Tag Archives: aortic valve

Bob’s Aortic Adventure

At this point in my own recovery, I have less to say and I say it less often (which is a tremendous current state of affairs if you ask me), so now my role is connecting with others who are going through, at various stages, their own valve replacement sagas. Bob is one of those people who somehow found my blog, connected with me via email before his surgery, and is now recovering (and blogging about) his own aortic valve replacement procedure. 


Like me, Bob moved from the east side to the west(ish) side. Bob is also a climber, and a very proficient trad climber at that. And like me, Bob has a mechanical aortic valve prosthesis. Like me, he has to navigate things like rock climbing while on anticoagulation therapy, and hiking up mountains with a body recovering from open heart surgery.

Bob is telling is story, like I told mine, like so many people these days choose to do after major surgery/ traumatic event. Doing so gives us power, knowledge, solidarity, and new friends.

Bob invited me on a climbing adventure some time next summer. I keep telling myself I’m going to start training for that…

Here is Bob’s Aortic Adventure Blog!

http://myaorticadventure.blogspot.com

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

Tell-Tale Heart

I was originally inspired to blog about my heart valve replacement journey by a woman my age who did the same thing about 2 years before my surgery. Her blog is: https://defectiveheartgirlproblems.wordpress.com/

lisasrival6I was so excited to hear that she appeared on my favorite podcast, Radiolab. In the episode she describes her aortic valve replacement, which was very similar to my procedure. She also describes a sensation that she experiences that I also experience! Every heart beat can be felt strongly in my chest. Not only is the clicking audible, but the beating is audible too. The energy from each beat is also transferred to my upper skeletal system. If you put your hand on my shoulder, you can feel my heart beat.

Summer describes this sensation, and how it affected her mentally and emotionally. I know exactly how she feels. I had he same reactions as her, and came to grips with it in a similar way. It was very emotional to hear this story.

If you are a valve patient, or soon to be, PLEASE listen to this story. 

Follow this link to stream the story from Radiolab’s website:

http://www.radiolab.org/story/radiolab-live-telltale-hearts-featuring-oliver-sacks/

Cheers!

Ride

I want to tell a story about my friend Matt.

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Matt and I at the starting line

When I first made this blog, a guy named Matt from Santa Rosa, CA sent me a message. Matt is a fellow cyclist who, when he was 19 years old (about 16 years ago), received the Ross procedure, a type of open heart valve replacement surgery. He wrote me because he found out that he needed to have another operation to replace the valves that were implanted years ago (biological valves often need to be replaced, but do not require blood thinners). He was following this blog, and challenged me to sign up for the Levi’s Gran Fondo ride in Santa Rosa. A Gran Fondo is a type of bike ride that often involves thousands of riders of different abilities. The riders are timed and while some people race; many take a more casual approach. The ride was a little less than a year from my initial surgery, and 8 months after his. The Gran Fondo was going to be a great goal for both of us on our ride to recovery, a celebration of our lives as cardiac athletes.

I had my complication and needed a reoperation in March of 2014. That was terrible, and it set my recovery back, but I was still ready for the ride, which was in October 2014. Matt had some complications during his surgery, which made his recovery a little rough in the beginning, but like me, he was ready for the ride.

My roommate John and I drove up to his house the night before the ride, and I chatted with him for the first time in person. Matt and I compared battle scars, and discussed the challenges that we both faced throughout our recoveries. We both had extra loud valves that could be heard across the room. We were both thankful for our lives, and our ability to ride our bikes.

In the morning we suited up and rode to the starting line. We snapped a few pictures as thousands of other cyclist trickled in until the starting line was just a hoard of riders. The ride was 67 miles, and when I finished, I was overcome with many emotions, and tears. I remember just saying to myself, “Thank you, Thank you, Thank you….”

Fast forward a few months to February of this year. Matt called me from a hospital bed. He had pain in his leg, which indicated a blood clot. Matt has mechanical valves (like me), and takes Coumadin as an anticoagulant. If the level of anticoagulation (or ‘thinness’) of the blood gets too low, clots can form, The clot forms on the valve, and can break off and get lodged in the leg. The other possibility is that there is an infection (endocarditis) of the valve, and a clump of bacterial vegetation breaks off and gets lodged just like a clot.

My second surgery was caused by endocarditis. Bacterial endocarditis can be very fatal, so I was so scared for Matt. I really hoped that he did not have an infection. The doctors ran their blood cultures and echocardiograms and determined that he did not have endocarditis!  This was great news! The clot in his leg was treated with heparin, and he was released.

A week or so later I received a call from Matt’s sister. Matt talked about our friendship with her and she got my number from his email. She told me, “Matt passed away.”

Though Matt did not have an infection, he was having chronic clotting issues, and a clot dislodged from his heart, and went to his brain. I was driving when I found out. Alone in my car, I cried and screamed.

Matt’s death hit me hard because he was my peer. I saw myself in him, and I saw myself in his death. “That’s me,” I thought to myself.

