Other sites.

[Ovie]

This will always be my home for heart related issues and discussion, without this site I wouldn't have been prepared for my surgery the way I was before or after, and have the support I received, this site is truly a blessing. But I was curious, are there any other heart related forums you frequent? I'm actually looking for one that maybe has a more consistent crowd of younger people, mainly for the lifestyle changes that a lot of us have to change, and I guess I'm just looking for somewhere I can go where maybe someone in their mid to late twenties had the same or similar surgery and completely turned what they could and couldn't do.

I have yet to talk to someone my age who's going through the same thing, and that's tough. I know people who were my age and have had their surgeries but are now much older, but I don't think that's the same.

So I figured I'd ask if there were other decent forums out there to explore. Google hasn't really helped me out much.

Thanks!

 

[MarkU]

Are you calling me old? That's OK, because I am...:wink2:

I also spend time at http://www.cardiacathletes.com/ which interests me since I lead a fairly active lifestyle. I'm not aware of any heart-related sites that are specifically focused on younger patients.

I don't spend as much time here as I used to, though I do check in from time to time. I was fortunate that my surgery went well and I was pretty much able to return to a "normal" life and have "moved on" so to speak. That's a good thing in a sense, but I'll alway have an appreciation for this place.

Best wishes.

Mark

 

[LyonsAudio]

This is the only place I've found.

I'm also young at 28.

 

[epstns]

One idea, guys. We could ask Hank if it might be possible to open another forum within this site for the "younger" patients. If there is enough interest, that forum would become active as a "home within the home" for members younger than us "grey-hairs."

 

[ejc61]

While we're at it, I would add a mitral valve area since that's clearly a different procedure.

 

[Superman]

Ovie,

I'm only 40, but can completely relate to your situation as I was even younger than you my first time around and lived through what your living through (to a degree). Young, single, etc. Of course at that time, I was the only one I knew young or old that had this done. There weren't internet message board groups to discuss with either. The only other people I knew of that had heart surgery were much, much older and in for bypass.

I just talked with my "normal" friends about stuff. But I know you've had some issues with folks bailing on you a bit too if I remember correctly.

We're talking about a condition that affects 1 - 2% of the general population. Of that, only so many even need their valves replaced. Further, it's a pretty small percentage that needs surgery prior to 50. Look up some studies out there on valve choice, etc.

http://circ.ahajournals.org/content/111/7/920.full.pdf+html

This one had 932 aortic valve replacement patients ages 26 - 91 participate in the study. Of those, 6 were between the ages of 21 - 30 and 15 were between the ages of 31 - 40. Things really start to increase over 40 with the vast majority falling between 61 - 80 (616 of the participants).

Whether we like it or not, we're in rare company. Not saying there aren't other heart surgery forums out there. Just that it's not likely to find a big club of young aortic valve replacement patients outside of this one.

 

[Jkm7]

Sometimes professional guidance is more effective than an internet message board.
Though we all try here, there are some people who could benefit from conversation with someone more trained. It is no embarrassment or anything else negative. The only negative is to not seek what help we might need.
Young valvers, middle-age valvers, older valvers..... we all go through a life altering, very traumatic event and anyone who denies that is in denial IMO This is a major situation we all have to find our way to navigate through and for most of us it isn't easy.

 

[Jkm7]

While we're at it, I would add a mitral valve area since that's clearly a different procedure.

Ovie,

I'm only 40, but can completely relate to your situation as I was even younger than you my first time around and lived through what your living through (to a degree). Young, single, etc. Of course at that time, I was the only one I knew young or old that had this done. There weren't internet message board groups to discuss with either. The only other people I knew of that had heart surgery were much, much older and in for bypass.

I just talked with my "normal" friends about stuff. But I know you've had some issues with folks bailing on you a bit too if I remember correctly.

We're talking about a condition that affects 1 - 2% of the general population. Of that, only so many even need their valves replaced. Further, it's a pretty small percentage that needs surgery prior to 50. Look up some studies out there on valve choice, etc.

http://circ.ahajournals.org/content/111/7/920.full.pdf+html

This one had 932 aortic valve replacement patients ages 26 - 91 participate in the study. Of those, 6 were between the ages of 21 - 30 and 15 were between the ages of 31 - 40. Things really start to increase over 40 with the vast majority falling between 61 - 80 (616 of the participants).

Whether we like it or not, we're in rare company. Not saying there aren't other heart surgery forums out there. Just that it's not likely to find a big club of young aortic valve replacement patients outside of this one.

ejc:
I agree with you.
There are few of us who are mitral valvers but most everyone here makes no mention of mitral valve....
sort of like we don't exist. :rolleyes2:

(My underline)

 

[pellicle]

Hi

Sometimes professional guidance is more effective than an internet message board.
Though we all try here, there are some people who could benefit from conversation with someone more trained. It is no embarrassment or anything else negative. The only negative is to not seek what help we might need.
Young valvers, middle-age valvers, older valvers..... we all go through a life altering, very traumatic event and anyone who denies that is in denial IMO This is a major situation we all have to find our way to navigate through and for most of us it isn't easy.

