Timothy, thanks for sharing your story! I am helping my 26 yr old son do research. He needs aortic valve replacement (I'm still holding out hope for repair ...Read more
Timothy, thanks for sharing your story! I am helping my 26 yr old son do research. He needs aortic valve replacement (I'm still holding out hope for repair this time around, but...) due to subaortic membrane removed - open heart 21 yrs ago. We knew this day would come but when it does, its still a surprise! First surgeon discounted Ross, supported mechanical. But coumadine? My son travels like you do, plays ice hockey, etc. I found Dr. Stelzer and Dr. El-Hamamsy at Mount Sinai through Adam's site. Does just calling and asking for consult result in an appt? Any advice as to how to get in to see them is helpful!
Dear Tim , Congratulations on your two year Anniversary !!! Huge Congratulations to you and your wife !!! Wonderful news and I am so happy for both of you !!!... Read more
Dear Tim , Congratulations on your two year Anniversary !!! Huge Congratulations to you and your wife !!! Wonderful news and I am so happy for both of you !!! . Delighted actually …… !!! Xxxxxxxxxx
Thank you for sharing your story here. I see that you are past your first anniversary of the most recent surgery. Congratulations! How do you feel?
Timothy Andre Thank you Steven. I feel great and even better than I did before surgery. Good luck on your heart jo... Read more
Timothy Andre Thank you Steven. I feel great and even better than I did before surgery. Good luck on your heart journey and feel free to ask questions as we are eager to help each other with sharing our own experiences.
Steven Applebauigh I am grateful for this site and extraordinary resource for information and support, and for people li ... Read more
Steven Applebauigh I am grateful for this site and extraordinary resource for information and support, and for people like you, Timothy, who are so open and genuinely encouraging. Thanks! Keep on going and growing, my friend.
Well done, Timothy! You are truly inspirational. Thank you for sharing your wonderful journey with us. Pam Cherry
Timothy Andre Thank you Pam, I'm happy to share my story. Good luck in your heart journey. Lean on us for support.... Read more
Timothy Andre Thank you Pam, I'm happy to share my story. Good luck in your heart journey. Lean on us for support. This community of heart warriors is priceless.
Congratulations on completing your pilgrimage, what an achievement! Such an inspiration to so many, especially those facing surgery. I had the Ross procedure ...Read more
Congratulations on completing your pilgrimage, what an achievement! Such an inspiration to so many, especially those facing surgery. I had the Ross procedure nearly four years ago and life is good. I feel very blessed that heart surgery these days is so advanced and for many of us, we are given a new start. I wish you all the best for whatever plans you have next after your epic walk.
Timothy Andre Thank you Claire, congratulations on approaching 4 years. What a blessing a successful Ross Procedur... Read more
Timothy Andre Thank you Claire, congratulations on approaching 4 years. What a blessing a successful Ross Procedure is. Keep on tickin'
Timothy Andre Thank you Ruth Joy for checking in with me. I made it to Santiago and beyond, to the ocean. What an ... Read more
Timothy Andre Thank you Ruth Joy for checking in with me. I made it to Santiago and beyond, to the ocean. What an amazing experience. I feel so blessed that my heart and health allowed me to complete this amazing journey. I will post a longer update shortly.
David Stringer posted a note for Timothy that says:
Hi Timothy. Your accounts are so welcome to me. I'm 71, always been super fit -- rep runner and rower etc etc -- but recently they found I have severe aortic ...Read more
Hi Timothy. Your accounts are so welcome to me. I'm 71, always been super fit -- rep runner and rower etc etc -- but recently they found I have severe aortic stenosis. No symptoms at all, still training hard in the gym, but hey, as you know, I just have to have that operation!! I find your case so comforting. I know I can look forward to regaining my fitness. Would love to walk the Carmino too, since I saw the movie on it some years ago. Many thanks man, for the inspiration. Cheers, Dave.
