Dear Paige, I know how overwhelming this experience has been for me at times, trying to decide on the right valve surgery…. so putting myself in the shoes ...Read more
Dear Paige, I know how overwhelming this experience has been for me at times, trying to decide on the right valve surgery…. so putting myself in the shoes of a 29 year old young woman hoping to start a family? It’s not easy, but I’m glad you’ve come to a decision, that you have a supportive husband, and now can look forward to the next chapter of your life. I will be praying all goes well for you tomorrow. Where did you decide to have your surgery in the end? Rest well tonight and be at peace. ❤️🙏🏻
Marie Myers Great post by Sue Maize. I, too , feel for the younger people who need to go through this surgery. Pr ... Read more
Marie Myers Great post by Sue Maize. I, too , feel for the younger people who need to go through this surgery. Prayers for Paige, and i will be thinking about you tomorrow. Godspeed!
Rose Madura Yes, it's a whole different ballgame.❤️🩹
Pamela Gregory My best thoughts and prayers heading your way for a successful surgery tomorrow
Peyton Davies Hey Paige! I’ll be turning 31 this year and I’m also facing an aortic valve replacement before th ... Read more
Peyton Davies Hey Paige! I’ll be turning 31 this year and I’m also facing an aortic valve replacement before the end of the year. We’re looking into the Ross procedure for mine 🫶🫶
Dan Fouratt Paige it will go well today, my prayers are with you.
Hi Paige, We have a lot in common. My family also lived in Italy, but only for a year when I was 10. My condition is very similar - I have severe aortic ...Read more
Hi Paige, We have a lot in common. My family also lived in Italy, but only for a year when I was 10. My condition is very similar - I have severe aortic stenosis and moderate regurgitation. My aortic aneurysm is 4.1. I'm 37. When I was 20 or 21, I was also told I probably would not need surgery until I turn 50-55. I don't have any symptoms other than occasional heart palpitations. It's interesting that you were diagnosed in 2019 and you were able to wait till 2024. I wonder if I can wait longer instead of going through the surgery in June as suggested by the surgeons. They told me a can't wait a 'statistically significant' amount of time. But any amount of time is significant to me.
Max Jam Hii Ana, what type of valve are you getting at 37?
Ana K Hi Max, I'm leaning towards a bio valve. I hope it can last 15-20 years and then I can do a TAVR. The ... Read more
Ana K Hi Max, I'm leaning towards a bio valve. I hope it can last 15-20 years and then I can do a TAVR. The first surgeon recommended a Ross procedure, because of my age. I'm scared of the Ross. I don't want to mess with the pulmonary valve. I know with 100% certainty that I do not want a mechanical valve. I can't stand ticking and clicking of any kind and I don't want to be on blood thinners forever.
DeWayne Adamson I really believe that tvar valves in the future will last a min of 25 years.
Max Jam Nice Ana, yeah i would do the same. + im sure medical technology would give us a valve that last long ... Read more
Max Jam Nice Ana, yeah i would do the same. + im sure medical technology would give us a valve that last longer for the tavr!
Ana K 25 years would be fantastic! Let's hope for that :)
Paige Hahn Hi Ana! Yes we do have similar stories! For the same reasons I am choosing the bio valve. Yes actuall ... Read more
Paige Hahn Hi Ana! Yes we do have similar stories! For the same reasons I am choosing the bio valve. Yes actually I really insisted waiting and pushing the surgery as much as possibile because the aneurysm stabilized and the valve was very slowly progressing. But the leaky valve started to dilate the left ventricle which is a third indicator for surgery. I know when the valves get to severe they are worried about the left ventricle growing (at least with regurgitation) so I would see if that is why they are suggesting the surgery in June! Anyways my advice is have trust in your doctor!
Paige Hahn Hi Max, yes +25 years would be a miracle!!!
