Jessica's Guestbook

Hi Jessica,
I don’t need to say this, but I will anyway:  you’re an inspiration to everyone who reads your story. Your strength and openness speak volumes.
You mentioned having a mechanical valve placed in your pulmonic position. Mechanical valves are typically made of metal and can last for decades, often a lifetime. Buy they do require lifelong anticoagulation with medications like Coumadin or Warfarin. Just to clarify, are you certain it’s a mechanical valve?
If it turns out to be a tissue valve (porcine or bovine), it’s true that they tend to wear out more quickly in younger patients. The good news is that there are several centers across the country exploring valve-in-valve options (TAVR), which may allow for replacement without open surgery. It’s definitely worth looking into.
All the best, Luis 

Hello, Jessica,
I understand what a challenge it is to decide, but I would be more inclined to go sooner rather than later for several reasons - I think your recovery will be better if you are not feeling compromised before surgery.  And I see how new advances are being made so that I trust  that your options later may be better and more longlasting, so that yes, you do need to consider minimizing the number of surgeries, but it's likely the number will decrease as the technology improves.  

For me,  (AVR and MVrepair, separate surgeries), it was also important to consider the stress I felt with waiting for being "bad enough" to have the surgery - the waiting was hard, and the always-wondering.  And for both my brother and me, when the AV started going, it deteriorated more quickly than the cardiologist expected. 

And really, there is no one good answer, Jessica - I hope all our input is helpful for you to consider what is best for you.  Not for any of us, but for you.  Listen to the small voice inside,  your instincts.

Good luck - we're rooting for you!

Hi Jessica! I had an aortic valve replacement in 2018, and symptoms such as fatigue were very noticeable but nothing was imminent so I didn't feel I had to make an immediate decision even though I had severe stenosis. What I found, as others have said, is that surgeons who specialize in valve surgery are the most knowledgeable and helpful to consult in addition to your cardiologist. I found this site after I did my surgeon search, but it was tremendously helpful as I prepared for surgery. I don't know where you live now, but getting a surgeon who specializes in valve surgery is critical and this site has some great recommendations. Find a surgeon who really listens and is very experienced so you can have confidence. Mine was Dr. Luis Castro in Northern California, and I knew immediately he was the best one for me, particularly after meeting with others. Best of luck in what is a tough journey I know, particularly for someone so young!

I’m sorry you are going through this. I would ask my cardiologist 1) how deteriorated is my heart valve right now (mild, moderate, or severe)?  2) what are the risks if I wait (can symptoms or dangers appear suddenly)?  3) If at all possible, I would get a second opinion at a hospital where there are heart valve experts. 4) Do you have shortness of breath, chest pain, fainting or fatigue which is suggestive of heart valve failure? I had an aortic valve replacement 8 years ago and my valve is wearing out, too, so understand your predicament.  Sending you my best wishes, prayers, and hugs in your path forward. You can do this when it’s time. I hope you post again and let us know how you are doing. You are young and that’s a huge plus when you require a new valve replacement.

Hi Jessica- your cardiologist was on point for you to monitor how you feel.   Whatever specific  heart symptoms be clear headed and be aware of changes.   In my situation over 15 plus years of symptoms primarily fatigue I could tell it was time for the surgery.  I had great confidence in my surgeon and was not very nervous and ready to get better.   

Best of luck and hang in there.

Hi Jessica,



My son just had his fifth open heart surgery.  He was 28 for his last one (October 2024), which ended up being a triple valve replacement.  His surgeon was Dr. Najm at Cleveland Clinic (we are from MN).  He has always traveled to whomever we think has the most expertise at the time for the situation at hand.  I was always uncomfortable with the cardiologists asking my son "how he felt" as he has never known what a "normal" heart function like.  I hope they did a stress test for you.  That is a more scientific measure of how your heart function is doing in addition to to lv and rv size and ejection fraction.  I HIGHLY recommend going to Dr. Najm at Cleveland Clinic for a second opinion.  They are extremely skilled especially at the multiple re-dos!!!    Our first consult was via the phone!  Good luck! 

After reading your story i can only say that you are an amazing young woman. But it sounds like you have your act together by taking control of your own health decisions. 
your positive attitude will serve you well as you get older. My first major health issue was my mitral valve but i was 79. You, on the other hand have lived with heart issues your whole life. I commend you.