As I wrote in October, we've been waiting for results from the analysis of an August CT scan. Well, the results show that right ventricle is "mildly to moderately enlarged". This clearly isn't ideal, but isn't as bad as it realistically could have been.
We'll meet with Dr. Ringel sometime in the coming weeks to discuss timing of pulmonary valve replacement. I'm not sure where that discussion will go quite yet, so stay tuned.
Sunday, December 4, 2011
Tuesday, November 8, 2011
Balancing Act
I blogged recently about my current pulmonary stenosis, or narrowed pulmonary artery, and how it's affecting me. I've been feeling the same since then, enjoying a 20 mile bike ride this past weekend with friend Eric, averaging just over 11 miles an hour over a mostly-flat trip on trails around BWI airport. I had to rest twice along the way, but that was mostly from some fun sprints. With good conversation, comfortable temps, and plenty of sun, it felt great.
There isn't anything else new since my last post, except for me getting this time to write. We are still waiting to determine when the next steps will happen, but for sure we are headed toward them.
The important thing to remember is that the stent I had inserted in 2009 had to strike a very fine balance. If we chose too narrow of a stent, not enough blood gets to the lungs, I'm winded, and like I mentioned before, the heart ultimately gets unhealthy from overworking. But the opposite is also true. A stent with too large a diameter might deliver enough blood to the lungs, but more easily allows blood pumped to the lungs to flow back into the heart. This backflow creates the same problem, requiring the heart to work harder to compensate, eventually enlarging the heart muscle and thickening its walls, resulting in reduced function.
Even if this balance had been maintained, however, it would not have been ideal. I was still getting some of each side effect. It's just that my current narrowing pushed me toward one extreme, moving me toward needing the pulmonary heart valve that God meant to be there in the first place.
So, what next?
In all likelihood, I'll be getting the cool new Medtronic Melody Transcatheter Pulmonary Valve in hopes of delaying another full-on open heart surgery. The valve is attached to a stainless steel stent, which is actually a bit stronger one than the one I have today. This means the new hardware eliminates the narrowing, provides the much needed missing valve, and reduces the likelihood of future stent fracture or bending. Amazing. If it goes as wonderfully as that did, I'll stay one night in the hospital and feel instantly better than I did before.
The deal, though, is that this amazing bit of technology doesn't last terribly long. It is generally meant to get eldery people through so they never need a big surgery, or to get adolescents into adulthood when a big surgery is likely to be more effective.
For me, the Melody valve, or actually two of them in succession, should delay a big surgery somewhere between a few months and 15 years. Yes, that's a big range, but the Melody is new and there simply isn't much data. With luck, it'll be long enough so some new procedure or technology makes that big procedure simpler. Make no mistake, however, in all likelihood I've gone from a hopeful 30% chance of resurgery in 30 years, to 100% in the next 15.
So, time and test results will tell us when we take the next steps. In the meantime, I'm going to enjoy the great weather and preparing for the holidays, and will do the best I can balancing all the things that life requires :-)
Thanks for listening.
There isn't anything else new since my last post, except for me getting this time to write. We are still waiting to determine when the next steps will happen, but for sure we are headed toward them.
The important thing to remember is that the stent I had inserted in 2009 had to strike a very fine balance. If we chose too narrow of a stent, not enough blood gets to the lungs, I'm winded, and like I mentioned before, the heart ultimately gets unhealthy from overworking. But the opposite is also true. A stent with too large a diameter might deliver enough blood to the lungs, but more easily allows blood pumped to the lungs to flow back into the heart. This backflow creates the same problem, requiring the heart to work harder to compensate, eventually enlarging the heart muscle and thickening its walls, resulting in reduced function.
Even if this balance had been maintained, however, it would not have been ideal. I was still getting some of each side effect. It's just that my current narrowing pushed me toward one extreme, moving me toward needing the pulmonary heart valve that God meant to be there in the first place.
So, what next?
In all likelihood, I'll be getting the cool new Medtronic Melody Transcatheter Pulmonary Valve in hopes of delaying another full-on open heart surgery. The valve is attached to a stainless steel stent, which is actually a bit stronger one than the one I have today. This means the new hardware eliminates the narrowing, provides the much needed missing valve, and reduces the likelihood of future stent fracture or bending. Amazing. If it goes as wonderfully as that did, I'll stay one night in the hospital and feel instantly better than I did before.
The deal, though, is that this amazing bit of technology doesn't last terribly long. It is generally meant to get eldery people through so they never need a big surgery, or to get adolescents into adulthood when a big surgery is likely to be more effective.
For me, the Melody valve, or actually two of them in succession, should delay a big surgery somewhere between a few months and 15 years. Yes, that's a big range, but the Melody is new and there simply isn't much data. With luck, it'll be long enough so some new procedure or technology makes that big procedure simpler. Make no mistake, however, in all likelihood I've gone from a hopeful 30% chance of resurgery in 30 years, to 100% in the next 15.
