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Member Since: April 28, 2022

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Leslie Prebyl got a guestbook from Sue Lee

1 year ago (June 18, 2024)

Hi Leslie, I just read your post on Allenâ€™s journal and wanted to reach out. I could use some support and encouragement. My 18 year old is nearly 1 year out from his Ross Procedure with your Dr. Mostly he is fine and loving college but weâ€™ve struggled to get... Read more.

Leslie Prebyl

Hello, I am so glad you reached out. I would love to hear more about your son's journey. So do I understand correctly that Dr. El-Hamamsy was your son's surgeon also? My son Drake had his surgery in September of 2022 when he was 22. He has done well and really hasn't had any major issues. He developed COVID 3 days after we flew back home from New York. I am sure he got it on the plane. That was scary for me because of the possible endocarditis. He felt better after a couple days. It was in November 2022 that he started having the strange shoulder/back pain. He had several rounds of that on into December. He went to the cardiologist and he of course did echos and ran blood tests and nothing showed up. The pain matched the pain after the surgery. He didn't have another episode of the back/shoulder pain until around Fall in 2023. It is so strange. It seems to only happen in Fall and Winter. I bet that is tough for your son managing that pain and going to class. Drake's cardiologist would also like for him to stay on his BP medicine because it is cardio protective. We are trying to arrange a zoom call to talk with Dr. El-Hamamsy about Drake's numbers from his echos. His cardiologist said he would support Drake if he wanted to stop the BP medicine, but to keep in mind that his ascending aorta is measuring 38mm and they replace it if it reaches 50mm. He did say that it would be a slow progression to get to that number. Drake will continue to get his echos every 6 months for the next 5 years, so he can play around with his medicine and see if things change. I would love to keep in touch with you. I am glad your son is doing great in college. Is he far from home? As mom's we can't help but worry. I would say take your cues from him. If he is doing great and feeling fine, allow yourself to feel that way also. My son is aware that he will more than likely need a re-operation in the future since he is so young, but for now he is just happy that he doesn't have to take blood thinners and manage his diet which would have been the case with a mechanical valve. Sorry this is so long. Please feel free to email me if you would like and we can even talk by phone. I would love to hear how you decided on the Ross Procedure for your son. My email is lprebyl@hotmail.com. Take care--Leslie Prebyl

Leslie Prebyl got a guestbook from Timothy Andre

3 years ago (June 17, 2022)

Hi Leslie, I had my Ross Procedure done in NYC at Mt. Sinai with Dr. Stelzer. My Mother and Step Father stayed at the Courtyard Marriot. It can all seem overwhelming at first, but you will figure out your way around. I'm guessing you will fly in a few days... Read more.

❤️ Deena Z reacted to this

Deena Z

Hi Leslie, My husband also stayed at the Courtyard, as Timothy mentioned . You get a slight discount (10%?), if you say you are a Mt Sinai patient. It is about a 18-20 min. walk to the hospital; safe. I would recommend a corner room in the hotel, because it... Read more.

Leslie Prebyl

Thank Deena for the information. I did book the room using the discount. That was a frustrating experience in and of itself, but I got it done. I might have to ask about a corner room. I have been told that the area is safe to walk around and I... Read more.

Deena Z

There are lots of food places - from healthy to grabbing a slice of pizza. My brother brought me protein shakes, because I didn't have a great appetite the first two days and the shakes were easy to force down. -- plus he will need to get his hemoglobin up... Read more.

Deena Z

one other thing! Cathy Bryne on this site is having her surgery at Mt. Sinai in late July. She found an AIRBNB only two blocks from the hospital that also has a kitchenette and is less expensive that most of the hotels. You might want to ask Cathy how that... Read more.

Leslie Prebyl

Deena thanks. I did send Cathy a note about the airbnb. I am curious where she is staying. When I looked a month ago I found one real close,but it was a double bed and shared bath. Not ideal for us. I have never stayed in an airbnb and really... Read more.

Deena Z

Leslie, definitely forgo the shared bath, hear ya on that. For diet, I would bring a written list of food items that your son will not eat at all and those that he prefers. The ICU and step-down unit dietician and nurse will accommodate. They did so for me. There... Read more.