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A Failure of the Heart


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Dear Friends and Members,

 

I've been diagnosed with heart-failure. I have a bad aortic valve, bicuspid with aortic regurgitation. This has caused my ejection fraction in my left ventricle to dip below 30% and the pounding I felt in my chest a week prior to Christmas was the right side of my heart going into overload trying to keep me upright. I've been taking it easy and an open-heart surgery to replace the bad valve with once sourced from what I imagine is a lovely little porcine is soon to be underway.

I'm a 38 year old male, non-obese with normal cholesterol, blood-pressure, and in otherwise great health.  This is apparently a genetic connective tissue disorder gone off the rails.

 

If you feel something... say something, you fellows especially. Don't be stubborn or stoic - it can kill you.

 

Wishing you all good health and a wonderful 2019. I'll be on here and there during my recovery. I'll keep the morphine (or whatever they give me) dazzled trolling to a dull roar 😉 

 

Fondly,

 

A

 

 

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I had triple bypass (GABG x 3) at 56 after having a heart attack in my driveway.  I exercised a lot, ate well, and lead a healthy life.  Can't avoid crappy genetics.  My yearly physicals were always good.  Sometimes it happens. Not the end of the world

 

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I had the same surgery for the same reason 7 years ago. Good news is that after the operation you will feel like you are 20 again. It is amazing how you get accustomed to functioning at 30%. Porcine is the right choice. The last thing you want to be doing is taking coumadin.


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Your situation seems identical to my younger brother who is about your age too!

 

with today's technology and advancing treatments, the prognosis is quite good!  My late father had a low ejection rate of 17% and passed away at 87!  

 

Be positive and  try to remain as calm as possible that once this is over you will feel great again!!  I am sure other members of the forum are with you in this trialling time!   My best wishes and Godspeed!

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Thank you all so much, and hearing positive stories makes me feel very encouraged. Truly a very special community we have here.

 

If anyone wants to send Rolex's instead of flowers DM for my address. 😜 kidding aside, thank you all again.

 

I look forward to feeling 110% and starting my next build!

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Have come late here!

 

my very best wishes in your successful outcome with whatever treatment option you go with!  

 

As others have said better than what I could ever say,  you will see this as a long distant memory once it is all over and you will be doing better and  better with each day that passes!  As I said to my late mother before she had open heart surgery " may the force be with you" and she lived for  over 25 years more, passing away at 76 from dementia!

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  • 4 weeks later...

dang, just stumbled across this.

to echo the others, this surgery now is about as “routine” as it can be for a good CV surgeon and though not without risks, people in your overall state of health tend to have excellent results, both in the short and long term. mini AVRs really have been game changing.

i will be sending my prayers your way.


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Thank you all so much for your well wishes! Here's an update as of 2/14 (because Valentines = Heart Day so why not) I prepared for friends and family:

 

Out of Left Field; My Heart and Prognosis as of Now

 

Experts in their field at Massachusetts General Hospital have evaluated me over the past week or so, as well as top quality cardiologists in Worcester too. On December 18th, 2018 I went to the emergency room with chest pains. I was told that a heart-attack wasn’t happening, yay! But there was no immediate explanation for why my heart felt like it was going between squeezing and thrashing about in my rib-cage. So, as I am generally fond of living, I pursued a diagnosis.
 

I am now diagnosed with acute heart-failure and will be seen by both doctors here in Worcester, and by the exemplary Heart-Failure Team at MGH in Boston. Now, as you can imagine this is quite a surprise! I am 38 years young and an otherwise very healthy and happy man. I do not present with any hint of coronary artery disease, no history of smoking or much drinking (nothing that would constitute alcohol abuse) and literally zero illicit drug use. I’m a married man, father of two children, professional with a relatively upper-middle-class lifestyle and I’ve had access to presumably good-quality-medical care my entire life. The predicament I find myself in now is quite an interesting one in nearly every facet.
 

So, How Did I Get Here?

I am told that little is really known about how acute cardiomyopathy comes about. It can be a viral infection that took its toll while I powered through a cold… it could have been genetic, congenital or just sheer bad luck. The past, the how, is not really what I am concerned with. The present, the future is what gives me great angst.


What Now?

Well… that’s the tricky part of my diagnosis. There’s no guaranteed outcome. I have been prescribed several medications that are designed to protect the heart, and help it heal and grow stronger. I’ll be on a heart-strengthening diet and participating in cardio-rehab (i.e.: walking and light exercise) but not pushing it. The damage to my heart is severe. My ejection fraction for both ventricles is in the high 20’s low 30’s and there is a low modicum of risk in sudden cardiac death.


