Alex
Active member
Are the people you know of fine with the melody valve?
Life Expectancy
- Thread starter Alex
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Yes but they've only had them less than a year. They have been doing them in the UK for close to 10
Alex
Active member
ah the melody valve is so tempting! But the person that would be doing my melody valve implant said she is not sure which is best for me out of the implant or OHS. She said out of almost all her patients I am probably the best candidate for OHS since it seems like it would go well and my body did well with the new valve and OHS last time
robojerry
Member
Hi Alex,
Sorry to hear that you may have to have surgery. I was around your age when I had to have my aortic valve replaced (with a St. Jude's mechanical one) due to a congenital defect. This was around four years ago (I'm 27 now) and at that time I remember feeling excited about the upcoming procedure. Now I'm not saying that it was all fun and games, but with the way my health had been deteriorating and the way I had been feeling physically in the run up to my surgery, I was just happy and relieved to hear the cardiologist say that they were ready to go ahead with the replacement. Anything was better than the way I was feeling on a daily basis, and the way this was making me feel depressed as I couldn't "keep up" with my peers. Luckily my surgery was a "breeze", as anyone will attest to there are some uncomfortable/painful/difficult periods throughout the post-surgery experience, but I think that, by-and-large, for most people these are temporary bumps on the road to recovery.
The reason I'm posting is that, as you will see from my profile, I have been suffering from the same depressing, morbid thoughts about life-expectancy as you have, only mine have come three/four years post-surgery. They hit me during the second year of my PhD, and have really had an impact on my studies to the point that I have fallen behind.
Now I just want to share something that I am just coming to realise myself. Six weeks after the surgery I went to my first anti-coag clinic, and the woman who was to become my wife came with me. Although we got a taxi there we decided to walk home and see how things went; this was probably the best decision of my life and led to one of the best days of my life. It took us about three hours to get home, but this was because we had lunch, sat in the park, looked in shops, etc. Sure I felt tired and a bit weak, but I could feel that I was getting better and the day felt like a massive achievement. Two months later we went to Paris for a few days and had the time of our lives. By nine months post-op I had started a Master's at the University of Manchester, when I finished that I begun a PhD. In the past four-five years my wife and I got married, we went back to Paris for our honeymoon and also travelled on an overnight train to Venice. We've been to Berlin, Verona, and Copenhagen, along with doing countless amazing things with friends and family that would never had happened had I not had the surgery.
To top it all of my wife in now pregnant with our first child, I've got two amazing part-time jobs to help to support us (one is in a book shop, one is teaching undergraduates), we're moving to a new house, and I'm back on track with my studies. In the next year or so I will be a new father and fully expect to have a PhD. Just realised that I might sound like I'm boasting, but I hope you realise that I'm just trying to show how rich and full a life can be had after surgery. I feel quite ashamed of how much I dwelled on life-expectancy and let it effect my studies and general day-to-day life. But now I just try to think that even if I get knocked over by a bus tomorrow (that old-chestnut), my new valve fails, or one of those tragedies that befalls unfortunate folk at the beginning of Six Feet Under strikes me down, at least I've tried my best.
Sorry for going on so long, but my basic point is this; don't worry about how long you'll live, let the doctors worry about your heart, and you worry about doing you best in the course that you have been offered.
Sorry to hear that you may have to have surgery. I was around your age when I had to have my aortic valve replaced (with a St. Jude's mechanical one) due to a congenital defect. This was around four years ago (I'm 27 now) and at that time I remember feeling excited about the upcoming procedure. Now I'm not saying that it was all fun and games, but with the way my health had been deteriorating and the way I had been feeling physically in the run up to my surgery, I was just happy and relieved to hear the cardiologist say that they were ready to go ahead with the replacement. Anything was better than the way I was feeling on a daily basis, and the way this was making me feel depressed as I couldn't "keep up" with my peers. Luckily my surgery was a "breeze", as anyone will attest to there are some uncomfortable/painful/difficult periods throughout the post-surgery experience, but I think that, by-and-large, for most people these are temporary bumps on the road to recovery.
The reason I'm posting is that, as you will see from my profile, I have been suffering from the same depressing, morbid thoughts about life-expectancy as you have, only mine have come three/four years post-surgery. They hit me during the second year of my PhD, and have really had an impact on my studies to the point that I have fallen behind.
Now I just want to share something that I am just coming to realise myself. Six weeks after the surgery I went to my first anti-coag clinic, and the woman who was to become my wife came with me. Although we got a taxi there we decided to walk home and see how things went; this was probably the best decision of my life and led to one of the best days of my life. It took us about three hours to get home, but this was because we had lunch, sat in the park, looked in shops, etc. Sure I felt tired and a bit weak, but I could feel that I was getting better and the day felt like a massive achievement. Two months later we went to Paris for a few days and had the time of our lives. By nine months post-op I had started a Master's at the University of Manchester, when I finished that I begun a PhD. In the past four-five years my wife and I got married, we went back to Paris for our honeymoon and also travelled on an overnight train to Venice. We've been to Berlin, Verona, and Copenhagen, along with doing countless amazing things with friends and family that would never had happened had I not had the surgery.
