Tag Archives: anthony dilemme

Meet The Heart Valve Ambassadors 

 

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The Heart Valve Ambassadors with AHA CEO Nancy Brown

Since last summer, I have been volunteering for the American Heart Association as a Heart Valve Ambassador, alongside 8 other valve patients. We come in different shapes, sizes, ages, genders, and from all over the country. The AHA originally  found me through my blog. Since becoming a volunteer, the AHA has featured me in their own blog, and connected me with the Wall Street Journal for an article about on heart surgery recovery.

The role of the Heart Valve Ambassadors is to tell their story and to support new heart valve patients, especially through the American Heart Association’s Support Network; a social media platform in their website that allows patients to communicate and support each other. The Ambassadors are responsible for facilitating conversations on the Support Network.

When people go through something like heart surgery, they often look for others who are similar to them who have already been through it. I get lots of emails from people, especially those that are my age. If you are a heart valve patient, please check out the AHA Support Network (create an account) and also feel free to message any of the Heart Valve Ambassadors directly. Read their stories and if they seem like they may be able to help you, please message them. That is our job as ambassadors.

Click on any of the Ambassador’s names to read their full story. 

Or click here to meet the Ambassadors on the AHA Support Network

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708b6269fe0b7174fdfbe582a04fc891-huge-annDennis & Ann Dobkowski

Dennis, 69, from Orange County, CA, was diagnosed with a heart murmur in 2012. Over time, Dennis’s symptoms progressed, and his cardiologist decided he needed an aortic valve replacement. Dennis had open heart surgery in January 2015 at St. Joseph’s Hospital in Orange County, where his wife Ann worked as a nurse. Ann was Dennis’s primary caregiver and support system during his heart valve replacement experience. Ann’s healthcare background helped him through surgery, cardiac rehab and recovery.


7e1b750208d698d970c90e85922374c6-huge-susanstrongSusan Strong

A hiker and healthy eater, Susan Strong was surprised to hear she needed heart surgery last year at age 49. But radiation therapy she had received more than three decades earlier to treat Hodgkin’s lymphoma had taken its toll: Strong had developed severe aortic stenosis and regurgitation. As an ambassador, Strong is sharing her story online and in person to support fellow patients — and even to inspire her students to dream up inventions like the one she credits with saving her life. “I want to take what I’ve been through and encourage people and give them hope that they can live a full life.”


10a8f8426ff9c085c6326dbdede42b90-huge-mridderMark Ridder

Mark’s journey with heart valve disease began in high school, when a heart murmur was detected in a routine physical exam. Later in life he was diagnosed with aortic valve stenosis, which ultimately turned severe enough to require valve replacement surgery. He’s thankful for the care and treatment he received during and after his surgery, completing a 12-week cardiac rehab program and building back up to jogging 4 miles regularly. Mark maintains a passionate interest in researching the use of nutrition, exercise and lifestyle choices to reduce the risk of developing heart disease. Understanding the power of a community that can truly empathize, he decided to mentor others as an AHA Heart Valve Ambassador.


068fa345fe92bd95f5948ff2aa456985-huge-ae1c95jenhyde71795ed2bb7c0ec0a0b01706b0-largesquare-hva_2Jen Hyde

Jen, 31, from Brooklyn, NY, was born with a congenital heart condition called Tetralogy of Fallot and had her first heart surgery at age 3. While traveling through China before beginning her first semester of a creative writing graduate program at New York University, Jen began to experience symptoms associated with heart valve disease. She had her second open heart surgery to replace her pulmonary valve in 2010.


084ea526897cdc9c31343a45ca5aeeac-huge-bernieBernie Oakes 

Bernie, 87, from Traverse City, MI, has experienced heart valve disease firsthand. Bernie was diagnosed with high blood pressure in his 20s, and had triple bypass open heart surgery in 2005. In March 2014, Bernie began to experience symptoms that indicated he had a problem with his aortic valve. Bernie underwent a minimally invasive surgical procedure called transcatheter aortic valve replacement (TAVR), which uses a catheter to replace the heart valve instead of opening up the chest and completely removing the old, damaged valve.


31cb8b5df670af36bf39bfb0278f0750-huge-christineChristine Rekash: part 1 / part 2 / part 3

At a routine physical, Christine’s physician detected a heart murmur. Upon being referred to a specialist, she was told she had mitral valve prolapse. Upon close monitoring and a watchful eye of her cardiologist through routine testing, she developed a leaking mitral valve. The conditioned had worsened, causing her heart to become enlarged as it worked harder to pump blood between the chambers. She had her mitral valve repaired through traditional open heart surgery and later developed post surgical complications. Christine has made it her mission to “pay it forward” and provide comfort,  encouragement and inspiration to others facing heart surgery. She shares her tips and tricks in how she is “kicking” out heart disease on beat a time in the hopes of making someone else’s journey a little easier.


