Tag Archives: anthony dilemme

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!

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

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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.

How to Fight Cardiac Depression

There are many forms of depression, and a whole range of degrees of severity of this mental condition. Cardiac depression is some form of depression that occurs after a heart event, such as a heart attack or heart surgery. There are many resources out there on this topic, but I found one to be very useful, and that is an interview on the Patient Power website with Dr. Kim Lebowitz of Northwestern Memorial Hospital. I highly recommend listening to the interview or reading the transcript

“When you look at the cardiac population as many as 20 to 40 percent of cardiac patients are going to be presenting with symptoms of clinical depression, and that might be compared to about 4 percent of the general population at any one given time having symptoms of depression.” -Lebowitz

Dr. Lebowitz explains that the presence of depressive symptoms after that cardiac event can actually predict a poorer outcome for a patient, which means that depression is an independent risk factor for both the development of heart disease and cardiac outcomes following a heart attack or cardiac surgery. Basically, depression can cause (increase) heart disease, and heart disease can cause depression. 

That sure does sound like a vicious cycle. Why am I discussing this? Because I have experienced first hand (on the lower end of the spectrum) some symptoms of cardiac depression. For me, it is easy to be positive in writing, like on this blog, on Facebook, or on posts at supportnetwork.heart.org/heartvalvedisease. I think these outlets have definitely aided in my overall outlook, which I will mention again later. That does not mean though, that I am not struggling with some symptoms of cardiac related depression. I would not say that I am depressed, but I have tasted the bitterness of some of the symptoms. I feel that I am taking positive steps (described below), but the effect of only a few symptoms have been very difficult for me. Imagine what someone who has full blown cardiac depression is going through.

So what does Dr. Lebowitz say & recommend?

  • Having a range of emotions or strong emotions does not mean you are depressed. It is healthy to express all sorts of emotions.
  • An individual with clinical depression will display a number of symptoms that cluster together that may cause the individual with distress or impairment to their daily life. These symptoms are:
      1. Sadness or a loss of interest or pleasure in most activities.
      2. Difficulty sleeping or an increase/ decrease of sleep.
      3. An increase or decrease of appetite. 
      4. Irritability.
      5. Cognitive changes: Feeling hopeless, worthless, guilt, trouble concentrating or focusing, feeling sad or down, and most importantly, feelings of suicide.
      6. Decrease in motivation in things, such as a decrease in sexual functioning. 
  • Depression is treatable and the treatment for depression is safe for cardiac patients and that effective treatment can improve their quality of life.
  • Not all pharmacological treatments are necessarily safe for heart patients. Antidepressants called SSRIs (selective serotonin reuptake inhibitors) have been found to be safe for most heart patients. 
  • Therapy, predominantly cognitive behavioral therapy is another form of treatment. 

Friends and family actually have a powerful role in reducing cardiac depression. The following steps can be taken by friends and family.

  • The first step is to recognize the symptoms listed above.
  • To decrease depressive symptoms, increase recreational activities. Initiating activities is the hardest part for patients. Friends & family members should encourage activities and participate with the patient.
  • Friends and family play the role of cheerleaders. It’s helpful to have someone point out how far they’ve come and everything they’ve accomplished. 
  • Friends and family may need to sometimes abandon their cheerleader mode, and simply acknowledge the patient’s frustrations and varying emotions. e.g. ‘Yeah, I know that this is hard and this is difficult and I understand.’ 

It appears that Dr. Lebowitz is from only a handful of healthcare professionals actually dealing with this issue with real patients at a cardiac hospital. What that means to me is that it is up to us (the patients) and their families to identify this condition, take active steps to alleviate the symptoms, and to report it to our cardiologists, primary care physicians, and mental health professionals.

While I recover from my 2nd open heart surgery, what am I doing to eliminate these symptoms and to stay positive?

  • Bonsai & gardening.
  • Blogging
  • Frequently walking around town with my dog Moon.
  • Finding new music.
  • Watching a new show (Dexter).
  • Meeting friends for coffee.
  • Being creative by doing art projects
  • Reading books & comic books.
  • Going on trips with friends.
  • Talking to mom on the phone.

See proof below.

Bonsai creation

Bonsai creation

Herb Garden +Cat

Herb Garden +Cat

A Letter to my Students

Dear Students,

I have been missing all of you. No, really I have. As much as we all look forward to vacations, this ‘vacation’ I am currently on is not a welcome one! I would much rather be at Cedar. I’d like to explain what happened to me, in case you were wondering. As you all know, in November I had open-heart surgery to have my aortic valve replaced. That surgery went well, and I recovered well, as you all may remember. Fast-forward 3 months everything was honky dory. I woke up on Monday, March 10th and I felt kinda weird. I had shortness of breath. What that means is even though I was sitting still, it felt like I just got done running a mile. When this happens to people, it is often a sign of heart or lung trouble. I went to the ER on Wednesday but they did not find anything wrong. Finally, on Friday afternoon, my cardiologist called me and told me to come to the ER that she was at, so that she could check me out personally. I was very nervous. Mrs. Maxwell saw that I was distraught as I was leaving school for the hospital. She drove me down the hill because she didn’t want me driving while I was upset! She is a great principal and a good caring person.