Timothy Andre Thanks for the message David. It’s comforting knowing that I can be an inspiration to other heart w ... Read more
Timothy Andre Thanks for the message David. It’s comforting knowing that I can be an inspiration to other heart warriors. I’m not posting on Facebook or IG because I’m not the social media type, but I knew my Camino journey would be received well here with our community. I’m hoping to show others that anything is possible with a positive mindset. Good luck and keep us updated on your heart journey. You have found an amazing community here.
Jody Morstein posted a note for Timothy that says:
So happy for your good health! My son underwent the same procedure last summer in Austria as he couldn’t fly home. It’s inspiring to see your progress and ...Read more
So happy for your good health! My son underwent the same procedure last summer in Austria as he couldn’t fly home. It’s inspiring to see your progress and determination! Stay well!
Timothy Andre Thank you Jody! I appreciate your kind words. May your sons recovery continue forward in a positive d ... Read more
Timothy Andre Thank you Jody! I appreciate your kind words. May your sons recovery continue forward in a positive direction. God bless you both 🙏🏽
Hey tim, you have been silent. Hope your trip went well.
Timothy Andre Nice of you to message me Richard. I am doing great and still walking to Santiago de Compostella. I ... Read more
Timothy Andre Nice of you to message me Richard. I am doing great and still walking to Santiago de Compostella. I will post a longer update when I arrive at my hostel this afternoon. Thanks for thinking of me
Richard Munson Happy to hear you are well. If you see hadrian in your trek, say hi.
Timothy Andre Hadrian says hello back to you Richard! 😂 He is from the Santiponce area of Spain just northwest o ... Read more
Timothy Andre Hadrian says hello back to you Richard! 😂 He is from the Santiponce area of Spain just northwest of Seville.
Hello, Thanks for answering my question about the Aleve. I tried to email you, but it came back undeliverable twice. Did you change your email address? ...Read more
Hello, Thanks for answering my question about the Aleve. I tried to email you, but it came back undeliverable twice. Did you change your email address? You would think that the protocol would be about the same after the Ross at Mount Sinai in terms of what is recommended for inflammation. Originally the nurse practitioner told us two Aleve 2x a day and I questioned him about that because I know you aren't suppose to exceed more than two in a day. Drake has always just done the one at night. I think he will probably stop all together. I hope things are going well for you. Are you still on blood pressure medicine? Drake had a lot of pain while in the hospital, but we were told that was normal for the younger patients. Once they got that under control, he was much better. Drake has done really well with his recovery. Two days after he was discharged from the hospital, we took a taxi to the interesting part of Central Park and we walked two miles. We made a lot of stops along the way, but Drake did it. The doctor was so impressed. They asked Drake for permission to video his surgery so that the doctor could use it as part of a Master Class. Apparently there were about 30 cardiac surgeons watching the surgery and then the next day Dr. El-Hamamsy answered any questions they had. Dr. El-Hamamsy is trying hard to get other hospitals and surgeons on board with the procedure across the country so patients won't have to travel so far from home. It was definitely an experience going to NY. It was interesting to see, but I have no desire to go back. It was a long ten days for sure. Thanks again for answering my question. It is nice to be able to ask you things knowing you have been there. Take care-- Leslie
Timothy Andre Hi Leslie, I'm sorry that email was discontinued and is no longer working. When I saw your post I wa... Read more
Timothy Andre Hi Leslie, I'm sorry that email was discontinued and is no longer working. When I saw your post I was concerned that maybe you reached out through email. I have another email you can use if you ever want to communicate that way. cheftimandre@yahoo.com
I was told to take Advil as needed after 6 weeks. It's probably safe for him to do the same, but I would get the cardiologists opinion as well. I am still taking BP meds but I am weening off of them as we speak. I will be done in about 4-6 more weeks. If my BP stays stable and under or near 120/80 I can stay off them. I also stopped taking baby aspirin at 6 months. My surgeon recommended that for aspirin and my cardiologist thought I should take it for life. There is never a black and white protocol for meds it seems. We have to advocate for ourselves and push for what we want. My goal going into surgery was to not need medication for life and I'm pushing for that. Of course it needs to be an educated decision with careful consideration. So, I am taking both the advice from my surgeon and cardiologist.