Stephanie Cole I had a bovine - didn’t want blood thinners either. Got 12 good years, as I mentioned earlier, it ... Read more
Stephanie Cole I had a bovine - didn’t want blood thinners either. Got 12 good years, as I mentioned earlier, it’s starting to have issues, so may last another year.. or more. But then if TAVR could last 25- that would be nice
Civita Fahey Ciao Paige. I'm much older than you but I chose a bio valve and have it now for almost 7 years. I ... Read more
Civita Fahey Ciao Paige. I'm much older than you but I chose a bio valve and have it now for almost 7 years. I was told 10-15 or more years. I got it at 55. I am from Italy originally, I was born in Formia, Latina ( Lazio) but have been living in the US since I was 7. This is a very hard decision for all of us to make, but, think of this way, medicine advances every day.. Who knows how they will get a valve by the time you are in your 50s. Buona Fortuna.. ciao..
Hey Paige, Regarding your question about the Ozaki procedure... I was able to connect with Dr. Doug Johnston, the Chief of Cardiac Surgery at Northwestern Medicine ...Read more
Hey Paige, Regarding your question about the Ozaki procedure... I was able to connect with Dr. Doug Johnston, the Chief of Cardiac Surgery at Northwestern Medicine at the Society of Thoracic Surgeons Conference in San Diego. Here's Dr. Johnston's response to your question. I hope this helps you! https://www.youtube.com/watch?v=XA2NNi9q6Ac
https://www.HeartValveSurgery.com - In this "Surgeon Q&A" video, Dr. Doug Johnston, Chief of Cardiac Surgery from Northwestern Medicine, answers Paige's ques...
Susan Lynn Thrilling to get these answers so spontaneously! Also, great to hear a surgeon recommending multipl... Read more
Susan Lynn Thrilling to get these answers so spontaneously! Also, great to hear a surgeon recommending multiple opinions - many heart warriors worry about offending their docs! Thanks, Adam!
Donna Casaletto Adam, I believe my surgeon Dr. Nathaniel Langer from MGH is at that same conference! Thank you again ... Read more
Donna Casaletto Adam, I believe my surgeon Dr. Nathaniel Langer from MGH is at that same conference! Thank you again for this site and I hope Paige you’re able to find out what surgery procedure will best fit your needs. 😍‼️
Paige Hahn Thank you so much Adam for the rapid response and taking the time to speak with Dr. Johnston at the c ... Read more
Paige Hahn Thank you so much Adam for the rapid response and taking the time to speak with Dr. Johnston at the conference! This was very helpful and also very securing that bovine valve is also a great option! I can’t thank you enough for the help!
Ciao Paige! Quick update regarding the AVNEO / Ozaki question you asked earlier... I will be discussing this procedure designed for aortic valve patients... Read more
Ciao Paige! Quick update regarding the AVNEO / Ozaki question you asked earlier... I will be discussing this procedure designed for aortic valve patients at the upcoming STS conference. Stay tuned.
Klara Čičić So thoughtful and quick action of you Adam, and I am sure will be very useful for Paige and many othe ... Read more
Klara Čičić So thoughtful and quick action of you Adam, and I am sure will be very useful for Paige and many others!
Adam Pick Hope so Klara! We've received questions about this procedure and other techniques for younger patie... Read more
Adam Pick Hope so Klara! We've received questions about this procedure and other techniques for younger patients. So, I'm looking forward to learning more.
Paige Hahn Wonderful! Thanks so much! What you’re doing for this community is really great and useful!
Adam Pick You got it Paige! If you need anything else, please let me know.
Hey Paige. Just wanted to let you know I'm in the same boat. Was living in Tel Aviv and ended up coming back to Canada to have my surgery here. I'm still debating ...Read more
Hey Paige. Just wanted to let you know I'm in the same boat. Was living in Tel Aviv and ended up coming back to Canada to have my surgery here. I'm still debating between a mechanical and a Ross, but every situation is different and unique.
Paige, hello! The choice of valve is not what is important here. Get that aneurysm fixed soon. Have you had a TEE or other method to ...Read more
Paige, hello! The choice of valve is not what is important here. Get that aneurysm fixed soon. Have you had a TEE or other method to verify the aorta size? What are your Dr's saying about the increase in the Aorta Diameter? What is the rate of increase? The bentall procedure can be done with either type of valve. I would think that your dr's should be recommending surgery in the next few months.
As for the valve, I was 54 years old and selected bio. But I wish I would have gone with a mechanical. I do not want to do that surgery again, TAVR or not. The surgeries (I believe) carry more risk than the required blood thinner regime.
