Consult with UCD

I'm sorry I didn't post sooner, but I wasn't exactly sure what to say. We did meet with the surgeon at UCD yesterday and we learned a lot. When we were told that Drew could have a two-ventricle repair by our cardiologist we thought it meant that they would undo what they've done and reconnect his heart to be just like a normal heart and he wouldn't need anymore surgeries.

Well, that is not what they meant. Or at least, not what Dr. Raff would recommend. It gets a bit complicated unless you know a lot about the anatomy of Drew's heart, but basically they would leave everything they've done, place a patch so that Drew would have two separate ventricles and place an external conduit from his right ventricle to his pulmonary artery. So his blood flow would follow a normal pattern, but his physiology would definitely not be normal. And conduits don't last forever and need to be replaced. Dr. Raff was guessing that a Hancock conduit would last about 15 years before it needed to be replaced. Risk of this surgery was estimated at 2-5% (of any complication from infection to death). Possible complications with this anatomy include stenosis and arrythmias, with Dr. Raff predicting we'd eventually have problems with arrythmias. When I asked him how they treat that, he said sometimes with medication, sometimes with a pacemaker, and sometimes with a transplant.

He presented us with the details of the other surgical option, which would be a Fontan. Risk of the surgery is lower, at about 1-2%. These surgeries typically last about 20 years and then a pacemaker or a transplant is needed. I told him I was scared of the Fontan because I knew that kids eventually need transplants and I just learned that transplants last about 10 years and they rarely re-transplant. He said that his bigger concerns were the possibility of developing PLE or plastic bronchitis. PLE I have heard of due to the unfortunate situation of a heart buddy developing the condition. I haven't heard of plastic bronchitis and I don't think I'm going to look it up. Also, he said with a Fontan Drew's exercise and endurance would be limited.

So we were a bit discouraged to learn that this was not the miracle fix we thought it would be, and that there will definitely be more surgeries in our future. It was also just reinforced that we don't know what the future holds as far Drew's heart is concerned. Transplant seems to be a possibility no matter which path we choose, and I don't like that. But it was still a good meeting, we learned a lot and got one extra opinion under our belts. I am very anxious to talk to Dr. Hanley from Stanford and hear what he has to say. We should hear from him tomorrow evening or Thursday morning. After that I want to meet with Dr. Azakie from UCSF because I haven't had a chance to talk to him myself yet. And then we'll make a decision about where to go from here.