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.

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 :-)

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.

You might already know that some modern cameras, especially camera phones, can record the location a photo. Some photo editing software can do the same, even if the photo was scanned from a paper photo. The process is called geotagging and location is typically stored as latitude and longitude within the photo image. That is, location isn't part of the photo that you see, but part of the file that is created. Some photo software detects location, some doesn't.

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.

1. 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.
2. 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.
3. 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.

Technology and the holidays

So Alli and I are out shopping together for an adopt-a-family gift she and Nika are contributing to in religious education class. The family creates a short wish list for Christmas, including essentials and special gifts they can't provide for themselves.

After we settle on some gifts, Alli mentions that she has her own wish list for the holidays. Her list is detailed enough that I can't commit it to memory, so she mentions she has it written on her iPod Touch. So I'm thinking it would be great if she emails it to me. Since her iPod requires a WiFi connection, and the store we're at doesn't offer one, I enable the WiFi hotspot on my smart phone. Her iPod connects, she emails the document, and voila her list is now on my phone.

Sure, the geek in me appreciates the technology. Not only was the solution quick (less than 30 seconds), it worked as designed. And yes, while it might appear my daughter is spoiled (I suppose she is to a degree), it's worth mentioning she bought her iPod with her own, hard-earned money.

That said, it still hit me ... my, how fortunate we are to have such luxuries.

Short (but great) visits

A wise brother once told me, and I've always agreed, that a short visit is better than none. This week we had three of them.

First, a visit with my surgeon, Dr. Cameron. The reason? We wanted to determine if the size of my aortic root, which is where the aortic artery attaches to the heart, hadn't changed in the last six months. It had dilated somewhat between my 2008 surgery and a June 2009 checkup, and after fooling a few since then, hadn't actually changed since. The result? No measurable change in over 1 year. Great! The more determinations like this, the better. We'll see him, and his great office staff, again next autumn. Hopefully it'll be another 10 minute conversation like this one!

Second this week was a fun get-together among the four youngest in my immediate family. I have to say I truly appreciate the humor each one weaves into everyday life -- I think I'm guilty of being the serious one too often! Here's a picture of the four of us.

Third, Eddie and I visited Johns Hopkins University on Saturday morning for an engineering and sciences open house. Eddie's only a high school sophomore and far from thinking seriously about what to study in college and where, so it was a relaxed, exploratory visit. Many nice Hopkins students answered our questions, and by skipping the afternoon what-it's-like-to-live-here sessions, we were back in time for him to attend his homecoming game. Perfect!

Short times, but great times, indeed.

Looking for a good used car

I'm looking for a well-maintained small sedan or hatch for a good friend. Must be automatic trans and $3000 or less. Know a car like this?

A spring in my step

I had a most excellent checkup with Dr. Cameron today. Two other doctors, and some tests which proved misleading, had raised some concerns recently. But now with the right data and some good perspective, I have a fresh start to the spring season. Wow, what a great feeling.

Background, if it interests you, goes something like this. Last July, when researching my pulmonary issue, we had noticed some dilation (aka widening) of the aortic root, the part of the artery near the heart. This dilation wasn't there before my September 2008 Ross Procedure, and it wasn't there immediately afterward, but had progressed in the 9 months afterward. Dilation isn't uncommon after the Ross, because the pulmonary tissue moved there isn't accustomed to the higher pressures on the right side of the heart. Continued dilation can ultimately lead to tears or ruptures (aka dissection), which isn't a good thing. But fortunately in most Ross patients the dilation stops, never causing a problem again.

In November and February I had tests that seemed to suggest the dilation was continuing, but it turns out they weren't the right tests for the job. The tests were echocardiograms, and are generally useful for measuring things like ventricle size and valve insufficiencies (leaks). But in an adult it turns out that measuring the aorta with an echo can mislead. In my case the numbers in a single test bounced between "the high 4's and 5.5" centimeters. This misled one doctor who too quickly commented surgery might be necessary to redo all the work that had been done in 2008. Yikes, that was a wake up call.

So, today we learn from Dr. Cameron that a CT scan instead is the best way to monitor the aorta size in an adult. My CT, done back in February, shows my aorta hasn't measurably changed since last July! That is awesome, and completely dismisses the notion that a procedure of any kind is needed. This is something we simply keep an eye on, measuring again with another CTA in October, and hoping no further changes occur. No medications are needed since my blood pressure is fairly low already, and I'm great with that!

One change I do have to follow is in lifting weights. From here out it's suggested that I don't lift anything more than 50 lbs. Basically I'm treated like someone with an aortic aneurysm, even though it's technically my pulmonary tissue that's dilated. Since there's no data on this for people like me, we play it safe. So, a few changes at the gym and less moving furniture and such, but I think I can get used to that!

All in all, a great day, and a huge relief. On to springtime fun!