Hi Sara, thinking and feeling for you. We have followed your journey and despite a great surgeon and hospital, being pretty young and in great shape, ...Read more
Hi Sara, thinking and feeling for you. We have followed your journey and despite a great surgeon and hospital, being pretty young and in great shape, you have had a series of challenges. You must be a bit emotionally worn out, but alas at least now you have a diagnosis. Why on earth it took this long to diagnosis I don't know, but you now have something to "control" more through the best docs and the best procedures/meds. Hang-in-there. It should all get better from here on. A prayer your way is being made right after I post this message!
Valerie Allen Though a different age and experience, I can relate to you in that all the sudden it is becoming real ... Read more
Valerie Allen Though a different age and experience, I can relate to you in that all the sudden it is becoming real. I too am feeling anxious. My best wishes to you, I will follow your journey. 🙏
Sara Latina Thanks Deena. I am not sure what exactly I feel. Trying to stay strong and positive but there’s s ... Read more
Sara Latina Thanks Deena. I am not sure what exactly I feel. Trying to stay strong and positive but there’s so many unknowns and questions that will probably never be answered. Some days are harder than others
Sara Latina Valerie - I just read your story and am sorry that TAVR isn’t an option. What ever procedure you e ... Read more
Sara Latina Valerie - I just read your story and am sorry that TAVR isn’t an option. What ever procedure you end up with just do as much homework as you can and talk to everyone in this site. I can’t believe how less anxious I was going into surgery thanks to this group.
Hi Sara , I am really glad that you got a diagnosis and an explanation for your symptoms . You must be feeling relieved . I hope the cardiogist ...Read more
Hi Sara , I am really glad that you got a diagnosis and an explanation for your symptoms . You must be feeling relieved . I hope the cardiogist will be able to help you .
Hi Sara! Congrats on your first year! Now, i dont know if this helps but...i have had a lot of pain also, after having to rebuild from major atrophy. My abdominals ...Read more
Hi Sara! Congrats on your first year! Now, i dont know if this helps but...i have had a lot of pain also, after having to rebuild from major atrophy. My abdominals and Chest have been a constant pain source. But i had lost so much weight in the hospital and the first couple months. I lost 40 lbs, and that left me pretty skinny. I did not want to get any of the weight back, so i stayed skinny until i started to put some fat back on. My sternal wires were sticking out pretty good, and were VERY sensitive to any touching in that area. Since i have put some weight back on, and covered those up, the pain there, is drastically less. If i work my muscles too much, i still get some pain, but not very much anymore. My abs still hurt, IF i overdo it. Then they get better, but they take awhile, everytime i have hurt them. So the addition of some fat has really helped. Maybe that is something you can consider. Cheers!! 😁
Greg Lewis In addition, i was just thinking, that i also have had some help with the chest pains when my massage ... Read more
Greg Lewis In addition, i was just thinking, that i also have had some help with the chest pains when my massage therapist worked on my chest muscles. Lightly. Very lightly. 😬
Hi Sarah , Try putting a pillow / pillows alongside you in bed so that you can ‘t roll over in your sleep . It might help .
Sara Latina Thanks Ruth. Unfortunately I have tried that. I went back to sleeping in recliner for a while too. ... Read more
Sara Latina Thanks Ruth. Unfortunately I have tried that. I went back to sleeping in recliner for a while too. I gave up and went back to bed with tons of pillows but I get uncomfortable and have to switch positions so much through out the night no matter how many pillows I use.
Greg Lewis Just a thought..its not pain being referred from your back is it? I can get that, if my back flares u ... Read more
Greg Lewis Just a thought..its not pain being referred from your back is it? I can get that, if my back flares up.
