Tag Archives: Bicuspid aortic valve

Week 1

photo (3)

It has been exactly one week since the day of my surgery! I have to be honest I am surprised at my progress. My parents have been with me this whole time, making this process way easier than if I were alone. A week in review:

Monday 11/25/13    

Surgery Day. Surgery was shorter than expected. He replaced my aortic valve with an On-X mechanical valve (25mm) as planned. The portion of aneurysmal ascending aorta was shorter than expected, so it was repaired and reinforced, without any involvement of a synthetic tube. Surgery was 7am and I was awake by 2pm. The throat tube was out by the time I awoke. I was kept in the ICU overnight.

Tuesday

The neck tubes and catheter were removed the pain involved with the removal of these was a bit unpleasant, but nothing to lose sleep over. I was moved to the Cardiac Surgical Care Unit in the morning. I took my first short walk (1 lap around the unit). I sat up in a chair.

Wednesday

Though I hoped to have my chest tube removed, the doctors wanted to give it one more day to finish draining the fluid in my chest cavity. More walking. slight fever at night. difficulty sleeping. Neck/back/shoulder pain getting worse. Resting heart rate 95-105

Thursday

Nurse Practitioner removed chest tubes. Very liberating. Multiple laps around unit, several times a day.

Friday

Discharge day. Nurse Practitioner removed pacemaker wires Pacemaker is left on heart in case of problems). This is another eerie removal. You can actually kinda feel a tug inside of you, which is the wires dislodging from the heart itself. All other IV lines, EKG sensors & transmitter box removed. Met with doctor & NP one more time. Met with pharmacist about anticoagulant treatment. Heart shaped cough pillow received. Wheeled to parking lot to go home! Home by 4pm. Went for two .4 mile walks. Still had trouble sleeping. Back/neck/shoulder pain causing too much discomfort.

Saturday

More downtown walking. walked to coffee shop and ran into some surprised friends. Several .5 mile walks. Natalie came over and we went out to get a small potted christmas tree. She carried it. Back pain still an issue. sleeping still difficult, but slightly better.

Sunday

Went for a 2 mile walk! Later, walked again to a downtown art event, with some meandering around, probably .75 miles. Back pain getting better, but still sore. Went out to eat, but had no appetite. Got first full night of sleep! Zzzzzz…

Monday

A week has passed! A full night’s rest goes a long way. Goals seem attainable. Progress is obvious. Feeling better each day.

To another week…

 

T-minus 6 days

Less than a week to go. My feelings: Calm, excited, nervous, anxious, ready. The butterflies have officially arrived to the stomach. I keep it together most of the time, but certain individuals have to deal with my occasional erratic behavior. Thank god for her support.

I have some goals for next year. I of course want to get back into climbing and cycling as soon as possible. Allot of my goals have to do with my rehab plan, but Loftier goals are necessary too. I have been invited by a fellow heart surgery recipient from northern california to do the 2014 Levi’s GranFondo race. I’m excited for this one. It looks pretty intense! Other goals include: skydiving, more highlining (I tried highlining for the first time 2 weekends ago!), climbing some big walls and a few select classic boulder problems in Joshua Tree (Caveman, Pigpen, White Rasta, Gunsmoke). Last weekend we went out to Joshua Tree and had a fun day of bouldering. I got on Caveman (V-7/8) and actually felt like it could go.

Caveman

Caveman

Roof Romp V4

Roof Romp V4

Photos by Jackie Trejo

First Pre-Op

Meeting with Cardiologist 11/5

Meeting with Cardiac Surgeon 11/12

I met with my surgeon and Nurse Practitioner yesterday at Kaiser Sunset in LA. I was a little disturbed when the surgeon had me mixed up with someone else, but he quickly recovered and found my file. It is understandable; CT scans kinda all look the same. My cardiologist previously told me that I would need my aortic root replaced along with the valve and aorta. My surgeon said the root is fine, which also means that my coronary arteries do not need to be reconnected. That means a less complicated surgery and about a half hour less time under the knife. So what that means is I will be receiving a valve replacement with the On-X mechanical valve, the aortic root will stay intact (which lies between the valve and ascending aorta), and have my ascending aortic aneurysm replaced with a dacron tube. It will be a combination of the two images below.

ascending-aortic-aneurysmindia-surgery-pediatric-aortic-valve-replacement-repair3

The Nurse Practitioner asked me lots of health history questions. She also gave me these heavy duty antibacterial wipes that I have to wipe myself with the night before the surgery. Then they showed me an outdated video. My surgeon was in it and looked at least 10 years younger.