So, time and test results will tell us when we take the next steps. In the meantime, I'm going to enjoy the great weather and preparing for the holidays, and will do the best I can balancing all the things that life requires :-)
Thanks for listening.
Saturday, October 29, 2011
Ah, so that explains it
So as I said in my last post, I've been feeling a lower exercise threshold over the last year. Sort of like a glass ceiling, I explained to someone, where I feel like I should be able to do more, but am held back.
Well a visit with Dr. Ringel confirmed it's not my imagination. My pulmonary artery is indeed narrowed again. Not as severely as the first time, mind you, but narrowed nonetheless.
It's academic to know exactly what happened, but it's one of three things: 1) the stent is fractured, 2) the stent is crimped, or, 3) my tissue grew into the stent. In each of these cases, the artery is narrowed and, when I exercise vigorously, not enough blood is getting to my lungs.
While I otherwise feel fine, this is not a condition my heart can handle for the long haul. The heart needs to work too hard to push blood through this smaller-than-normal opening, the effect being a right ventricle that grows in size. When the ventricle size reaches some threshold, the way understand it, it won't pump as well. And if it's like a left ventricle that's overtaxed, it could reach a point where when the root issue is resolved it would never return to normal. That would be not good.
So there are two keys to knowing the next step. One, if I decide I don't like how I feel, I could work with Dr. Ringel to fix the problem now. I won't say, at least today, that I'm there yet, both physically and mentally. That is, I generally feel fine and the exercise threshold is high enough that I can deal with it. But because the stent procedure in 2009 eliminated my pulmonary valve, there's no such thing these days as a permanent solution. Anything we do now is only temporary. Once I get the first procedure, it generally follows that the second procedure will be sooner down the road. There's a part of me that doesn't want to get on any road until I need to. More on this later.
But it's not all about about how I feel. The second key is the analysis of test results that look at my right ventricle. If my right ventricle is getting too large, Dr. Ringel will recommend we fix the problem now. Seems easy. But the trick, however, is getting results that give enough information. The best test for most people is an MRI, but alas this is not the case for me. Because it is metal, and because of its placement, my stent would almost certainly create noise in an MRI exactly where the data is that we need. So in the meantime, Dr. Ringel's staff is looking closely at the CT I had done in August, and combining that with a recent echocardiogram, in hopes of learning what's going on. We shall see.
With that, I will close. In my next post I'll talk about the solutions that we'll be looking at.
Well a visit with Dr. Ringel confirmed it's not my imagination. My pulmonary artery is indeed narrowed again. Not as severely as the first time, mind you, but narrowed nonetheless.
It's academic to know exactly what happened, but it's one of three things: 1) the stent is fractured, 2) the stent is crimped, or, 3) my tissue grew into the stent. In each of these cases, the artery is narrowed and, when I exercise vigorously, not enough blood is getting to my lungs.
While I otherwise feel fine, this is not a condition my heart can handle for the long haul. The heart needs to work too hard to push blood through this smaller-than-normal opening, the effect being a right ventricle that grows in size. When the ventricle size reaches some threshold, the way understand it, it won't pump as well. And if it's like a left ventricle that's overtaxed, it could reach a point where when the root issue is resolved it would never return to normal. That would be not good.
So there are two keys to knowing the next step. One, if I decide I don't like how I feel, I could work with Dr. Ringel to fix the problem now. I won't say, at least today, that I'm there yet, both physically and mentally. That is, I generally feel fine and the exercise threshold is high enough that I can deal with it. But because the stent procedure in 2009 eliminated my pulmonary valve, there's no such thing these days as a permanent solution. Anything we do now is only temporary. Once I get the first procedure, it generally follows that the second procedure will be sooner down the road. There's a part of me that doesn't want to get on any road until I need to. More on this later.
But it's not all about about how I feel. The second key is the analysis of test results that look at my right ventricle. If my right ventricle is getting too large, Dr. Ringel will recommend we fix the problem now. Seems easy. But the trick, however, is getting results that give enough information. The best test for most people is an MRI, but alas this is not the case for me. Because it is metal, and because of its placement, my stent would almost certainly create noise in an MRI exactly where the data is that we need. So in the meantime, Dr. Ringel's staff is looking closely at the CT I had done in August, and combining that with a recent echocardiogram, in hopes of learning what's going on. We shall see.
With that, I will close. In my next post I'll talk about the solutions that we'll be looking at.
Sunday, September 25, 2011
Hanging with smart people
You know, it's funny. I have these periodic checkups with my heart specialists at Johns Hopkins Hospital, and I actually look forward to them. No, it's not that I look forward to hearing I need surgery or some other delicate procedure -- fortunately I've only had one of each. But, justified or not, I feel I'm in good hands. I appreciate the thought my doctors put into the issues I've had, their candor, their wisdom, and simply, their intelligence.
