Tag Archives: avr

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!

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.

10 week Post-op Update

Just a quick update & status report. I met with my cardiologist several weeks ago for the last time. With my new job come new insurance and no more Kaiser. I’ll be meeting my new cardiologist from Loma Linda University Hospital this friday. I spoke with Larry Creswell M.D. of the Athlete’s Heart Blog. He was kind enough to speak with me about my situation, which I really appreciated. He is a cardiac surgeon who spends a great deal of time thinking about athletes with heart problems. He gave me some good insight which will help steer my conversations with my new cardiologist.

I have been riding my bike indoors on my indoor trainer. I have been keeping my heart rate under 120BPM with no problem. The metoprolol helps with that. It’s not too bad, i just drag the rig into the living room and watch an episode of Dexter while I pedal away.

We hiked out into the desert to watch the meteor shower the other day. The shower turned up pretty dry, but it was nice to camp. I even carried a pack for a half mile with no problems. I even can lift my girlfriend again with no problems. The slow march continues.

indoor setup

indoor setup

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

Only a Minor Setback

I was going to title this post, WHAT A GODAMN MOTHER F@CKING HUGE SETBACK,  but then my my mother happened to lean over to me and say, “dear, this is just a minor setback. You’ll be okay.” I knew she was probably right. So here is how it all went down: Last week I was feeling shortness of breath, and after worrying about it, and 2 ER trips, and finally meeting with my primary cardiologist and an echocardiogram, it was determined that… wait for it… my mechanical valve was starting to detach from the heart. dang. And i thought i was all strong and good to go. This is usually caused by an infection, but i was not showing any signs of infection. So I was to have emergency surgery the next day (Saturday). No time to mentally prepare. no Blogging. Just go and do it so you don’t die. They wheeled me in Saturday morning. The next thing I can remember is Monday. The time in between is a haze of drugs. Apparently I was a mad man on anesthetics and narcotics, fighting doctors and nurses as they tried to take out my breathing tube. NOT as smooth as the first surgery. Monday sucked as I was uncomfortable in the cardiac ward I was at. Overnight was bad too. I woke up in the middle of the night trying to escape and my Nurse Phil had to remind me where i was. I had no clue. Today was better. Today we moved to the ICSU (intermediate cardiac surgery unit), which is much more comfy. My current nurse Yu-Ni is the best nurse Ive ever seen. So here I am. Square one. The rehab phase begins again. It is a bummer, but it’s gotta be done. Wish me luck, ok?

ready. again.

ready. again.

Another long road.

Another long road.