They also swabbed my nose to check for Staph, and took blood to determine my blood type. I got the results already; I’m A positive. 

In other news, since my surgery is coming up so soon, I’ve kinda relaxed in my exercise limitations. I’ve realized that I have been living with the aneurysm for a couple years. At the climbing gym, I climbed without holding back, and it felt great! I know the hangboard workouts that I’ve been doing have really been helpful because I felt like i could just grip for days. I was practically climbing at previous levels despite holding back for the past few months. Makes me optimistic about my recovery!

Waiting Room Rules

“Some people see the glass half full. Others see it half empty. I see a glass that’s twice as big as it needs to be.”― George Carlin

I have learned from my peers over at valvereplacement.org that the time (days, weeks, months, even years) leading up to one’s heart surgery is appropriately nicknamed ‘The Waiting Room’. I still have a month and a half to go, but I have learned quite a bit about coping during this difficult period. I decided to make a Waiting Room rule list. Perhaps this list can help some future valve recipient.

‘Waiting Room’ Rules

  1. It is okay to be nervous, but do not let it consume you. Stay busy.
  2. Stay busy.
  3. Bring your loved ones, and trust that they will stay with you.
  4. Trust that your loved ones will be there (and still love you) when you get out of surgery.
  5. Exercise while waiting. Define restrictions and limitations and stay as active as possible.
  6. Daily responsibilities may be forgotten due to stress. Create daily checklists.
  7. Reduce stress with any or all of the following strategies: Exercise, Yoga, meditation, reading, attending social gatherings, traveling, blogging, talking, hugging, starting new hobbies, laughing, breathing.
  8. No yelling.
  9. Crying is okay.
  10. Do your research. Become as knowledgeable about your condition/ surgery/ recovery as your doctor.
  11. Stay positive by following this procedure: If life seems bad, adjust perspective. Repeat if necessary.

*ADDITION: I polled the audience over at valvereplacement.org to get feedback about this list. Other ‘Valvers’ chimed in with additions and constructive criticisms to my list. See that thread here: http://www.valvereplacement.org/forums/showthread.php?42161-Waiting-Room-Rule-List

Small Victories: Hangboard

What is each day but a series of conflicts between the right way and the easy way?

Rock Climbing has taken a backseat these days. The spikes in heart rate and blood pressure during climbing are just too huge to feel comfortable with in my condition. This is a bummer because all I want to do is climb. I’ve realized though, that there is strength training that will maintain, if not improve certain elements in my climbing. I’ve been utilizing my hangboard!

Metolius SImulator

Metolius Simulator

I took a simple workout plan from Steph Davis’ climbing blog. I decided on this one because it does not involve any pull-ups, just hanging. In the workout below, a ‘grip’ refers to a ‘hold’ on the hangboard. I use a Metolius Fingerboard, and did a total of 4 grips. If you plan on doing a hangboard workout, don’t forget to warm up and stretch those digits. Read the entire workout descriptions on Steph’s blog and the Metolius fingerboard workout page, linked above.

(Steph’s) Typical workout:
3 sets for each grip
set one = 7 sec hang 3 sec rest x 7 reps
2 min rest
set two = 7 sec hang 3 sec rest x 6 reps
2min rest
set three = 7 sec hang 3 sec rest x 5 reps
2 min rest between grips

Doing this type of workout will do wonders for my grip strength while I take a sabbatical from actual climbing. The best news is that while doing this workout, I took my blood pressure in between sets, and found that only a mild increase in BP was involved. I can do this type of workout frequently without risk of dissection associated with dynamic strength training.

just keep hanging, just keep hanging…

Slackline Confessional

A couple posts ago, I mentioned an email correspondence I had with Dr. Lawrence Creswell, a cardiac surgeon who blogs about athletes’ hearts, and athletes with heart problems. His recent post, More on Athletes and Bicuspid Aortic Valve (BAV), dives very deep into the various issues that someone like me thinks about and needs to make decisions about. It is a very thorough post. Dr. Creswell’s blogging helps heart patients everywhere, not just the ones that he gets paid to treat. He touches many hearts (beyond the hearts he touches). See what I did there? That was a heart surgeon joke. In all seriousness, this is what the internet is for. Dr. Creswell ends his post with some points that he also made in an email to me:

“Athletes will ask when they can return to their sports….