To top it all of my wife in now pregnant with our first child, I've got two amazing part-time jobs to help to support us (one is in a book shop, one is teaching undergraduates), we're moving to a new house, and I'm back on track with my studies. In the next year or so I will be a new father and fully expect to have a PhD. Just realised that I might sound like I'm boasting, but I hope you realise that I'm just trying to show how rich and full a life can be had after surgery. I feel quite ashamed of how much I dwelled on life-expectancy and let it effect my studies and general day-to-day life. But now I just try to think that even if I get knocked over by a bus tomorrow (that old-chestnut), my new valve fails, or one of those tragedies that befalls unfortunate folk at the beginning of Six Feet Under strikes me down, at least I've tried my best.
Sorry for going on so long, but my basic point is this; don't worry about how long you'll live, let the doctors worry about your heart, and you worry about doing you best in the course that you have been offered.
joy
Well-known member
Hi Alex, Welcome to our site! I had my mitral valve replaced when I was 23. I have Rhuematic Heart Disease. I got a Bovine valve because I had hopes that there would be advancements. There have been some good advancements, to tell the truth. I guess there are a couple of new mechanical valves that you really don't have to be on blood thinners with because they don't split the blood cells or something. Not sure. ANyways, today is my 33rd birthday, my valve will be 10 years old this year, and I still have a few years with it. Don't get me wrong, I can understand your fears, I have some fears of having my second open heart surgery, especially since I will be having two valves replaced. If you need anything, we are all here for you! ANy questions, please don't hesitate to ask!
MarkU
Well-known member
After I was diagnosed with my bicuspid aortic valve and told that I would eventually need heart surgery I had a lot of doubts about my future. My career goal was to be a Naval Flight Officer, which was out. I had serious thoughts about whether I should ever marry and have a family.
Fortunately, I decided to just get on with my life, got my degree, started a career, got married and had two wonderful kids.
I made it until I was 47 before I developed symptoms and needed surgery. Ten years ago tomorrow (12/15/2000) I got my St Jude mechanical valve.
Three years post-op I did my first triathlon and I completed my first half marathon last year.
Since then my cardiac health has not limited me at all in my activities. My frustrations now have more to do with age and overuse; chronic tennis elbow, patella tendonitis and most recently Achilles tendonosis, which has limited my activities since the end of July.
Sometimes you just have to suck it up and play the hand you're dealt. Like the old saying about using lemons to make lemonade.
My life hasn't been what I thought it would be, but it has turned out pretty well.
Mark
Fortunately, I decided to just get on with my life, got my degree, started a career, got married and had two wonderful kids.
I made it until I was 47 before I developed symptoms and needed surgery. Ten years ago tomorrow (12/15/2000) I got my St Jude mechanical valve.
Three years post-op I did my first triathlon and I completed my first half marathon last year.
Since then my cardiac health has not limited me at all in my activities. My frustrations now have more to do with age and overuse; chronic tennis elbow, patella tendonitis and most recently Achilles tendonosis, which has limited my activities since the end of July.
Sometimes you just have to suck it up and play the hand you're dealt. Like the old saying about using lemons to make lemonade.
My life hasn't been what I thought it would be, but it has turned out pretty well.
Mark
Alex
Active member
have my cath tomorrow. Nervous/scared!
normofthenorth
Well-known member
Endocarditis can be sneaky, alright, and is often mis-diagnosed for a while. My Dad (no valve problems!) almost died of it before the Docs figured it out.
The best approach for us VR folks is to be dentally/orally "cleaner" than our friends, relatives, and neighbors. I'm a big fan of dental gizmos to help with home hygiene -- good electric toothbrushes (including the Phillips Sonicare) and also WaterPik irrigation thingies. I also really like a kind of wooden toothpick called Stim-U-Dents, which I use instead of floss. My Dentist and Periodontist both rave about my home care.
Unfortunately, I'm still prone to gum disease (periodontitis), and I spent a bunch of time and money (and pain and nuisance) getting my mouth "tuned up" before I went in for the new valve. So do your cleaning and such, but also get your mouth checked out. (My OHS team said they wouldn't fix me without a "clean bill of health" letter from my Dental team!)
