Great results

Good news from Johns Hopkins for me today ... Tests this spring show no sign of genetic mutations that would cause additional concerns for my heart (specifically the risk of aortic dissection).  Whew, that feels great!  I'll check back in a year to see how far genetic testing has advanced -- it may warrant additional testing.

Oh, and the picture? That's me after 55 of the 75 miles my friend and I rode this weekend. Perfect weather, super ride!

Opinions

I've been slow in writing this heart update because I've had some complex appointments recently.  Nothing urgent, mind you, just a lot of new information.  New meds.  More tests.  And some mixed opinions.

Let me explain.

I've had three appointments at Johns Hopkins since early September, two in 2015.  Most recent was with Dr. Ringel to follow up on the craziness of last summer.  The new pulmonary valve from July is performing just as we'd hoped.  The three pressures that had measured high are now all where they should be, even slightly better than they were in September.  There is no evidence that the blood clots that lodged in my lungs had any ill effect on the new valve.  And because the valve's weak spot is infection, I've followed the standard recommendation for baby aspirin once a day, no dental work for 6 months, and as I have been doing for years, antibiotics before dental work.

So far, so good. The fact that I'm feeling fine, exercising as much as ever, is a real bonus.

My two other appointments came from renewed attention on the left side of the heart, where I had surgery in 2008 (the summer of 2014 addressed pulmonary issues on the right side).  Tests, though admittedly imperfect, now show that the aortic root, where the aorta attaches to the heart, has continued to dilate, now measuring slightly over 5 centimeters.  For people with their "original equipment" tissue, a measure 5 cm, from a normal 3 to 4 cm, is the point where corrective surgery is recommended.  Not correcting this problem increases the risk of aortic dissection, where the aorta tears (not good).  

But, like other Ross procedure patients, my aortic root tissue is not "original equipment".  While post-Ross dilation is not uncommon, there is debate about the risk of dissection for these patients, and the point at which surgery is recommended.  In the "you should be talking risk of surgery vs. risk of dissection" camp is Dr. Hal Dietz, I genetic guy I'm seeing who clearly knows what he's talking about.  I'm waiting to hear back on genetic tests that might tip the scales towards that discussion.

In the "let's just check you every 6 months" camp is Dr. Duke Cameron, my surgeon.  He's comfortable with where my aortic root is at, or at least is comfortable with the risk of dissection, for me, being less than the risks of surgery.  He put it best, when referring to the debate I mentioned earlier, that there are more people talking about the problem than there are patients with a real issue.

So, while we wait for genetic results I've started on a significant dosage of a blood pressure medication.   The hope, stemming from the laboratory and theory, is that this would help slow or stop the root dilation.  As long as I can tolerate the medication, I'll stick with it.

I'll wrap up for now, so I can call this post done.  Thanks for reading, and I hope to have good news in a month or so.