Peter's Journal

Hello all! A couple of weeks back I had my first echo since the one a few days after my surgery. While the technician was performing the echo, I heard a familiar voice enter the room and it was my surgeon, Dr. Stelzer. Dr. Stelzer was able to look on for a bit while the tech was doing her thing and told me that things were looking good. It wasn't until this morning that I had a chance to speak with my cardiologist who concurred that all was looking good with the echo as well as the activity from the halter monitor I wore for a day. I asked about the measurements of my left ventricle and the diameter is certainly shorter than it was previously and in the "normal" range. All around, I'm feeling good and wish it would warm up just a tad because it's been hard to keep up with the running as of late. It'll be a year soon so I'm sure I'll pop up with another update then.

I wasn't due for another visit to Dr. Fuster quite yet but last month when looking in the mirror, I saw what at first looked like a bluish pen mark by the top left part of my chest. When I lifted up my arm, I could see what looked like a swollen blue vein traveling from my chest along my arm towards the elbow. Well, that sent me off to Mt. Sinai for a quick ultrasound of the vein to make sure there was no clot or obstruction and there was nothing to worry about. It was just a vein that had burst and the blue was apparently the bruising. Everyone seemed rather unconcerned about it, thankfully. Dr. Fuster took a listen and said all sounded great. They fastened me with a holter monitor to measure my electrical patterns for 24 hrs before taking me off the metaprolol (heart rate had been a bit rapid after surgery) which Dr. Fuster is pretty certain they'll do. I can't shower for 24 hours so the woman I share an office with tomorrow is in for quite a treat! I'm now scheduled for an echo on 1/2/14 so should be interesting to see how things are looking that point which will be just before the 11 month mark. I'll be sure to provide an update then but my Ross Procedure and I seem to be doing just fine for now! Best wishes to everyone over the holidays.

I've put this off too long but thought I'd finally post an update. Not much of note to report but things continue to progress. Up until a couple of months ago, while I felt fine, like nothing ever happened, I just wasn't happy with my running. I felt like my heart rate just jumped up too high too quickly and I couldn't settle into a good run. For the last few weeks though, I feel like things have built up gradually and I've done a number of 4-mile runs without a problem. Hoping that I've formed a good base here and despite the cold weather, I'll increase the mileage from here. I have put on a bit too much weight post-surgery and I see my cardiologist in a month so I NEED to increase the mileage ASAP! Anyone reading the posts at the moment is likely also checking on Rachel's status fairly constantly as am I. During the day, I often find myself taking a quick look at what new journal entries are up as even though I don't jump in with a comment often, I'm often captivated reading about people's experience going through a similar experience. Every time I glance at the site, I'm hopeful that I'll see an update about Rachel making good progress. She's one of those people that you felt you made a connection with just by reading her witty entries and introspection about things to come. Her family's strength is nothing short of astounding and they are all certainly on my mind. If anyone who is reading this hasn't already, i would strongly suggest reading through Rachel's journal entries and sending her family a note.

Not much new to report which is probably a good thing. I met with my cardiologist last week who listened to things and said they sounds \"fantastic.\" I guess that we won\'t do an echo until September. I\'ve been so busy with work lately that I haven\'t been able to go for a real run yet. Hoping to do that this week once I clear my plate of things. I\'m back to my pre-surgery weight, plus a few, so I\'ll have to get back to the running ASAP. Still getting a bit tired going up the subway stairs but it\'s certainly much improved. We recently moved apartments so I had to give my chest a good test in picking up various things. It was a bit sore for a couple of days but I seem to have pulled through it just fine. The only other item of note is that I had the pleasure of meeting Adam Pick a few weeks back while he was in NY covering a conference. Just as nice in person as you would expect the founder of this site to be!

