11-28-2006, 07:24 AM
I've been struggling with recurrent pericarditis for months now (in my 5th occurrence right now.) I've got a pretty good rheumatologist, a good PCP, a fair neurologist and just added a cardiologist to the mix. Both my rheumy and the cardiologist are concerned about the pericarditis and we're trying medications (on prednisone and have been on methotrexate for a couple of months now - also neurontin and plaquenil.) But, now I feel like the rheumy is waiting for the cardiologist to do something and the cardiologist is waiting for my rheumy to do something. This is a very large medical facility (hundreds of doctors). I'd love to get all of these guys in one room so I can ask my questions and get them to work together. What chance does a patient have of making that happen in a big medical bureaucracy? Any suggestions..my husband says I'm not assertive enough. He comes with me sometimes, but....
11-28-2006, 08:31 AM
Unfortunately, in most large medical facilities, the doctors may not even know each other, since they don't tend to socialize outside their own specialities. And the chance of actually getting them together just to talk to you - realistically, I'd say almost non-existent _ I couldn't manage it with my mom's doctors when she was dying, and a couple of the doctors were actually clients of mine, so I had leverage to use. Despite the popularity of TV shows like House, it rarely happens that way in real life, and the "team" approach exists only in a few major medical centers. I spent almost a month in the ICU during a bout with a spinal infection that put me in critical condition, during that time, my (many) doctors wrote notes to each on my chart and never spoke directly to each other or to my family, other than to ask Michael whether I had a DNR order.
This is where your primary care doctor has to take responsibility and step up - as your primary caregiver, he is the one responsible for seeing the specialists do their job and work together. And unlike you, he does have leverage, because primary care doctors are the main source of referrals to specialists, and he can always send future patients elsewhere. So if your treatment seems to be at a stalemate, you need to discuss it with him and ask to intervene - this is part of his job. And you should certainly let both specialists know that you are not satisfied with the care you are receiving, and they need to come up with a plan. Your husband is right that you need to be assertive, but you also need to be informed. So do your own research about the condition, and treatment options, so you can discuss things with your doctors on equal terms. Since this is a large facility, chances are they have a medical library there or in the local hospital. Most of these libraries are open to the public and the medical librarians can help you locate information. If there is no library, check with the local chapter of the American Heart Association to see if they have an information packet about current pericardittis treatment. Once you know the options, you can confront your doctors and get this situation resolved. Women can't afford to be passive participants in the health care system - we have to be active in the decision -making process. So you are right to be concerned - now you have to act on it!