508-Fanatic Posted January 21, 2019 Report Share Posted January 21, 2019 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 3 Link to comment Share on other sites More sharing options...
indywatchguy Posted January 21, 2019 Report Share Posted January 21, 2019 Get well soon my friend! Thanks for sharing and stay encouraged!Sent from my iPad using Tapatalk 1 Link to comment Share on other sites More sharing options...
Legend Posted January 21, 2019 Report Share Posted January 21, 2019 Thank you for sharing and I hope you get well soon. Take it easy meanwhile and don't stress yourself out. You are right.. stress and anger can be silent and slow killers. 1 Link to comment Share on other sites More sharing options...
hologramet Posted January 21, 2019 Report Share Posted January 21, 2019 Oh my! I wish you the quickest recovery, and... Compared to a lot of other valvular issues, this one is sorted out pretty quickly! Take care! /one who has had his battle with "unfair" genetics 1 Link to comment Share on other sites More sharing options...
StormTooper4 Posted January 21, 2019 Report Share Posted January 21, 2019 Good advice. Take care 1 Link to comment Share on other sites More sharing options...
Sogeha Posted January 21, 2019 Report Share Posted January 21, 2019 I’m gutted to read this my friend. I wish you a full recovery and many more years with us 1 Link to comment Share on other sites More sharing options...
bigw Posted January 21, 2019 Report Share Posted January 21, 2019 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 1 Link to comment Share on other sites More sharing options...
rdigate Posted January 21, 2019 Report Share Posted January 21, 2019 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. Sent from my iPhone using Tapatalk Pro 2 Link to comment Share on other sites More sharing options...
kernow Posted January 21, 2019 Report Share Posted January 21, 2019 Sorry to hear the bad news. Hoping all goes well with your treatment and that you’re back to fully fit in no time. 1 Link to comment Share on other sites More sharing options...
horologist Posted January 22, 2019 Report Share Posted January 22, 2019 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! 2 Link to comment Share on other sites More sharing options...
508-Fanatic Posted January 23, 2019 Author Report Share Posted January 23, 2019 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! 1 Link to comment Share on other sites More sharing options...
Timelord Posted January 23, 2019 Report Share Posted January 23, 2019 (edited) 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! Edited January 23, 2019 by Timelord Spelling error! Link to comment Share on other sites More sharing options...
ant1 Posted February 15, 2019 Report Share Posted February 15, 2019 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.Sent from my iPhone using Tapatalk Link to comment Share on other sites More sharing options...
508-Fanatic Posted February 15, 2019 Author Report Share Posted February 15, 2019 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. 1 Link to comment Share on other sites More sharing options...
Sub Chipotle Posted February 15, 2019 Report Share Posted February 15, 2019 It is unfortunate news to hear that you are not well. We do not know each but I want to wish you the best in your recuperation. I think most important is frame of mind, I believe you have the right approach "enjoy living!" All the best and see you around in the forum. Link to comment Share on other sites More sharing options...
Sogeha Posted February 15, 2019 Report Share Posted February 15, 2019 Thanks for the update brother, you have my very best wishes as always Link to comment Share on other sites More sharing options...
pcardoza Posted February 15, 2019 Report Share Posted February 15, 2019 Wishing you a positive outcome from a fellow Masshole! Link to comment Share on other sites More sharing options...
hologramet Posted February 15, 2019 Report Share Posted February 15, 2019 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?Skickat från min iPhone med Tapatalk Link to comment Share on other sites More sharing options...
508-Fanatic Posted February 15, 2019 Author Report Share Posted February 15, 2019 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? Skickat från min iPhone med Tapatalk 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! ❤️ Link to comment Share on other sites More sharing options...
508-Fanatic Posted March 24, 2019 Author Report Share Posted March 24, 2019 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. Link to comment Share on other sites More sharing options...
kernow Posted March 24, 2019 Report Share Posted March 24, 2019 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. Link to comment Share on other sites More sharing options...
Bears Bob Posted March 24, 2019 Report Share Posted March 24, 2019 I have not been here long but we are all Family. Love and Positivity will help you through and it sounds like you have both in spades. So take care and get well. Link to comment Share on other sites More sharing options...
Mike on a bike Posted March 25, 2019 Report Share Posted March 25, 2019 On 3/24/2019 at 4:15 PM, Bears Bob said: I have not been here long but we are all Family. Love and Positivity will help you through and it sounds like you have both in spades. So take care and get well. Well said! 1 Link to comment Share on other sites More sharing options...
hologramet Posted April 14, 2019 Report Share Posted April 14, 2019 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! Any updates?Skickat från min iPhone med Tapatalk Link to comment Share on other sites More sharing options...
panerai153 Posted April 16, 2019 Report Share Posted April 16, 2019 Also wondering how 508 is doing. Hope that you are on the mend sir.Sent from my iPad using Tapatalk Link to comment Share on other sites More sharing options...
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