Paige - do not put yourself through multiple surgeries go mechanical .............thats my advice and that is even if it means you cant have your own biological ...Read more
Paige - do not put yourself through multiple surgeries go mechanical .............thats my advice and that is even if it means you cant have your own biological children - although you may harvest some eggs? and use a surrogate or adopt - these surgeries are not fun and carry risks - one is enough for me
Rita Savelis Hello Paige. I'm sorry that you have to undergo heart valve surgery at such a young age. Valve choice ... Read more
Rita Savelis Hello Paige. I'm sorry that you have to undergo heart valve surgery at such a young age. Valve choices for younger women are more difficult than for men as women bear children. You can still go through a pregnancy with a mechanical valve but have to work with doctors who are comfortable with anticoagulants and the steps you would have to take. Your doctors can help you make the best choice for your situation. I had double valve surgery (in Paris) 8 years ago and have 2 Italian-made mechanical valves. (I already had children). Perhaps beginning with a tissue valve that may last 8 to 10 years would allow you to bear children without the complexity of an anticoagulant pregnancy. Then that valve could be replaced with a mechanical valve when it degenerates. I feel for you. Every patient's situation is specific to them. Take care.
Timothy Andre Chris, So much to unpack here. It’s probably best to let the surgeons do the recommending. What’s ... Read more
Timothy Andre Chris, So much to unpack here. It’s probably best to let the surgeons do the recommending. What’s good for one may not be good for another. As heart valve patients we can share our own experiences and allow others to make their own decisions without attempting to steer them in any particular direction. Also, it’s definitely not a man’s place to tell a woman what she should do regarding having children. And I think it goes without saying that heart surgery is not fun and it has risks 🤦🏽♂️
Paige, the pre-work leading up to surgery is the hardest part. You are doing your research and speaking to multiple surgeons and gathering as much info before making a major decision for yourself. You are doing great. Listen to your gut feeling, you will know what’s best for you.
Susan Lynn Welcome, Paige! Lucky you living in Milan!!
Valves are a very individual choice and not an easy o... Read more
Susan Lynn Welcome, Paige! Lucky you living in Milan!!
Valves are a very individual choice and not an easy one for someone so young. But, heart surgery is advancing every day. If you choose a bio valve, there's a great likelihood that there will be a longer lasting valve by the time you need replacement. Also, minimally-invasive techniques are becoming more and more common, so it is possible that future replacements won't be as complicated as traditional approaches.
Make the decision that's right for the life you want to live. That's why we all undergo heart procedures. Heart surgery is less about today or the few weeks of recovery, it's about enjoying the futures we've always imagined. Best of luck!
Andrew Dial The lifestyle you want to live… That’s the key. Choose the surgery that matches that for you. I k ... Read more
Andrew Dial The lifestyle you want to live… That’s the key. Choose the surgery that matches that for you. I know it’s hard now, and stressful and all the things going on in your brain… but I promise you, after hearing your recommendations from your cardiologist/surgeons, you will follow your heart and make the best decision for you.
Robert Stebbins Paige - this was a tough decision for me. My surgeon recommended a mechanical valve. I ultimately cho ... Read more
Robert Stebbins Paige - this was a tough decision for me. My surgeon recommended a mechanical valve. I ultimately chose tissue. I am 53 and understand that another surgery in the future is a high probability. However, I decided that quality of time was more important to me than quantity of time. Like Susan, I am hopeful that less invasive procedures will be an option when I need my next replacement.
Just sharing my decision. Everyone has their own preferences and I wish you all the best with this difficult choice. My surgeon reminded me that either option was a big improvement over my current failing valve. I found it helpful to keep that perspective in mind.
Paige Hahn Thank you everyone for the advice and kind messages. Yes I think in 10 years from now the surgeons wi ... Read more
Paige Hahn Thank you everyone for the advice and kind messages. Yes I think in 10 years from now the surgeons will have mastered the TAVR less invasive approach to a second tissue valve in valve. For those who got the biological valves, was your cardiologist saying that you would get a replacement valve through TAVR when the time is needed?
