Tag Archives: heart

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. 

Camp Del Corazon

I would like to show you something that is one of the most important things in my life.

Camp del Corazon – “On the Island” from D. Russell on Vimeo.

Camp Del Corazon is a summer camp for children with congenital heart disease (CHD) on Catalina Island. Every year for the past 21 years, kids with heart disease have been attending this summer camp. The counselors at camp spend come from all walks of life: Doctors, nurses, medics, teachers, waiters, actors, musicians, you name it. Many counselors, like me, also suffer from congenital heart disease, some of which attended camp as campers and are now all grown up.

Camp is fully funded by donations and fundraising campaigns. EVERY CHILD that attends camp, goes for FREE, thanks to generous donations. At CDC, campers learn that they are strong, and capable of doing anything. They become confident despite their condition, and discover courage and friendship.

Please consider donating to Camp Del Corazon HERE.

This was my second year volunteering for Camp Del Corazon. Last year, I volunteered as a counselor only 5 months after my 2nd open heart surgery. Camp gave me a sense of belonging, just as it does for the children. I immediately became part of something bigger; a family of people who care. At camp, there are only good people. It is impossible to fully articulate how amazing and important Camp Del Corazon is, for so many children with CHDs.

If there is a place in your heart for a person who grew up with Congenital Heart Disease… If you suffer from heart disease… If you know someone who has a child with CHD… Please watch the short video below to peer inside camp and discover how truly important it is. Then, please consider donating to Camp Del Corazon HERE.

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Super silly at the rockwall

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yes, me in a Giraffe costume, walking the highline.

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The view from camp

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!

Reaching Out: On Hypochondria

Some of the following words have an air of irony to them, but they are worthwhile nonetheless. I received the following email before my emergency surgery and was meaning to post it. I’ve actually received many emails like it from other BAV patients. Our stories are often similar. Don’t be afraid to reach out to someone to share your story.

Hi Anthony,

I found your blog recently and was struck by how similar our cases are. My name is Elliott, I’m a 27 year old East Coast (MD) transplant west (Chicago). I was diagnosed with a BAV when I was 4, had echocardiograms every year but only just had my first MRI and found out about my aortic aneurysm in the last week — 4.8 cm (I’m 6’4, 220#). I enjoyed powerlifting for the past 4 years and my cardiologist, like yours, wasn’t thrilled to hear about my intense workouts. The cardiologist and I decided to wait on another set of MRI results later this year to see if the aorta’s changing and decide if surgery is the next step (it’s a when, not if with surgery). No more heavy weights, no grunting.

First, congratulations on what sounds like a very successful surgery. I admire your determination, it sounds like that’s a big reason for your quick recovery. I had inpatient chest (note: sternum/ chest surgery, not heart) surgery 7 years ago and I remember clearly that it was my determination to get out of bed, to get on my feet that got me on the path to being stronger than I was even pre-surgery. You’re on your way to being stronger than ever.

Second, a question for you. I remember something you said in a blog post about overcoming your hypochondria. Can I ask how you worked through and overcame that fear? That’s my main problem right now. Until my physician shared my MRI results and prognosis with me via voicemail last week (he shouldn’t have), I never suffered from hypochondria or medical fears. Since, I’m aware of every twinge in my chest, every slightly-shallow breath, any hint of faintness. Meeting with my cardiologist today helped, but it seems like whenever I’m not working on something or otherwise distracted, I’m hyper-aware of my body and I’m fearful of dissection . Do you have any suggestions for dealing with this fear?

Again, congratulations, and thank you for putting together the blog. You’re a talented writer with the gift of brevity. I look forward to hearing back from you,

-Elliott

Dear Elliot,

Thank you so much for the kind words! I have received many emails by fellow BAV patients. A good percentage of the people that email me are young males, like ourselves. I think we tend to take it pretty hard. Our masculinity is all of a sudden threatened. The idea of being weak is very scary. Luckily for you and I, we have known about our BAV since childhood, which at least gives us some heads up. It is particularly hard for those who are surprised by the diagnosis and the need for surgery at some point in their 20’s or 30’s.

