New doctor, same good story

We met yesterday for the first time with my new cardiologist, Dr. Ari Cedars, at Johns Hopkins Hospital. This was my annual checkup, complete as usual with an echocardiogram and time sitting in little kids chairs since this is, after all, pediatric cardiology.

Ann Marie and I both very much like Dr. Cedars. He's energetic, positive, deeply knowledgeable, and had thoroughly read my history.  We are quite encouraged that things remain stable. With luck, my aortic valve may last me for the rest of my life (the goal of the Ross procedure), which would be awesome. The pulmonary valve I received in 2014 won't last as long, but so far, so good.

Oh, I also ran my hospital stairs test like I've done in previous years. Sprint up as many floors as possible before I'm thoroughly out of breath. I made it the equivalent of 9.3 residential staircases, or 112 steps. I do believe I made it to the equivalent of 12 flights last year, which, if correct, is admittedly a little disappointing. I want another shot at it!  (I'll post an update here if I do :)

Thanks for reading!

Yes, no news is good news

So it's been 3 years since I last blogged about my heart health, and I thought it's about time I catch you up. The short story is that, earlier this year, my cardiologist at Hopkins again confirmed all is stable, and, earlier this week, I hiked to the top of Old Rag Mountain you see in this photo.  So yeah, I'm doing well.

I've had a checkup at Hopkins least once per year.  Each time I learn something new, whether it's the finer points of selecting the right cuff to check someone's blood pressure, or the ever-improving CT scanning equipment which now times imaging with heartbeat to measure the aortic root with less margin for error.  As always I've felt fortunate to have access to great doctors who never stop learning.

Each appointment has followed pretty much the same pattern:

1. Carefully measure my aortic root, and other key aspects of the heart, with an echocardiogram and sometimes a CT of the chest
2. Provide current and previous test results to a team of experts, including my cardiologist and others, asking everyone to user their expertise and wisdom to identify possible changes in the heart
3. Recall that the test results can vary for factors unrelated to my condition, that we're looking for changes measured in one to just a few millimeters, and that a handful of millimeters can make the difference between health and heart surgery
4. Discuss how I've been feeling, my general health, the test results, and their conclusions
5. Leave with about 75% relief that things seem stable and optimism that they'll remain so, and 25% sobriety that it doesn't always go that way

This year's appointment was bittersweet.  I had known that my Hopkins cardiologist, Dr. Ringel, would be retiring, and this year's appointment indeed turned out to be my last with him.  He has for sure earned his retirement, so I'm excited for him to reached this point.  

But looking back at his 11 years with me as a patient, along with input from other experts, Dr. Ringel and team also had an epiphany of sorts.  It turns out that the aortic root sutures from my 2008 Ross procedure, and to some degree the scarring, are precisely where the risky areas would normally be.  If there were a dissection, it would keep the blood from getting between the layers of the aorta walls, which can develop into something quite serious in other patients. 

This epiphany, along with positive results and conclusions for my valves and ventricles, left me with improved optimism for the new year.  I'll keep doing my best to remain in shape, reducing my chances of introducing a complicating condition, or improving my ability to recover from whatever procedures remain in my future.

Thanks as always for listening!

Stable

After a successful appointment in 2016, my cardiologist recommended I see him again in 12 months.  Previously it had been 6 month appointments, or even more frequent, since 2009.  In my recent 2017 appointment, he suggested I might want to go on a 2 year cycle, seeing a "routine" cardiologist in intervening years (he's a specialist).

This is good news.

It is my heart's stability that led to his recommendations. The pulmonary valve I received in 2014 is doing well. The aortic valve is mildly to moderately insufficient (i.e. leaky). The left ventricle is a normal size and not growing.  The tri-cuspid valve is not leaking. And the aortic root, while still dilated, appears stable.

I'll take this news as a sign to enjoy life, eat well, and to continually improve through exercise.  I feel quite lucky to have those options!

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.

Looking back and looking forward

I had an echocardiogram and consultation yesterday at Hopkins. I'm glad to know the heart issues of the summer are behind me :-)  The new valve is doing just what it was intended to do, and the pressures that had been high are where they belong.

My lungs seem to be healing well and haven't held me back. While I haven't yet returned to my normal exercise level, I did enjoy a superb 58 mile bike ride on Saturday. It's great to feel more and more like myself. I also feel lucky how relatively easy my clots were to deal with... I've met plenty of people who had more serious complications than I did.

We now resume focus on the rest of the heart (left side), especially the aortic root (where the aorta connects with the heart).   Docs will review recent and historical CT's and echocardiograms to see how things have changed.  The hope, of course, is "not much".

Next regular checkup is in March. Thanks for listening in, and for all your kind words.

Back from vacation

We're back from 10 great days in California for vacation plus 3 in New Jersey for a Krahe-Buettner family reunion. All fun.

I've been feeling great, but I do know my lungs are still recovering. Had a small amount of discomfort during a chest cold I had early in the month, then felt a bit if restriction bicycling this weekend (riding moderately fast).

Next appointment is September 4th.