Life expectancy stuff: In addition to all the great advice you've been given above, it's important to remember that we aren't statistics. We're what the statisticians call "anecdotes"! Just individual data points, with all the huge "scatter" that single points have, which then gets smoothed out into the average lines they call statistics. My Dad was a sickly kid, with Rheumatic Fever and a bunch of other almost-fatal diseases by the time he was 14. Any smart scientist who had estimated his life expectancy then probably would have put it at <30. Instead, he entertained at his own 98th birthday party by playing about 3 dozen tunes on the French Horn!
If any of us consulted the actuarial tables to find out how many years we have left, we'd probably have a sad day. Mortality's a B|tc# , at any age, but it's a fact of life. Most people your age (maybe esp. guys) don't even consider it real; I'm pretty sure I didn't. But if you rub your nose in it, you have to agree that it's real, and most of us wish it weren't. The real question is "What then?" Letting it depress you, or paralyze you, obviously doesn't help anything or anybody. The choice of how to react is ultimately yours. I know my Dad never wasted a minute worrying about his life expectancy. He was good enough at making new (younger) friends that he only noticed a little bit that all his contemporaries died before he did. (Mortality isn't even fun for the people who live a LONG time!!)
The actual mortality rates for OHS including VR, including re-dos, are remarkably low now, and coming down, so they shouldn't keep you up at night, or change your plans. And the possibilities of less invasive or cath-based re-dos keep getting better, too. We can't choose the wind that hits us, but we can trim our sails so we head in a good direction. Or if you're a card player. . . It sounds like you're doing a pretty good job of playing the cards you got. I'd say keep doing that! If health concerns interrupt your plans, welcome to the club, and do your best to play THOSE cards as well as you can, then get back to the others. Such is life. It's a B|tc# , but it's also a gorgeous miracle.
The best approach for us VR folks is to be dentally/orally "cleaner" than our friends, relatives, and neighbors. I'm a big fan of dental gizmos to help with home hygiene -- good electric toothbrushes (including the Phillips Sonicare) and also WaterPik irrigation thingies. I also really like a kind of wooden toothpick called Stim-U-Dents, which I use instead of floss. My Dentist and Periodontist both rave about my home care.
Unfortunately, I'm still prone to gum disease (periodontitis), and I spent a bunch of time and money (and pain and nuisance) getting my mouth "tuned up" before I went in for the new valve. So do your cleaning and such, but also get your mouth checked out. (My OHS team said they wouldn't fix me without a "clean bill of health" letter from my Dental team!)
Life expectancy stuff: In addition to all the great advice you've been given above, it's important to remember that we aren't statistics. We're what the statisticians call "anecdotes"! Just individual data points, with all the huge "scatter" that single points have, which then gets smoothed out into the average lines they call statistics. My Dad was a sickly kid, with Rheumatic Fever and a bunch of other almost-fatal diseases by the time he was 14. Any smart scientist who had estimated his life expectancy then probably would have put it at <30. Instead, he entertained at his own 98th birthday party by playing about 3 dozen tunes on the French Horn!
If any of us consulted the actuarial tables to find out how many years we have left, we'd probably have a sad day. Mortality's a B|tc# , at any age, but it's a fact of life. Most people your age (maybe esp. guys) don't even consider it real; I'm pretty sure I didn't. But if you rub your nose in it, you have to agree that it's real, and most of us wish it weren't. The real question is "What then?" Letting it depress you, or paralyze you, obviously doesn't help anything or anybody. The choice of how to react is ultimately yours. I know my Dad never wasted a minute worrying about his life expectancy. He was good enough at making new (younger) friends that he only noticed a little bit that all his contemporaries died before he did. (Mortality isn't even fun for the people who live a LONG time!!)
The actual mortality rates for OHS including VR, including re-dos, are remarkably low now, and coming down, so they shouldn't keep you up at night, or change your plans. And the possibilities of less invasive or cath-based re-dos keep getting better, too. We can't choose the wind that hits us, but we can trim our sails so we head in a good direction. Or if you're a card player. . . It sounds like you're doing a pretty good job of playing the cards you got. I'd say keep doing that! If health concerns interrupt your plans, welcome to the club, and do your best to play THOSE cards as well as you can, then get back to the others. Such is life. It's a B|tc# , but it's also a gorgeous miracle.
Alex
Active member
I know this isnt a valve replacement surgery or anything but I havent had my teeth/mouth cleaned by a dentist in a while (over a year) is it okay to get the cath done tomorrow?
normofthenorth
Well-known member
I've never heard about any problems with a cath/angio and messy teeth. The need for a clean mouth is to avoid tooth infections (and to some extent, dental work) that can lead to Endocarditis. I don't think you'd be at higher risk of Endocarditis during your Angio -- though I'm no Doctor or expert.
Alex
Active member
well i had my scary cath today and my appointment on january 4th lol
How did your cath go?
Alex
Active member
apparently i spoke to the doctor but dont remember doing it haha I have an appointment on the 4th. The experience kinda traumatized me though
Really dont like hospitals