Alexander Casler Have you asked about aortic valve repair? May be an option since you list regurgitation and not sten ... Read more
Alexander Casler Have you asked about aortic valve repair? May be an option since you list regurgitation and not stenosis, but much like the Ross procedure it isn't offered everywhere.
Greg Lewis Yes, Paige, my surgeon mentioned the possibility of TAVR in the future. Good luck with your choice! ... Read more
Greg Lewis Yes, Paige, my surgeon mentioned the possibility of TAVR in the future. Good luck with your choice! PS if there is anything that this journey has taught me, loud and clear, it's that we have absolutely zero knowledge of where the future will take us. No valve comes with a guarantee! Do what you think works for you, then never look back! Again..good luck!
Rose Madura I received a tissue valve at age 59-1/2.. I actually was told I may never need a replacement but I'm ... Read more
Rose Madura I received a tissue valve at age 59-1/2.. I actually was told I may never need a replacement but I'm not naive enough to not expect one. But, yes, if I need one it will be a TAVR.
Hi Paige, I posted to your guestbook a couple days ago and don’t think you saw it. I was number 778 Ross patient of Dr. Stelzer at Mt Sinai. I can answer ...Read more
Hi Paige, I posted to your guestbook a couple days ago and don’t think you saw it. I was number 778 Ross patient of Dr. Stelzer at Mt Sinai. I can answer any questions you have regarding the Ross, Dr Stelzer and Mt. Sinai. For me, if I had to do it all over again, I would 100% not change anything. I feel so blessed to have had Dr. Stelzers hands work on my heart. He is the most amazing person. The day I met him I knew he was the surgeon I wanted to perform my procedure. Please reach out if you have any questions. And, check out my post surgery updates in my journal for a more details of my journey.
Tim
Timothy Andre I just saw you responded, sorry. The first surgeon I talked with recommended the Ross. I did my rese... Read more
Timothy Andre I just saw you responded, sorry. The first surgeon I talked with recommended the Ross. I did my research and knew what I wanted before meeting with the first surgeon. I then searched for the surgeon I wanted and found myself in Dr. Stelzers office, my second opinion. The Pulmonary valve I received was from a 45 year old male. That's about all I know about the homograft. Mechanical valve was not an option for me for personal reasons. The animal bio valves were also not an option because of the lifespan of them. The Ross Procedure made the most sense for me. I honestly didn't have to think about what I wanted very long. The Ross just seemed to be the best option for me. The possible lifespan of the Ross was exciting and also having two human bio valves, one being my own was an absolute no brainer for me. I hope this helps PS. The wonderful man, Adam Pick is the HVS website creator and is a Ross Procedure patient. He just recently celebrated his 17th year post Ross. He is doing fabulous.
Hi, neighbor!!! My daugter was in Venice for a short visit two months ago! I'v never gotten over the Adriatic to visit your beautiful, historic country, but ...Read more
Hi, neighbor!!! My daugter was in Venice for a short visit two months ago! I'v never gotten over the Adriatic to visit your beautiful, historic country, but I will someday!
I am 62 and had mitral valve repair 6 months ago, in Thessaloniki. Keep your search going and your questions flowing until you've found the right procedure for yourself! This group will be very helpful to you, especially on the recovery side!!! God bless you! Angela Meletiadis
Hey, I saw your post and I also had a BAV and aneurysm at around 4.6 cm. I had surgery May, 2022 at age 34. It took longer for me to recover than I would have ...Read more
Hey, I saw your post and I also had a BAV and aneurysm at around 4.6 cm. I had surgery May, 2022 at age 34. It took longer for me to recover than I would have liked, I’m now feeling almost back to normal! They were able to repair my valve by cutting an extra slit into it, although I understand that’s not always an option. I agreed with the Surgeon that if the repair wasn’t an option, I’d go with a mechanical valve. The aneurysm was repaired with a declan graft. Wishing you the best of luck in your journey, please let me know any questions you have.
Klara Čičić Danielle, I was just thinking of you these days and wanted to write you a message . How are you?