30acfbe880713e77a36a83e85e358d8a-huge-kimberlyKimberly Goodloe

Kimberly, 48, from Atlanta, GA has experienced heart valve disease firsthand. Kimberly was born with an abnormal valve, but didn’t begin to develop symptoms until her 40s. She learned she needed an aortic valve replacement in 2009 and underwent open heart surgery, receiving a mechanical valve to replace her damaged aortic valve. Four days after her surgery, she developed a blockage and during a second surgery, she received a pacemaker.


f718df0dc3cf2371f1272e6fcf8f2ad2-huge-anthony Anthony DiLemme

The list describing Anthony DiLemme is long but life-changing. He’s a 32-year-old New Jersey-to-Southern California transplant, a rock climber, a cyclist, a blogger, an avid volunteer and an enthusiastic high school science teacher. He also is a two-time veteran of open heart valve replacement surgery. He says his life — his active lifestyle, growing up with a congenital heart defect, and even his summers working as a camp counselor — has been leading up to his newfound mission. “I feel as if I have been mentally preparing my whole life for this.”

Live Fully Now

z0auawqqI’ve been on an Alan Watts kick lately. There are endless YouTube videos of his lectures in which he imparts his wisdom and gift of words upon us. Here is a short (3 minutes) clip of one of his talks where he discusses the importance of living fully now, in this moment.

As heart surgery patients, the reality of our own mortality is thrust upon us. This becomes clear in the days leading up to the surgery. The fear can be crippling. After a successful surgery & recovery, that fear lingers. We are afraid so we worry about potentially dying one day. No amount of worry will prolong the arrival of death! In fact, the stress could possibly make it happen sooner.

I’ve made one mistake over and over, especially after my heart surgeries. Because of this near death experience, I have it in my mind that I need to do something greater with my life. There really isn’t anything wrong with that, except that it has become a desperate and flailing search. By constantly planning or deciding things that I should do to improve my life, I am forgetting to enjoy my life, now. There is no future, only now.

Watch The video below.

 

Echocardiogram Images 

I thought it would be cool to share my final echocardiogram results from my recent hospital stay. I took some video of the echo screen. My cardiologist points out the clot, which is small enough here to allow me to be discharged.

Also, notice my mechanical aortic valve shape. My doctor points to it in the 2nd video. It is near the middle of the screen. It is a circle, with a straight line that goes from its 12 o’clock to its 6 o’clock. That line will appear and disappear, which are the bi-leaflets closing. Use the picture of a St. Jude’s mechanical valve below to help identify it in the echo. regent-2

 

 

In screen shot below, I have circled the clot.  It appears as a little white smudge. It was larger when it was first detected last Friday. Try to look for that little smudge in the videos above.

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Kintsugi: The Art of Embracing Damage

A new fellow valve replacement surgery friend (“Valver” as we say) emailed me to tell his similar story to me. One thing he said stuck out to me, and reminded me of something that I have thought about quite a bit, but never wrote about here. He wrote,

I think of myself as an analogy…I feel like a broken plate that’s been glued back together…in one piece, but it won’t take much to break me again.”

kintsugiThis describes Kintsugi (or kintsukuroi), the Japanese art of repairing broken pottery with lacquer dusted or mixed with powdered gold, silver, or platinum. As a philosophy it treats breakage and repair as part of the history of an object, rather than something to disguise. What my new friend doesn’t realize, is that although he feels fragile now (he is still only 5 months post op), when the lacquer dries, he will feel more beautiful, and stronger than before. I can speak to this from experience. The speed and volume of personal and emotional growth that I have experienced since my heart surgeries has been incredible. I am a better, kinder, more honest person now, because this experience has unlocked something that was laying dormant inside me.

Please watch this very informative and poetic explanation of what Kintsugi is. When I watch this video, it brings me to tears because for someone who has been through a traumatic experience such as open heart surgery, Kintsugi is more than an analogy.

Some quotes from the video:

The art of Kintsugi became famous for turning broken objects into pieces more beautiful than the original product.

The fractures on a ceramic bowl don’t represent the end of that object’s life, but rather an essential moment in its history. The flaws in its shape aren’t hidden from inspection, but emblazoned with golden significance. 

The pristine is less beautiful than the broken. 

The Great INR Balancing Act

Living with a chronic disease/condition comes with up swings and down swings. Things are good, then not so good. It is a balancing act to stay healthy. Yesterday; great news, today; less great news. Below is an explain-y section, and a vent-y section.