I would like to second this motion.

all of it

 

[Superman]

ejc:
I agree with you.
There are few of us who are mitral valvers but most everyone here makes no mention of mitral valve....
sort of like we don't exist. :rolleyes2:

(My underline)

Whether we like it or not, we're in rare company. It's not likely to find another club of young mitral, tricuspid, pulmonary, or aortic valve replacement patients outside of this one.

I'll try to remember that it's not aorticvalvereplacement.org. It's just valvereplacement.org. :thumbup:

 

[Mom2izzy]

Other sites.

I sometimes forget that I don't fall in with the "young" crowd anymore...It doesn't seem like it was THAT long ago, but I guess it was. Yikes...I'm "old".

I like the idea of a mitral valve area too.

 

[ejc61]

Thanks jkm7. I actually limit my involvement on this board because the AV'ers minimize any procedure not involving the dramatic sternotomy. I consider myself one of the few with a different experience to share.

 

[youngmom]

ejc61, what do you mean mitral valve is a different procedure?

 

[ejc61]

Hello youngmom,

I guess I mean that with a MV, there's more emphasis on trying to repair rather than replace where as with AV, replacement is usually the only option. As a result, there's just different ways to deal with it.

 

[Jkm7]

I fall into the category of having had CABG surgery and then four years later Mitral Valve Replacement.
For the longest time, some members here were so superior in their tone about those who needed a bypass that it was humiliating and degrading. What do they know of my family history, my life style, my personal risks to pass JUDGMENT as to my having causesd my heart attacks and need for CABG.

That tone has diminished since some previous members disappeared however it was anything but supportive.
Add to that my diseased valve is mitral valve and I may as well find a quiet corner and dismiss myself as irrelevant.

Clearly I have chosen to remain vocal here and if I add any help to anyone that is my goal.

And yes, having mitral valve surgery was different than Aortic.


Unlike you, ejc, I required full sternotomy both times though my second surgery I did not need any bypasses and those from four years prior were open and patent.



[

 

[ejc61]

I'm glad I'm not the only one that feels this way Jkm. I also have slight aortic valve regurg. Maybe if and when the time comes that I need aortic intervention, they'll have some new technology/procedure advancement to fix it. I mean isn't that what medicine always strives for?

 

[Superman]

I think anybody who has been close to anyone with coronary artery disease knows how much of that is hereditary. I went to prom with a girl who was young (obviously), healthy, athletic, brothers were stars of the high school baseball team, and she had cholesteral levels well over 300. All of 5'3" and maybe 110 - 120lbs. Okay, not typical prom banter, but we knew eachother forever and she knew about my heart issues too.

My FIL battles build up in his arteries and has stents in place. He watches his diet to a T, he's very fit. Walks at a 4.5 mph clip for an hour a day. He's in great shape, but cholesteral and plaque build up will always be a battle for him. Lost his father very young to a heart attack.

I also had a co-worker in his early 50's. Avid runner. Used to regularly bike to work. Had a massive heart attack on a New Years Day run a few years ago and was barely saved. Another very health concious individual.

It can be controlled through diet and excersize. But for some, it's a whole lot harder to control than for others.

I've kind of wondered if BAV patients with connective tissue disorders are less susceptible to plaque build up in the arteries because of the connective tissue disorder or other factors of the congenital heart defect. My cholesteral levels have always been very low. In the mid 100's. I do no watch my diet and don't make time to exercize.

 

[youngmom]

oh my! I would hope no one dealing with heart disease would compare themself to another person. We are all different and all have different levels of pain.

 

[epstns]

In defense of vr.org, in general, I find that over the years the composition of the active membership varies. Sometimes we do actually have a noticeable concentration of MV patients, but at other times there seem to be few or none active. We also used to have a couple of very active (and revered) members who were CABG patients who never had valve issues. I think that some of us are just bery willing to jump in and comment on things familiar to us, but we stay quiet with regard to things outside our experiences. Might just be human nature.

When I first joined, we had a small but fairly active group of members in the Chicago area. IIRC, counting myself, we had 3 aortic valvers (one of whom also had a mechanical mitral valve), one mitral and one pulmonary valver. This small sample may mimic the actual distribution of valve implants in the general population - except that we had no tricuspid valve recipients that I remember.

I understand the comment about some of the past members who are now on another board. They may have given the impression that unless one had a certain procedure, they were not important. Some of these folks had known each other for many years, and in their familiarity with each other their "conversation" may have made others feel less welcome. As a long-time member here, I would like to apologize for this sort of behavior. IMHO, that sort of behavior is not what this site is all about. Helping and supporting each other is what I think we are all here for.

 

[ejc61]

Thanks Steve for the honesty. I do feel however that sometimes people put their own procedure as the only fit all solution for every problem. I was curious about other boards. Still searching.