Danielle Elizabeth Klara! Hey, I am doing so much better, thank you! I’m in Breckinridge, Colorado snowboarding this w ... Read more
Danielle Elizabeth Klara! Hey, I am doing so much better, thank you! I’m in Breckinridge, Colorado snowboarding this week before classes start and work is so much better now that I’m in a different unit with a new supervisor. We’ve had so much snow. My blood work all came back normal now that I’ve been discontinued from all heart meds except baby Aspirin. I’ve even had energy to pick up xtra work shifts! How have you been doing??
Klara Čičić Oh my God I am so happy for you! After all that trouble you went through... Looks like man just gotta ... Read more
Klara Čičić Oh my God I am so happy for you! After all that trouble you went through... Looks like man just gotta have patience. I am ok I guess, but still not 100%, having some sleeping issues, working on that, having breathing difficulties...maybe in a few months it will all be behind me. Your story gives me hope.
Hi Paige, I too was born with a bicuspid aortic valve and had an aneurysm as well. I am 9 months into a healthy recovery from a Ross Procedure and Dacron... Read more
Hi Paige, I too was born with a bicuspid aortic valve and had an aneurysm as well. I am 9 months into a healthy recovery from a Ross Procedure and Dacron graft (ascending aortic replacement). I am 45 and hope to get 20-25+ years out of my new valves. I have never heard that a younger patient might have complications with their new donated bio pulmonary valve. Because of a stronger immune system? I would ask for a second or third opinion on that if the Ross procedure is of interest to you. Preferably a Ross procedure specialist.
I know this stage of your journey is filled with lots of questions and high levels of anxiety. We are all here if and when you need extra support. I'm happy to answer any questions you may have regarding my experience with the "Ross". I documented some updates after my surgery in my journal if you want to read about some of my experience.
You found this website and community of amazing heart warriors which is a great step in the right direction of your heart journey. Ask lots of questions, do your research as you are doing already, trust the process and take a deep breath. Above all else, advocate for yourself and don't stop until you get what you want. God bless you and good luck on your journey.
Klara Čičić Hello Paige and welcome to this community! You are not alone in this. I had mitral valve repair 3 mo... Read more
Klara Čičić Hello Paige and welcome to this community! You are not alone in this. I had mitral valve repair 3 months ago. All I can say is - read this Timothy's post a few times, it is so valuable advice and spot on! There are more young Ross patients who will chime in, I'm sure....
We have all felt like you are feeling right now. We will be of a support to you, keep your head up, you can do this! Big hug!
Steven Methot Hi Paige! I have a similar diagnosis and am about to embark on the journey, most likely scheduling s ... Read more
Steven Methot Hi Paige! I have a similar diagnosis and am about to embark on the journey, most likely scheduling surgery with my surgeon in the coming week!
Paige Hahn Hi Steven, which valve surgery are you going to have? I wish you the best of luck, you are in my thou ... Read more
Paige Hahn Hi Steven, which valve surgery are you going to have? I wish you the best of luck, you are in my thoughts!
Paige Hahn Timothy, I am scheduling an appointment with Dr. Stelzer after reading your posts :)!! Sorry if I ask ... Read more
Paige Hahn Timothy, I am scheduling an appointment with Dr. Stelzer after reading your posts :)!! Sorry if I ask you again, but they recommended you a Ross instead of a biological aortic valve replacement because the Ross is more promising for long term results? Which valve did they give you for your pulmonary? Also yes I’ve spoken with several experts and in young patients (under 30) our immune response reacts faster to “reject” the foreign biological valve and the calcium build up happens more quickly. But it may be different for the pulmonary valve. I’m going to look into this.
Steven Methot Paige... TBD. Will know more on Monday.
Mark Buttell Hi Paige. This is a great resource for you. I have a 30mm Hancock porcine pulmonary valve going on 19 ... Read more
Mark Buttell Hi Paige. This is a great resource for you. I have a 30mm Hancock porcine pulmonary valve going on 19yrs. However, they no longer make that valve. Technology is always improving. You are doing everything right by researching and reading these stories. Prayers to you.
Hello Paige, welcome to HVS and thanks for sharing a bit about your story.
I was born with bicuspid aortic stenosis, and lived till my mid-20s ...Read more
Hello Paige, welcome to HVS and thanks for sharing a bit about your story.