When I got to the hospital, I got a special type of imaging procedure called and echocardiogram. It is just like what doctors use to see babies inside a mother’s belly, only they are looking at my heart instead. What they saw was not good. The heart valve that was installed in November was actually COMING OFF! It was wobbling around in a funny way. I could even tell that something was wrong when I looked at it. My cardiologist told me that it was bad and that I needed to go to the LA Kaiser hospital to most likely get surgery again.

The ambulance took me to LA, and my girlfriend met me there. I was very scared. My first surgery was planned. This one was an emergency. The surgery was going to be riskier than the first. The chances of something bad happening during the surgery were higher, but I had the best surgeon around, and I had no other choice but to put my life in his hands. Saturday morning, I went into surgery.

The surgeons found out that some sort of bacteria infected my valve. Bacteria enters the human body all the time. Bacteria live in our mouths, on our skin, everywhere! This is normally not a problem because our immune system fights them off if they enter our bloodstream. The problem is, people with artificial valves are more likely to get infected by everyday bacteria than normal people. This is because the bacteria can stick to the artificial valve or the stitches that hold it in place. Even though that is true, it is still rare. Lucky me.

I was in the hospital for a week. The first few days were very hard and painful, but things gradually got easier. Now, here I am, recovering from heart surgery again. It feels like I traveled through time back to December, recovering from my first surgery. The frustrating part is that I was just feeling back to my normal self before this happened. I was cycling and rock climbing and feeling strong. Another difficult part of this surgery is that I have to give myself lots of antibiotic medicine, everyday, for 6 weeks total! 4 times a day I have to connect the medicine to a special tube that runs into a vein in my arm. This is called a PICC line and it stays in my arm until my 6 week antibiotic treatment is over. Learn about PICC lines here.

Life sometimes has a way of knocking you down when you least expect it. Don’t worry though, I intend on getting back up. This is a challenging time in my life, but it is not impossible. The only choice as far as I’m concerned is to focus on my goals that will help me get better. Just like how many of you have goals that will help you get into college someday, I have goals that will help get me healthy and strong again. Exercise and eating healthy are super important. By the way, I think you all should stop eating so many hot Cheetos and eat more fruit. Bring an apple to school!

So, even though I wanted to come back to work (this week), my doctor said NO WAY! She refused to let me come back to work because I really do need to heal. She said that another surgery would be even riskier, and we don’t want that now. Coincidentally, before my emergency, I accepted a job offer in Rialto (closer to my home) that would have required me to leave Hesperia a few weeks early in May. Even though this is a great opportunity for me, I will be very sad to leave the Cedar family, and all of you of course. The combination of my medical emergency and new job means that I will not be returning to school this year. This is happy and sad for me. My life is full of changes right now; some are tragic, some are exciting.

I have a strict policy of not friending non-relatives under the age of 18 on Facebook, however my other forms of social networking are public. I have Instagram, Twitter, and of course email. You can get my contact info on this page: https://robovalve.wordpress.com/contact-follow/

Remember, you can also follow my journey by returning to this blog to see my future posts about my life after heart surgery. On the right hand column, at the top of this page, you can enter your email to follow this blog. You will get notification emails when I write a new post.

I hope to stay in touch with all of you. If you have any science questions, high school questions, career questions, or life questions, please feel free to email me. Also, feel free to leave me a comment at the bottom of this post! I wish you all success in your lives. You know what success means? To me, success means happiness.

I would like to leave you all with a list of advice of how to be successful. Here it is:

Love, Mr. D


Mr. D’s Advice for 12-14 year-olds

  1. Think for yourself. Always respectfully question authority.
  2. Things are not lame or uncool. This is only your perception. Force yourself to be open to new ideas.
  3. Be peaceful and non-violent. Any form of violence does damage. All forms of peace make the world better.
  4. Remember who your friends are. Even if you lose touch with them, they are still your friends.
  5. Have lots of friends and few enemies. Respect all.
  6. Become a pro at SOMETHING. Learn how to do something new. Learn how to program computer code or design clothing or rock climb or create comics or how to write a song or play an instrument.
  7. Do science AND art. Science is a way to understand the universe. Art is a way to express how the universe makes you feel. To me, these two disciplines are interconnected.
  8. If you want to be a good student, you have to want to learn. Open your mind to your education and it will reward you later in life. I’m going to tell you right now, you probably aren’t going to be in the NBA. There, I said it. Now after basketball practice, GO STUDY DAMNIT!
  9. Make a list of 10-20 goals for the next 10 years of your life. Hang that list on the wall in your room. Change the list as needed. Check off items when completed.
  10. Be positive and be strong. Life will sometimes bring you down. It is up to you to get back up. Nobody will do it for you.
  11. Love.
  12. Whatever drama you are having now, or tomorrow, or even a year from now, you will someday forget about! If you are having trouble in middle or high school, PLEASE BELIEVE ME… It gets better.

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.