…Unanswered questions include:  Can a bioprosthetic valve wear out more quickly than expected?  Does the (unreplaced) aorta enlarge over time?  If so, how quickly?  Do medications like beta-blockers limit any potential harm?  We just don’t know.

Yet I’m personally aware of a good number of athletes who’ve returned to endurance sport after operations of various sorts for BAV, presumably after discussion with their doctors.  Athletes should have detailed discussion with their doctors about any prudent limitations to exercise after operation and settle on a mutually agreeable plan.”

I think Dr. Creswell is saying two things here. On one hand, he feels that heart valve replacement patients should not do certain sports, including endurance cycling and rock climbing, and on the other hand, many patients are going to do it any way, as long as their docs give them the proper low down. I think most athletes are willing to take that risk. I understand that there isn’t enough data out there for some doctors to completely release their heart valve patients into the world of extreme and endurance sports. The thing is, and as Dr. Creswell reluctantly acknowledged, some of us are completely willing to be the lab rats. Quality of life includes doing the things one loves to do, not necessarily living to be 105.

Inspired by Dr. Creswell’s post, and after some reflection, I decided to do my first video Blog (Vlog) while slacklining. Thanks for watching! I call it ‘Slackline Confessional’.

Fun little side note, moments after I posted this video, I hopped back on my bike and almost got clobbered, sending me over my handlebars to avoid a collision with a truck backing out of a driveway. Moments of clarity are often quickly replaced with the harsh reality that is life!

Ascending Aortic Dilatation Associated With Bicuspid Aortic Valve

aortic dissection

aortic dissection

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

Hands to Heart Center

If you live in the Redlands, California area, please check out Inner Evolution Yoga.

Phil and I were originally climbing buddies  before he opened his own studio. His studio donates to local causes, and has weekly community donation yoga classes, where anyone can come and practice yoga for whatever they can afford. Inner Evolution is about community.

The Yogis call it your ‘yoga practice’, because that’s all it is. It’s like life, something that you must practice, and get better at. Some days are better than others. There are many physiological aspects that Yoga is assisting me with, such as breathing and core strength. Yoga also reminds me that it is okay to let some things go. If it is going to injure you, then let it go. Come back to it next time. Patience and persistence. There are many analogies.

And on that note, something completely different (not really). When I watched the following Nike commercial, I became overwhelmed with emotion. I usually don’t pay much attention to commercials, but I get this one. It’s like Dr. Seuss’ “Oh The Places You’ll Go” for extreme & endurance athletes.

“You’re in a fight against an opponent you cant see but oh, you can feel em’ on your heels cant you? Feel em’ breathing down your neck. Know what that is? THAT’S YOU.”

go get em.

Why I Chose Mechanical Over Tissue

It was recently suggested to me that I provide an explanation of why I decided to receive a mechanical valve, rather than a tissue valve to replace my diseased aortic valve. This post will  be dedicated to why I made this (very personal) choice.

ross procedure

ross procedure

There are generally two options for someone in my situation; Replace the Bicuspid Aortic Valve with either a mechanical valve, or a tissue valve. Tissue valves are usually from a cow or a pig. They can also be homograft, which comes from a human cadaver (check off organ donor on your driver’s license y’all!). There is also a crazy option called the Ross Procedure where the surgeon takes the patient’s pulmonary valve, puts it in the aortic position, and takes a pulmonary valve from a cadaver, and puts that in the pulmonary position. I mean, wow.

