Last Wednesday (October 19, 2011), I met with Dr. Hijazi at Rush University Medical Center to get a second opinion. What I expected to be a fairly straightforward visit and confirmation of the recommendation for surgery that I received from Northwestern ended up leaving me more confused than anything. In short, Dr. Hijazi told me that he wanted to see more data before he would make any recommendations going forward, specifically the results of a cardiac catheterization and a lung perfusion scan. (Both of these tests are already scheduled at Northwestern as part of my pre-op appointments.) While Dr. Hijazi did say that some intervention would be necessary, he believed that surgery would not be among his recommendations. Because of the low blood pressure through the pulmonary artery, he is not worried about it rupturing due to the aneurysm. Further, he said that a stent could be inserted (via a heart cath, as opposed to open heart surgery) to open up the stenosis of the pulmonary artery's left branch.
The next 24 hours were filled with confusion, uncertainty, and -- quite honestly -- a bit of fear. After having been mentally preparing myself for a major surgery since I was first given that recommendation in mid-September, I was now told that it may not even be necessary. After talking about it with my family, I decided to do two things: (1) schedule an appointment for a third opinion (this time at the Center for Adults with Congenital Heart Disease at the University of Chicago Medical Center) and (2) follow up with the cardiologist at Northwestern who gave me the initial recommendation for surgery. I now have an appointment in early November to meet with Dr. Eric C. Svensson, the medical co-director of the Center, to get a third opinion.
The next day, Dr. de Freitas (the cardiologist at Northwestern) returned my phone call. I told him that after meeting with him and the surgeon there, I decided to get a second opinion for my own piece of mine. I explained Dr. Hijazi's conflicting recommendation and asked for some more insight to help make some more sense out of everything. I was, once again, very pleased and impressed with my interaction with Dr. de Freitas.
He explained that he agreed with about 95% of the other doctor's recommendation. He said that, in most cases, he wouldn't be as concerned about the aneurysm (again because of the low blood pressure in that area of the heart) and would choose just to monitor it, as opposed to recommending surgery. The difference with me is that I've already had heart surgery and there is a patch on that pulmonary artery. What he doesn't know (due to the lack of similar medical case studies) is the strength of that patch in the midst of the aneurysm and the likelihood of possible rupturing of the artery. He explained that his recommendation for surgery is based on his preference for taking a calculated risk now (having the surgery in a very controlled environment) in an attempt to prevent a possibly serious (and potentially an emergency) situation down the line.
Dr. de Freitas told me that he was pleased to hear that I sought out a second opinion and that I was taking the time to ask all the right questions. He patiently and thoroughly explained his point of view, but he made it clear that, as the patient, I am in the driver's seat. He said that -- technically -- this would be an elective surgery, and that the decision to go through with it (or not) is entirely up to me. While his recommendation was clear, he told me that I wouldn't be "fired as a patient" if I chose to not have the surgery and that he would be happy to remain as my cardiologist if I wanted.
For those of you who know me personally, I often have trouble making decisions about where to go to dinner when I'm out with my friends. Now I have to make the decision to "voluntarily" have an elective open heart surgery?! On one hand, the idea of walking into a hospital for such a major surgery while feeling perfectly healthy and normal (and knowing there will be a significant period of recovery required) seems ridiculous. On the other hand, now knowing the facts, I'm not sure I'm comfortable going about my day to day activities longer term (and continuing to have an active lifestyle) while always being concerned about the situation and wondering "what if" or when.
I think I know what my decision is, but I'm still planning to go for that third opinion at the University of Chicago. The surgery and all of the required pre-op appointments are still on the schedule at Northwestern. If necessary, however, a single phone call can change that.