We met with both the medical director and the medical co-director of the University of Chicago's Center for Adults with Congenital Heart Disease. During our conversation, it became clear that these two gentlemen agreed with the cardiologist from Rush University Medical Center, who, during my appointment for the second opinion, recommended against the surgery.
Prior to yesterday's appointment, I had another phone conversation with the cardiologist from Northwestern, who called to discuss the results of my recent lung scan and heart cath procedures. He confirmed what the other doctors told me about the heart cath, which was definitely a good thing. Regarding the lung scan, he told me that the most significant finding (and one of the main reasons for having the test done in the first place) was the percentage of blood going to each lung. While the ideal distribution is 50/50, he told me that it's not uncommon for the distribution to be more along the lines of 45% to the left lung and 55% to the right lung. My lung scan showed that the blood distribution is approximately 20% to the left lung and 80% to the right lung!
Fortunately, the cardiologists at the University of Chicago received this test result prior to yesterday's appointment. (Some of my other medical records, for some reason, never made it to the University of Chicago. Before I left, the nurse had me sign the release paperwork so that she could follow up and re-request the rest of my records from both Children's Memorial Hospital and Northwestern Memorial Hospital.) Just like the Rush cardiologist had said previously, the University of Chicago cardiologists recommended having a stent inserted into the narrowed left branch of my pulmonary artery, which should correct the balance of blood distribution to the lungs.
One of the things that I've found the most interesting (confusing?) is the fact that the primary concern of the doctors at Northwestern (the aneurysm in my pulmonary artery) seemed to be the least of the concerns of the doctors at both Rush and the University of Chicago. When I followed up with the U of C cardiologist via email regarding this discrepancy, he—like the cardiologist at Northwestern—said that there isn't much data regarding the risk of rupture of the pulmonary artery. However, he added that
"it is almost unheard of for the pulmonary artery to rupture except in a few rare disorders (not tetralogy of Fallot). Also, we never seen pulmonary artery patches 'wearing out' over time - after surgery they form really tough scar tissue that just doesn't fail. Given this, it's our opinion that the risk of surgery, despite being very low (probably less than 1%), is still higher than the risk of rupture, so we would not recommend it. The only caveat here is I need to see the cath report details to know exactly what your pulmonary artery pressure is. I'm assuming its relatively normal, but just want to make sure."The cath report is clearly one of the missing pieces of data that is being requested again by the nurse. The cardiologist expects to be able to follow up with me early next week after he's had a chance to review both the cath report from Northwestern and the original op report (from 1981) from Children's Memorial.
While I have yet to make a final decision about my immediate next steps, there is a very good possibility that—based on this information I received from the doctors at the University of Chicago—I will actually not be going to Northwestern for the surgery that is currently scheduled for four weeks from today. However, because nothing is definite at this point, I have not yet canceled anything at Northwestern.
On one hand, knowing that there is a very real likelihood that I will not need to be having a major surgery at this point is a huge relief. On the other hand, it's all still very confusing and overwhelming. As I was telling my family members and a couple friends, the whole idea of surgery has been on my mind every single day—in one form or another—since the initial recommendation came in mid-September. Physically, I have been feeling fine. Mentally and emotionally, however, I am beyond exhausted. Within just the last month alone, I went from meeting with the surgeon at Northwestern and beginning to prepare myself mentally for this major procedure, to being thoroughly confused and unsure of what would be next after getting the second opinion, to going back to thinking that the surgery was still the better option, to (just as of yesterday) going back to grasping the very real and legitimate possibility of choosing to not have the surgery at this time.
At this very moment, I think I know what I'm going to do (or not do) in the immediate future. But then again, I've said that before. The jury is still out.