Ben's Guestbook

Hi Ben, How's it going? I hope you had a great holiday season and are back to doing all of the things you were doing prior to surgery. I am getting closer to decision time myself and am considering the trip to NYC and Mount Sinai. If you have some time at some point, I would love to hear about your experience there. My email is michaeldtirrell@yahoo.com. Thanks and best wishes. Mike

Hey Ben! You could not be in better hands! You have the best hospital and surgical team anyone could ask for.......as my son would attest to. Sending you many prayers.

Hi Ben, Hope all is well! I saw this note from Jason and wanted to add a comment as well. I also have congenital AVR. I had open heart to replace my failing valve at 24 at Weill- Cornell. Now at 31 my 27mm bovine replacement has calcified and is also starting to fail. I need surgery within the next few weeks. I haven’t yet made a decision on procedure but I am choosing between a bio- prosthetic valve (Which i have now) followed by a TAVR (when that fails) or the Ross procedure. I have also had a consultation with DR. Ismail El-Hamamsy and it seems that I would be a strong candidate due to my age and activity level. I do need to make a decision shortly here and though my research it sounds like DR. Seltzer and DR. Ismail El-Hamamsy team are world class. My hesitation is with the double valve replacement via the Ross as opposed to the “standard AVR replacement”. The fairly limited statistics do show the Ross leading to very positive outcomes but the double replacement does draw some hesitation for me.

Hi Ben Good luck with your surgery ! I wanted to encourage you by sharing my recent story ! I also had congenital aortic valve disease, for my whole life everyone though t it was a bi-cuspid valve, turns out when they removed it it was a uni-cuspid valve (there is no way to tell the difference in certain cases once you get older apparently due to the nature of trans-thoracic echo)! I am 35 and felt so blessed to meet Dr Stelzer 3 years ago and help him guide me until my surgery which was 8/19/20. Initially my cardiologist thought I would need surgery 3 years ago, but due to Dr Stelzer's expertise we were able to continue with watchful waiting until last month (my echo was slowly worsening even though I was mostly asymptomatic). I chose the Ross because I enjoy being active and didn't see my life on a blood thinner. Even more so though, as a physician myself after looking at the research, the Ross really does have incredibly great outcomes done in the right hands! You are in the greatest of hands with Dr Stelzer and his team (he now also works alongside Dr Ismail El-Hamamsy who is also an incredible doctor/ person and one of the top Ross/aortic surgeons in world as well, if having the best and most experienced ross surgeon in the world wasn't enough!). There is literally no team better! Like you mentioned, he really does care and understands the human aspect of going through all this. The whole experience at Mount Sinai Heart was excellent and I am now 2 months into recovery !

Hi Ben! I was diagnosed with BAV at 33, met my surgeon at 41 (he said I wasn't ready yet) and had my surgery at 42. I didn't feel like I had any symptons, and Doc said, "You won't realize how sick you are until you're not sick anymore" and he was right - I truly noticed a difference when I woke up from surgery. I took my cPap with me to the hospital. (You'll need help putting it on the first couple of times though.) I had difficulty breathing deep enough on my own the afternoon after surgery, and I was so thankful for the cPap because it eased my mind about not breathing while I was sleeping. It's all blurry though. So my last echo before surgery was in mid January, and I met my surgeon on Valentine's Day <3. My surgery was March 5, so once I got in to the pipeline at the hospital everything moved pretty quick, even though it did feel like AGES. I think it was about a week prior to surgery that I was ready to go to the hospital and make them do the operation then. Anyway, it's been 6 1/2 years, I have a ticker and I take blood thinners, and I'm super-happy with the way everything turned out :) Let me know if you have any questions! Meredith Clearwater, Florida

Hi Ben, we have quite a bit in common it seems. I am 42, 3 kids, stenosis has just recently crossed into the severe range, no symptoms yet but closely watching it with echos every 3-6 months. Have you considered what valve you will go with when it comes time to replace it? That is what I am currently researching. Anyway, I wish you the best on your journey and will follow you here. -Mike