I suppose it\'s a good sign if things are going well enough that I don\'t seem to notice that the 2 month mark (April 11th) had come and gone. My back pain has mostly subsided with the exception of a little tightness in my back. I find that my heart is still pounding when I\'ve gone up a long flight of stairs or pushing a stroller up a hill (not my finest moment this morning). I assume that will get better with time....I hope! On a somewhat related note, I did manage to crack my front tooth biting on something that shouldn\'t have had a bone in it. My surgeon and cardiologist had hoped we could get away with not doing anything for at least a month since there\'s a preference not to do any dental work close to the time of surgery because of the potential implications stemming from pushing bacteria in the blood stream. Of course, I developed an abscess really quickly so the infection pretty much decided that for me and I\'ve since had my tooth pulled and replaced with a temp sitting on a zirconium implant. I\'m taking my antibiotics hoping that there won\'t be any related issues to deal with. I have my next appt with the cardiologist to do my first echo on 5/21 so I\'ll be back with an update after that!

It\'s been 5 weeks since my surgery so it\'s about time to finally get back to work. Unfortunately, after telling the office I would be back on Thursday I realized that I wouldn\'t be home for the first 2 days of March Madness. What the heck was I thinking... Anyways, I saw my cardiologist yesterday and he said things sounded \"fantastic.\" We won\'t due an echo for another couple of months. I\'m feeling stronger and the only two issues I have are 1. BP is still too high so we\'re adjusting some medications and 2. I still can\'t sleep. Every night I\'m still getting up around 2 or 3 and just can\'t fall back asleep. The Dr. said it\'s very common and stems from the anesthesia wreaking some havoc on the body along with time on the heart-lung machine. Things at home have been manageable. The only real pain I have is sitting up a few times at night in the bed which still puts a little strain on the chest. Well, the only real pain is to have to negotiate with my trio to climb into their cribs when my wife isn\'t around but they\'re actually listening to me the majority of the time.

Well, it\'s been just over three weeks and things seem to be going well. The back pain is mostly gone and I move around just fine. I still have a bit of pain laying down and getting back up but I assume that\'s to be expected at this point. I\'m really getting tired of sleeping on my back though and I can\'t quite lay flat yet. Not much else to report other than the chills have finally gone away and I managed to sleep past 3am finally! No matter what time I went to sleep, it was like I was up at 3am and then could not fall back asleep the rest of the night. I have appts set with my cardiologist and dr. stelzer on the 18th so we\'ll see how things are at that point!

Did anyone else come down with the chills every evening? I don\'t have a fever but at around 5pm every day I have really bad chills no matter how many layers I manage to put on. Other than that, everything seems pretty good. Have taken it easy for a few days since my long walk and judging by the amount of food being delivered by friends, I\'m going to have a hard time actually losing weight here!

Aside from my Ross, he re-implanted a coronary anomaly in the correct position. I had a CT-angiogram on Friday to map out that new biology and see how it was doing. While I was being set up with the machine, two Fellows for my cardiologist were with me. One was over from Spain and he was telling the other he had never seen a surgical report with so much attention to detail in his life. His counterpart responded by saying that Dr. Stelzer was no ordinary surgeon. That wasn\'t the only comment I had regarding his tremendous attention to detail.

Didn\'t seem like such a bad idea at the time but I cannot believe how wiped out I was last night. A 8 days ago, I could run 6-8 miles easily. Guess it\'ll take a little while to get back up that!

