Why I am here

LondonAndy

VR.org Supporter
Joined
Aug 1, 2015
Messages
341
Location
London, UK
I am not new to the forum, but am glad it is here and think it worth saying why I visit and make the occasional contribution.

Despite a complication requiring a pacemaker to be inserted, I generally feel my aortic valve surgery 5 years ago (in September 2014 when I was age 48 and a lot) went well and I have not had any significant issues. More about what led to surgery later, but my recovery was smooth and surprisingly pain free, and I continue to work full time, pending my numbers coming up on the lottery.

People may come here because they are facing valve surgery and understandably scared, or have a particular issue they are trying to find an answer to, so newcomers to the forum may get a distorted impression of life afterwards with more problems discussed than "good news" stories, though of course there are notable exceptions such as Bob's throwdowns!

So I come here to keep an eye on the issues some people have faced, and what factors I might need to consider in my own life. You can see from the message counts how generous some people are with their knowledge and experience, and whilst few (if any?) are medical experts there is a wealth of practical experience. Yes, we must be careful not to blindly believe someone's assertion, but knowledge is power, and researching our conditions is important if we are to have meaningful conversations with doctors and cardiologists, challenging them as they help us make decisions about OUR lives. Not all of them seem to have always distinguished themselves as far as some forumites are concerned.

I also come here to post positive messages about life on Warfarin, as there seems to be an awful amount of disinformation out there. We each have our own priorities in life, and mine was to try and avoid any future open heart surgery - there is no doubt it is a major trauma for the body, and going through it again when one is 7 to 15 years older and weaker, with scar tissue around the heart for a surgeon to contend with, seems a bad idea to me. Yes, new developments are coming, but some have been talked of for a very long time and are still not routine. And yes, I am male so don't have to think about things like pregnancy, and I seem to respond to medications well/as intended.

So for me a mechanical valve made sense, but this means keeping a good eye on my "INR" and making sure the dose I take is correct. Too high and there is a risk of hemorrhage, too low and a risk of stroke. The fact that it is possible to manage this with a hand-held meter we can use at home (or wherever) with a finger-prick of blood once a week gives freedom from most clinic visits and better quality outcome - see http://bit.ly/NICEreport for some amateur notes on the UK regulator's findings, coincidentally also in September 2014 when I had my surgery, and a link to their full report.

My surgery was for aortic stenosis. My surgeon indicated that the combination of insulin injections (I am a type 1 diabetic) and statins can cause calcification, blocking the valve. My symptoms started suddenly, with shortness of breath after walking only 200 - 300m - almost as if someone had flicked a switch. Why one valve is affected more than others they didn't know.

So my thanks to fellow forumites for their wealth of comments and questions - I have learnt a lot. If you are facing this issue in your future, then I am sure you will learn a lot too.
 

Astro

Well-known member
Joined
Aug 26, 2019
Messages
71
Location
Adelaide, Australia
Thank you LondonAndy. It is encouraging to hear your journey. I agree that we probably see a distorted view on these forums so some balance is welcomed.
 

FredW

Premium Level User
Joined
Dec 16, 2015
Messages
249
Location
Rochester Mills, PA
Well said, LL. We do have a tendency to focus on what is said and ignore what is not said.

Pellicle, I like your comment: “There are many things I would not have found out about by staying in my shell.” The shell is comfortable, but knowledge is most always outside of it.
 

epstns

Premium User
Joined
Dec 26, 2002
Messages
5,095
Location
Chicago area
I made my way here almost daily for about 15 years or so. Then, I just felt that I needed a break. I find "life" here to be a two-way street. We receive from the group here in equal amounts to our contributions - no matter where we are on our valve journeys.

If I can manage the discipline, I think I'll stick around a while. . .
 

dick0236

Eat the elephant one bite at a time
Joined
Feb 10, 2007
Messages
2,899
Location
louisville, KY USA
I found this forum soon after I began searching the Internet for info a dozen or so years ago. From the time I had surgery decades ago until I had access to the internet, information concerning my condition was very difficult to find. Almost immediately I was able to get practical info that helped me live with my situation. I consider Valvereplacement.org to be an invaluable resource.......for both new patients and old patients alike.
 

almost_hectic

Well-known member
Joined
Jun 30, 2015
Messages
563
Location
naples, florida
I am not new to the forum, but am glad it is here and think it worth saying why I visit and make the occasional contribution.