Hi Sara, I will be having the "Ross" performed by Dr. Stelzer on April 6th. I met him 2 days ago and I wanted to hug him also. He is a gift from God and... Read more
Hi Sara, I will be having the "Ross" performed by Dr. Stelzer on April 6th. I met him 2 days ago and I wanted to hug him also. He is a gift from God and with the help of this website and Adam's work I feel beyond blessed to have him repairing my heart. Thank you so much for journaling your pre and post experience. I found myself tearing up reading all the supportive comments from everyone and relating with your pre-op experience. I was able to write a list of things I might need or want in the hospital and at home after surgery. Thank you and everyone for the insight. I hope you are well, and as Adam would say, "Keep on Tickin"
Sara Latina Timothy you will be in the best hands possible. Just think in less than a week you will be in the ro ... Read more
Sara Latina Timothy you will be in the best hands possible. Just think in less than a week you will be in the road to recovery. It won’t be easy and don’t compare yourself to others as much as you might want to. I had to learn to let that go. We all get through it with the support of family and this community but we all do it differently. Getting “lapped” in the hallway by people twice my age was discouraging at first till I focused on just how I had come myself. You got this!!! And if you need anything at all don’t hesitate to reach out. (Tell Dr Stelzer that Sara “happy toes” sends hugs
Timothy Andre Thank you Sara! I appreciate the kind words of wisdom. I found myself thinking I have an idea of ho... Read more
Timothy Andre Thank you Sara! I appreciate the kind words of wisdom. I found myself thinking I have an idea of how things will go for me based on other peoples experience. I realize that isn't logical thinking. Everyone has a different experience and I will be no different. However, I will be positive and take things one day at a time. And of course, I will definitely say hello to Dr. Stelzer from Sara "happy toes"
Hi Sara, I just started looking into the Ross Procedure, as I will be needing a new aortic valve sometime in the foreseeable future. I have aortic stenosis ...Read more
Hi Sara, I just started looking into the Ross Procedure, as I will be needing a new aortic valve sometime in the foreseeable future. I have aortic stenosis and am 32 years old.
Could you tell me the timeline of being able to have the procedure done? Were you on a big long waiting list? What was your timeline between the echos and when u were actually able to have the surgery? Also, how old were you when you had it done?
Thanks so much,
Andy
Sara Latina Hi Andy - I am 46 and just had the Ross procedure done 10 weeks ago. While I have known for years th ... Read more
Sara Latina Hi Andy - I am 46 and just had the Ross procedure done 10 weeks ago. While I have known for years that this day would come, I was still surprised how fast it went once I was referred to see surgeon. Because of my past experience with blood thinners and my high level of activity, I really wanted to stay away from a mechanical valve. I also didn't want to end up with multiple surgeries in my lifetime. That's what drove me to seek out the Ross procedure. I reached out to Dr. Stelzer's office and had surgery eight weeks later. I could have had surgery within four weeks but I needed more time to prepare. So no, there was no long waiting list. I had already had echo's with my cardiologist which were sent over to Dr. Stelzer to review at our first appointment.
Andrew Dial Thank you for the reply. Sounds like that part of it went smooth for you. I’ve been seeing my cardi ... Read more
Andrew Dial Thank you for the reply. Sounds like that part of it went smooth for you. I’ve been seeing my cardiologist since birth, I was born w/ bicuspid valve. Im curious to see what they will say, being that I am almost 33, but I live a super active lifestyle, and I do not wanna be on blood thinners forever-my biggest concern.
Thanks for taking the time to reply :)
I hope you are healing well and that your new heart lasts for many many years :)
Hi Sara, hope your recovery is going well. I'm very interested in the Ross Procedure as my valve replacement with on-x valve is coming up. I still can make ...Read more
Hi Sara, hope your recovery is going well. I'm very interested in the Ross Procedure as my valve replacement with on-x valve is coming up. I still can make the decision to not go forward but was wondering what was the timetable to meeting your surgeon Dr. Stelzer to him ultimately performing the surgery? Thanks for any insight you have.
