I’ve only recently realized that throughout my blog, I have not compiled a thorough summary of my entire experience. I also did not sufficiently explain one of the most major events; the emergency re-do open heart surgery/valve replacement. I posted HERE while I was recovering from that event, but I was so exhausted, drugged up, in pain, etc., that I never explained fully what happened. This post will also exist in my SUMMARY tab. This post is my memoir of living with Bicuspid Aortic Valve, before and after corrective open heart surgery.
I was born in Hamilton, New Jersey in 1983, but this story begins a little later, when I was about 5 years old. One day I went to my family doctor, and he heard a murmur while listening to my heart. He told my mom that she should take me to a specialist at Deborah Heart and Lung Center. The performed the routine heart tests; echocardiogram (echo), EKG, and doctor exam. I was diagnosed with Bicuspid Aortic Valve (BAV) which means that my aortic valve had only two leaflets instead of three. A person born with this condition is usually not affected until adulthood. Many people do not know about it until their elderly years. I knew about it at such a young age because my doctor had a really good ear for murmurs, or perhaps mine was louder. Who knows?
Growing up, I went to Deborah Heart and Lung Center for checkups every 4 years. Even though the valve is deformed, it performs fine for a long time. Over time, the valve can become calcified, or become stenotic (aortic stenosis), which causes it to become less effective. For me, in my twenties, my valve started to leak (regurgitation). During each pump, blood would regurgitate back into the heart, causing the heart to work a little extra. This extra work causes the left ventricle walls to thicken, which can eventually lead to heart failure. When the doctor perform an echo, they look for a few indicators that help determine when elective valve replacement might be necessary. Ideally this surgery is done right before the valve becomes a serious problem, so that permanent heart tissue damage does not occur.
I grew up without thinking much about my heart condition. I thought it made me a little special because I missed school once every four years because of it. I played contact sports, and was very competitive. I was a very fast runner, and was never held back by my condition.
I went to college and became an outdoorsy person. I loved camping, hiking, backpacking, and rock climbing. After college, in 2006, I moved to Southern California and engaged in lots of rigorous outdoor activity, especially rock climbing and cycling. I even went without health coverage for a few years. I did not think about my heart condition much. I got my teaching credential in 2010, and got my first classroom teacher job in 2011. Along with this job was new health insurance, meaning a visit to the cardiologist was in order.
My new cardiologist showed performed the usual tests. After the tests she explained to me that my regurgitation has graduated from ‘moderate’ to ‘moderate-severe’. Also, my left ventricle walls were thickening a bit. This basically meant that my heart was starting to enlarge. I was not quite at the point where elective valve replacement surgery would be recommended, but she told me that her best guess was that in two years I would need surgery.
I spent a lot of time browsing the web for information about aortic valve replacement. I think I was often searching for answers that would point in the direction of denial, that I actually did not need surgery. I began to get anxious about the possibility of heart surgery. I would sometimes cry during my commute to work, when I was alone, because I was so overwhelmed with the scary unknown possibilities ahead of me.
Fast forward two years. At this point, I visit my cardiologist once every six months to check on things. This time, she sent me for a CT scan. This is a very intense type of X-Ray that generates a three dimensional view of my chest. The CT showed that I had an aneurysm in my ascending aorta (which is common for people with BAV). An aortic aneurysm is basically when the artery swells like a balloon. The more it swells, the weaker the walls of the artery gets, and the more likely it is to burst (dissection). These results were scary and real. I remember, I read her email with the results right when I was boarding a boat for a fun whale watch trip at Newport Beach. Reason right there to never check your email on your phone when you’re out and about. It can ruin your day!
During the summer of 2013, my cardiologist sent me to meet a surgeon in Los Angeles. Dr. Kwok Yun at Kaiser Permanente Sunset Boulevard. I wrote my very first blog post after that meeting. He told me that I need a valve replacement. He said I could wait, but that waiting doesn’t necessarily help because something bad could happen before then. He recommended mechanical valve because tissue valves wear down and often need to be re-operated on in about 10 years (give or take). He explained that it is recommended that young people (under 60) receive mechanical valves because the valve will outlast the patient’s lifetime. Re-operations are riskier, but in the end it would be up to me. I went with my cardiologist and surgeon’s recommendations and opted for a mechanical valve.
