I love it when research on multiple fronts finds the same conclusions.
We met this week with my cardiologist, who first identified my problem with an echocardiogram back in June. It was great to step back and get his perspective. He definitely favors the minimally-invasive procedures as a first step, and echo'd the words from Dr. Ringel, that my problem has "no perfect solution". After reaching out to the director of cardiology at the National Institutes of Health about my case, he learned that Columbia University in New York is one the centers of excellence on pulmonary artery and valve treatment. If I end up with a Melody valve, the 3rd non-invasive step I mentioned, Columbia is quite likely the hospital that would treat me.
We also learned more about the 2nd minimally-invasive step that would effectively eliminate my pulmonary valve. This is the procedure that sounded so weird to us last week. It seems, though, that your heart can tolerate a leaking or missing pulmonary valve when your lungs are healthy. Unhealthy lungs, like those from smoking or lung disease, create back-pressure when the heart pumps blood to the lungs from the right ventricle. Where normal pressure is about 30-35, unhealthy lungs can push this to 60 or 70, causing problems that back up into other areas of the heart. Someone in this condition definitely needs a pulmonary valve. My pressure measured about 27 before surgery, which is a great indication that this, if needed, could work for me. Good thing the only thing I ever smoked were my tires!
Saturday, August 29, 2009
Friday, August 21, 2009
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!
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!
Tuesday, August 18, 2009
Opinions starting to come in
Today we received two of four opinions my surgeon is seeking. Granted, they were laden with terms that only a cardiac surgeon could understand and love, and we haven't gotten my surgeon's interpretation yet.
Our read, though, is that the two surgeons differ somewhat on recommended next steps. We were glad to see sprinklings of phrases like "might be worth a try" and "might delay the need for reoperation" when referring to certain non-invasive procedures. It's also good to know that at least one of the surgeons has treated several cases like mine, and many if not all had positive outcomes.
Nothing definitive, of course, but figured I'd share what we know!
Our read, though, is that the two surgeons differ somewhat on recommended next steps. We were glad to see sprinklings of phrases like "might be worth a try" and "might delay the need for reoperation" when referring to certain non-invasive procedures. It's also good to know that at least one of the surgeons has treated several cases like mine, and many if not all had positive outcomes.
Nothing definitive, of course, but figured I'd share what we know!
Sunday, August 2, 2009
Still waiting, but traveling
We're still in a holding pattern waiting for the busy experts who'll help decide what's next. This includes my surgeon, who recently performed surgeries on each of the three days that were supposed to be the start of his family vacation.
In the meantime I've been feeling pretty much the same, but exploring my limits a little. I tried running for drills at Ultimate practice, but that was a bit much. Swimming and mountain biking have come easier, though, which is great. I'm especially psyched about mountain biking as I'm really enjoying the bike I bought last year, the miles of great trails near home, and my sometimes riding partner, Nika!
Also good news that, after reviewing things, my surgeon is OK with me traveling. My work schedule permitting, we'll be heading to Cleveland this month for parties on both sides of the family. Should be fun!
In the meantime I've been feeling pretty much the same, but exploring my limits a little. I tried running for drills at Ultimate practice, but that was a bit much. Swimming and mountain biking have come easier, though, which is great. I'm especially psyched about mountain biking as I'm really enjoying the bike I bought last year, the miles of great trails near home, and my sometimes riding partner, Nika!
Also good news that, after reviewing things, my surgeon is OK with me traveling. My work schedule permitting, we'll be heading to Cleveland this month for parties on both sides of the family. Should be fun!
Subscribe to:
Posts (Atom)