Tim
Sara Latina Hi Tim! I got a call back from Maria, Dr Stelzer’s assistant, within an hour of leaving a message a ... Read more
Sara Latina Hi Tim! I got a call back from Maria, Dr Stelzer’s assistant, within an hour of leaving a message and she got me in to see him within a few weeks. Also he would have booked me for surgery within two weeks but I chose to push it off a few more weeks beyond that. He will spend as much time with you as you need answering questions. He responds to all my emails very quickly too. I can’t say enough good things about him.
As far as the procedure goes I chose it because I am young and active. I spent ten years previously on Coumadin and never acclimated to it well either. I didn’t want to go back on it again. A cows valve wasn’t a great option either as would mean multiple more replacements in my future. Would be glad to talk through my experience anytime.
Sara Latina Hi Tim! I got a call back from Maria, Dr Stelzer’s assistant, within an hour of leaving a message a ... Read more
Sara Latina Hi Tim! I got a call back from Maria, Dr Stelzer’s assistant, within an hour of leaving a message and she got me in to see him within a few weeks. Also he would have booked me for surgery within two weeks but I chose to push it off a few more weeks beyond that. He will spend as much time with you as you need answering questions. He responds to all my emails very quickly too. I can’t say enough good things about him.
As far as the procedure goes I chose it because I am young and active. I spent ten years previously on Coumadin and never acclimated to it well either. I didn’t want to go back on it again. A cows valve wasn’t a great option either as would mean multiple more replacements in my future. Would be glad to talk through my experience anytime.
Timothy Stoner I was looking at the on-x valve as it is a one and done procedure. Taking warfarin concerns me becaus ... Read more
Timothy Stoner I was looking at the on-x valve as it is a one and done procedure. Taking warfarin concerns me because I'm very active and would hate to get a bleed. Also, the testing involved is a negative. There aren't a lot of surgeons who perform this Ross procedure. I think the closest surgeon to me from this site indicated is in chapel hill, north carolina. I know new york just implemented something to do with elective surgeries so I may not be able to go to NYC. Any chance you can give me Dr. Stelzer's email?
Sara Latina are you booked for surgery tomorrow? apologize I didn't see this right away. His email is paul.stel ... Read more
Sara Latina are you booked for surgery tomorrow? apologize I didn't see this right away. His email is paul.stelzer@mountsinai.org
Sara, The hardest part is over!!
And every day you will feel stronger.
I also went to Mt Sinai this year. The level of exhaustion you feel when you ...Read more
Sara, The hardest part is over!!
And every day you will feel stronger.
I also went to Mt Sinai this year. The level of exhaustion you feel when you wake up has no name, particularly as our sternums were
“Opened”.
Take those naps. Cardiac rehab will be a great experience- - bonding with other surgical patients is energizing as well as getting stronger. You are ij my thoughts….
I am now 83 years of age. At 75 I had an aortic valve replacement. I’ve enjoyed 9 years of great health.
Trust God to keep you healthy. Eat well, and ...Read more
I am now 83 years of age. At 75 I had an aortic valve replacement. I’ve enjoyed 9 years of great health.
Trust God to keep you healthy. Eat well, and very importantly, walk every day; at least 2 miles. Give yourself time to build your stream through, but be diligent to walk and get daily exercise.
Adam Pick Great update Joe! Thanks for sharing! And, happy early 9th anniversary!
Hi Sara, it is almost over and you will soon wake up in recovery mode. You will be in outstanding hands at Mount Sinai in the ICU. I was there this past ...Read more
Hi Sara, it is almost over and you will soon wake up in recovery mode. You will be in outstanding hands at Mount Sinai in the ICU. I was there this past March. You have your very own 24/7 nurse, so don't hesitate to ask for anything. You will be very tired when you wake up, but just know that is very normal. Thinking of you. You are stronger than you can ever imagine!
Sending up prayers for you tomorrow. You’ve had quite the journey, and hopefully, your road will be much easier. I pray that you have a peaceful and calm ...Read more
Sending up prayers for you tomorrow. You’ve had quite the journey, and hopefully, your road will be much easier. I pray that you have a peaceful and calm spirit about you when you awaken in the morning. You’ve got this! ~❤️
I will have you in my thoughts and prayers this week. It has been 4 months since I was at Mt Sinai for mitral valve repair. Your preparation will make such ...Read more
I will have you in my thoughts and prayers this week. It has been 4 months since I was at Mt Sinai for mitral valve repair. Your preparation will make such a difference to comforting you and your family.