Mechanical valves require a lifetime of anti-coagulation therapy (Coumadin, Warfarin). This scares a lot of people because it can cause bleeding events that may be life threatening. It is also dangerous to have a baby while on this drug, so females who plan on having children often opt for tissue valves so they do not need to go on anti-coagulation therapy. I requested to receive the On-X brand mechanical valve, because it is made of super space age material (carbon fiber), and there was a new study out that determined that patients with it may be put on lower doses of Coumadin. This was an attractive idea since I am very athletic and engage in activities that could lead to bleeding and bumps on the head. The surgeon said that he was comfortable with installing the On-X valve, even though the St. Jude’s valve (another brand) is older, more common, and time tested.
This is about when I created my blog. I used the blog as a way to journal my experience, but also a way for me to process my feelings and put those emotions out there for others to see. I thought it would help me, and it did.
I experienced expected anxiety while preparing for the surgery. At times I wished that the waiting period would be shorter than 4 months. I was scheduled to be operated on November 25th, 2013. My parents planned on flying to California (from New Jersey) to be with me during my surgery and 2 weeks after I would be discharged from the hospital.
A few days before my surgery I had an early potluck thanksgiving with my parents, roommates and friends. I wanted to be with the people I loved before I went in. We ate, gave toasts, and drank wine. I was happy to have my parents meet my friends. It was a great night. I felt loved. I knew the odds were in my favor or survival; the chance of death during surgery was less than less than 2%, but I was still reflective and thankful of my friendships.
My parents and I got a hotel room in LA, since I had to report to the hospital at 4:00am. Before going to bed, I had to wipe my body with these disgusting smelling antimicrobial wipes to reduce the chances of infection. Falling asleep was scary. I bought a few meditation audiobooks to listen and help me fall asleep. I thought it would help my attitude and relax me. The guy talking in the audiobook talked about forgetting the future and the past, and focusing on right now. I tried really hard to do that. I eventually fell asleep.
In the morning, I woke up and was anxious to get to the hospital for some reason. I wanted to get this over with. I reported to the hospital and checked in. The surgeon stopped by as they prepped me. I fully trusted him. I had no choice. I tried to remain calm and stay positive. I was scared shitless, but some kept that fear buried somewhere below. I was talking to my friend recently who is a Certified Registered Nurse Anesthetists, and he said that they usually secretly give the patients medication to calm them down before they are moved into the operating room. This makes sense, because I remember being in such a good mood by the time I got into the OR. Soon after that, Zzzzz…
I went into surgery at 6:00 am. I woke up at 2:00pm. I was only on the heart and lung machine for 59 minutes, which is very brief. I was closed up in less than 3 hours. My faulty valve was replaced with an On-X Mechanical Valve, and my aneurysm was repaired rather than replaced. This means he made a little snip in my aorta, and sewed it back together so that it was back to the normal size. I woke up in intensive care. I had a nurse named Phil who is about my age taking care of me. After talking about music and whatnot, we discovered that he is the first cousin of my roommate, and that we partied together once! Small world!
Recovery from this surgery was textbook. There were moments of intense pain, but for the most part that was all managed well. I was put on my anti-coagulation medication Warfarin, and my INR was stabilized. Recovery in the hospital took 6 days. During that time I walked as much as I could. One really annoying challenge of surgery recovery is constipation. My parents hung out with me every day, and my roomies and friends trekked out to LA to see me too. I could hear the valve ticking in my chest. I was happy to be alive and I began to outline my recovery goals.
Once I was home, I began working hard towards a full recovery. I attended several weeks of cardiac rehab, which involved nurses monitoring your vitals while you did easy exercise on treadmills and stationary bikes. I soon felt like I could do the rest of recovery on my own.
Below is a list of some of my recovery milestones, and how long after surgery I achieved them:
- Pooping (a full legit one)- 5 days after surgery
- Coffee- 12 days
- Walking 5 miles- 2 weeks
- Drinking a beer- 3 weeks
- Cycling up hills at about 75% max effort- 6 weeks
- Back to work- 6 weeks
- Rock climbing outside again- 8 weeks
- Bench press- 12 weeks
Things were going great. I went to the cardiologist for follow up appointments, and everything checked out. Usually they perform an echocardiogram about 3 months after surgery, and everything looked good. I wanted to start exercising harder, but my doctors wanted me to continue taking it easy. I wanted to be taken off of my beta blocker, but my cardiologist insisted that I stay on it.
