Tag Archives: heart valve

Clot

On Wednesday October 12, while driving to work, the vision in my left eye slowly began to black out. It seemed as though dark clouds were forming around the center of my view. I pulled over and within 3 minutes of when it started, my vision was almost all gone in that eye, with a small pinhole in the center. Then, it started to get better and in a total of 5 minutes, my vision was completely back.
After consulting my nurse friends, I excused myself from work and drove myself to the ER, which was absolutely useless. Loma Linda ER is a trauma center, and during the 13 hours I spent there, it took 8 hours to get a bed, 10 hours to see a doctor, and the only tests they did was blood tests and an eye exam. They did not feel that it was necessary to look at my heart. This is the 2nd time in my life that the Loma Linda University Emergency Room overlooked my condition. The first time was back in 2014 when they were unable to notice that my newly implanted valve was infected and falling off. This time, if they were able to simply perform an echo on me, then they would have noticed what is going on currently.

Today I went in for an echocardiogram with my cardiologist. I was an emotional wreck. My biggest fear was that I had endocarditis again. It turns out that I have some tiny fibrous blood clots on my mechanical aortic valve. One of these tiny clots dislodged and briefly clogged the blood flow to my eye. The condition is called Amaurosis Fugax.
My anticoagulation therapy is Coumadin. Without the Coumadin, clots form on the rigid edges of my mechanical valve. My INR (how ‘thin’ my blood is) was supposed to be between 2.0-2.5. A normal person who isn’t on anticoagulation therapy will have an INR of 1.0. The day of my episode, my INR was 1.8. This means that clots were more likely to form. I missed a dose of Coumadin on Monday, which means my INR was probably below 1.8 then. These clots could have formed then. There’s no way to know though.

Endocarditis can cause Amaurosis Fugax, as can blood clots. Luckily, the clots are very tiny. Even if the clots that are currently in my heart were to dislodge, they would not cause serious damage, such as a stroke. The goal is to keep them from getting larger.

I was just admitted to the cardiac unit at the hospital. I will stay here for a few days to be given heparin while my Coumadin dose is increased. Heparin will keep the clots from getting larger and stop new clots from forming. My INR will be increased to 3.0 and I will now try to maintain that level at home from now on.

They are doing a blood culture to be 100% certain that it’s not an infection again (Endocarditis). They said that bacterial vegetations don’t normally form on the valve leaflets like how it appears in my echo, but since I’m here, and because of my history of endocarditis, they want to be sure. At this point I’m not worried.

I will hopefully be discharged this weekend. I am super disappointed that I will be missing two amazing concerts that I was planning on going to this weekend. As my friend told me,

“There’s a lot of magical stuff goin on in the world. Concerts and Music festivals are like condensed reminders of the beauty, engagement, and interconnectedness that is possible for humanity.”

Check them out the artists that I was going to see this weekend below:

How To Dress Well and Moses Sumney.

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!

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!

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

Waiting Room Rules

“Some people see the glass half full. Others see it half empty. I see a glass that’s twice as big as it needs to be.”― George Carlin

I have learned from my peers over at valvereplacement.org that the time (days, weeks, months, even years) leading up to one’s heart surgery is appropriately nicknamed ‘The Waiting Room’. I still have a month and a half to go, but I have learned quite a bit about coping during this difficult period. I decided to make a Waiting Room rule list. Perhaps this list can help some future valve recipient.

‘Waiting Room’ Rules

  1. It is okay to be nervous, but do not let it consume you. Stay busy.
  2. Stay busy.
  3. Bring your loved ones, and trust that they will stay with you.
  4. Trust that your loved ones will be there (and still love you) when you get out of surgery.
  5. Exercise while waiting. Define restrictions and limitations and stay as active as possible.
  6. Daily responsibilities may be forgotten due to stress. Create daily checklists.
  7. Reduce stress with any or all of the following strategies: Exercise, Yoga, meditation, reading, attending social gatherings, traveling, blogging, talking, hugging, starting new hobbies, laughing, breathing.
  8. No yelling.
  9. Crying is okay.
  10. Do your research. Become as knowledgeable about your condition/ surgery/ recovery as your doctor.
  11. Stay positive by following this procedure: If life seems bad, adjust perspective. Repeat if necessary.

*ADDITION: I polled the audience over at valvereplacement.org to get feedback about this list. Other ‘Valvers’ chimed in with additions and constructive criticisms to my list. See that thread here: http://www.valvereplacement.org/forums/showthread.php?42161-Waiting-Room-Rule-List

Hands to Heart Center

If you live in the Redlands, California area, please check out Inner Evolution Yoga.

Phil and I were originally climbing buddies  before he opened his own studio. His studio donates to local causes, and has weekly community donation yoga classes, where anyone can come and practice yoga for whatever they can afford. Inner Evolution is about community.

