sleeps very little,has pain & soreness in the left jugular vein area, has periods when his lips are numb,& sneezes constantly.
The cardiologists here say he is uncharted territory for them, they can answer very few of our questions.
He is on 20mg. lasix, aldactone,coumadin, & digitalis.
My question is: do we seek more aggressive treatment (& where), or accept that nothing else can be done?
What causes this disease & what is his prognosis?
Thank you very much for ANY info.
Previous radiation treatments, prior chest surgery, and old infections such as tuberculosis are some reasons for constrictive pericarditis. The disease is uncommon and the prognosis even with surgical treatment is often poor. It is possible that he also has heart failure in addition to the constrictive pericarditis and that is why the pericardiectomy was not that helpful. Whether he would benefit from another attempt at pericardiectomy or would be a candidate for heart transplantation are important questions that should be addressed at a referral center that sees cases like this more frequently than most hospitals. We have doctors here who have particular expertise in disorders of the pericardium. You could call the 1-800-CCF-CARE number and ask for an appointment with Dr. Allen Klein of cardiology, a recognized authority on pericardial diseases.
My 74 year old father just had a double by-pass 2 weeks ago and is not doing well. The main reason there have been complications is that his heart was totally encased in calcification. They removed as much of it as they could, but like your husband, were not able to get a lot of it.
They think the reason my dad may have had this buildup of calcification is due to working around asbestos, for a very short period of time, when he was in his 30's.
Deb. I'm sorry that your Husband is not doing well with this. I have Constrictive Pericarditis now. (36 months into diagnosis)
Thank you for your description of his condition. I have not found this information anywhere else. (I'm 44) I am not as badly off as he sounds to be. The news is discouraging but at least its there. Thanks again
thanks a million for your reply. We were beginning to think we were the ONLY ones who were experiencing this disease.
hopefully your constrictive pericarditis is not as advanced.
The doctors "guesstimate" that my husband has had this cacification growing in him for 20 years. He has been pushing himself for 6-8 years (just to keep going & hold down a job.)
Please correspond with us & let us know your circumstance.
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