Constrictive Pericarditis...severe

[Storrie]

In Feb, 2001 I had a chest x-ray that showed heavy calcification around the pericardium. I then went on to have a heart cath that showed that I had constriction, and a enlarged heart, mild right-sided heart failure, mitral valve prolapse and tri-cuspid leaking along with the mitral valve leaking moderately.  I have never had TB, previous heart surgery or a blow to the chest. They believe it is from an idiopathic orgin.  Probably a fever at 19.  I am a 39 year old female that has sent all reports to doctor's all around the US, most just scratch their heads, saying,"Wow, this is rare, and then I proceed to education them on the condition. I then proceeded to Mayo in Rochester and also an all day visit at your hospital with Dr.Klein last June.  He recommended that if my symptoms become worse,the acities, the chest pain, atrial fib, that would constitute an indication for surgery.  That being a radical pericardiectomy.  I have researched this heavily and the death rate for severe calcification is high and not a cure. It will return because the bacteria is still there.  Also on the back of my heart it has adhered itself to the myocardium.  So that can't be removed, also it is 10mm deep.  My question is this.  Since the pericardiecomy is not a cure, it is a temorary fix, why can't I go directly to a heart transplant list.  Between the valves,the enlargement of my left and right atriums and the severity of the calcification, wouldn't it be safer and wiser to have a heart transplant.  Also when I went to the Mayo Clinic they told me last June that if I didn't have surgery within six months I would be dead.  It is Jan, and I am still here and functioning.  Dr. Lytle at your hospital told me that I could wait a year, see him this June and see how bad I have progressed this year. I wholeheartly plan on following his advice, but again, my question to you is... If we know that this is prominent and we can't remove it from the parts that are adhered, must I go through the trama of a pericardiectomy first?  By the way, I met a friend on this forum whose husband has the same condition.  He had his percardiectomy last Jan.  They bailed after after two hours in surgery and sent him home.  The portion of calcification that they did remove has returned.  I have read studies all over the world with the same outcome.  I have found out that a percardiectomy is successful when the calcification is mild to moderate.  Sorry this is so long, I have tried forever to get to post this.  I appreciate any info you can give me.  I will be at Cleveland in June, so I already know to come back.  I just wonder how much damage is continuing to develop waiting.  I am in no hurry for surgery, but I don't want to damage my heart beyond repair either.  Thank you so kindly for your time.  Cathy

[CCF-M.D.-CRC]

Dear Cathy,
Eventually you may need to be considered for heart transplant but I would only consider that a last resort.  A heart transplant is a wonderful thing but it is not a cure-all and it substitutes one set of problems for another.   Thus it would be musch better if you could avoid a transplant as long as possible.  

Pericardectomy may relieve many of your symptoms and the risk in Dr. Lytle's hands is much lower than the national average.  I haven't seen your test reports but I would not conclude that surgery would not be helpful to you from what you have said.  On the other hand I don't think you are increasing your risks or worsening damage by waiting either.  If you are feeling OK and there are not significant changes in your echo it is probably OK to watch this for a little while (until June for example).  If you are worsening however then I think you will have to seriously consider going ahead with the surgery.  Hope this helps.