Tag Archives: aneurysm

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!

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.

Ascending Aortic Dilatation Associated With Bicuspid Aortic Valve

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If you are like me, then you have an ascending aortic aneurysm associated with bicuspid aortic valve and are potentially at risk for aortic dissection. This may sound fun and interesting, but it’s actually a health risk. Turns out you need to get the darn thing replaced. The tricky thing for cardiologists has been determining what size aneurysm should be an indicator for elective surgery. Apparently, based on this study (from Circulation), there is a neat little calculation that can be used to make that determination. What you do is compare your aneurysm size relative to body size, with the value of 10cm/m^2 being the indicator. But don’t take my word for it:

…adults with small body size should undergo earlier intervention because a higher ratio of aortic size to body size is a predictor of increased risk.85,118,119Calculating the ratio of aortic area in square centimeters to body height in meters, using a ratio of 10 as an indicator of increased risk, has been proposed.85,119 The value of 10 was derived from the mean ratio minus 1 SD at time of dissection in BAV patients; it is a conservative threshold that would theoretically precede 95% of dissections. Increasing “aortic size index,” a ratio of aortic diameter in centimeters to body surface area in square meters, was correlated with dissection, rupture, and death in 1 study; an index ≥4.25 cm/m2 indicated high risk (20% per year).118 The aortic size ratios and indexes should be used as rough guidelines until validated by further studies. Measurement of aortic elasticity by echocardiography may aid with risk stratification in the future; prospective studies are needed.66Genomewide association studies may identify high-risk genotypes that will aid with risk stratification as well.

Source: http://circ.ahajournals.org/content/119/6/880.full

I found this calculator on the Valley Health System’s website so that the layperson can simply enter their aneurysm size, height, and weight to obtain their suggestive results. Turns out I am still just under the recommended elective surgery point, which is great news because the point itself is already conservative. To see my results, just type in my data: height: 5’9″     weight: 158lb     aneurysm: 4.6cm

Calculate Your Relative Aortic Size Link: http://valleyheartandvascular.com/Thoracic-Aneurysm-Program/Calculate-Your-Relative-Aortic-Size.aspx