I Have Severe Heart Disease and will Need Open Heart Surgery Soon
Intro
I cannot believe this is happening but I will be undergoing open heart surgery
soon(ish) to address severe heart disease that I have. This whole update
here is to basically vent how frustrating this is and how this came out of no
where with no symptoms for me. I thought I was a VERY healthy individual,
I guess not.
Why cant I believe this is happening to me? Because I have been a health nut basically for the past decade with no symptoms or diagnosis of any heart trouble. I have been eating mostly organic produce and a heart healthy diet and lifestyle for the past 10 years now. I do an hour of research almost every day to see how to live healthier and I implement the strategies. Everyone else around me eats nothing but junk food and smokes, yet their hearts are all fine. But me, the one who tries real hard to avoid things like heart disease has it and will be undergoing open heart surgery soon to address it. There is a chance of death or complications with the surgery, so I may not be here much longer. This should be an eye opener to you all out there that heart disease can happen to anyone without any warning signs even if you think and feel that you are very healthy (like myself).
What is my condition?
I have severe aortic stenosis and was born with a bicuspid aortic valve. I
had rheumatic fever when I was 12, which has a high probability of scarring the
aortic valve. Scarred valves are problematic because they becomes less
self repairable. This causes more rapid calcification to happen, which
will make the valve narrow much faster causing severe aortic stenosis to happen
(very narrowing of the valve, thus not letting much blood flow through the body), then the
need to replace the valve with a prosthetic heart valve happens. So it
looks like I have a scarred bicuspid aortic valve. That is a very bad
combination to have. Not even an extrememly healthy diet can save you from
something like this. Through out my life I always known I had a heart
murmur (which is always a symptom of having a bicuspid aortic valve) but was
never actually diagnosed with having a bicuspid aortic valve until I was 37
years old (2017).
Bicuspid aortic valve?
98% of the population are born with a Tricuspid aortic valve, which is a normal
heart valve that has a much wider opening to let blood flow through the body
freely. 2% of the population are randomly born with a Bicuspid aortic
valve which has a much more narrow opening from the start and lets much less
blood through by default. All bicuspid aortic valves have a heart murmur
(detected with a stethoscope). Genetics from mother and father play a big part
in whether someone has a bicuspid aortic valve. If your parents or any
other relatives have a bicuspid aortic valve in the family then you might have
it as well.
If you have a heart murmur then you might have a bicuspid aortic valve. Sometimes bicuspid aortic valves can be detected with an echocardiogram analyzed by an experienced cardiologist. I had 3 echo tests done before actually being diagnosed with a bicuspid aortic valve, one at age 2, age 17, and age 26. None of those echo tests found a bicuspid aortic valve. The first one that showed I had a bicuspid aortic valve was at the age of 37. And at the same time being diagnosed with severe aortic stenosis. I was devastated to hear the news, simply because it came out of no where and I've had zero symptoms of even knowing I had something like that. When I was first diagnosed I did some quick research into it immediately and found out it was simply a serous situation I have. Being a health nut that I have been, I was extremely confused, depressed, angry, and sad about the situation. One of the soul reasons for doing my "health" stuff I do in the first place is to avoid things like open heart surgery or any other disease or cancers. So this all made me really depressed. The most depressed I have ever been in my whole life.
Make sure you know you have a bicuspid aortic valve or not to take extra care of your heart longer. Arnold Schwarzenegger was born with a bicuspid aortic valve and he has already had numerous open heart surgeries to replaced his aortic valve. Arnold smoked a lot though, which probably contributed to his need of a valve replacement early on. Most people who have a bicuspid aortic valve usually need to get it replaced sometime during mid-life. Some people can live their wholes lives with a bicuspid aortic valve but usually only if you take really good care of your heart your whole life: which means always eat a heart healthy diet (no junk food), continuous aerobic exercise, no drugs, no smoking and no stress. And avoid getting scars on your valve from things like rheumatic fever (which I had at age 12).
Valve Replacement Options Are Poor Right Now :(
Patients have the choice between a mechanical or biological tissue valve
replacement.