I'm sorry Drake dealt with higher levels of pain after surgery. I've also heard that younger patients have more pain. I think it's because they have more nerve endings?
I'm glad you got to enjoy NYC a little and that Drake was walking a lot shortly after discharge. NYC is not for everyone and can be overwhelming for many as it was for me too. "We are not in Kansas anymore"
How cool is it that his surgery was recorded. Dr. Stelzer and Dr. El Hamamsy are such amazing surgeons and are doing a fabulous job at spreading the education and knowledge of the Ross Procedure across the country and world. As you know it's a very technical procedure and not every surgeon can or should be performing it. They are looking for "rockstar" surgeons that have what it takes to be great and passing on the knowledge so these candidates can begin developing new Ross programs.
I am happy to answer any questions that may come up. Again, I am so sorry you were unable to contact me and I feel bad I wasn't there to help answer any questions or concerns. You can use my older email address or simply contact me here on HVS. God bless you both
Thank you so much dear timothy. Your words have given me a lot strength. I am trying to stay positive. His report says BAV with mild aortic stenosis. I... Read more
Thank you so much dear timothy. Your words have given me a lot strength. I am trying to stay positive. His report says BAV with mild aortic stenosis. I dont know how long it takes to change to modrate or further. I hope he will live long enough before he needs surgery. Thank you so much
Prince Kumar As you have gone through everything, could you please look and tell me , will he be okey..
Greg Lewis Prince, is your doctor available to you? Because these are questions for a doctor, only.
Timothy Andre Thank you Klara and Prince. Klara you are too kind Prince, I wish I could give you a clear answer. T... Read more
Timothy Andre Thank you Klara and Prince. Klara you are too kind Prince, I wish I could give you a clear answer. There are so many factors that determine if and when your son may need surgery. The fact that he is diagnosed at an early age will help because he will be monitored to see his progress. Another great thing is that most BAV patients that need future surgery have elective surgery. If he is monitored throughout his life he will know when the time comes. It would be easy to say not to worry, but I am not a parent and can not relate to that feeling. I do know it was hard on my mother and she never stopped thinking about it until I had my surgery. And probably still is worried for me. That's normal for a parent. The technology used in heart surgery these days is amazing and continues to move forward quickly. The options for valve repair or replacement are only going to get better. Hang in there and trust that everything will be ok. Worry and anxiety today will not change a future outcome. God bless you Prince
Timothy thank you for the recommendation for your surgeon at Mount Sinai. I read your story and it makes me feel better about my situation. You seem to... Read more
Timothy thank you for the recommendation for your surgeon at Mount Sinai. I read your story and it makes me feel better about my situation. You seem to be recovering nicely after a bit of a bumpy start in the hospital. What is the most important advice that you can give someone like me to get mentally and physically prepared? Since I was not aware of any heart issues the last four years have been very stressful for me. I am asymptomatic but hate that my numbers keep getting worse and I am losing strength from modifying my workouts. The waiting game is so frustrating and having to go out of Idaho for surgery makes me more anxious. I would like to be known in the clinic that will be cracking open my chest and stopping my heart, a little dramatic with a touch of humor but it's actually true. My doctor here does not seem to want me to look for a surgeon until I have symptoms. Your Doctor seems great but traveling to New York and being so far away from family would be very hard.
Timothy Andre Hi Pam, your welcome. This community of heart warriors is so supportive and has proven to be so hel... Read more
Timothy Andre Hi Pam, your welcome. This community of heart warriors is so supportive and has proven to be so helpful. Our shared experience of heart surgery provides a strong connection with people we have never met. It's quite amazing if you ask me.
