Some of the following words have an air of irony to them, but they are worthwhile nonetheless. I received the following email before my emergency surgery and was meaning to post it. I’ve actually received many emails like it from other BAV patients. Our stories are often similar. Don’t be afraid to reach out to someone to share your story.
I found your blog recently and was struck by how similar our cases are. My name is Elliott, I’m a 27 year old East Coast (MD) transplant west (Chicago). I was diagnosed with a BAV when I was 4, had echocardiograms every year but only just had my first MRI and found out about my aortic aneurysm in the last week — 4.8 cm (I’m 6’4, 220#). I enjoyed powerlifting for the past 4 years and my cardiologist, like yours, wasn’t thrilled to hear about my intense workouts. The cardiologist and I decided to wait on another set of MRI results later this year to see if the aorta’s changing and decide if surgery is the next step (it’s a when, not if with surgery). No more heavy weights, no grunting.
First, congratulations on what sounds like a very successful surgery. I admire your determination, it sounds like that’s a big reason for your quick recovery. I had inpatient chest (note: sternum/ chest surgery, not heart) surgery 7 years ago and I remember clearly that it was my determination to get out of bed, to get on my feet that got me on the path to being stronger than I was even pre-surgery. You’re on your way to being stronger than ever.
Second, a question for you. I remember something you said in a blog post about overcoming your hypochondria. Can I ask how you worked through and overcame that fear? That’s my main problem right now. Until my physician shared my MRI results and prognosis with me via voicemail last week (he shouldn’t have), I never suffered from hypochondria or medical fears. Since, I’m aware of every twinge in my chest, every slightly-shallow breath, any hint of faintness. Meeting with my cardiologist today helped, but it seems like whenever I’m not working on something or otherwise distracted, I’m hyper-aware of my body and I’m fearful of dissection . Do you have any suggestions for dealing with this fear?
Again, congratulations, and thank you for putting together the blog. You’re a talented writer with the gift of brevity. I look forward to hearing back from you,
Thank you so much for the kind words! I have received many emails by fellow BAV patients. A good percentage of the people that email me are young males, like ourselves. I think we tend to take it pretty hard. Our masculinity is all of a sudden threatened. The idea of being weak is very scary. Luckily for you and I, we have known about our BAV since childhood, which at least gives us some heads up. It is particularly hard for those who are surprised by the diagnosis and the need for surgery at some point in their 20’s or 30’s.
My hypochondria has gotten much better since my surgery. Leading up to surgery, I had a few instances of imagined emergency. I went to the ER one evening because i totally imagined up an aortic dissection. Like you, I was also very fearful of dissection. I wish I had a good suggestion for dealing with fear. Leading up to my surgery, I was very fearful. The best suggestion I can offer is to ‘get it out’ somehow. For me, my blog is what helped me deal with my fluctuating emotions and fears. Being able to talk [write] truthfully about what was going on in my brain and heart was extremely therapeutic. My suggestions for you would be to somehow get your thoughts off of your chest: Blog, write in a private journal, write an email every week to a friend or relative (or me), Set up a weekly coffee meeting with someone, talk to a therapist, or participate in discussions on the online forum valvereplacement.org.
Some good news that I can tell you is that after your surgery is over with, most of those fears go away. That dark cloud of uncertainty will have dissipated. Even immediately after my surgery, when I knew I had a 3-month recovery ahead of me, I knew that the worst was over. If your doctors recommend surgery sooner rather than later, then I would suggest listening to them and do the damn thing. The sooner it is over, the sooner you can get back to powerlifting.
Also, I cannot stress how important it is to have a support system of friends and loved ones. Though they may not understand what you are going through, their support will be critical. If possible, bring them to your appointments and let them help you. I am so thankful for my parents, girlfriend, and friends during that time.
Best of luck with all of your future meetings with cardiologists and surgeons. Record the audio of your appointments and ask lots of questions.
Your Bicuspid Bud,
I’d like to close this post with quotes from two wise individuals: