Tag Archives: anthony

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. 

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

My Meds: Warfarin & Metoprolol

ARC_Talk_About_Meds_Banner_Anthony

Hey cool banner huh?! The folks over at The Recall Center asked me to post about the medications that I’m on and how they effect my life. This is an important topic and I actually haven’t taken the time to write about it yet. I will review my diagnosis, surgical history, and the medications that I’ve been on within the past year.

My original diagnosis is that I was born with a congenital heart defect called bicuspid aortic valve. A normal aortic valve has three leaflets that open and close to let blood out of the heart, while I was born with a valve with only two leaflets. This condition is also associated with a compromised ascending aorta, which forms an aneurysm.

My valve was originally replaced on November 25th, 2013 with an On-X mechanical valve. I had a major complication only three months after that; infective endocarditis of the prosthetic valve, which led to a prompt, emergency re-do of the same operation. They implanted a St. Jude’s mechanical valve the second time.

The long term medications after each surgery were similar. I was placed on Metoprolol (50 mg), a beta blocker to keep the heart rate and blood pressure low. It controls the heart rate by binding to beta receptor nerve cells in the heart muscle, which blocks these cells from binding to adrenaline, epinephrine, and other stress hormones that can increase the heart rate. Basically, it keeps you chill all the time.  Usually the heart rate goes up for a while after heart surgery. Previous to surgery, I had a resting heart rate of 65 BPM. After surgery, even while on Metoprolol, My resting rate was 85-100 BPM for about six weeks. As my heart healed, my heart rate went down, which was a good sign. After that six week period, I started to get tired of this drug. It caused dizziness when I stood up too fast. It did not allow my heart rate to get above 130 BPM once I started riding my bike again. I felt that it was holding me back. I felt sluggish. I stayed on Metoprolol until four months after my second heart surgery. Cardiologists often disagree about whether prosthetic heart valve patients can discontinue Metoprolol. My current cardiologist explained that this drug is often prescribed after heart surgery, but in his opinion after the heart heals and there are no arrhythmia problems, then the beta blocker COULD be discontinued. My doctor gave me permission to slowly phase myself off of this med as discontinuing it cold turkey can cause  tachycardia or other uncomfortable/ dangerous issues. I decided to go off of this drug when my resting heart rate settled to 55-59 BPM, which technically speaking is brachycardia, or a slow heart rate. Since then, I’ve been feeling great with a resting rate of 65-75 BPM.

NEVER discontinue your medication without first consulting your doctor!

I was also placed on Warfarin (generic of Coumadin) with a target INR range of 2.0-3.0. Warfarin is commonly referred to as an blood thinner, though it is actually an anticoagulant. Patients with a mechanical valve must take an anticoagulant to prevent blood clotting on the valve. This clotting is called thrombosis, and is deadly as it can dislodge and cause a stroke elsewhere in the body. Once a month I go to the lab at my cardiologist’s office to get my blood tested. If I am not hitting my target range, then they adjust my dose. With a mechanical valve, there is no way around this med. I must take it or else I am seriously at risk. Taking anticoagulants, however often come with their own risks associated with bleeding. I have to be careful with my diet. Foods that are high in vitamin K, like leafy greens such as spinach or kale, can lower my clotting levels (INR). Other factors such as activity level and alcohol can effect a patient’s INR. To be honest, I live my life similarly to pre-surgery levels. I eat a well balanced diet with plenty of leafy greens, I am very active (cycling, rock climbing, lifting), and I have a few drinks each week. My Warfarin dose has been adjusted so that I hit my target INR without changing my lifestyle. People have problems with staying in their range when they make drastic changes all of a sudden to their diet, binge drinking, forget doses, etc. Often when a patient comes back from a vacation, their levels are off. Being a rock climber, cyclist, adventurer, I am at a legitimate risk of having a dangerous bleeding even while on this medication. A head trauma can be deadly. I have chosen to accept these risks in a pragmatic, responsible way by continuing my sports, but always wearing my helmet not participating in reckless behavior. Be sure you make these decisions along with your family and doctor.