Mechanical Valve Pros & Cons

  • Mechanical valves typically last for life. Patients who expect to live for more than 15 more years are often encouraged to get mechanical valves. This means that one should expect only one open heart surgery.
  • The main drawback of mechanical valves has been their requirement for warfarin anticoagulation therapy, with its accompanying risk of bleeding. Bleeding events are rare but are potentially fatal. With properly managed anticoagulation therapy, rates are low for both bleeding and clotting. Without anticoagulation therapy, a blood clot may form on the new valve, inevitably causing a fatal stroke.

best-heart-valve-replacement-1

Tissue Valve Pros & Cons

  • The lifetime of a tissue valve is typically 10 to 15 years, (possibly) less in younger patients. Tissue valves may also last longer.
  • Additional valve replacements places additional chances of risk that inherently goes along with open heart surgery.
  • The primary advantage of tissue valves is their lower requirement for anticoagulation therapy, which reduces the incidence of bleeding. However, other heart issues may require patients with tissue valves to go on anticoagulation therapy.

My Choice: The On-X Mechanical Valve.

Perhaps it is the cyclist and rock climber in my that thought that ‘carbon fiber with titanium housing’ sounded cool. My surgeon did not specify whether or not he thought this brand was better than others.  The St. Jude’s Valve is the most commonly used. I chose mechanical for several reasons:

  • If I can help it, I only want one heart surgery in my lifetime. Getting tissue valves would mean getting 2 or 3 replacement surgeries in my lifetime, especially since I am young.
  • Though doctors recommend against competitive or extreme sports, the reason for this is for the potential of injury, thus causing major bleeding events due to the anticoagulation therapy. I feel that I can do my sports of choice, with an understanding of the risks, and taking necessary precautions.
  • After recovery, the mechanical valve will probably perform better than the current diseased valve.
  • An exciting study involving On-X Valves and lower anticoagulation drug doses may result in future recommendations of lower doses of the anticoagulant drug Coumadin or Warfarin. Lower doses would lower the excessive bleeding episode risks.
  • Because mechanical valves typically last for life, I can get the replacement surgery now, rather than waiting for the last possible moment, which is often done with tissue valves (to reduce the total number of heart surgeries in one’s lifetime). This is a benefit since I also need an ascending aortic aneurysm fixed. The aneurysm dissecting or rupturing actually poses my greatest current risk.
On-X Mechanical Valves

On-X Mechanical Valves

This choice is a personal one. Some athletes choose tissue valves because they do not want to worry about anticoagulant drugs affecting their sports of choice. It is is important to remember however, that sometimes tissue valves still require these drugs, depending on the circumstances. To some athletes, multiple surgeries are an acceptable consequence to avoiding drugs for 6-15 years. For me, I have learned from my doctors and other mechanical valve ownersWomen who plan on having children will also choose a tissue valve, because anticoagulation drugs cause damage to the fetus.

The best thing to do is to weigh the pros and cons, think about what you want out of your own life, make a decision, and then make a game plan that will lead you towards a healthy, active, productive life.

I’m kind of annoyed that I cannot embed this here. Welp, here is the link.

Tell me how it is, Doc.

“You’re heart is abnormally big,” Dr. Yun said,  “and it leaks allot.”

“Mmhm,” I say, waiting for the punchline.

Dr. Yun paused for five seconds, perhaps to highlight the importance of his next statement, “Ultimately, You’re heart is going to fail.”

“When it’s going to happen, we do not know.”

Until this moment, in my everyday life, my attitude toward this whole ordeal was that of desperate denial. Finally, upon meeting with my new surgeon was it clear to my thick skull that I would require open heart surgery on my 30th year. Even toward the end of the 45 minute long meeting, I still tried to buy myself some more time.

“Umm, I guess I’m still confused about what to do,” I lied.

The surgeon said, “Why are you still confused? You wanted options and I gave you options.”

We chuckled and I knew what he meant, but what I wanted was a direct command from him. I asked him if he were in my shoes, when would he opt for surgery.

“Soon,” He said, plain and simple.

So there it was. He explained that because I was leaning toward a mechanical valve, there was no reason to wait for the operation. Mechanical valves last your whole life, so re-operation at any point would be a minimal risk. This is why I chose a mechanical valve, because I did not like the idea of getting a re-operation on a tissue valve in 9-13 years.

We look up to doctors as authorities on the human body, however they do not control your body. You are the master of your own domain, and you must make these difficult decisions yourself. I knew what I had to do. I scheduled my operation.

Prompt: http://dailypost.wordpress.com/2013/09/16/writing-challenge-dialogue/