Jonathan's Journal

Well, I'm a couple of days past six weeks post-op and I just jogged seven miles! Felt like I could have done more -- very moderate pace, but still, it's amazing what a difference this operation has made. I couldn't jog three blocks before the surgery due to the stenosis/regurgitation. Got some intermittent arrhythmia (not afib, apparently), which is annoying, but which the doc says should resolve on its own as the heart adjusts. Guess we'll see. It happens more when I'm sitting or lying down, and more in the early afternoon/evening. Sternum healing up well but not there yet, but on the whole, feeling great and grateful!

Two weeks and two days post-op (Ross Procedure with Dr. Stelzer at Mt. Sinai), and I just got back from a beer and bratwurst party at a friend's place (I only had one small beer). Been climbing these steps (I keep uploading the picture but it isn't showing up -- going to post and see if it appears. If not, imagine three long consecutive flights of stairs in a park) six times, walking 2-3 miles, down to occasional ibuprofen or acetaminophen. Saw my cardiologist on Wednesday -- he said all the "interesting sounds" were gone. In other words, couldn't be happier with my recovery so far. The work these cardiac surgeons are doing is truly miraculous! Thanks again for all the help & support from this forum.

My surgery was Thursday afternoon, and I am amazed at how well the recovery is going. I'm out of the hospital (yesterday) and resting up at my mother in law's. Walked a little outside yesterday. Today I walked to Central Park and a little inside the park. Later walked to dinner. Probably 3/4 mile in all! Slowly, very slowly. But heart rate didn't even get up past 90. Weaning off the pain meds (again, slowly). Been having some issues with chills/overheating (body temperature stays around 98, but a little cold air can give me chills and a blanket can make me overheat). Can't wait to take my brand new Ross to my doubting-Thomas of a cardiologist! He's going to be amazed, I think.

Hi, everyone. Recovery going really well -- small setback with the kidney function, but all should be well. I have to say, hospital beds were very uncomfortable. Nurses were able to track me down a recliner and it is making a huge difference. Definitely recommend. Dr. Stelzer seems very pleased with the operation -- and if he' happy, I'm happy! Thanks for all the supportive comments!

This is Jon's wife, Alexandra. Less than 24 hours after his Ross Procedure, he is out of the ICU (he actually came out this morning) and eating chicken salad. :) He's taken several walks around the floor and for now at least pain is well-managed. He remarked on how his heart is not beating distractingly hard anymore. His wonderful surgeon Paul Stelzer also commented on the absence of a murmur--"probably for the first time in his life"--and showed us an amazing picture of his old, bum valve. Overwhelmed with gratitude. Still much recovery ahead but I hope Jon will be posting himself here soon about his experience.

My surgery is scheduled for a week from tomorrow (May 24). I'm wondering what I need to do now so that I will be comfortable during the weeks post-hospital release. My insurance will cover the rental of an adjustable hospital bed. Would that be worth the trouble? We have no recliner in our home (also lots of stairs). Someone mentioned a body pillow? Or a bolster? Am I overthinking this? I just don't want to be sending my wife out to Target while I'm lying flat & uncomfortable in our 3rd story bed wishing I'd taken care of stuff before the operation!

For those of you on the other side, if you had one piece of advice for someone heading into AVR, what would it be? Could be practical, mental/emotional, spiritual -- but only one!

Got my Ross Procedure with Dr. Stelzer scheduled for May 24th. Can't say I'm looking forward to it, but looking forward to getting it done and feeling better!

Well, I was going to take my wife to Rome next month, but after my most recent echo and subsequent discussion with my cardiologist, I've decided instead to have AVR surgery and vacation at home! Both great options, but I figure Rome will always be there but I might not be if I don't get this taken care of... Anyway, I've got appointments with Dr. Girardi and Dr. Stelzer, who I understand are two of the top valve surgeons in New York (where I live). But if anyone wants to make a recommendation, I suppose it couldn't hurt to consult a third. And yes, I am considering the Ross (against my cardiologist's advice) -- will hear what the surgeons have to say. Also, it's a little soon, but could anyone point me to a thread about all the stuff I need to do to prepare for the hospital and recovery? I know it's on the site somewhere, but I can't find it. Thanks!

Hi. Couple more questions for the community. I'm just wondering how people knew it was time to get the surgery. I'm in the moderate-severe category (pressure is severe, valve area is moderate/severe), and having some small, tweaky little symptoms, like the fact that I can't jog anymore (see my earlier post), and other than that, just some twinges of tightness in the cardiac area, maybe a little light-headedness but nothing that noticeable (could just be anxiety!). Did everyone wait until they had major symptoms like angina, fainting, shortness of breath etc? Also, I'm 48 years old, and doc says I'll probably need surgery within a couple of years at my rate of progression. Strongly considering the Ross procedure, but both my cardiologists' initial reaction was "No, way!" They say you're adding an additional point of failure with the second graft, and they say it's a more complex operation. They say a bio valve will keep me off thinners and when it wears out, I can get it replaced via minimally-invasive surgery. But one of them now seems a little more open to Ross after reading up a bit. So is it worth considering? I lead an active lifestyle and definitely don't want to be on blood thinners, so it'd be a bio valve for me if not Ross.

Hi, everyone. I've got a severely stenotic aortic valve with moderate regurgitation. Still not really symptomatic, although I'm definitely feeling stuff, and in particular I have a weird symptom that my cardiologists can't really explain. I get nausea and chest pain, but only when I jog. I'm very physically fit, and I can bike, rock climb, walk briskly, and really get my heart rate up with no problems. But if I jog for more than a couple of minutes, I feel gross and my heart aches, and if I push it, it sometimes takes my heart a couple of days to stop mildly aching. So I don't push it. But has anyone had or heard of anything like this? Also, on the subject of exercise, the protocol for severe stenosis is no strenuous activity. But I have now had two cardiologists tell me I can continue to do indoor "bouldering" which involves very strenuous moves with bursts of activity. They say my stress test shows normal heart function and blood pressure with exercise, and my aorta is not getting dilated, so they aren't worried. But I also see that many say sudden death occurs frequently as a result of strenuous activity, and they don't know why. So thinking of giving up the rock climbing and just doing mild aerobic stuff like biking. Thoughts?