Monthly Archives: March 2014

Frustration Creek

It has now been 2 weeks since my 2nd heart surgery. It seems like a blur now. Now, I am home recovering, again. I’m sorry to say, but I need a major attitude adjustment. This is much more difficult than the first time around in some ways, and easier in other ways. I am in less pain this time around, and I feel very mobile. I do not feel very much short of breath compared to surgery #1. Physically, I feel good. My mom and I went on a 4-5 mile walk only days after returning home from the hospital. On the other hand, my doctor has put more restrictions on me. She does not want me to over do it at all during the first 12 weeks, so I need some new hobbies. I’ve been planting succulents.

Worst of all, this time I have to give myself hefty doses of antibiotics through a PICC line in my arm. I have to do this 4 times a day. These medications are broad spectrum because they do not know exactly which ‘bug’ caused the bacterial endocarditis (heart infection).

This is actually the hardest part…

I thought that I was done with uncertainty. I thought that after my first surgery, everything would be fixed and I wouldn’t have that dark thundercloud of uncertainty looming over my head any longer. People who get bacterial endocarditis once are more at risk at getting it again. Now I have this to worry about. Also, the fact that we don’t know which bacterium caused it, means that I don’t know how to prevent it. It probably came from my mouth though, because I had a week or so of bad bleeding gums, which is a common entry point for mouth bacteria that can cause Bacterial Endocarditis. So now I practice immaculate oral hygiene.

Sorry about all of this ‘woe-is-me’ crap. I need to get it out of my system. I feel more confused than ever. I feel like I’ve been kicked in the face by a donkey, and I’m sitting on the ground wondering what the hell happened. I thought I was home free, but now I’m lost without a map, alone.

The good news: I’m not dead. I’m trying SO HARD to remind myself of that. WHY the hell do I need to remind myself of this fact?!

I mean, I was literally days (or weeks) from death. This is something to be thankful for.

I’m trying.



Reaching Out: On Hypochondria

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.

Hi Anthony,

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,


Dear Elliot,

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

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:

yoda-fearlama fear

Only a Minor Setback

I was going to title this post, WHAT A GODAMN MOTHER F@CKING HUGE SETBACK,  but then my my mother happened to lean over to me and say, “dear, this is just a minor setback. You’ll be okay.” I knew she was probably right. So here is how it all went down: Last week I was feeling shortness of breath, and after worrying about it, and 2 ER trips, and finally meeting with my primary cardiologist and an echocardiogram, it was determined that… wait for it… my mechanical valve was starting to detach from the heart. dang. And i thought i was all strong and good to go. This is usually caused by an infection, but i was not showing any signs of infection. So I was to have emergency surgery the next day (Saturday). No time to mentally prepare. no Blogging. Just go and do it so you don’t die. They wheeled me in Saturday morning. The next thing I can remember is Monday. The time in between is a haze of drugs. Apparently I was a mad man on anesthetics and narcotics, fighting doctors and nurses as they tried to take out my breathing tube. NOT as smooth as the first surgery. Monday sucked as I was uncomfortable in the cardiac ward I was at. Overnight was bad too. I woke up in the middle of the night trying to escape and my Nurse Phil had to remind me where i was. I had no clue. Today was better. Today we moved to the ICSU (intermediate cardiac surgery unit), which is much more comfy. My current nurse Yu-Ni is the best nurse Ive ever seen. So here I am. Square one. The rehab phase begins again. It is a bummer, but it’s gotta be done. Wish me luck, ok?

ready. again.

ready. again.

Another long road.

Another long road.