I finally made it home yesterday. Feeling so much improved today but up until yesterday it was a rough go. I don\'t remember much from my time in the ICU but from the snapshots that race through my mind, I think it was pretty miserable. I had a tremendous amount of backpain (suggestion: stretch, strengthen, etc. Your back will get a workout) but luckily they got me a recliner for part of my time there. When I was moved to the step-down room the next day, it was back to a bed with no recliner available for a few days. The back pain at that point was unreal and the pain meds were making me nauseous. I just couldn\'t see how that was going to end but I got one tube out of my chest on Wednesday and two more the next day along with the pacemaker wires. That actually relieved a lot of my back pain. Dr. Stelzer said the tubes are pretty soft (holy crap they\'re long) but it could possibly have contributed to some of my issues. Oh and I forgot to mention that I had a nice little bout of atrial fibrillation on Wednesday night too. That meant even more pills to take which is tough because I suddenly need an emergency root canal because the pain I get from having water touch a back molar makes the surgery look like nothing. Yes, it\'s been an interesting week. That being said, once i got home yesterday and got some sleep in my own bed, it was like I was a new man this morning. I\'m still moving pretty slowly but whereas I was still having a lot of difficulty sitting up yesterday, I\'m doing it quite easily today. Part of this is due to a lot of practice because the trio are sick with colds so I keep having to go into their room. My wife is sick and exhausted too so she\'s off to get some rest. It\'s a regular circus here so I\'m eager to see what tomorrow brings! A few helpful tips that come immediately to mind for those thinking about setting a surgery date: - hospital beds are terrible. Work on flexibility and strengthening your back. Also, be a real pain about getting a recliner if you can. - when they say bring loose clothing, they mean really loose clothing. I had gained close to 20 lbs after the surgery. - they tell you sleep is crucial but yet wake you up constantly to take your vitals and blood. Ask if they can take your blood earlier in the evening otherwise you\'ll likely be woken up at 12, 2 and 5. - the first few days, you\'ll feel like you can\'t possibly feel better and certainly not anytime soon but it goes turn for the better quite quickly. - don\'t spend time in bed if you can avoid. Sit up in a chair and go for walks. - I\'m sure more will come to mind shortly but I thought I\'d put those down for now. Off to the dentist in the morning!

Hi all, Peter made it through his Ross procedure yesterday. Dr. Stelzer said the surgery was a success and Peter is doing great! He\'s resting, not too comfortably, but otherwise doing quite well. We will continue to keep you posted. Warm regards, Dabney (Peter\'s wife)

Given that I\'ve been taking care of 3 yr old triplets solo this weekend, is it so bizarre that I think having my chest cracked open along with an overnight stay in the ICU might actually be kind of relaxing?

Well, it came down to the very end as I was looking for some guidance from my cardiologist regarding the feedback I had gotten at the Cleveland Clinic last week. All of my concerns were addressed by Dr. Fuster and Dr. Stelzer so it\'ll be a Ross Procedure for me on Monday. The only issue I have at this point is arriving at the hospital at 5:30am. Really? 5:30??? Sigh...

It\'s been a while since I\'ve provided an update. I\'ve had a couple of other opinions, none of which seem to agree on all that much. I met with Dr. Smith at Columbia who thought that surgery now was the thing to do but was not supportive of the Ross Procedure and was more of a proponent of a bioprosthetic valve. That wasn\'t all too surprising for me. This last week I went to the Cleveland Clinic which was really a fantastic place. I met with Dr. Griffin there who things I\'m \"nowhere close\" to needing surgery and can probably go another 5-10 years before any intervention is required While I can understand differences of opinion in terms of the actual procedure, the stark contract between \"now\" and \"nowhere close\" is really difficult to understand. My surgery date is just over a week away so I should have finished my diligence a long time ago but I\'m pretty much back at square one.

I decided that I\'d seek out the opinion of someone who was referred to as a \"guru\" of aortic insufficiency. Well, it certainly didn\'t make things any clearer. He raised quite a few good questions and doubted whether any surgery should be imminent. Of course, he was not exactly pro-Ross either so I\'m still stuck at square 1 trying to figure out the timing of it all. Knowing that he wouldn\'t advocate for the Ross Procedure, I asked about his thoughts on bio-prosthetics. His belief was that this was the route to go and that his \"bet\" was placed on future percutaneous valve replacements which could be used to insert a stentless valve using the calcification of the broken down tissue valve as a foundation. It\'s not the first time I heard someone advocate for this approach. I asked about the durability of the stentless valves and what happens when those wear out. Do you insert one inside the other? How long will they last? Can you remove the first one? Unfortunately, he had no answers for those questions saying that there\'s just no data yet. While he raised lots of very interesting points throughout the appointment continually pointing towards data which supported his beliefs, the fact that he\'d place his \"bet\" on an approach based on theory rather than data (which was contrary to his reasoning up until that point) didn\'t exactly sell me on the point he was looking to make. Regardless, many interesting things noted that I\'ll discuss on my weekend phone conversation with my cardiologist this Saturday. The questions continue...