My hypochondria has gotten much better since my surgery. Leading up to surgery, I had a few instances of imagined emergency. I went to the ER one evening because i totally imagined up an aortic dissection. Like you, I was also very fearful of dissection. I wish I had a good suggestion for dealing with fear. Leading up to my surgery, I was very fearful. The best suggestion I can offer is to ‘get it out’ somehow. For me, my blog is what helped me deal with my fluctuating emotions and fears. Being able to talk [write] truthfully about what was going on in my brain and heart was extremely therapeutic. My suggestions for you would be to somehow get your thoughts off of your chest: Blog, write in a private journal, write an email every week to a friend or relative (or me), Set up a weekly coffee meeting with someone, talk to a therapist, or participate in discussions on the online forum valvereplacement.org.

Some good news that I can tell you is that after your surgery is over with, most of those fears go away. That dark cloud of uncertainty will have dissipated. Even immediately after my surgery, when I knew I had a 3-month recovery ahead of me, I knew that the worst was over. If your doctors recommend surgery sooner rather than later, then I would suggest listening to them and do the damn thing. The sooner it is over, the sooner you can get back to powerlifting.

Also, I cannot stress how important it is to have a support system of friends and loved ones. Though they may not understand what you are going through, their support will be critical. If possible, bring them to your appointments and let them help you. I am so thankful for my parents, girlfriend, and friends during that time.

Best of luck with all of your future meetings with cardiologists and surgeons. Record the audio of your appointments and ask lots of questions.

Your Bicuspid Bud,
Anthony

I’d like to close this post with  quotes from two wise individuals:

yoda-fearlama fear

Week 1

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It has been exactly one week since the day of my surgery! I have to be honest I am surprised at my progress. My parents have been with me this whole time, making this process way easier than if I were alone. A week in review:

Monday 11/25/13    

Surgery Day. Surgery was shorter than expected. He replaced my aortic valve with an On-X mechanical valve (25mm) as planned. The portion of aneurysmal ascending aorta was shorter than expected, so it was repaired and reinforced, without any involvement of a synthetic tube. Surgery was 7am and I was awake by 2pm. The throat tube was out by the time I awoke. I was kept in the ICU overnight.

Tuesday

The neck tubes and catheter were removed the pain involved with the removal of these was a bit unpleasant, but nothing to lose sleep over. I was moved to the Cardiac Surgical Care Unit in the morning. I took my first short walk (1 lap around the unit). I sat up in a chair.

Wednesday

Though I hoped to have my chest tube removed, the doctors wanted to give it one more day to finish draining the fluid in my chest cavity. More walking. slight fever at night. difficulty sleeping. Neck/back/shoulder pain getting worse. Resting heart rate 95-105

Thursday

Nurse Practitioner removed chest tubes. Very liberating. Multiple laps around unit, several times a day.

Friday

Discharge day. Nurse Practitioner removed pacemaker wires Pacemaker is left on heart in case of problems). This is another eerie removal. You can actually kinda feel a tug inside of you, which is the wires dislodging from the heart itself. All other IV lines, EKG sensors & transmitter box removed. Met with doctor & NP one more time. Met with pharmacist about anticoagulant treatment. Heart shaped cough pillow received. Wheeled to parking lot to go home! Home by 4pm. Went for two .4 mile walks. Still had trouble sleeping. Back/neck/shoulder pain causing too much discomfort.

Saturday

More downtown walking. walked to coffee shop and ran into some surprised friends. Several .5 mile walks. Natalie came over and we went out to get a small potted christmas tree. She carried it. Back pain still an issue. sleeping still difficult, but slightly better.

Sunday

Went for a 2 mile walk! Later, walked again to a downtown art event, with some meandering around, probably .75 miles. Back pain getting better, but still sore. Went out to eat, but had no appetite. Got first full night of sleep! Zzzzzz…

Monday

A week has passed! A full night’s rest goes a long way. Goals seem attainable. Progress is obvious. Feeling better each day.

To another week…

 

Sleep

Sometimes it’s hard to sleep. The mind foolishly occupies itself all day long. Even more foolishly, when there is an opportunity to rest, it chooses to think. How adaptable is the mind, yet how stubbornly routine is the mind. All this talk of the brain; where’s the heart?

G’nite.

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