To rockchick63, Trevor, and anyone else trying to navigate the complications of constrictive pericarditis and when to have surgery:
When I developed constrictive pericarditis at age 47, I did a lot of research into the disease, prognosis, and surgical options. Last year at age 48, I had a pericardiectomy. The following is only one man's opinion. I am not a medical doctor, but I've read a lot of research and spoken with many doctors and surgeons, so please at least consider my advice.
If constrictive pericarditis is diagnosed very soon after the initial symptoms appear, there's a chance that it can be treated by anti-inflammatory medications, but this works successfully for fewer than one person in five. If the anti-inflammatories don't work within 3 or so months, the only possible cure is surgery.
Don't delay surgery. The success rate for surgery is much better for people whose constrictive pericarditis has not progressed too far. Furthermore, your heart is being damaged every day that you have constrictive pericarditis. There is evidence that the myocardium is damaged over time just by being constricted. It can become fibrotic. Over time the pericarditis can harm the electrical system of the heart. The rhythm of the heart may be affected (often A-fib). The heart chambers can change size and shape, and be damaged just by being constricted. And other internal organs can be harmed as well. Most people with constrictive pericarditis develop an enlarged liver and spleen (though they can usually recover following successful treatment). Blood flow issues can affect the kidneys. It's a bad overall situation.
The good news is that there is at least the potential for a complete cure through surgery, and the success rate has been improving in recent years. The published mortality rate for the surgery is about 6-15%, which is very scary. However, by going with one of the major heart centers that deals with this kind of surgery, and a surgeon that does lots of these, you can improve the chances beyond that. My surgeon thought that in my particular case, the mortality risk would be closer to 2% - which scared me far less.
My local cardiologist suggested that there would be little harm with waiting for surgery, but after reading the research literature, I think that his information is out-dated. Yes, there are risks in having surgery, but my quality of life was not good with all the heart failure symptoms, there was long-term damage that might be occuring to my heart, and the surgical results might be better if the operation were to be performed sooner.
I took the initiative to send my records to cardiologists at both Mayo and the Cleveland Clinic. At Mayo, an expert in constrictive pericarditis is Dr. Jae Oh. At Cleveland Clinic, the local expert is Dr. Allan Klein. These two hospitals perform more pericardiectomies than any others in the country, and Drs. Oh and Klein have published many papers about the disease. I don't think that you can go wrong with either of these two doctors and hospitals. In the end, I had my surgery performed by Dr. Hartzell Schaff, who does many of these surgeries at the Mayo Clinic, with Dr. Oh as my Mayo cardiologist. My recent cardiac tests show absolutely no signs of constriction. My heart failure symptoms have disappeared. My blood tests and recent ultrasounds show that my liver, spleen, and kidneys have returned to normal.
I highly suggest that you contact Dr. Oh or Dr. Klein now, even if your local cardiologist thinks that you should be near death before opting for surgery. It's your life, so take control of it. Make sure to have the pericardiectomy done by a surgeon that does many each year, at a hospital known for specializing in this procedure. If your cardiologist suggests that you wait until late heart failure for the procedure, I think they are giving you bad advice. Take the initiative to speak to a cardiologist and surgeon that specialize in constrictive pericarditis, and do it now!
Best of luck,