Hi Sara! I had mitral repair surgery using the minimally invasive approach. My surgeon performed the procedure through a right mini-thoracotomy. The incision ...Read more
Hi Sara! I had mitral repair surgery using the minimally invasive approach. My surgeon performed the procedure through a right mini-thoracotomy. The incision is completely healed and is located in the skin fold under my right breast. Sara, you can do this! I was terrified to find out I needed surgery. I had 2 subarachnoid hemorrhagic strokes last year. I apparently had endocarditis that attacked my body, damaging my mitral valve and traveling to my brain. I’m now 10 weeks out of surgery and walking 1.5 miles almost daily. God will “carry” you through this! I spent my time before surgery preparing everything at home. I probably over-prepared! It helped me be proactive and stay positive! I will be glad to be more detailed, just send me a message. The whole process was so much easier and less painful than I imagined.
Sara Latina Thanks Cindy. I am probably way over prepared too but like you said it keeps the mind busy
Sara , stay positive. I was meant to be operated on soon , but , they have delayed me to next year ( Luckily as COVID now is getting worse in Australia again ...Read more
Sara , stay positive. I was meant to be operated on soon , but , they have delayed me to next year ( Luckily as COVID now is getting worse in Australia again ). Take care and stay focused on the future and how good it will be.
Sara Latina Thanks David! I am sorry yours was delayed. As nervous as I am for this, I am praying every day tha ... Read more
Sara Latina Thanks David! I am sorry yours was delayed. As nervous as I am for this, I am praying every day that it does not get pushed out.
Hi! You get your ducks in order and then you keep busy and positive! Look to how good you’ll feel! Concentrate on that. I had a few pillows to rest ...Read more
Hi! You get your ducks in order and then you keep busy and positive! Look to how good you’ll feel! Concentrate on that. I had a few pillows to rest on in bed and massaging sore muscles really helped! 10 days post surgery I joined friends for a small social event that was so uplifting as everyone cared and I was so happy to see people. I was slow to walk but each day got better. You can do it!!!
Sara Latina Thanks Linda! Its encouraging to hear you were able to attend even a small social function only 10 d ... Read more
Sara Latina Thanks Linda! Its encouraging to hear you were able to attend even a small social function only 10 days out.
David Williamson posted a note for Sara that says:
Hi Sara, it is ok to be scared but don’t focus on fear. Focus on how awesome you will feel soon. Trust your doctors (believe me they know what they are doing) ...Read more
Hi Sara, it is ok to be scared but don’t focus on fear. Focus on how awesome you will feel soon. Trust your doctors (believe me they know what they are doing) You will be surprised how fast you recover, I was.My surgery was 3 years ago and I am doing great,I have been back on my bicycle for over 21/2 years and riding well.God Bless
Thomas LaCombe Thanks for the hope! Feeling this same stress and anxiety with 13 days prior yet
Sara Latina every time I have to go up stairs that's what I keep telling myself. How in weeks I will feel so muc ... Read more
Sara Latina every time I have to go up stairs that's what I keep telling myself. How in weeks I will feel so much better. I'm also hoping to feel better than ever since I was born with this issue - maybe I've never known what a 100% feels like
I’m a bicycle rider too, being active your recovery is going to be faster. These surgeons are gifted and your life will be better when it’s behind you. ...Read more
I’m a bicycle rider too, being active your recovery is going to be faster. These surgeons are gifted and your life will be better when it’s behind you. I had a AVR with a tissue valve. I walked a Mile the third day after surgery and was released. I rode a metric century six months after surgery. Three years after surgery I’m still going strong feeling better then ever. I see my GP in between my yearly cardiologist, just for reinsurance. Good luck in your adventure