Ben's Journal

Richard Munson  I totally understand your frustration. Mild regurgitation is good, 4.4 cm is under the surgery number. Thats usually 5 or more. On one hand, live your life, run, climb mt. Everest but on the other hand, don’t lift over 100 pounds. Bag of dog food maybe? You might consider a second opinion. I would do that. Peace of mind is an important thing. 

Valerie Allen  It may not feel that way now, but it does eventually fade to be background with lower stats like yours. I was very upset and anxious at first. Have they taken several tests over time to be sure your aneurysm is slow growing? That’s the main thing, in my mind. Once confirmed it is slow-growing, life just goes on. Eventually when and if closer to 5.0 they will move to every 6 months.

Ben Whitener  Thank you! They found my BAV by accident this fall. Did an echo in October and then just did an MRI. I won't have more images done for a year, but Dr is sure things are progressing slowly. Told to live my life, but frustrated that more action isnt being taken and I'm expected to pretend "all is well" Thank you both again!

Rose Madura  Ben, I knew from an early age (7) that I had "heart problems". That's probably all my parents thought I needed to know. They just told me not to push it - whatever that meant. So basically, I lived a normal life but was not allowed to play in any organized sports.  I had my surgery at age 59 and all is well. I didn't realize I had an aneurysm until I met with the surgeon. I don't know if I was told and forgot?  Who knows.  It's not easy but you can do it.  With an aneurysm, I'd kind of take it easy on lifting weights from what I've heard.  God bless you. 

Richard Munson  Its always easy to tell someone else to pretend all is well. I recall my eye surgeon telling me my eyes were fine after a botched cataract  surgery. I knew they were not. Come to find out, i was right and another specialist reversed the procedure and repaired it. 

susan harris  my son had ohs at 5. they estimated he’d need another surgery in mid 20’s. back then, i researched, was on this site when adam started it, diligently kept records of measurements after every annual visit.  valve disease is very slow developing. they know what to track and technology is advancing every day. it’s weird how it fades somehow. we kept all appts. but got back to living life. yes, it is always “there. “. and a week or so before each annual check up was nerve wracking -will it be now?  but my son played and continues to play ice hockey, travels for his job, surfs (not like adam’s waves in CA but in Nj). Keep up on technology, surgeons and options. this site is great for that. if/when the day comes, you’ll be educated. Interview cardiologists-you might find one you trust more, click with better? but try hard not to let it consume you. our theory was life is too short. live it fully. and find the best docs you can to take care of the rest. 

J Alexander Lassally  To this day, I resent my cardiologist at the time in 2018 telling me to "life my life" and to not "worry about my mitral valve" ... Of course, I did, but the spectre of surgery is there. It does not go away. For me, I compartmentalized it until it was clear that the surgery need had arrived. 
The compartmentalized strategy works well. You tell yourself the day will eventually come, but you don't freak out. Cardiac surgery need is not a light switch... 
So I say, embrace the fact you will need to intervene, and relish the time you have to prepare and "enjoy life..."  

Grace Mason   I was very distressed and anxious when I first learned about my aneurysm and BAV at 32. I agree with Valerie, as time passes and you don't see significant changes, you begin to relax and accept and yes, compartmentalize, as J. 
Try to focus on the benefit of knowing (being able to monitor and intervene) and hopefully it can help you be more present and grateful for every day now.
It takes courage to "keep on living your life", and you will find your way.

Deena Z  It’s such an incredible shock to hear the news that only so much of anything can sink in. I got second and third echos, to fully understand my issues (a lot to learn).  It helped; I received a bit more info each time , which shaped my perspective.   Also… sure enough, the cardiologists had different interpretations of the severity and if I would ever need surgery.
It takes awhile, as J said above, to compartmentalize the findings and go forward with life. Every year I had an echo and then again would be flooded with emotions and fears beforehand.  This occurred over 13 years, which is not that uncommon of  a wait.  By the time I needed surgery I was nervous,  but also looking forward to it being over.   So hang/in- there. Get a second opinion if you just want a reason to talk to someone again.  And definitely exercise away!  I did.  Half marathon included 

Yumiko Ishida  My mitral valve stenosis was diagnosed when I was in college and I lived more or less “normally” for 30 years before I started having problems. It did take some mental adjustment at first, but as long as you are asymptomatic, surgery could be a long way away. I agree with what everyone else mentioned already. Get a second opinion (for your peace of mind if nothing else) and exercise as much as you are able within the limits the doctors prescribe you. In addition to no heavy lifting, I was told no scuba diving and no exerting myself at high altitudes, but if the doctors tell you it’s ok, I’ll go for it. Oh, and don’t get pregnant!

Richard Munson  I was told the same thing about my 4.1 ascending aortic aneurism at 6-5 inches tall. No idea why height plays a role. I still get it checked for any changes once a year when they echo my mitral valve repair. I also take bp medicine and metropolol beta blocker as well which i think slows down your heart rate. I am considerably older than you but the same rules apply.

Adam Pick  Hey Ben, I was 33 when I learned it was "go time" for a BAV with severe aortic stenosis/regurgitation. Take it step-by-step to learn as much as you can about your specific cardiac disease, your treatment options, and your potential heart surgeons. I am hopeful the educational resources and people in our community will help you along your journey to a healthy heart! Adam (patient and website founder)

Ben Whitener  Thanks, Adam! I have LOVED watching your videos. What you have done for this community has been special and we appreciate  you. Hope to meet you one day!

Rose Madura  Ben, I knew about my "bad heart" (what I was told) since age 7!  I went about things normally but was always aware not to push things.  I did not even know I had an aneurysm until I met the surgeon.  I may have been told but I don't remember.  As Adam said, information is knowledge and the more you know about a situation, at least you know what you are dealing with.  And it's good that it is mild regurgitation and not severe and the aneurysm isn't over 5 cm.  Mine was 5.1 at the time of my surgery.  Anyway, God bless you on this journey and please keep us updated.

Adam Pick  @Ben - Great to hear you are enjoying the educational content here. Hope to meet you as well! Best, Adam

Valerie Allen  My aneurysm was discovered at about the same size. It took 11 years to get to the point of surgery. Of course I had regular checks -yearly once they determined it was slow growing, then every 6 months as it got closer to 5.0 cm. Mine wasn’t discovered until age 60 and everyone is different. Once we found it to be slow growing, I relaxed about it. Keep us posted!

Richard Munson  Ben, glad you enjoy my postings about life. By the time you head to the operating room i will probably be pushing up daisy’s but i will be reading your postings either from above or below. Probably below. I see you are from richmond. Our grandson is at virginia tech, not far away. Best of luck. 

Marcus Krauss  The good news is that you're aware of your condition and can monitor regularly now to make sure that if you cross a threshold for surgery you can get it scheduled. That's much better than not knowing and finding yourself in an emergency because you didn't know there was a problem. These things also don't progress linearly. You may have very little change for years, and then in a matter of several months your condition could worsen to the point of needing a surgery. Or things could look like they're progressing towards surgery and then nothing changes for years. That's why regular appointments are so important. I just had my BAV replaced 6 weeks ago at age 46 and I've been surprised at how fast I've been recovering. I also had no symptoms, felt fine, and was in good shape ahead of time. It's definitely OK to feel anxiety, but know that there's nothing in the road ahead of you that you can't handle!

Ben Whitener  @Marcus, Thanks for the info. I have enjoyed reading about your successful Ross procedure. May have some questions for you when its my turn to get surgery.