I was born with bicuspid aortic stenosis, and lived till my mid-20s without any real symptoms. We were monitoring my ascending aorta as well, and about the time I was 31-32, I measured at 4.9. I also had leakage as well. Fast forward to age 33, 6 months ago, I had my Ross procedure/ascending aorta Dacron graft replacement. I am happy to answer any questions you may have. There are a number of us on HVS who have had a similar surgery.
Also, the thought of the surgery, is worse than the actual surgery itself. It is nothing to worry about though, I promise.
Do your research/ask questions and pick the right surgery for YOU. Get more than one opinion.
Your heart will choose the right direction.
-Andy
Paige Hahn Hi Andy, thank you so much for your response! I’m so glad to hear you successfully had a surgery an ... Read more
Paige Hahn Hi Andy, thank you so much for your response! I’m so glad to hear you successfully had a surgery and your doing well! :) May I ask you what your doctor said about the duration of the biological valve put of the pulmonary valve? I’ve spoken to a couple of doctors who have given me different responses. They all agree that it will last longer than the aorta biological valve replacement but the doctors disagree on how long it should last to prevent a second open heart surgery. Thanks so much! And yes the thought of the surgery I’m sure is much worst than the actually surgery! Thanks for the comforting message!
Andrew Dial Thanks for the reply. So obviously it depends on the condition of your valve currently, and the new donor valve.. but assuming all goes well with the surgery, and everything goes as planned with minimal leakage at the end, they informed me that at 20 years, I will have a 20% chance at re-operation. I read an article somewhere online where a lady had got 35 years out of her Ross procedure. I chose this route because I did not want to be on blood thinners for life, and I will most likely be in my 50s when I need my, hopefully LAST, heart surgery.
My cardiologist, whom I’ve been seeing for 20+ years, doesn’t even offer the Ross procedure at his hospital. He recommended the On-X mechanical. So I had to be my own advocate, and find the nearest Ross surgeon, which happened to be only an hour away, and one of the fastest growing Ross programs on the west coast.
Andrew Dial Thanks for the reply. So obviously it depends on the condition of your valve currently, and the new donor valve.. but assuming all goes well with the surgery, and everything goes as planned with minimal leakage at the end, they informed me that at 20 years, I will have a 20% chance at re-operation. I read an article somewhere online where a lady had got 35 years out of her Ross procedure. I chose this route because I did not want to be on blood thinners for life, and I will most likely be in my 50s when I need my, hopefully LAST, heart surgery.
My cardiologist, whom I’ve been seeing for 20+ years, doesn’t even offer the Ross procedure at his hospital. He recommended the On-X mechanical. So I had to be my own advocate, and find the nearest Ross surgeon, which happened to be only an hour away, and one of the fastest growing Ross programs on the west coast.
Do all the research you can. Watch videos. Get numerous opinions. There are numerous pages on Facebook related to heart valve surgery, and aortic valve disease, etc etc.
Christina Scerbo Hi there… I’m sorry you are going through this and I completely understand exactly where you are ... Read more
Christina Scerbo Hi there… I’m sorry you are going through this and I completely understand exactly where you are coming from. I’m 36 and had severe mitral regurgitation and atrial septal aneurysm repaired 6 weeks ago. Although the idea of surgery seems frightening- think of it as a way to heal and repair your heart. I had mine robotically done. Whatever process you decide to take and repair or replacement you decide to go with, just have the faith that there are brighter days ahead. I, too want to have kids and I know if you get this done it will put you at ease and you will be that much closer to being able to start a family when you are ready. God bless you and good luck with everything. Keep your eye on the prize, a fully functioning heart….I’m here if you ever need to talk…
Paige Hahn Andy, 20+ years is great! Think of the advancement in technology by that time! I’m definitely goin ... Read more
Paige Hahn Andy, 20+ years is great! Think of the advancement in technology by that time! I’m definitely going to look into the Ross procedure.
Paige Hahn Cristina, thank you for your message! So happy to hear you are on your way to recovery :)!! And I hop ... Read more
Paige Hahn Cristina, thank you for your message! So happy to hear you are on your way to recovery :)!! And I hope you can soon also start a family!