Explain-y: Living with a mechanical valve means that I must be on the drug Warfarin (Coumadin) for life. Warfarin is an anticoagulant, which means it slows down the clotting factors in the bloodstream. This is prescribed to patients with mechanical valve because the platelets tend to stick or snag on the edges and surface of the synthetic valve. When the platelets snag, they begin to clot, forming a blood clot, which can then dislodge and cause deep vein thrombosis, heart attack, or a stroke.  Super bummer right?

Warfarin/ Coumadin are often dubbed as ‘bloodthinners’, though they DO NOT thin the blood. ‘Bloodthinning’ implies that the viscosity of the blood changes (Think ketchup vs. water). These drugs are anticoagulants. The term ‘bloodthinner’ is simply a nickname and not to be taken literally.

That being said, even doctors and nurses will use the term ‘bloodthinner’, though I will not for the remainder of this post. The anticoagulant factors in the blood can be measured using a simple blood test called the Prothrombin time (PT) test, which generates a number called the international normalized ratio (INR). A person that is not on Warfarin/ Coumadin will have an INR of 1.0. Someone who has a mechanical valve will usually be directed to maintain an INR between the range of 2.0-3.0. My cardiologist likes me to stay between 2.0-2.5, though it is difficult to stay within that small of a range. Basically, I am tested every other week, and if my INR is too low (under 2.0) they increase my daily dose), and if my INR is too high (above 3.0), they lower my daily dose.

There are lots of risks and factors to keep in mind when you are taking anticuagulation therapy medication like Coumadin. I’ll let you read about how Vitamin-K (found in leafy greens) affects INR, how having a high INR can be dangerous, and other factors by clicking this link.

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Please excuse my Bitmoji use.

Vent-y: For months and months my INR has been stable, but all of a sudden (last week) my  INR was measured at 4.3! That is certainly the highest it has ever been. They adjusted my dose, and ordered me to take my PT two days later. When I took it again, it was measured at 1.5! Too low! Two days after that (today), I measured again and…. 1.4! It is very frustrating, especially since this is a chronic condition, and this problem will spontaneously occur (hopefully rarely) for the rest of my life. As frequent readers of this blog my recall, last year I lost a fellow valver, cyclist, and friend due to deep vein thrombosis/ brain embolism due to clotting issues associated with his mechanical valve.

Two Year Anniversary

I would like to share my recent milestone and the emotions that went along with it.

March 15th 2016 marks my two year anniversary of my last open heart surgery (aortic valve replacement emergency re-do due to endocarditis). I had my yearly echocardiogram scheduled yesterday, one day before my anniversary.

Two years ago, I had a traumatic experience during an echocardiogram where the echo tech spilled the beans about the emergency that was occurring inside my chest (which was extremely unprofessional of him, and against code). He told me that my recently implanted prosthetic valve was literally falling off. This led me to a panic until my cardiologist came into the room 20 minutes later.

So you can understand why echo appointments freak me out. I’m feeling great now, in fact I think I’ve never felt better athletically speaking. Despite this, I was still very afraid that I would go in and hear bad news. I almost expect to hear bad news. I know that’s not the most positive thought, but it is the truth. It is fear that guides me to think that way.

And it was that same fear that caused me to keep this echo appointment and my anxiety about it a secret from my friends, girlfriend, and family. I spent most of the weekend with my buddy, and I didn’t bring it up once. But there I was, bottling it up inside, stewing on it, just being afraid; alone in my brain. One of the main reasons I started this blog was so I wouldn’t contain my anxieties, yet I failed to utilize this outlet, which would have been useful during the past 2 weeks.

Yesterday, I went to the echo appointment. The echo tech did my yearly echo last year as well, and we remembered each other enough to pick up where we left off in small talk from last year. The doctor checked the echo results remotely, and told the tech that everything was A-Okay, and that I can be sent on my way for another year.

The relief was astronomical. I didn’t realize how much of a weight this was on me. In the car, on the way home, I completely broke down for a solid 2 minutes. After I finally got a grip, I felt cleansed. Blue sky. Now, I feel energized and ready to make the best out of every day, at least for the next 50 weeks (until my next yearly echo approaches).

Cheers ❤

Anthony

The Story of My Heart

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.

SCAN0038I was born in Trenton, New Jersey in 1983. When I was getting checked up by my pediatrician when I was 18 months old, 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.

india-surgery-pediatric-aortic-valve-replacement-repair3Mechanical 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!

994659_10202180482741156_230337556_nRecovery 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

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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.”

all i could think ofHe 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.ascending-aortic-aneurysm

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.

IMG_2448Recovery 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.

 

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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.
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Heart Valve Ambassador-ing

 

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 anthonydilemme@gmail.com

Cheers.

❤ Anthony