On Monday, March 10th 2014, about 3.5 months after my surgery, I woke up experiencing some significant shortness of breath. It felt worse while I was lying down, though I still felt it while standing and walking. I definitely felt short of breath when I walked too fast or exerted myself. I went to work hoping it would go away. My heart rate was pretty high while resting. Before this day, my heart rate was usually at about 75 beats per minute (BPM), but now was up around 95 BPM while resting. These symptoms were very concerning. I called my doctor and she scheduled blood tests.
On Tuesday, I pretended it wasn’t happening. I went in for the blood tests. I pretended as much as I could, but when I lied down that night, the shortness of breath got worse, and it really scared me.
On Wednesday, I stayed home from work and went in to the nearest ER (not my home hospital). A doctor performed an echocardiogram (without Doppler), and said everything looked fine. I was discharged. He missed something important: Doppler is a function that may or may not be used in echocardiograms. Just like how doppler can be used to measure the movement of clouds and stars, it can be employed to show the movement of blood, thus the regurgitation inside the heart. If the ER doctor were to use echo with doppler, he would have notice the severe regurgitation, which would have suggested that my valve was seriously malfunctioning. I would later call this hospital and explain what they missed, and they would use my case as a learning experience to be discussed at a weekly meeting amongst the doctors.
On Thursday, I went back to work. My blood tests started coming in. Some numbers looked weird. My BNP (B-type Natriuretic Peptide) was abnormally high. BNP is a substance secreted from the ventricles or lower chambers of the heart in response to changes in pressure that occur when heart failure develops and worsens. This seemed very bad, but I didn’t really know what it meant. Still scared.
On Friday, at work, while one of my morning classes were entering my classroom, my cardiologist called me. She said, “You need to come to the ER right away. I am working now, so I can see you when you get here.” I asked what was wrong, and she said that she wanted to check me out herself.
I grabbed a hallway aide to cover my class and I went to my principal’s office. While trying to explain to her what was going on, I immediately began to break down. My whole world was crumbling. I thought everything was under control. I thought the doctors took care of everything. I thought everything was fixed. I didn’t understand. She offered to drive me to the hospital because she did not want me to drive while I was so upset.
I checked into the ER and an echocardiogram technician soon came to my room. He began to perform the echo. Soon after he began the imaging, I could tell her was a bit perplexed. His facial expression began to strain. He looked concerned. I got more nervous. He said, “Dude, I’m not supposed to say anything, but I just think you would want to know… That your mechanical valve is falling off.” I began to freak out, and my heart started to race. This tech should not have said this. My anxiety level went through the roof, which was not helpful. He told me to calm down, and he called my cardiologist. ‘
She arrived quickly and looked at the screen with the tech. She said, “Mr. DiLemme, I’m sorry, but this is not good. This is called a dehiscence, which means that your valve is coming off at the sutures. There is possibly an infection. Have you been having no fevers, or any signs of being sick?” “NO,” I said. I began to cry uncontrollably, and she consoled me and tried to calm me down. She told me that I needed to be transported immediately to the LA hospital where I originally received my surgery. I called my mom.
The EMTs arrived, and whisked me away. The medic who rode in the back with me talked with me about cycling and this and that. He said he would buy me a beer next time he saw me, perhaps out at a bar in town.
I arrived to Kaiser Permanente Sunset Blvd, and they wheeled me into the cardiac ward. My surgeon’s assistant came to speak with me. He told me that I needed to be operated on again. The operation needed to be redone. There was probably an infection, but they would only know once they went inside me to look. He said that this re-operation was riskier than the first. I asked him what my chances were, and he responded with, “There is about a 10-15% chance of death during surgery.”
He asked if I would mind that they use the St. Jude’s valve rather than the On-X valve this time. He asked because I specifically requested the On-X valve last time. The reason they wanted to go with St. Jude’s this time was because they used it more often, and were slightly more comfortable with it, so it would make the already risky procedure a little easier.
All this hard work and recovery, only to end up back on the operating table. I felt completely out of control. All I could do is put all of my trust and faith into the surgeon’s hands.
My parents booked the soonest flight that they could, but they would land in California while I was under the knife. My mother would later tell me that she prayed to God, and vowed to go to church every week if I would make it out of surgery safe.
This surgery would end up being much longer and complicated than the first. First they had to remove my damaged mechanical valve. That is when they discovered that the tissue surrounding my prosthetic valve was riddled with infection. My surgeon would later tell me that it looked like ‘dog meat,’ whatever that meant. They had to scrape, or debride the infection off of my heart tissue. My ascending aorta, which was previously repaired, would now be fully replaced with a synthetic graft. This procedure is known as the Bentall Procedure. The tricky part of this is that the coronary arteries have to be detached from the aorta, which is being removed, and reattached to the synthetic graft.