This journey has brought me many new friends. Through my blogging, I have met others who have been through, or are going through valve surgery. We share a common bond, and through the internet we connect and share our experiences with each other. It is difficult to talk about our journeys with family and friends who have not gone though it themselves. Even though they empathize and care, they do not fully understand the emotional and physical baggage that comes with heart surgery.

I am so thankful to have met Matt and shared this experience with him. Like me, all he wanted was to recover, and get back to the sports he loved. He was a cyclist, a skier, and a great man. I wish we could share a beer and ride together again. Here’s to you Matt. Cheers.

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Coming Soon: AHA Heart Valve Ambassadors!

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The American Heart Association (AHA) contacted me months ago about a new patient advocate program that they are calling The AHA Heart Valve Ambassador program, and they invited me to become an ambassador!

This blog has brought me so many unexpected things: opportunities like this new AHA program, new knowledge, confidence in my recovered self, and most importantly, MANY new fellow heart valve patient friends.

Before making this blog, I had no idea that it would be useful to that many people. I still receive emails each week from people who need valve surgery, and are scared. It brings many emotions when they tell me that my blog has brought them strength. That is exactly what the new AHA Heart Valve Ambassador Program will bring, to more people. The ambassadors will reach out to new patients to coach and advise, both in person and through the internet.

More to come on this! Next week, I will be traveling to Dallas, TX to attend the Valve ambassador summit, where we will learn exactly what our roles will be as ambassadors. I am mostly excited to meet the other heart valve ambassadors!

In the meantime, check out the American Heart Asoociation’s heart valve webpage:  www.heart.org/heartvalves

And if you heave congenital or acquired heart disease, become part of the AHA’s support network: http://supportnetwork.heart.org/home

Stay tuned valvers!

A Post for You: The Person About to Have Heart Surgery

It has been a while since I’ve posted anything real on here. I’ve been busy with work, finishing up my Masters degree, and staying in shape with climbing, cycling, jump roping, etc. Yeah, I’ve been jump roping. It’s hard.

I want to reach out to any new people that might be stumbling onto my blog.

You probably found my blog because you recently found out that you need a valve replacement via open heart surgery. And you’re scared. I know, I was there. I’ve received emails from dozens of people who need open heart valve replacement surgery and they are unsure about their future. I’ve maintained communication with some of them. I’m so happy to see their progress after their surgeries. I’m posting this because I really don’t have much more to say about my recovery, and I want to leave some wisdom and point you in the right direction of some valuable online resources. First the wisdom, then the resources.

Wisdom

It’s okay to be scared, to cry randomly, to cry often, to think to yourself, “why the fu#$ am I crying so much?!” It’s normal to be in denial about it, and you are probably doing lots of research to hopefully discover a reason why you don’t need to procedure; perhaps some new technology that no one else has heard of? Weigh your options with valve choice. It is a personal choice. You’re life will go one with either choice. Talk to other valvers about it. Find them on the internet (see resources below). Don’t be ashamed of your scar. I wear V-necks and tank tops more often now, almost to show off the fact that I’ve been through this mess and can still crush at the climbing gym, or the crag, or cycling up the hills. Be prepared for surgery and recovery. Do your homework. Keep yourself occupied while recovering. I did lots of gardening until I could be more active. Involve your support network in your doctor visits, surgery day, recovery, etc. For more advice see the rest of my posts. I’ve been writing here since two surgeries ago, in 2013! 🙂

Resources

Me! I’m just a guy who went through a few heart valve surgeries, but please feel free to email me at anthonydilemme@gmail.com and ask any questions!

The American Heart Asoociation has a new Support Network on their website. Register here and join a conversation about valve disease, surgery, and recovery: http://supportnetwork.heart.org/registration

By the far the most valuable website for me is this one, which has allowed me to connect with others who have already gone through the process. These people are incredible supportive, compassionate, and knowledgable! http://www.valvereplacement.org/ValveReplacement.org/default.html

Another great online support group Facebook group called Heart Valve Surgery Support Group. The following link may work. Otherwise simply search for the group name.               https://www.facebook.com/groups/15618633322/

Adam Pick’s blog, website, and his book.                                                                 http://www.heart-valve-surgery.com/heart-surgery-blog/                            http://www.heart-valve-surgery.com/

The Athlete’s Heart Blog by Heart Surgeon Dr. Lawrence Creswell http://athletesheart.blogspot.com/                                                                                   Particularly This Post.

Ascending Aortic Dilatation Associated With Bicuspid Aortic Valve (Article in Circulation) http://circ.ahajournals.org/content/119/6/880.full

Valley Hospital: Calculate Your Relative Aortic Size http://valleyheartandvascular.com/Thoracic-Aneurysm-Program/Calculate-Your-Relative-Aortic-Size.aspx

On-X Mechanical Valve Clinical Studies                                           http://www.onxlti.com/low-anticoagulation-study/clinical-results/

Ironheart Foundation (Post Heart Surgery Racing): http://ironheartfoundation.org/ironheartracing/

Digifit Heart Monitor System                                                                       http://www.digifit.com/

Summer Camp for kids with Congenital and acquired Heart Disease http://www.campdelcorazon.org/

cheers!

Bouldering 10 months Post Surgery

Bouldering 10 months Post Surgery

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.