Advice to getting mentally and physically prepared....for one, you are already active and work out regularly which will prove to be helpful when recovering. As for the mental part; this is probably the most challenging aspect to preparing for such a monumental moment in a heart warriors journey. For me, I spent many hours watching videos and reading/researching to make sure I fully knew all my options. The more knowledge you have of the procedure you ultimately chose for yourself, the better. I also spent a lot of time researching surgeons. It is by the grace of God that I actually got my first choice in Dr. Stelzer. He was my second opinion and after meeting with him I knew that he was the man to work on my heart. All these things I did in preparation really helped ease my mind. Now, many people here including myself talk about how the waiting is the hardest part. Once my procedure and surgeon choices were made and my surgery date was scheduled I really focused on calming my mind. The success rate for heart surgery these days is great, so I wasn't concerned by any of that. I was more concerned with how recovery would go for me. It has had it's ups and downs but my experience has been pretty good and ultimately I feel blessed.
The traveling part can seem like a tall order. I am only 2+ hours drive from NYC and managed to do that with the help of a best friend and my Mother and Step Father. We stayed in a hotel near the hospital and that worked well for us. Also, we did some sight seeing and ate some good food to help keep my mind off of the surgery. There are a lot of heart warriors here that have traveled much farther and by plane to get the best care possible. If you post with questions about traveling for surgery I have no doubt many will chime in with their experience.
It's nice that your doctor has an opinion, we all do. My one piece of advice that you should absolutely listen to above all other opinions is, to advocate for yourself. You are the one with a heart condition that will need to be addressed in the future. Make sure you are in the drivers seat when making decisions. You can welcome all the opinions and advice for days, but ultimately you are the one who has to live with the choices you make. I did this for myself and I feel extremely proud and happy that I approached my heart surgery journey this way.
Humor is important. If you can find room to be funny and optimistic about this gift from God, you will do great. We are all here for you if and when you need us. It sure helps connecting with people that have experienced what you are going through. May God bless you and lead you to the right decisions for your situation.
PS. Try contacting Dr. Stelzers office and see if they can do a zoom consultation. It's helpful to send over a copy of your echo report and CD of the images. I sent him my data from all my pre tests and he was grateful to have that info before we met.
Mount Sinai Medical Center 1190 Fifth Avenue, Box 1028 New York, NY 10029-6574 T 212-659-6871 F 212-659-6818 paul.stelzer@mountsinai.org
Pamela Gregory Timothy said it beautifully! This is your one life and you want to be completely comfortable with th... Read more
Pamela Gregory Timothy said it beautifully! This is your one life and you want to be completely comfortable with the choices you make. Don't be afraid to travel to get what you need. In the grand scheme of life the time away will be very short and the hospital will have excellent care for you in recovery.
Hey Timothy, I hope you are doing well. I wanted to ask since I see its been almost 6 months since your surgery, how are you feeling? any pains? any more soreness? ...Read more
Hey Timothy, I hope you are doing well. I wanted to ask since I see its been almost 6 months since your surgery, how are you feeling? any pains? any more soreness? just curious to know.. I know everyone is different in recovering. I had my Ross done at the Cleveland Clinic and currently in the area for another few weeks before I leave.
Timothy Andre Hey Kristian, Today, I feel great. Most days I feel good and occasionally I am fatigued and take a re ... Read more
Timothy Andre Hey Kristian, Today, I feel great. Most days I feel good and occasionally I am fatigued and take a rest day. My sternum is completely healed but I do still get some soreness in my chest area. But that’s not everyday. I finished cardiac rehab a three weeks ago and that helped a lot. I now workout on my own and continue to stay active and walk a lot. Overall I feel like I’m pretty much 100% but still take caution and listen to my body. The recovery is truly a marathon. It’s easy to want quicker results but it takes some time to fully heal. I’ve heard it takes up to a year to be fully healed. We have had a very major surgery and you can’t rush anything about it. Keep asking questions, I’m happy to help by sharing my experience. God bless you and good luck with your recovery journey 🙏🏽❤️🩹
Kristian M. Timothy, thank you for sharing that with me...yes you are right about not rushing anything...the othe ... Read more
Kristian M. Timothy, thank you for sharing that with me...yes you are right about not rushing anything...the other day I felt good and walked more than usual, over did it for sure, went up a small hill and some stairs...got back and I never felt so exhausted in my life...I feel like I'm still recovering from that walk on top of my normal recovery.... did you experience some mild fevers after surgery? I get some mild fevers every now and then and spoke to my doctor about it since I am also under antibiotics, not sure if its the meds or over exertion but it worries me sometimes. my doctor made some changes to the medications and also got a blood culture just to play it safe but good thing it was negative. Maybe the body trying to heal causes these fevers.
