Options are a good thing

Well we don't have any decisions yet but we sure do have a lot of new information. Let's see if I can get all of this across succinctly.

After my last post, my surgeon received feedback from the third colleague whose opinion he was seeking. He forwarded that doctor's email, as he had the others, then put them all into perspective for us in an evening phone call. The consensus is to attempt delaying surgery, perhaps by 10 years or more, with some minimally-invasive solutions.

We've since met with a cardiac catheterization specialist at Johns Hopkins, Dr. Richard Ringel. Smart guy. He spent plenty of time with us, never making us feel rushed, and explained things as if he anticipated each of our questions (we're wondering if our surgeon tipped him off ;-) Dr. Ringel explained a series of nearly-outpatient procedures, each designed to increase the blood flow to my lungs, and each a preparation for the next.

The first is a balloon procedure that would expand my pulmonary artery and test my heart's reaction to that. It would be a fine balance of restoring enough blood flow without causing the pulmonary valve to leak significantly, while hoping scarring doesn't return me to where I am now. We wouldn't know if it worked until some weeks later, but if it did we'd be extremely happy to stop there and keep an eye on things in the years to come.

If the balloon didn't do the trick, Dr. Ringel would install a coronary stent to hold open the pulmonary artery and valve. The procedure would guarantee my lungs received the blood they need, but would require my right ventricle to work harder than normal. As odd as that sounds, one of Dr. Ringel's patients, a guy much like me, has been living happily like this for 5 years, exercise and all. We're still trying to wrap our heads around this one, and will talk with my surgeon and cardiologist to get their perspective. It just sounds so odd.

The third procedure, if the first two didn't work, would be a catheter installation of a new pulmonary valve and stent. Just a few weeks ago an FDA panel voted 12-0 for approval of this valve, in part because of Dr. Ringel's recommendation. It's been in use experimentally since 1999 and in European hospitals since 2006. These valves don't last forever, however. When the first one wears out a second can sometimes be inserted inside the first, together giving a patient about 8 years of pulmonary function after just two nights in the hospital and two weekends of rest. Not a bad deal.

Before I close I should mention something else. All this talk of delaying surgery might make you think I don't want to go through that again. Well if you thought that, you'd be right! But honestly if I knew that one surgery now would be all I need for the next 50 years, I wouldn't hesitate. It's just that replacement parts used surgically simply don't last as long as the originals!

So, more consideration and discussions in the coming weeks, and definitely some next step, whether minimally-invasive or full surgery in the next couple of months. Thanks so much for listening in -- it's much appreciated!