I also take one baby Aspirin daily. This is taken for anticoagulant reasons as well. Studies have shown that mechanical valve patients are less likely to have thrombosis when they take aspirin in addition to Warfarin.

There are various anticoagulants each tailored to different types of conditions. There are some new drugs that have come out to treat people with different heart conditions, like atrial fibrillation , and who do not have artificial heart valves. Some of these drugs are appealing because they may not require monitoring of anticoagulant levels. The Recall Center recently posted about a series of lawsuits against one such drug called Xarelto. It appears that this drug may have some increased bleeding risks that may not outweigh the benefits of forgoing monthly monitoring testing that goes along with drugs like Warfarin. Also, Warfarin can be counteracted with high doses of vitamin K in case a patient needs emergency surgery (this happened to me), while Xarelto does not have an ‘antidote’. Do your own research before taking any new drug. You can learn more about Xarelto by clicking here.

How do I remember to take my medications?

Pill_BoxAfter my first surgery, I set a medication alarm on my iPhone. Studies have shown that patients who have some sort of reminder increases medication adherence, thus increasing their chances of a healthy recovery. I also always use my weekly pill reminder box. This pill case has morning spot and an afternoon spot for each day. I’ve gotten into the habit of every sunday, I refill the entire box with a week’s worth of meds, so all I have to do is take my dose when I wake up and go to bed each day.

Remember:

  • Ask your doctor why you are taking a medication.
  • Ask your doctor how the med works, and its side effects.
  • Ask your doctor if there are lifestyle changes that you can make instead of taking the medication. For example, you might be able to lower your blood pressure by changing you activity levels and diet.
  • Set up a reminder system that might involve alarms, calenders, and pill boxes. Consistency is important with any med.
  • Inform your family about your medications in case of an emergency.
  • Ask your doctor questions, and write down your doctor’s responses! I record every conversation that I have with my doctor on my iPhone’s audio recorder.

10 week Post-op Update

Just a quick update & status report. I met with my cardiologist several weeks ago for the last time. With my new job come new insurance and no more Kaiser. I’ll be meeting my new cardiologist from Loma Linda University Hospital this friday. I spoke with Larry Creswell M.D. of the Athlete’s Heart Blog. He was kind enough to speak with me about my situation, which I really appreciated. He is a cardiac surgeon who spends a great deal of time thinking about athletes with heart problems. He gave me some good insight which will help steer my conversations with my new cardiologist.

I have been riding my bike indoors on my indoor trainer. I have been keeping my heart rate under 120BPM with no problem. The metoprolol helps with that. It’s not too bad, i just drag the rig into the living room and watch an episode of Dexter while I pedal away.

We hiked out into the desert to watch the meteor shower the other day. The shower turned up pretty dry, but it was nice to camp. I even carried a pack for a half mile with no problems. I even can lift my girlfriend again with no problems. The slow march continues.

indoor setup

indoor setup

Pale Blue Dot

I’d like to write right now, but I think I need a catalyst. I’d like to talk about a clip from Carl Sagan’s original Cosmos series. The Pale Blue Dot, an observation that also inspired a book by Mr. Sagan, is a photograph of the Earth taken by the Voyager 1 spaceprobe at an incredible distance of 3.7 billion miles away. The picture sparked some philosophical ideas that Carl Sagan thought worthy of discussing. The video below takes his famous speech and adds some pop culture clips and music for entertainment value. Watch the video and if you like, read below what this means to me. The script is here btw.

The point of his speech is summed up at the end:

“To me, it underscores our responsibility to deal more kindly with one another, and to preserve and cherish the pale blue dot, the only home we’ve ever known.” 

The idea that I am a tiny speck on a tiny speck does indeed make me feel small, as it should, but it does not make me feel insignificant. What i take away from The Pale Blue Dot, is:

1. I am small and cosmically unimportant. However, I am important to my loved ones, and there are people who are important to me. What a gift it is for all of us to have lucked out in having the opportunity to experience life! Whether it was given to us, or we simply happened to be the lucky sperm, we have a special opportunity to be alive.