Timothy Andre You are welcome, I am happy to share. I over did it many times. You feel like you can do more and th ... Read more
Timothy Andre You are welcome, I am happy to share. I over did it many times. You feel like you can do more and then find out that it was probably too much. It’s the only way to find your limitations. It’s good to push yourself, just listen to your body. I did get fevers during week two/three after surgery. But mine was due to Covid. I came home from the hospital with it. What an experience that was. I’m glad the doctors are monitoring that for you and taking caution. I hope you feel better and get rid of the fever.
Kristian M. Thank you, Timothy, wow COVID during recovery? I can just imagine!! Yes, going to definitely listen t ... Read more
Kristian M. Thank you, Timothy, wow COVID during recovery? I can just imagine!! Yes, going to definitely listen to my body. Well, I am glad that another Ross patient is almost at 100% I hope you continue that way. be safe and thanks again.
Reading your story we have a lot in common I had my first surgery when I was 11 and second one just a couple of months ago I'm curious to why I only made it ...Read more
Reading your story we have a lot in common I had my first surgery when I was 11 and second one just a couple of months ago I'm curious to why I only made it to 20 and needing surgery and you made it to your 40s how was it growing up with this when you did you first noticed your stenosis getting worst ? How was your lifestyle ?
Timothy Andre Hey JJ, Thanks for the message. I wish I had a concrete answer for you on why you needed surgery at ... Read more
Timothy Andre Hey JJ, Thanks for the message. I wish I had a concrete answer for you on why you needed surgery at a younger age. I suppose I could say the same. I have seen others with a bicuspid valve not needing replacement or repair and they were in their 60's and 70's. My uneducated guess is that everyone is different and there must be a long list of factors that determine that. Growing up was fine. I placed the thought of having a deformed heart valve on the back burner and really didn't think about it for 25+ years. And, I didn't get check ups with a cardiologist for about 20+ years. My lifestyle was normal and maybe a bit reckless at times (partying ) but none the less I really didn't think about it.
I had symptoms for about 2 years prior to my surgery but I didn't attribute those to my heart. Maybe I didn't want to believe the time for surgery had arrived. Rewind to February 6th this year, I was at church and most likely dehydrated and had an empty stomach because coffee was normally breakfast for me until after service. Lightheaded and dizzy I almost passed out, so I had the medical staff check my BP which was extremely high, somewhere around 170/120. Hindsight is always 20/20, only now do I understand why I felt that way. My aortic valve at the time only had 25% of and opening due to stenosis which means my heart was working overtime to pump blood throughout my body. Add dehydration to that and it made things much more difficult for my heart. Alarmed by this I went to the ER that evening and after many tests and procedures I was blessed to be on Dr. Stelzers operating table 8 weeks later.
I am so blessed to have had the experience of a successful surgery by one of the best in the world. I wouldn't change a thing. And, to top it off, a major support system that this community has provided for me is a miracle. Adam must be so proud of what he has created because it has helped so many people all across the globe. We are not alone and this group of heart warriors proves that every day. Our friends and family can support us but they really don't know what we all have been through or will go through. Which is why this group is so valuable.
I wish you the best and pray you have peace of mind when it comes to your special heart. You are unique and a walking miracle with a brand new lease on this next chapter in your heart journey. Don't worry about when and what kind of future surgery you may or may not need. I can't even imagine what sort of technology will be available in 10, 20 or even 30 years from now. It's best to focus on your recovery now and enjoy each day as they are all a gift. You are blessed
Klara Čičić Tim, what a lovely and encouraging post, thank you
Timothy Andre Thank you Klara, I'm glad you enjoyed it