I would remain under anesthesia and unconscious for almost 2 days. The doctors were worried about removing my breathing tube, because I was connected to the heart and lung machine for a while this time. I have strange memories of coming in and out of consciousness during this period. Apparently I was very violent, and would constantly try to rip the tube out of my mouth. The nurses had to restrain my arms.
Recovery was much more difficult this time. I was in much more pain. I felt nauseous. I had a hard time breathing. I would start to panic sometimes. In my mind, the pieces of my heart were held together by tiny little threads that could just fall apart at any moment. My infectious disease doctor met with me and explained that I had some form of bacterial endocarditis, but they were unable to identify what species of microbe it was that infected the walls of my heart and prosthetic valve. He said it was rare that I showed no signs of infection before my valve began to fall off. He told me to take good care of my teeth as infection can often enter the bloodstream through bleeding gums.
I spent more time in the hospital this time; a little more than a week. My ICU nurses were great. I felt okay, but my spirits were down. I felt lucky to be alive, but I knew that it was possible for infection to return. They inserted a PICC line into my arm. I was prescribed a hefty dose of antibiotics (vancomycin and ceftriaxone) that I would have to administer to myself for a period of 6 weeks after discharge. This was to eradicate any microbes that might be hanging around in my system and to prevent them from clinging onto my new valve. Another surgery would be even riskier.
I had to connect bags of antibiotics to my PICC line 4 times a day, every day, for 6 weeks. I eventually fell into a rhythm with this, and it wasn’t as bad as I thought it would be, but it still felt like a ball and chain. Every day, I would wake up, and walk my dog to the coffee shop. I would have some coffee, then get up, walk home, and give myself my next dose of antibiotics. Repeat and rinse. My sternum hurt even more this time. It was hard to sleep. I would take lots of pain pills. I watched all 8 seasons of Dexter. I would garden and Bonsai to spend my time. I went on walks and eventually rode my stationary bike. I would ride the stationary bike while watching Dexter. I was bored and in pain. My mom stayed with me for 2 weeks after discharge. She was a great caregiver.
After 8 weeks, I ended my regimen of antibiotics and my PICC line was removed. I felt free. After this, my recovery was similar to the first. I was obsessed with becoming strong. I rode my bike and I climbed again. I became very focused in my rock climbing training. After 6 months post operation, I was a stronger climber than ever before, thanks to dedication to my training.
My Mom still goes to church for me.
There are 2 major parts of my recovery since my 2nd open heart surgery. Physical and emotional. My physical recovery involves improving my strength and stamina in cycling and climbing. Recently, I have recently started Crossfit and Olympic weightlifting. My emotional recovery involves recognizing my feelings, which has led me to understand the importance of helping others. Through this discovery, I have:
- Become a volunteer camp counselor at Camp Del Corazon, a summer camp for kids with congenital heart disease. Camp has become one of the most rewarding things I have done in my life. 2016 will be my 3rd year there.
- Volunteered 100 hours at my local children’s hospital cardiac ICU playroom
- Become a Heart Valve Ambassador for the American Heart Association, promoting their new patient support network.
I would continue to post on my blog, but eventually post less and less often. I still get daily visitors though. People who discover that they need a valve replaced in their heart will do a google search, and find my blog. These people often write me heartfelt and anxious emails. Some of them want answers to very specific questions. Some want to hear a little more about my story. Some want to talk on the phone. Everyone is scared. I have gained new friends through this process. I stay in touch with some people who email me. I rode a big bike ride with one heart-valve-friend, who passed away last year. Check out my blog post, which tells that story.
When we go through a scary event like open heart surgery, we want someone to relate to; someone who understands. Friends and family are helpful, but they don’t understand what it feels like.
When I started this blog, I wanted an outlet. I wanted a place to vent. I wanted to write my feelings down, and let people read them. I thought it would be good for me. I had no idea that my posts would be so helpful for other people. Even if it has been a very small slice of an already small group of people, I am so happy to have helped.
Special thanks goes out to my new friend Pete. He is going in for his 3rd valve replacement later this spring. Conversations with him inspired me to write this summary of my heart story. He was also kind enough to proof read it for me.
Thanks for reading, and I hope to talk to you, if you want.
Email me at firstname.lastname@example.org