2. Why not spend this amazing opportunity to “deal more kindly with one another.” Carl Sagan was famously anti-nuclear arms and used this photograph of an insignificantly small Earth to demonstrate the insignificance of our disputes responsible for war and violence.  This insignificance does not diminish our love, however. Our love for one another is a useful way to spend our short time here on this spec.

My recent days have been full of thoughts of life and death. When mortality is so blatantly obvious as it has been for me lately, it can be hard to stay focused. I have always loved The Pale Blue Dot because of its positive message. As I sit here attempting not to wallow, this Carl reminds me of the simple truth that I am alive, and I have the capacity to love. There is absolutely nothing insignificant about that.

Digifit Testimonial

About a month ago, I posted about how I was using Digifit to continue exercising while keeping my heart rate low. The editors over at Digifit contacted me about doing a little testimonial for their blog. Check it out!:                           http://blog.digifit.com/2013/08/digifit-helps-anthony/

It is just really incredible (and strange) that, so far, this has been one of the most positive experiences of my life. I know there is a hard road ahead of me, But I can also see some rewards up ahead as well. I have many ideas that I can’t wait to explore and share with you.

I really don’t know when I was happier than now.

happiness

happiness

cheers!

Anthony

Just an Update

The Margarita Throwdown Winners!

The Margarita Throwdown Winners!

I haven’t posted in a while. Work started a few weeks ago, so I’ve been super busy starting the year off right with a new group of 8th grade science students. I’ve been continuing my workout plan, so cycling, climbing, and light weightlifting/ core workouts, all while keeping my heart rate under 140 BPM. In addition to keeping my heart rate under 140, I also make sure that I do not ever strain. With weightlifting, it is easy to be straining under too much weight and still have your BPM low, so I must manage both. BTW, when I say light weightlifting, I really mean light. I have always been more into light weight, high rep anyway.

Bike BBQ/ Inland Empire Bicycling Alliance Margarita Throw-down Victory! Redlands is graced with a pretty cool cycling scene. Behind Augie’s Coffee Shop (where I write most of my posts) is Bike BBQ, a place where people can use tools and seek expertise from volunteers on how to fix and maintain their bikes. They even sell bikes/ parts for a very good price. These two cycling organizations threw a contest where cyclist teamed up with bartenders and used stationary bike-powered blenders to make margaritas. I am proud to say that my bartender friend Bryan Bruce (From Caprice Cafe in Redlands) and I won with a very interesting jalapeño/black sea salt/pineapple foam Margarita concoction. Check out the video at the bottom of the post to see how it went down. The quality isn’t too good, but you’ll get the idea.

Inner Evolution Yoga: My friend Phil owns Inner Evolution Yoga in Redlands, CA. We used to climb a bit together. When he opened his studio a few years ago I helped him paint the ceiling. I even worked there for 2 weeks as the front desk guy while he was away on a retreat. When Phil read my blog and saw what was up with my life right now, he gave me 10 passes to his studio. Yoga is a fantastic form of exercise that will also aid me in breathing and relaxation techniques that will be very useful leading up to my surgery. Thanks Phil, and if any of my readers live near Redlands, check out his studio.

False Alarm: The other day I had a little false alarm. I had a sudden onset of a sore throat thursday afternoon, and being the researcher/ hypochondriac that I am, I googled it and found this article, and this one too. In my head I understood that the chances of an aortic dissection with only a sore throat as a symptom is possible, yet extremely rare. I also knew that if it was a dissection, and I ignored it, I would die. As I was freaking out, some people said, relax it’s nothing, others said that I should go to the ER just in case, and I just didn’t know what to do. I realized that If I didn’t go to the ER, I wouldn’t be able to sleep, so I just drove myself to the ER thinking that I’d be home by midnight if everything was okay, and that’s exactly what happened. It is a little embarrassing that I freaked out so much. I did learn about how Aortic Dissection can be diagnosed with a blood test called D-Dimer. Really interesting actually. This is what they did for me. The other option is a CT scan, which subjects the body to a large amount of radiation. I’m calling this experience ‘My Dry Run’.