Despite a complication requiring a pacemaker to be inserted, I generally feel my aortic valve surgery 5 years ago (in September 2014 when I was age 48 and a lot) went well and I have not had any significant issues. More about what led to surgery later, but my recovery was smooth and surprisingly pain free, and I continue to work full time, pending my numbers coming up on the lottery.

People may come here because they are facing valve surgery and understandably scared, or have a particular issue they are trying to find an answer to, so newcomers to the forum may get a distorted impression of life afterwards with more problems discussed than "good news" stories, though of course there are notable exceptions such as Bob's throwdowns!

So I come here to keep an eye on the issues some people have faced, and what factors I might need to consider in my own life. You can see from the message counts how generous some people are with their knowledge and experience, and whilst few (if any?) are medical experts there is a wealth of practical experience. Yes, we must be careful not to blindly believe someone's assertion, but knowledge is power, and researching our conditions is important if we are to have meaningful conversations with doctors and cardiologists, challenging them as they help us make decisions about OUR lives. Not all of them seem to have always distinguished themselves as far as some forumites are concerned.

I also come here to post positive messages about life on Warfarin, as there seems to be an awful amount of disinformation out there. We each have our own priorities in life, and mine was to try and avoid any future open heart surgery - there is no doubt it is a major trauma for the body, and going through it again when one is 7 to 15 years older and weaker, with scar tissue around the heart for a surgeon to contend with, seems a bad idea to me. Yes, new developments are coming, but some have been talked of for a very long time and are still not routine. And yes, I am male so don't have to think about things like pregnancy, and I seem to respond to medications well/as intended.

So for me a mechanical valve made sense, but this means keeping a good eye on my "INR" and making sure the dose I take is correct. Too high and there is a risk of hemorrhage, too low and a risk of stroke. The fact that it is possible to manage this with a hand-held meter we can use at home (or wherever) with a finger-prick of blood once a week gives freedom from most clinic visits and better quality outcome - see http://bit.ly/NICEreport for some amateur notes on the UK regulator's findings, coincidentally also in September 2014 when I had my surgery, and a link to their full report.

My surgery was for aortic stenosis. My surgeon indicated that the combination of insulin injections (I am a type 1 diabetic) and statins can cause calcification, blocking the valve. My symptoms started suddenly, with shortness of breath after walking only 200 - 300m - almost as if someone had flicked a switch. Why one valve is affected more than others they didn't know.

So my thanks to fellow forumites for their wealth of comments and questions - I have learnt a lot. If you are facing this issue in your future, then I am sure you will learn a lot too.
a major trauma for the body AND mind
 

Warrick

Well-known member
Joined
Dec 27, 2015
Messages
520
Location
New Zealand
Thats a very odd observation if I may be so bold... monopolize seems quite an indignant way of putting it imo
If people didnt come here and yes daily then it wouldnt be much of a forum... it would end up like that other one... with about 1/2 a dozen followers and one or two posts a week...
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
2,797
Location
California
That was an interesting comment from almost_hectic. I've been on this forum, off and on, and there were times when I may have been away from the forum for many months - maybe a year or more.

Since the new administrators took this board over, I've enjoyed the higher speeds, and the daily updates. I'm appreciating the ability to update posts rapidly, and to quickly locate the new ones.

If posts from some users are too much (I may be more guilty of many here because my posts are often pretty long, and a lot to slog through), skip the ones you don't want to read, and look for others that you may prefer.

I'm sure that all of the more frequent posters (the ones who probably have few questions, and more answers and suggestions), that our only goal is to provide information, feedback, and (possibly) suggestions that can be of benefit to those reading the forum.

Although there are disagreements, I doubt that many come here to cause trouble or to be negative on the site.

This is an active, living, forum -- and this often means that there may be more than a handful of daily posts.
 

epstns

Premium User
Joined
Dec 26, 2002
Messages
5,095
Location
Chicago area
In the distant past, there used to be a group of members who were a bit more "combative." They wanted to use this board as a venue for political discussion -- and that was before the current political climate here in The States became as polarized as it is. First, Hank asked them to stop. Then he tried opening a separate sub-forum for off-topic discussions. Eventually it became so acrimonious that he asked some of them to leave. They now have their own board, and some of us also visit there, too. I think it has all worked out over time. They can have their political discourse with a side dish of heart discussions, while we who stayed behind can focus on those issues that are important to us.
 
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