MGH in Boston

I was reviewed at Massachusetts General Hospital by a world-renowned surgeon, Dr. Duke Cameron, formerly Chief of Cardiac Surgery at Johns Hopkins in Baltimore. He was of the mind that a replacement of my bicuspid valve, that was leaking would be a solid stop-gap measure before moving forward with heart-failure care/rehabilitation. I was prepped for surgery and taken into the OR. As a matter of course prior to open-heart surgery and particularly valve replacement surgery some further tests are given. I was given a cardiac catheterization of my right arm, a swan catheterization in my neck, and then a transesophageal echocardiogram of my heart/aorta. They blew my blood pressure up to 180/200 bpm and saw that the aortic regurgitation was not as significant as before, also under stress they saw some mitral valve leakage. They aborted the surgery. Dr. Cameron and his team did not think replacing the valve(s) would give me enough relief or help my heart heal quicker (at any rate) to justify cracking me open. The issue lay elsewhere, inconsistent with previous thoughts.

So now I stand diagnosed with acute cardiomyopathy. Pleasantly enough, I don't have the edema (water) in my legs or lungs. But, sadly my left and right heart chambers/ventricles are basically all but burned out. The Heart Failure Team has prescribed medication they hope to see improve my heart strength within the next 3 months. I am monitored by the MGH heart failure team. That said, if there is no marked improvement in the next 3 months, or any further deterioration they will install a defibrillator in my chest that may provide a life-saving ‘kick-in-the-chest’ that would allow me to get to an ER. As it stands there is a great deal of uncertainty in my prognosis and future.


My best and ultimate course of action is to remain optimistic, eat right, exercise, take my medication, go to my follow-up appointments and cardiac-rehab, and see a positive outcome in the next 3-6 months. I enjoy living, and I certainly do have a lot to live for. Hopefully this helps my heart and I can repair the damage done, if not probably a replacement heart will be necessary at some point.

 

 

 

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Thank you all so much for your well wishes! Here's an update as of 2/14 (because Valentines = Heart Day so why not) I prepared for friends and family:


I've seen plenty of EF's in mid-20's (usually due to atrial fibrillation) rehabilitate themselves back to their habitual state. The body has an amazing tendency to heal "correctly" the younger we are. Your "low" age and confounding "good" factors (family, friends, accquiantces {never tried spelling that word before}) are good. Especially your POV, thus I admire your last paragraph.

Everyone is "always" healthy until they get sick. (NO [censored] Sherlock). What I mean is that few are prepared for the first big disease/episode, no matter it being stroke, accident, heart attack or breast cancer.

They all had 100% perceived health before. You can take their true health with a grain of salt. But always 100%.

The question is always how strong-minded is the individual after. Your heart is exhausted. But it's hasn't scar-healed as in a heart attack. You would have died before that being possible... it stinks, or wait.. Does it?

There's so much positive in your prognosis compared to the classic outcome of acute heart failure (aka myocardial infarction). Yeah your lowest health might be objectively lower, but it's temporary. I remember one guy we had to operate who was at like 10-something and put an aortctic balloon to help his heart out a couple of weeks. Even he was back at >55% EF (which is regular Joe, normal values) 6 months later.

Ask yourself. What is your perceived health?


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4 hours ago, hologramet said:

 


I've seen plenty of EF's in mid-20's (usually due to atrial fibrillation) rehabilitate themselves back to their habitual state. The body has an amazing tendency to heal "correctly" the younger we are. Your "low" age and confounding "good" factors (family, friends, accquiantces {never tried spelling that word before}) are good. Especially your POV, thus I admire your last paragraph.

Everyone is "always" healthy until they get sick. (NO [censored] Sherlock). What I mean is that few are prepared for the first big disease/episode, no matter it being stroke, accident, heart attack or breast cancer.

They all had 100% perceived health before. You can take their true health with a grain of salt. But always 100%.

The question is always how strong-minded is the individual after. Your heart is exhausted. But it's hasn't scar-healed as in a heart attack. You would have died before that being possible... it stinks, or wait.. Does it?

There's so much positive in your prognosis compared to the classic outcome of acute heart failure (aka myocardial infarction). Yeah your lowest health might be objectively lower, but it's temporary. I remember one guy we had to operate who was at like 10-something and put an aortctic balloon to help his heart out a couple of weeks. Even he was back at >55% EF (which is regular Joe, normal values) 6 months later.

Ask yourself. What is your perceived health?


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Perception is reality, I see myself as strong and healthy - and am going about life, and doing what I must do put this right. Thanks for the great post! ❤️ 

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  • 1 month later...

Update ---

 

Been seeing the Heart Failure Team - they're doing their best. Fitted me up with a "LifeVest" which is an outboard defibrillator - basically a really uncomfortable man-bra that is tight and made of cheap materials lol....but if it zaps me back to life then it's all good. Just better not magnetize or f* with any of my watches haha

 

Still need to have tachy or arrythmia or whatever with my heart sorted out - and a defibrillator implanted. Also need to see someone about my f'd up Aorta and all the work to be done there. 

 

Still living and enjoying life, and a very happy guy.

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Glad to hear that things are progressing and that you’ve kept a sense of humour about you. Keeping a positive attitude is half the battle. 

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  • 3 weeks later...

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