The Yogis call it your ‘yoga practice’, because that’s all it is. It’s like life, something that you must practice, and get better at. Some days are better than others. There are many physiological aspects that Yoga is assisting me with, such as breathing and core strength. Yoga also reminds me that it is okay to let some things go. If it is going to injure you, then let it go. Come back to it next time. Patience and persistence. There are many analogies.

And on that note, something completely different (not really). When I watched the following Nike commercial, I became overwhelmed with emotion. I usually don’t pay much attention to commercials, but I get this one. It’s like Dr. Seuss’ “Oh The Places You’ll Go” for extreme & endurance athletes.

“You’re in a fight against an opponent you cant see but oh, you can feel em’ on your heels cant you? Feel em’ breathing down your neck. Know what that is? THAT’S YOU.”

go get em.

Why I Chose Mechanical Over Tissue

It was recently suggested to me that I provide an explanation of why I decided to receive a mechanical valve, rather than a tissue valve to replace my diseased aortic valve. This post will  be dedicated to why I made this (very personal) choice.

ross procedure

ross procedure

There are generally two options for someone in my situation; Replace the Bicuspid Aortic Valve with either a mechanical valve, or a tissue valve. Tissue valves are usually from a cow or a pig. They can also be homograft, which comes from a human cadaver (check off organ donor on your driver’s license y’all!). There is also a crazy option called the Ross Procedure where the surgeon takes the patient’s pulmonary valve, puts it in the aortic position, and takes a pulmonary valve from a cadaver, and puts that in the pulmonary position. I mean, wow.

Mechanical Valve Pros & Cons

  • Mechanical valves typically last for life. Patients who expect to live for more than 15 more years are often encouraged to get mechanical valves. This means that one should expect only one open heart surgery.
  • The main drawback of mechanical valves has been their requirement for warfarin anticoagulation therapy, with its accompanying risk of bleeding. Bleeding events are rare but are potentially fatal. With properly managed anticoagulation therapy, rates are low for both bleeding and clotting. Without anticoagulation therapy, a blood clot may form on the new valve, inevitably causing a fatal stroke.

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Tissue Valve Pros & Cons

  • The lifetime of a tissue valve is typically 10 to 15 years, (possibly) less in younger patients. Tissue valves may also last longer.
  • Additional valve replacements places additional chances of risk that inherently goes along with open heart surgery.
  • The primary advantage of tissue valves is their lower requirement for anticoagulation therapy, which reduces the incidence of bleeding. However, other heart issues may require patients with tissue valves to go on anticoagulation therapy.

My Choice: The On-X Mechanical Valve.

Perhaps it is the cyclist and rock climber in my that thought that ‘carbon fiber with titanium housing’ sounded cool. My surgeon did not specify whether or not he thought this brand was better than others.  The St. Jude’s Valve is the most commonly used. I chose mechanical for several reasons:

  • If I can help it, I only want one heart surgery in my lifetime. Getting tissue valves would mean getting 2 or 3 replacement surgeries in my lifetime, especially since I am young.
  • Though doctors recommend against competitive or extreme sports, the reason for this is for the potential of injury, thus causing major bleeding events due to the anticoagulation therapy. I feel that I can do my sports of choice, with an understanding of the risks, and taking necessary precautions.
  • After recovery, the mechanical valve will probably perform better than the current diseased valve.
  • An exciting study involving On-X Valves and lower anticoagulation drug doses may result in future recommendations of lower doses of the anticoagulant drug Coumadin or Warfarin. Lower doses would lower the excessive bleeding episode risks.
  • Because mechanical valves typically last for life, I can get the replacement surgery now, rather than waiting for the last possible moment, which is often done with tissue valves (to reduce the total number of heart surgeries in one’s lifetime). This is a benefit since I also need an ascending aortic aneurysm fixed. The aneurysm dissecting or rupturing actually poses my greatest current risk.
On-X Mechanical Valves

On-X Mechanical Valves

This choice is a personal one. Some athletes choose tissue valves because they do not want to worry about anticoagulant drugs affecting their sports of choice. It is is important to remember however, that sometimes tissue valves still require these drugs, depending on the circumstances. To some athletes, multiple surgeries are an acceptable consequence to avoiding drugs for 6-15 years. For me, I have learned from my doctors and other mechanical valve ownersWomen who plan on having children will also choose a tissue valve, because anticoagulation drugs cause damage to the fetus.

The best thing to do is to weigh the pros and cons, think about what you want out of your own life, make a decision, and then make a game plan that will lead you towards a healthy, active, productive life.

I’m kind of annoyed that I cannot embed this here. Welp, here is the link.