Personal Goals

9/11 Heroes Run, Annapolis, MD

A wise friend recently told me how he used to time himself running.  5 miles.  6 miles.  Whatever length, he'd check his performance and work to shave seconds off.  But then, he says, he got older, and he stopped obsessing.  Now he just runs for the pure joy of it.  He's still in great shape.  In a recent 5K race, where he finished at the top of his age group, he didn't even bother to wear a watch.

Clearly I haven't reached this level of maturity.  In August I shaved 2/10th's of a second of my (slow) 100 meter sprint time.  This month I averaged 14.2 miles per hour bicycling 22 miles around BWI airport.  October will mark 4 stable years without a pulmonary heart valve ... and, despite having no real control over the situation, I'm shooting for 5 :)

So yes, I recently had a scheduled checkup at Johns Hopkins Hospital.  My cardiologist was happy to hear I'm remaining plenty active (actually more than ever) and feeling great.  I was happy to hear that, despite some crazy sounds my heart continues to present to the curious stethoscope wearer, everything seems stable and there are no real changes from my visit 6 months ago.

As with each visit, Ann Marie and I learned a lot in our conversation with Dr. Ringel.  He explained that in my case he has had to "reset his thinking", because he knows he has the tools to "fix" my condition.  But since no fix is permanent, I'm kind of 4 years ahead of the game.  Assuming I remain stable, the clock doesn't starting ticking until I get a new valve put in.  And believe me, I'm happy to wait.

So unless symptoms appear sooner, my next checkup is 10 months away.  Should I be ready for a "fix" then, I'll have flexibility for scheduling a procedure.  You can be sure, unless there's a clinical reason to act quickly, I'll push the procedure until after I hit my 5 year mark :)

Taking a deep breath

All is well!  The stent is in fine shape.  What appeared as a wobble in the echocardiogram a ~week ago was likely caused by the stent's manufacture.  The flouroscopy today showed no fractures and no cause for concern.  Nothing beats having the right test with a room full of high-tech equipment and well-trained professionals.

It feels great to be back in control, at least to some degree, of when my next medical procedure will be.  I'll stay fit, eat well, and hope that my heart stays happy as long as possible.  I'm happy to be the one to determine my destiny, not some bit of hardware, thank you very much!

As always, thanks for listening.

Prepping for test tomorrow

My test at Johns Hopkins Hospital is scheduled for 6am tomorrow.

The test itself is easy and requires no clinical preparation.  It's relatively quick.  There's no fasting required.  We'll know the results immediately   It's essentially like an x-ray but I'll need to wear a hospital gown.

Mentally, however, I need to feel prepared for the possibility that some sort of procedure will follow in the days or weeks (maybe hours?) afterward.

So this weekend I started and today I'm finishing as much as I can.  Got new cellphones.  Getting the tax paperwork finished.  Fixing some computer issues.  Finishing some college things with Eddie.  Paying bills a few weeks out.  Having lunch with Ann Marie.  Hoping to play some cards tonight with the kids.

I'll update tomorrow with test results.  Thanks for reading!

Still stable, but a wobble

Was it really 9 months ago that I said I'd "write more when I have time" and "my next checkup will be in another six months"?  Yes and yes.  But considering my heart checkup was just this week (due to scheduling) I don't feel terrible for not writing, just a little guilty.

First I'll say I've been feeling great, especially since I started exercising more since the summer.  The great Fall weather, like-minded friends (and daughters!), long work days, and convenience of gyms & working out at home all helped motivate me. Just this week I re-ran the stairs at the Johns Hopkins outpatient building (pictured here) as a measure of my condition -- I've been doing that for a few years.  I ran 5 1/2 flights (165 steps) before needing to walk and then rest.

My echocardiogram this week, along with my cardiologist's expertise in interpreting such things, confirmed my heart is doing as well as I feel.  Both the right and left ventricles are performing well.  The right is enlarged as expected, but it hasn't grown since last year.  A measure of blood flow across the stent in my pulmonary artery hasn't changed either, indicating that artery hasn't changed in size.  And my aortic valve, which was the original problem we addressed in 2008, is happy.  All of these are very good things.

So while I'm doing great, there is an indication the stent is not.  A test in the next weeks will confirm, but it appears the integrity of the stent itself is in question.  If the test confirms the stent is structurally unsound, we'll have to act soon.

First, a refresher.  The stent is a wire mesh tube, 19mm (3/4 of an inch) in diameter, and maybe 65mm (2.5 inches) long.  The stent holds open the pulmonary artery at the heart, which is where the valve rejection (and narrowing) took place.  By design, the stent extends into the right ventricle a few millimeters, rather than stopping right at the interior wall.  This placement, I gather, either keeps tissue from covering the stent opening or the muscle crushing the end of the stent -- I don't actually know and, I suppose, it's academic.

The problem is a wobble.  When viewed in the echocardiogram, a 2 dimensional video, the end of stent inside the ventricle is moving as the heart functions.  This suggests one or more fractures in the metal.  Enough wobbling and the stent becomes structurally unsound, and ultimately the end breaks off.  To me, if I absolutely must have metal floating around in the body, inside the heart and on the way to the lungs is one of my very last choices.  And while my cardiologist says this wouldn't necessarily be as bad as it sounds, I'd much prefer to avoid it.

Thanks to the wonders of modern medicine, and a bit of radiation, a quick, non-invasive flouroscopy will determine the condition of the stent.  This 3D view will tell us whether the stent needs attention immediately, or whether we can monitor it over time.  The test isn't scheduled yet, but I expect it sometime in the next week or so.

In the meantime I'll avoid activities that might impact the chest, like kickboxing as my doctor joked.  Instead, I'll be preparing for some longer bike rides and, with Eddie's help, establishing a time for the 100 meter dash and working to improve it.

Thanks for listening, and look for a followup soon :-)

Stable

I don't have much time to write, but we got some positive news recently after two tests.  The short story is that my condition seems stable -- no measurable change to my right ventricle since my last checkup in October.  My metabolic stress test was also encouraging, at least clinically.  My endurance is far from where I like it to be, but it's not terribly below the average of guys my age and size.  So, there's no urgent clinical situation, just a bit of a limitation on physical activity.

I'll write more when I have time, but know that my next checkup will be in another six months.  Now for some travel!

A little more info

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.

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.