Tag Archives: Bicuspid aortic valve

How You Live

I cannot believe that this is the first time that I’ve seen this speech given by Stuart Scott at the 2014 ESPY awards. Scott, an ESPN anchor, gave this incredible inspirational acceptance speech for receiving the 2014 Jimmy V Perseverance Award. I’m not much of a sports fan, so I guess I missed this; who knows. Either way, over a year after his death, Stuart Scott has inspired me. The most incredible quote for a person living with a chronic disease:

(which for the readers of this blog, feel free to insert <heart valve disease> or whatever life threatening chronic condition you have, in the place of <Cancer>… these diseases are different, but the struggle is always real)

“When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and the manner in which you live.” 

“So Live. Live. Fight like hell…”

See his speech below. Fast forward to the 7:00 mark to go right to his speech.

scottmem

His memoir came out last year.

 

Two Year Anniversary

I would like to share my recent milestone and the emotions that went along with it.

March 15th 2016 marks my two year anniversary of my last open heart surgery (aortic valve replacement emergency re-do due to endocarditis). I had my yearly echocardiogram scheduled yesterday, one day before my anniversary.

Two years ago, I had a traumatic experience during an echocardiogram where the echo tech spilled the beans about the emergency that was occurring inside my chest (which was extremely unprofessional of him, and against code). He told me that my recently implanted prosthetic valve was literally falling off. This led me to a panic until my cardiologist came into the room 20 minutes later.

So you can understand why echo appointments freak me out. I’m feeling great now, in fact I think I’ve never felt better athletically speaking. Despite this, I was still very afraid that I would go in and hear bad news. I almost expect to hear bad news. I know that’s not the most positive thought, but it is the truth. It is fear that guides me to think that way.

And it was that same fear that caused me to keep this echo appointment and my anxiety about it a secret from my friends, girlfriend, and family. I spent most of the weekend with my buddy, and I didn’t bring it up once. But there I was, bottling it up inside, stewing on it, just being afraid; alone in my brain. One of the main reasons I started this blog was so I wouldn’t contain my anxieties, yet I failed to utilize this outlet, which would have been useful during the past 2 weeks.

Yesterday, I went to the echo appointment. The echo tech did my yearly echo last year as well, and we remembered each other enough to pick up where we left off in small talk from last year. The doctor checked the echo results remotely, and told the tech that everything was A-Okay, and that I can be sent on my way for another year.

The relief was astronomical. I didn’t realize how much of a weight this was on me. In the car, on the way home, I completely broke down for a solid 2 minutes. After I finally got a grip, I felt cleansed. Blue sky. Now, I feel energized and ready to make the best out of every day, at least for the next 50 weeks (until my next yearly echo approaches).

Cheers ❤

Anthony

Tooth Care for the Prosthetic Valve Patient

IMG_1526

That’s the best fake smile I’ve got

My 2nd open heart surgery was 3.5 months after my initial aortic valve replacement, and was due to Bacterial Endocarditis (BE). BE is an infection along the lining of the heart tissue, and usually involves the valves. It is fatal if left untreated and often involves replacement of the infected valves and hefty doses of antibiotics. People with Bicuspid Aortic Valve or a prosthetic valve will sometimes get BE. They will try to identify the organism by testing the patient’s blood. In my case, they were not able to identify what it was. Because of this, after the surgery, I was given a 6 week course of 2 different types of wide range antibiotics.

BE can occur AFTER Bacteremia takes place in the bloodstream. Bacteremia is when bacteria enters the bloodstream. It can be the result of any cut. Intravenous drug users will sometimes get BE from using dirty needles. People like me are often told to take good care of their teeth, and to avoid gum bleeding because bacteremia can occur from any bleeding in the mouth, inflicted by yourself or a dentist. Though the recommendations have changed recently, people with prosthetic valves or a history of BE will usually take a dose of amoxicillin before a visit to the dentist.

My infectious disease doctor explained a method that might help prevent bacteremia from occurring from gum bleeding during normal daily tooth brushing. The idea is to kill the germs potentially opening up the gums with a brush/floss. The method:

1. Swish Listerine/ antimicrobial mouthwash for 30-60 seconds. Sometimes I mix 1 part hydrogen peroxide with 1 part Listerine. 
2. Wait 3-5 Minutes
3. Brush thoroughly with a soft bristle toothbrush
4. Mouthwash again (I added this step myself for redundancy. I know, I use a lot of Listerine)
5. Floss gently and correctly

6. Mouthwash again

Another tip given to me by another patient: Clean your toothbrush every now and then by soaking it in Hydrogen Peroxide overnight.

I understand that this is redundant and excessive. This was recommended to me after my horrific battle with Endocarditis, to avoid getting it again. 2 years later, I have loosened up on this method (I usually skip step 4).

I would definitely recommend this method to anyone recovering from valve surgery, because the first year after valve replacement surgery is when you are most susceptible to BE.

Other Links related to BE:

The 2007 Revision of the AHA Guideline for Preventing Infective Endocarditis (read the Conclusion at the top of page 2 / Table 3 at the top of page 10/ Table 6 at the top of page 13 )

PREVENTION OF INFECTIVE (BACTERIAL) ENDOCARDITIS Wallet Card

 

 

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

IMG_7379

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.

 

11210414_10203688058617240_6661862282094406512_n

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.
11954698_10153150676886139_597676561603782709_n

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!

Coming Soon: AHA Heart Valve Ambassadors!

3970874-f22eff30

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!

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.