They both have pros and cons, but the sad part is, none of our current valve
replacements options looks appealing. Still, I am glad there is a "surgery
option" for this, as it is saving people's life, but only for a shorter period
of time and usually with lifelong side effects (depending on which valve choice
you go for).
Mechanical heart valves tend to last longer than biological valves (20-35 years vs 5-15 years on average) but require lifelong use of blood thinning medication which can cause serious side effects. Mechanical valves also makes a noticeable "clicking" noise with every heart beat, which has gave PTSD to many patients who received a mechanical valve. Biological valves (which are usually made from either a pig or cow) are quiet and they require no need for life long blood thinning medication. But the problem with biological valves is they tend to calcify much faster and becomes narrow again, thus the need for another open heart surgery to replace the defective heart valve. The more open heart surgeries one gets, the overall lowered life expectancy that person becomes. Currently, most doctors recommend mechanical valves for patients under 55.
Promising New Biological Heart Valve in Trial
There is a promising new biological aortic heart valve in trial (since 2012)
and then FDA approved in 2017, called the
INSPIRIS RESILIA
Aortic Valve, which has been implemented on like 50,000 patents
over a 8 year span. The new valve promises to last a bit longer than previous
biological valves by calcifying at a slower rate. It has shown great success so far in its
8 year
lifespan. But remember previous biological valves only last 5 to 15 years.
So we dont know for sure whether the INSPIRIS RESILIA Aortic Valve can withstand
the test of time, but so far its looking very positive. I am actually
highly considering this valve. I have been an anti pharmaceutical pill
user my whole life. I really do not want to take blood thinning medication
the rest of my life with the use of a mechanical heart valve, or hear noises
with every heart beat associated with it..
Another reason why I am considering a biological valve over a mechanical valve is that I am already eating an anti-calcification diet. I would think eating this way could make a biological heart valve last a lot longer than most people. Combine that with INSPIRIS RESILIA Aortic Valve's extra anti-calcification benefits, I could make it last a very long time. But I am still not 100% convinced which valve choice im going to get yet. A new valve only in use for 8 years is still pretty risky to get right now. Prosthetic heart valve replacement options are advancing slowly. I have a feeling like 30-50 years from now prosthetic heart valve choices will be much better by then and people wont be as stressed out about getting a replacement as much as I am right now.
I am living on the edge
My doctor says I am at high alert for heart attacks, strokes, or sudden death if
not careful enough with everything that I currently do until valve replacement
happens. I am trying very hard to continue to live a healthy lifestyle to
hold off on surgery as long as possible. My doc said he was impressed with
how far I am going living with my condition. Most people would have for
sure needed the surgery by now. Only my very healthy diet and lifestyle
are allowing me to live with my diseased valve for as long as I can.
My Symptoms
So I first started noticing symptoms in 2018, a year after being diagnosed with
heart disease. Symptoms only happen during my cardiovascular workouts.
They are basically short of breath, chest pain and dizzyness from lack of O2 to
the brain. I notice symptoms happening after cheating on my diet. If
I eat a slice of pizza or eat some junk food I will get symptoms during my
cardio workouts the next day. If I eat clean organic produce, symptoms
simply do not happen. So I have made a commitment to simply never cheat on
my diet or else I could face sudden death. A couple slices of pizza could
be the death of me right now. A cheeseburger could kill me right now.
When is my Surgery?
My doc told me in 2017 that I have 1-5 years before surgery. It is 2020
now so I am right in the middle of that. My doc says he highly considers
just getting it now to be on the safe side. But it is still ultimately up
to me at this point. I made the decision to hold off for now but continue
to live a healthy lifestyle without doing anything that can stress my heart out.
I would love to see how the new INSPIRIS RESILIA Aortic Valve can last. If
I can hold off on surgery for another 5 years or more that would give me a much
better indication on how well the INSPIRIS RESILIA Aortic Valve works over time.
That is my goal right now, to hold off as long as possible until prosthetic
heart valves improve. But ideally I predict I will need the replacement
within a few years :(
thanks for reading my rant
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