Just a tad more than a month to go before my Ross procedure with Dr. Stelzer. While I\'ve set the date, I\'ve continued to learn more and have more questions come up so I\'ve continued to seek some additional opinions. I love doing research but I liked this a whole lot more when looking at potential shoulder surgeries in the past and trying to figure out what my options would be. If things didn\'t work out perfectly, so be it. Just a shoulder. Don\'t really get any do-overs (or at least no easy ones) with this one which started to wear on me a bit last weekend although I\'m back to good form now. When listening to the Ross Summit videos on the CTSNET site, I certainly took note when there was a mention that Dr. Tirone didn\'t recommend Ross for patients with AR although Drs. Stelzer and Brown said they disagreed. I posed the question to Dr. Stelzer who I thought had an interesting response. I hope he won\'t mind but I thought I\'d paste it below in case it was of interest to anyone else. PW: In the same Ross Summit interview noted above, both you and Dr. Brown made note of an upcoming \"debate\" with Dr. Tirone who believed that the Ross Procedure should not be performed on those with AI although it wasn\'t clear why he objected and the interview didn\'t address why you and Dr. Brown disagreed with him. From my additional research, I think his belief stemmed from the issues that his patients encountered who had AI and a dilated aortic annulus. I don\'t think I fit that profile but would certainly like to get your thoughts since that \"debate\" between Drs. Brown and Tirone doesn\'t seem to have made it to the video archives. PS: The AR debate is an ongoing discussion that is hard to settle. There was a nice discussion by Dr. Elkins in his 16 year experience paper that pointed out the difference in reoperation rates between AS and AR but also went on to say that since fixation of the annulus and the sinotubular junction had become routine (downsizing where appropriate) there was no longer a difference between AR and AS. That is my philosophy as well – if you keep the annulus and the sino-tubular junction from dilating the valve will stay competent. I\'ve continued my running for now knocking out 3 miles today, 4 yesterday and 7 a couple days before that. Gotta get those runs in while I still can although I\'ve slowed my pace down a bit.

Well, this is my first entry so I guess I should provide a little background on myself. I\'m 39 years old and live in Brooklyn with my wife, Dabney, and our soon-to-be 3 year old triplets - Poppy, Elsie and Bennett. As for what brings me to be writing in a journal today, I was diagnosed with Rheumatic Fever when I was 9 that left me with aortic insufficiency. So I\'ve had 30 years of echos monitoring my heart. Only about 4 years ago in an echo did they find that I also had a coronary anomaly which seemed to tip the scales towards the belief that my aortic issues are likely congenital and not from RF (plus you\'d expect to see more mitral issues than aortic from RF apparently). Over the last few years, my various measurements have apparently approached the territory where my cardiologist at Mt. Sinai, Dr. Fuster, suggested that we take some proactive steps and he recommended my to Dr. Stelzer to talk about performing the Ross Procedure. Even before meeting Dr. Stelzer, I came to realize through this site that he\'s got quite a fan club and he was every bit as nice in person as expected and very generous with his time. Through my own research and in listening to Drs. Fuster and Stelzer, I would say I certainly find myself in the Ross camp as opposed to a mechanical or prosthetic valve although I can see why there\'s considerable debate amongst the various alternatives. Interestingly, I went to see Dr. Girardi at Cornell for a second opinion and he firmly believed that not only because I\'m asymptomatic but because of those same measurements, that I\'m not a candidate for any surgery at the moment (he\'s not exactly a big fan of Ross). So that leaves me seeking to gather some more information regarding optimal timing so that I can have a more informed discussion with Fuster. I\'ve reached out to the Cleveland Clinic but haven\'t made much progress. I\'m sure I will soon so hopefully it\'ll make for some interesting journal entries for others perusing the site! Right now my Ross procedure is scheduled for 2/11 with Stelzer but looks like I\'ve got some questions to answer in the interim!