That said, I had a routine checkup this week with Dr. Cameron. The hope, and indeed the finding, is my aortic root has stayed the same size since my checkup last October. The longer it remains stable, the longer it looks like it will remain so. My next checkup on this won't be for another 18 months (instead of 12), and I can lay off the CT scan's radiation and just get an MRI. Great news.
Ann Marie and I also discussed with Dr. Cameron my sense that my exercise threshold has dropped over the last year. With that, I have an appointment early October with Dr. Ringel, the specialist that put in a stent to resolve my narrowed pulmonary artery in October, 2009. Back then I'd get winded walking up stairs, where now it's when I run up them (after, say, 3 or so flights). That's a definite drop from late 2009 and the first half of 2010, so we're going to see if things have narrowed since the procedure. It's not uncommon, Dr. Cameron said, for this strong muscle (the heart) to squeeze the stainless steel stent somewhat. We shall see.
Stay tuned, and in the meantime, enjoy the time you spend with smart people :-)
That said, I had a routine checkup this week with Dr. Cameron. The hope, and indeed the finding, is my aortic root has stayed the same size since my checkup last October. The longer it remains stable, the longer it looks like it will remain so. My next checkup on this won't be for another 18 months (instead of 12), and I can lay off the CT scan's radiation and just get an MRI. Great news.
Ann Marie and I also discussed with Dr. Cameron my sense that my exercise threshold has dropped over the last year. With that, I have an appointment early October with Dr. Ringel, the specialist that put in a stent to resolve my narrowed pulmonary artery in October, 2009. Back then I'd get winded walking up stairs, where now it's when I run up them (after, say, 3 or so flights). That's a definite drop from late 2009 and the first half of 2010, so we're going to see if things have narrowed since the procedure. It's not uncommon, Dr. Cameron said, for this strong muscle (the heart) to squeeze the stainless steel stent somewhat. We shall see.
Stay tuned, and in the meantime, enjoy the time you spend with smart people :-)
Monday, June 13, 2011
There's a location in my photo!
My family has been taking lots of photos recently. That's a good thing. But I wanted to learn how certain sites, especially Facebook, handle privacy of photos marked with location. I'm all for sharing location for lots of places, but not our family and friends' houses or our place. Do sites allow me to control this?
First, a little background.
Whether location is stored, and how accurate it is, depend on a few factors. The camera does not necessarily need GPS to know its location. There are other technologies for approximating location, such as ip location, wifi location, and mobile phone tracking. Depending on the hardware involved and environmental conditions, such as the weather for GPS, the recorded location can be fairly precise.
My experiment was fairly simple. I started with a vacation photo from last summer. The camera we used did not record the location, so I added it on my computer using Microsoft's Pro Photo Tools. The tool allowed me to put a marker on a map, in Dillon, Colorado, and save the photo back to my computer with the location embedded.
I then uploaded the photo to three web sites to see if the location in the photo would automatically be shared with anyone who viewed, or downloaded, the photo.
Here are my results.
- Flickr - The Flickr site did exactly what I'd hoped. By default, the location of the photo was not available to others. When I clicked the optional "Add this photo to your map" option, Flickr displayed the message "Your camera has suggested that your photo was taken in this location". Kudos to Flickr for this message, and the word "suggested" since there's no guaranteed accuracy. Flickr then gave me the option to keep location private or share it. And within my account privacy settings, Flickr gives the option to automatically import location data (off by default) for new photos. This would be handy if I didn't want to go through the privacy step for each photo. Anyway, to verify Flickr kept location private, I viewed the photo as if another user would (not logged in), saved it to my computer, and inspected it with Pro Photo Tools. As expected, Flickr removed the location from the file for download.
- Panaramio - Panaramio did the complete opposite of Flickr. The location of my photo was instantly available to anyone I shared the photo with. There was no option I could find to make location private, remove it completely, or to change the location privacy in my account settings. There is a feature to enable photo location with Google Latitude (off by default), but that didn't protect the upload I did today. I suppose the only saving grace is that Panaramio showed a map right next to the photo with the photo location, so if I was paying attention I'd see that location was detected.
- Facebook - Facebook did something odd that left me a little uncomfortable. It never asked if I wanted to keep location private or share it. It didn't display a map or location name. It didn't seem to recognize the location at all. And when I downloaded the photo, the location wasn't part of the file. So what made me uneasy? I couldn't find anything in Facebook help or privacy settings about location at all. Nothing that said location is automatically removed and not stored anywhere on Facebook computers. And nothing that said if Facebook some day decides to add a photo location feature, that they will only share my photo locations if I explicitly allow it. If these things are written somewhere, I'd love to see them. Until then, I'll be sure to remove sensitive locations before I upload to Facebook, and remind my family and friends to do the same.
So, top scores to Flickr. With 148 million publically-geotagged photos, and presumably many more with private location, it's good to know they're on their game when it comes to privacy and user control.
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