Jessica's Posts

Hi Jessica. I'm glad you have reached out to this forum for advice. You are so young to be dealing with this but it seems it's always been part of your life. My first advice would be a second opinion from a very reputable hospital who has good experience with a situation like yours. Maybe even a third opinion. I wish you the best. You are a beautiful young lady. Please keep us posted on your journey.

Great pic and story. Maybe similar to above... Get a few opinions on timing suggestions... Make sure your meds are maximized to stretch things out.... And by all means get to the very best centers / surgeons out there. Are you with a super high volume surgeon now? One interesting point is what you want the opinion of cardiac surgeons as well as cardiologist about timing. I found cardiac surgeons to be WAY MORE dialed into the nuances of surgery than the cardiologists who were back office dudes. I'd say you want to be with Cleveland Clinic, Mayo, Mt Sinai - one of the greats to maximize all of this. It is worth the effort!!! Best of luck.

Rose and J, thank you so much for your advice! Taking responsibility for my own medical decisions has been admittedly quite daunting these past few years, but I'm becoming more ready to dive in headfirst now. My previous surgeon was a pediatric surgeon, so I likely need to find someone new. Thank you for your suggestions, I'll use them to get some other opinions on when a valve replacement would be best for my health. I appreciate your support and I will definitely make more posts when I have updates! And Richard, I also get hungry every time I think of that steak!

Hello Jessica, Welcome! My name’s Allen. I wanted to reach out and share a bit from my experience, since I'm also in my mid twenties with a history of valve surgery. I had my Ross Procedure, for aortic stenosis, two and a half years ago when I was 24, so the whole process of monitoring and decision-making is still very fresh for me. From my understanding, it’s often wise to push a valve replacement, especially when you're young, until it's truly the right time. The key thing I've learned is that the "right time" isn't just about waiting until you feel terrible with severe symptoms. A huge piece of the puzzle for the doctors is the objective data they get from MRIs and echocardiograms. They're closely watching for signs of strain on your heart, particularly looking for right ventricle hypertrophy or enlargement. This is where having a fitness routine is such a brilliant way to evaluate things yourself. If you’re consistent, you get your own objective data. You might notice your heart is slowing you down just a bit or that your recovery is taking longer. That’s exactly what happened in my case. I had managed aortic valve stenosis my entire life, getting an echocardiogram annually or every other year. The final decision was made when a failed stress test and some critical echocardiogram values lined up with the notable but subtle symptoms I was starting to feel. Once that objective data was clear, things moved very quickly—I was in surgery within two months of that failed stress echo. It seems counterintuitive at first, but you can really only have a few sternotomy procedures before it starts getting more dangerous. Every year you can safely buy with your current valve is incredibly valuable. The key word is "safely"—meaning waiting, but not so long that your right ventricle sustains damage. Lifetime management of valve disease is key. It's a long-term strategy that you, your family, and your doctors will navigate together, based on the hard data from scans, how you're feeling, your life expectancy, and the lifestyle you want to lead. Sorry for my whole novel, I like to share what I’ve picked up along the way. Since I now have a donor pulmonary valve, I will almost certainly need an intervention in the next 20-30 years or sooner. I plan on two transcather valves to get me to maybe my late 50s or 60s meaning valve in vale procedures potentially then a potential open heart procedure to do a full replacement. I thought through this timeline with my surgeon and cardiologist before my valve replacement as the lifetime management portion of the conversation. Please message me if you have any questions. I’m not a doctor so I don’t wan this to be taken as medical advice just some tips from my own personal experience.

Jessica I would wait until you totally feel right about the timing. Being a for lifer heart patient I think we are very in tune with our bodies and sometimes we just seriously know when we know. There are also so many things going on in the heart valve world that a year could make a big difference in what's available for you. I am almost 63 and when I had to help my valve surgery it was actually a phone call from the insurance lady telling me that they were changing my Coverage from 100% to 95% by June 30. That was 35 years ago and it was that little bit of information that helped me make a good decision. I pray you make the best decision for you so you can live the best to the rest of your life be blessed Sue

If going to Cleveland clinic for a second opinion is not an option for you. I see Houston Methodist is very highly rated for Cardiology including surgery. They rank 14th in the country, 1st in TX. I did not want to travel overnight to Cleveland for my aortic valve replacement. I ended up closer to Home at U of Penn in Philly. They are 9th nat'l and 1st in PA. I was happy with the decision and had excellent care. US News publishes these annually. Best of luck! Thoughts and Prayers for peace! PS. Listen to your body. You will know when it is time...... https://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery/texas

Allen, for not being a doctor you sure have an impressive amount of knowledge in this area! Thank you for offering such thorough advice. Like you mentioned, I do recall enlargement of my right ventricle being one of the key factors that finally had my medical team pencil in the date for my last operation. At the moment, my cardiologist plans an MRI at the end of this year and in the meantime I am monitoring myself with exercise like you have mentioned; I appreciate your first-hand advice on specifics so I can know what to look for day-to-day. It’s difficult for me to imagine what lifetime management could look like for me, having already had two OHSs in my life and expecting a valve-in-valve within the next year or so, but many specialists I have spoken with are openly hopeful about the future of these operations, so I am optimistic that medical advancements will get me to grey hair someday. Being able to compare my own story to yours is so helpful; I see a lot of parallels between my story and yours, and it is very encouraging to know others my age are also journeying through this. Thank you so much for sharing.

I knew about my AVR for 10 years before it was done and it was mental torture for me. I am trying my best to have a much different attitude this time and even though I know I will need another replacement in the hopefully long off future, to enjoy each day, keep close connections with friends and family, and live life to the fullest ❤️