Valve Selection Forum

[ALCapshaw]

I asked Hank to create a Valve Replacement Forum to make it easier to locate information on this important topic without having to search through all of the other forums for information.

I remember reading references to papers on this topic under the Old Forum and would hope that those contributers would post their references here for ready access by old and new members alike.

I would also like to refer to the most read thread on VR.com, namely the thread "Making the choice,...." begun by Peter Easton on the
Heart Talk Forum. I'm thinking it might be a good idea to either copy or move that thread to this forum. To date, that thread is the most extensive on this topic with considerable up to date information.

'AL'

 

[Kevin M]

Al, it appears the excellent thread started by Peter Easton has stimulated the same reaction in a lot of people.

With Hank's blessing, I've begun to compile information from various sources in an attempt to develop a basic tutorial on the attributes of different valve types. (Sort of a FAQ on choosing your valve). Fortunately for me, I am in recovery and need a project to help fill the next couple of weeks.

The hope is that if we build an article that factually explains the pro's / con's and typical applications of each valve type; perhaps it will be easier for new and seasoned members alike to better understand the current landscape in this fast moving area.

It sounds simple, but to do so accurately without any personal bias is actually a little tougher than it sounds. The biggest challenge is to keep it flexible. Some individuals simply want to know if biological valves need coumadin; others want to know that the Ross Procedure is among the best for hemodynamic performance and will want to look at data. Keeping the information simple enough for the first reader, but still providnig access to more complex information for the second is important.

I've currently got about 17 pages of rough notes on the subject and just when I think I can start organizing them, someone posts a link to another great site full of good information.

I've already asked a few members to have a look at a draft and make suggestions/comments once I complete a rough version.

Anyone else who is interested in looking over a rough version (late this week?) and giving me their input/feedback can email or private message me directly.

All input is welcome. I am not an authority on this subject and I believe the collective experience of this group far outweighs the ability for any one individual to put together an accurate report.

Al, I believe an important part of this is to follow your suggestion of having a forum dedicated to this discussion. Posting the information is one thing, but having the ability to discuss it is more important.

Thanks for the ear,
Kev

 

[fdegranville]

Brave heart!!

Brave heart!!

Kevin my fellow Canadian,

You are a brave and dedicated man....taking on a monumental task such as this!! I have no experience with valve selection, but would be happy to look at your pages if you need the eye of a novice where this topic is concerned. I would be especially interested in what the current recommendations are for double valve replacement these days. I have seen little information regarding this issue (not that I'm contemplating anything like that)................
bonne chance,
fdeg

 

[srwieland]

Thanks, Kev.

What a great and much needed project! Wish I had the time I had a month ago to help. Of course, I'll always put in my two cents when I get the chance! But, to avoid bias, you should probably get my input last!

Anyway, you are doing a great service to all our new heart buddies who need to be as best informed as the can be to make this all important choice for themselves. Fortunately, any valve choice today is probably better than what was available five, ten, and twenty years ago. So, although there probably are better and worse choices, I don't think there are, relatively speaking, many bad choices. What is most important is to make a choice that truly suits us as individuals and the particular conditions we are each faced with.

We'll all stay tuned for further news from you on this. Thanks again.

 

[Peter Easton]

Sisyphus ahoy!

Sisyphus ahoy!

More power to you, Kev -- and to all those who can give a hand! I count myself among the support cast.

Given the importance and daunting complexity of the task, it will probably be critical to keep an eye simultaneously on two things (strabismus helps):

(a) desirable attributes of the site cum guidebook;

(b) what's feasible.

Of course, the notion of feasible can grow a good bit over time if a number of people put their shoulders to the wheel and the effort goes ahead in increments.

On the "desirable" end of things, a few reflections:

* The picture of valve choice and the information concerning it change at last weekly, it seems, so it would help to have a way to update, amplify and correct the material on a regular basis. Lots of people could suggest modifications or amendments, but the best thing, I think, would be to have (maybe by rotation) an "editor" or "webmeister" person who separates the viable from the flaky and has a way of verifying key points with medically competent sources.

* As you point out, people want different levels of detail on different topics. Happily, the web is a medium built to provide just that, if one programs in the hypertext functions and links. That does mean considerable effort devoted to wrestling things into web-adapted form as well as the already considerable one involved in developing the (initial) content. Probably in general one might want an interface page on each topic that was pretty straightforward and simple, keyed then to back up pages and links (including potentially to some of the research literature) for those who need or want to go in deeper.

* One associated resource that it might be helpful to build up at the same time would be a good glossary -- and, perhaps, in a larger sense, the sort of primer on how to read an echocardiagram, TEE, or cath report that folks have mentioned several times in recent correspondence on the forums.

Now, on the "feasible" end of the stick:

* Anything we can put together will constitute real progress. (My own father had an antidote for my -- and my mother's -- perfectionism. "Remember," he would entone, "Anything worth doing is worth doing badly, as long as it's no worse than it has to be!") I can think we can count on a ton of good will in support of the endeavor.

* Web resources seem to lend themselves to progressive development. "Under construction" is almost a badge of honor and courage in this arena!

* Other people can develop chunks or modules off-line for inclusion or linking once they are in shape and are judged compatible by the folks doing the brunt of the labor.

Arriba!

Peter

 

[Kevin M]

I'm looking at it from the standpoint of trying to provide basic attribute information of each valve type, including typical applications (i.e. no mechanical valves in pediatric cases).

Simple pro's and con's do not work because what is a pro for me may be a con in your situation.

The interface you describe is an important factor, since slogging through all the numbers and medical terms is primarily why this is necessary. Having the ability to navigate for basic information without all the sophisticated parts is important. Equally important is the abililty to drill down further to obtain the more complex information.

My belief is that if we can get the basics down and allow for additional modules to be added, it will be a good start. There's no sense going too deep until we get an interface that will serve the purpose.

The task is daunting, but I am not going to have an encyclopedia of information in this because I am not the best person to put it together.

I like the idea of getting a working draft going and then having people comment on what other things would be useful and parcel out the work to others.

You guys are freaking me out a little. I just wanted to get a basic piece to help newcomers with the facts so we could refer them to it instead of reading the same few posts over and over again. It seems to becoming something more and that's good. In fact, that is probably great. I just hope my little starting point won't disappoint because of increasing expectations on the forum.

I've been a bit negligent on this project this last week due to low stamina, but I'm feeling better, so I'm hopeful for the upcoming week.
Kev

 

[Kevin M]

I meant to mention that in the meantime, the St. Jude's website has an acceptable glossary. It may not have everything in it, but the descriptions are easy to understand. I find some more formal sites have a handful of definitions that describe medical terms using more medical terms.

Here's the url:

http://www.sjm.com/11.0/11.0.shtm

Kev