Lyle's Journal

Hi All, does anyone have recommendations for a cardiologist and/or Clinic (for INR testing) in southern Spain (Malaga)? As some of you may remember, our 19yo son had his OHS (AVR) at Cleveland Clinic last December. He is doing fine. And planning to study abroad in Spain early next year. While we don’t anticipate any issues we would like to have someone in country who could see him if needed. Thanks in advance!

Hi all. 8 days in step down and our son is back in CICU. While waiting for INR to come up they noticed a couple of skipped heart beats so wanted closer supervision. But it’s the elevated white blood cell count that has me concerned. Has anyone experienced this after surgery. Just trying to gauge if this is common.

Greetings from Cleveland! Day 5 in Step Down. Overall the surgery went well for our son. Bicuspid turned out to be unicuspid. He did not get the repair he wanted but did get the replacement he needed. He would have been discharged several days ago if not for delays in getting to therapeutic level of Coumadin. Wondering if others have experienced this?

Greetings from Cleveland. Had a nice walk in Forest Hills Park. Off to see Roselli and team before our son’s AVR tomorrow. All of your well wishes have been passed along to our son. Thank you!

I'm posting here as a parent (not a patient) of a 19 y/o with a bicuspid aortic valve. My wife and I have encouraged him to join this amazing community. For now, I remain content that he appreciates it as we share the tips, tricks, and amazing success stories we have read from so many of you. Can't tell you how helpful this space and been for us as parents sharing this journey with him.

Unfortunately, he has reached the point at which he can no longer put off surgery. He is now scheduled on 12/21/23 (heck or a way to spend Christmas) at Cleveland Clinic.

We will be traveling from Arlington, Va. And I have a question and request for recommendations to those who have been to Cleveland Clinic regarding lodging. Where should we stay? We have stayed at the Intercontinental and appreciate its convenience, but prefer benefits of kitchen and washer/dryer. Reviews of Residence Inn are not that great but there is little else within walking distance. Any thoughts on Residence Inn? Also, there is a small apartment building next to the Clinic's parking lot#1. Pictures and reviews seem great (http://www.airbnb.com/rooms/44630288?adults=2). Google reviews, however, are terrible. But it is super convenient. Please let us know if you have any info on this or apartment building or any other good recommendations.

Thanks SO MUCH.

My son has bicuspid aortic valve. Surgery tentatively set for Dec 2023. Initially told the surgery would be repair, and if not repairable then Ross before going to mechanical if Ross failed. But now we have new scan results suggesting pulmonary has slight leak so Ross appears to be an unlikely option. Repair is clearly our preferred outcome. Hoping this community can provide recommendations for surgeons with high level skills in aortic valve repair based on recent experience. PLEASE, please share your recommendations.

Hi all. I'm new to this community. As parents of a teen born with BAV my wife and I find ourselves facing what seems like a daunting challenge to make the determination of when to move forward with surgery, what type (repair/replace) of surgery, how to select the best surgeon for the type of procedure, and many more items I'm sure I don't yet know to list. Our son is asymptomatic though tests reveal regurgitation that we have been monitoring for several years. And with all of this we find ourselves a bit overwhelmed. Our son's cardiologist seems to think we should move forward with surgery soon (this year or next) to avoid stretching and/or other complications. Does anyone here know how we would go about finding a good surgeon for BAV repair in young adults? How do we find out how much experience a surgeon has with BAV repair and what the success rate is?