constrictive pericarditis

[Deb]

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.
Debbie                ***@****

[little debbie]

geoff
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.
Thanks       ***@****

[geoff]

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

[[email protected]]

Deb:

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.  

I wish you and your husband the best.  

CK

[CCF CARDIO MD - DLB]

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.