Tag Archives: bacterial endocarditis

Tooth Care for the Prosthetic Valve Patient

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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

 

 

Ride

I want to tell a story about my friend Matt.

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Matt and I at the starting line

When I first made this blog, a guy named Matt from Santa Rosa, CA sent me a message. Matt is a fellow cyclist who, when he was 19 years old (about 16 years ago), received the Ross procedure, a type of open heart valve replacement surgery. He wrote me because he found out that he needed to have another operation to replace the valves that were implanted years ago (biological valves often need to be replaced, but do not require blood thinners). He was following this blog, and challenged me to sign up for the Levi’s Gran Fondo ride in Santa Rosa. A Gran Fondo is a type of bike ride that often involves thousands of riders of different abilities. The riders are timed and while some people race; many take a more casual approach. The ride was a little less than a year from my initial surgery, and 8 months after his. The Gran Fondo was going to be a great goal for both of us on our ride to recovery, a celebration of our lives as cardiac athletes.

I had my complication and needed a reoperation in March of 2014. That was terrible, and it set my recovery back, but I was still ready for the ride, which was in October 2014. Matt had some complications during his surgery, which made his recovery a little rough in the beginning, but like me, he was ready for the ride.

My roommate John and I drove up to his house the night before the ride, and I chatted with him for the first time in person. Matt and I compared battle scars, and discussed the challenges that we both faced throughout our recoveries. We both had extra loud valves that could be heard across the room. We were both thankful for our lives, and our ability to ride our bikes.

In the morning we suited up and rode to the starting line. We snapped a few pictures as thousands of other cyclist trickled in until the starting line was just a hoard of riders. The ride was 67 miles, and when I finished, I was overcome with many emotions, and tears. I remember just saying to myself, “Thank you, Thank you, Thank you….”

Fast forward a few months to February of this year. Matt called me from a hospital bed. He had pain in his leg, which indicated a blood clot. Matt has mechanical valves (like me), and takes Coumadin as an anticoagulant. If the level of anticoagulation (or ‘thinness’) of the blood gets too low, clots can form, The clot forms on the valve, and can break off and get lodged in the leg. The other possibility is that there is an infection (endocarditis) of the valve, and a clump of bacterial vegetation breaks off and gets lodged just like a clot.

My second surgery was caused by endocarditis. Bacterial endocarditis can be very fatal, so I was so scared for Matt. I really hoped that he did not have an infection. The doctors ran their blood cultures and echocardiograms and determined that he did not have endocarditis!  This was great news! The clot in his leg was treated with heparin, and he was released.

A week or so later I received a call from Matt’s sister. Matt talked about our friendship with her and she got my number from his email. She told me, “Matt passed away.”

Though Matt did not have an infection, he was having chronic clotting issues, and a clot dislodged from his heart, and went to his brain. I was driving when I found out. Alone in my car, I cried and screamed.

Matt’s death hit me hard because he was my peer. I saw myself in him, and I saw myself in his death. “That’s me,” I thought to myself.

This journey has brought me many new friends. Through my blogging, I have met others who have been through, or are going through valve surgery. We share a common bond, and through the internet we connect and share our experiences with each other. It is difficult to talk about our journeys with family and friends who have not gone though it themselves. Even though they empathize and care, they do not fully understand the emotional and physical baggage that comes with heart surgery.

I am so thankful to have met Matt and shared this experience with him. Like me, all he wanted was to recover, and get back to the sports he loved. He was a cyclist, a skier, and a great man. I wish we could share a beer and ride together again. Here’s to you Matt. Cheers.

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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.

Frustration Creek

It has now been 2 weeks since my 2nd heart surgery. It seems like a blur now. Now, I am home recovering, again. I’m sorry to say, but I need a major attitude adjustment. This is much more difficult than the first time around in some ways, and easier in other ways. I am in less pain this time around, and I feel very mobile. I do not feel very much short of breath compared to surgery #1. Physically, I feel good. My mom and I went on a 4-5 mile walk only days after returning home from the hospital. On the other hand, my doctor has put more restrictions on me. She does not want me to over do it at all during the first 12 weeks, so I need some new hobbies. I’ve been planting succulents.

Worst of all, this time I have to give myself hefty doses of antibiotics through a PICC line in my arm. I have to do this 4 times a day. These medications are broad spectrum because they do not know exactly which ‘bug’ caused the bacterial endocarditis (heart infection).

This is actually the hardest part…

I thought that I was done with uncertainty. I thought that after my first surgery, everything would be fixed and I wouldn’t have that dark thundercloud of uncertainty looming over my head any longer. People who get bacterial endocarditis once are more at risk at getting it again. Now I have this to worry about. Also, the fact that we don’t know which bacterium caused it, means that I don’t know how to prevent it. It probably came from my mouth though, because I had a week or so of bad bleeding gums, which is a common entry point for mouth bacteria that can cause Bacterial Endocarditis. So now I practice immaculate oral hygiene.

Sorry about all of this ‘woe-is-me’ crap. I need to get it out of my system. I feel more confused than ever. I feel like I’ve been kicked in the face by a donkey, and I’m sitting on the ground wondering what the hell happened. I thought I was home free, but now I’m lost without a map, alone.

The good news: I’m not dead. I’m trying SO HARD to remind myself of that. WHY the hell do I need to remind myself of this fact?!

I mean, I was literally days (or weeks) from death. This is something to be thankful for.

I’m trying.

owchie

owchie