Surgery Day Scheduled

thump thump

my heart

Whelp. It’s official. My Open Heart Surgery has been scheduled for MONDAY, NOVEMBER 25TH 2013. I chose the week of Thanksgiving break so that I can take off from work during the time in between Thanksgiving and winter break, then come back to work, ready to go after the New Year. This would minimize the number of days that I will be out.

When I was on the phone with my coordinator from the surgeon’s office, I asked about available days on the week of Thanksgiving. She replied with, “Yes, Monday the 25th, would you like me to schedule?….       sir?       hello?…” I couldn’t answer. I was thinking, is there maybe a better day? Would I rather it be after winter break? Is it better on a tuesday? My fear had my tongue. I realized that this surgery was going to happen and it didn’t matter when. Just get it over with.

“Yes, November 25th is fine, thanks.” I replied.

There. Done. Open heart surgery scheduled. Another stepping stone. Next step: My coordinator will ask my surgeon & cardiologist if they think I need an Angiogram. What’s that you say? An Angiogram is when they stick a tube into your heart from your groin to determine the size of bulges and blockages in arteries. So in case you were wondering the way to a man’s heart, in this case, it’s the groin. Cheers.

Anthony

OH NOOOOO!

Let’s start of with a little background on how this all began. When I was a child, my pediatrician heard a heart murmur in my chest. He referred me to a specialist, and after some imaging, I was diagnosed with Bicuspid Aortic Valve (BAV). I went back every 4 years for checkups and until recently I was always told that I would be over 50 years old when I would need surgery, if I needed it at all. I’ve been secretly hoping for advances in human organ teleportation technologies, but alas we are many years off on that one. I lived my life with little anxiety about it. I went to college and got a job. I moved to California from New Jersey and got different jobs. I became a teacher and finally got health insurance. I went back to the cardiologist, who told me that my heart condition got worse and that I would need surgery in 2-5 years.

That was 2011. I kept doing my thing. I continued to rock climb as hard as I could. I love bouldering and sport climbing. More to come on that soon. I bought a new road bike (Cannondale Supersix) and rode hard. I tend to push myself. I went back to my Doctor every 6 months and my stomach would be in a twist until I heard from her after each echocardiogram. Each time, everything remained stable. Until last month. I received a CT scan for the first time. CT scans are better at revealing Aortic Aneurysms than echocardiograms. The scan revealed that I have a 4.6 cm Ascending Aortic Aneurysm. This is commonly associated with BAV, or can exist by itself. When a person with BAV also has a Thoracic Aortic Aneurysm, it is usually time to operate. Too many risks at once. I met with a surgeon to see what he thought. He told me that it was up to me, but if it were him, he would get it ASAP.   This is a video of me when I found out that I needed Heart Surgery:                                                                 

So here I am. The wheels are in motion. Things are happening. This is actually going to happen. It is no longer a dark thundercloud in the distance. The surgery will happen soon. The thing that I have been wishing away will be coming, soon. SOON.

soon

My surgeon told me to keep my heart rate down in the meantime. I bought a heart rate monitor and intend to continue exercise to my heart’s content. It will be a challenge to rock climb and attack big hills on my bike while keeping my BPM under 150. I’ve been using a cool app called Digifit, which is highly customizable. I can do this. After the surgery, I will climb hard again.  I will not allow this to change my lifestyle. Soon I will post my goals and intentions.

What’s on the horizon? I have to get to the dentist to clear my mouth of any possible cavities (mouth bacteria can infect the heart valves under stress before & after surgery). I am continuing my exercise routine with some caution. A new school year is coming soon. I gotta start planning!

I hope you join me for this ride.