Newly Diagnosed: Is sooner better than later?

[RunnerAl]

All,
Background: 66, lifelong runner/athlete, still at 50-55 RHR, "won" my age group in last 2 races (local!) but now at 9's! We do see the decline - now that I know where the problem is coming from - before the machines do.
According to May ECG, I'm "Probably bicuspid w/ sever stenosis and mild AI, normal LV size and function w/ mild LVH, Mild TR w/ moderately elevated PA, compared to 2009 ECG the gradient is increased (.9 cm2, 42mm AV gradient, etc.)."
Drs strongly suggested I cut back, so I'm not "competing" but just "fun running" at this point. Sched'd for another on Feb (9 mos), but wondering...
1) Why wait? Probability of further heart wall damage vs. ability to recover and continue with running is main concern. You always hear folks with Knee/Hip replacements saying Why did I wait so long!? Don't want to be that way.
2) Which valve type? Want to outlive the tissue, rather than "get by" with the mechanical, even if it means replacement - wise?
3) Surgeons? I'm near Evanston/Northwestern north of Chicago.
Any words of wisdom greatly appreciated!
Thanks,
Al White

 

[DeuxofUs]

Hi Runner Al!

First off, welcome to the group. I'm fairly new too. I am a 41 year old female and they caught mine by "accident".... I noticed that our current numbers are similar. Mine (last time they checked) was at 1.0cm down from 1.6 the previous year. Yikes!

I have mild regurg and mild LV enlargement. My doc said I would need surgery in the next 5 years and I think on her part... she is WRONG. Some docs like to wait until there are marked symptoms... others go by the numbers. I don't know what the reason is for waiting as this is an inevitable decline and I think any advancement in medicine isn't beneficial to people such as you and I (with our current numbers)

But, having said all that, I would start preparing NOW for your surgery. There will be many decisions you need to make and part of the battle is feeling like you are "ready" when you need to be and that you are comfortable with your choice in valves, hospital, surgeon, etc.

Others will be along with some suggestions and advice but I just wanted to welcome you... it's a great group of people here and you will get a lot of support. :wink2:

 

[epstns]

Al - I mentioned in another thread that there are some similarities between my case and yours.

I'm 63 and have been running, then jogging, for over 30 years. Not a competitive runner by any means, but enjoy it a lot. (My knees may have something to say, though. . . ) Once my valve got down to around 0.9 cm2, things got pretty rough. Really slow.

I was diagnosed with aortic stenosis in 2002, and my progression was similar to yours. I would bet that my last echo report before surgery looked a lot like yours, too. I was hanging in there, slowing down but not stopped. Things were getting rougher bit by bit. I finally opted for surgery on Feb. 28, 2011. As you can see in my signature below, I chose Dr. McCarthy at Northwestern for my surgery. Both the Dr. and the hospital get top grades in state rankings.

Why did I wait as long as I did? When I was diagnosed, they were recommending only mechanical valves for patients under 65 years old. I wanted to have the choice of tissue or mechanical, so I waited until I was older. At the same time the informal criteria slipped down so that by now they are recommending tissue valves for the majority of patients over 60 years old. I had my choice, and I opted for tissue. I know it is a personal decision, but I am hoping to minimize meds and get away from coumadin. I was lucky to be stable enough to wait that long.

As for surgeons, my short list included Dr. McCarthy at Northwestern (downtown Chicago), and Drs. Bakhos and Schwartz at Loyola (Maywood). All three were recommended by my cardio, but McCarthy has the world-class reputation.

I hit some "speed bumps" too. Were they the result of waiting? Who knows? I don't think so, as the pacemaker was implanted to guard against bradycardia (very low heart rate) and long pauses between heartbeats. I apparently had the bradycardia before surgery, but we just wrote it off to being in good shape after all the years of running. Maybe, maybe not. The other speed bumps were normal results of surgery and recovery -- just maybe a bit worse than some of the others had. We're all different, yet we're all the same.

Al - I'm sort of rambling here. If you have any specific questions or just want to talk, PM me and we will figure out where or how to connect.

At least we know one thing - you've come to the right place to get the best information around.

 

[normofthenorth]

Al, I was a year younger than you last Dec. when I traded in my bicuspid, stenotic, and insufficient AV on a brand-new "pig" valve. Maybe comparably competitive and athletic, though my "poison" is short-handed volleyball (court and beach, both) with a bunch of 30-somethings -- DEFINITELY not running!
7 months later I'm bicycling as aggressively as ever, up to 3:1 walk:jog for 3 miles in a Cardiac Rehab class (Too much like running for me!!), and I may even try giving volleyball a try sometime soon.

1) You've already identified the physical advantages of getting the AVR sooner. The only physical advantage of waiting is that for every year you wait, a tissue valve will probably last you 14 or 15 months longer (including the year of waiting).

Psychologically, there are important advantages to going sooner AND waiting longer (at least waiting for clear symptoms). Sooner means you cut short the often stressful anticipation, and later means you go into surgery with a clear CV deficit/problem, so it will be sooner post-op when you're better off than you were pre-op. I think that last consideration is worthy of some thought, more than most folks here, where "Get 'er done!" seems to be the majority view.
If you're already experiencing a decline in your running performance and maybe enjoyment, and being told to take it easy (which probably isn't your style), that's certainly another argument for going sooner -- though it might be 6-9 months, quite possibly even more, before you're running as fast as you are now, or will be a month from now.

2) I went for a tissue valve with a great record of durability (I've posted the link to the 2010 article document its apparent superiority among the long-established tissue valves), but a glimpse on the "Active Lifestyles & Cardiac Rehabilitation" Forum here will turn up a lot of athletes sporting mech valves, too. Rough contact sports would probably be too scary on Warfarin, but running doesn't seem to be a problem. OTOH, it seems reasonable to hope for 20+ years from a Hancock II valve at our ages, based on the latest research study, and it's probably also reasonable to hope for a replacement by catheter rather than re-op. (The article is entitled "Hancock II Bioprosthesis for Aortic Valve Replacement: The Gold Standard of Bioprosthetic Valves Durability?" by Tirone E. David, MD, Susan Armstrong, MS, Manjula Maganti, MS, in Ann Thorac Surg 2010;90:775-781, abstract at ats.ctsnetjournals.org/cgi/content/abstract/90/3/775? . Unfortunately, the full text isn't available without paying, though I've typed in a number of sections in various posts here.) There are still some older websites (and older people) who still say that cow valves have generally been outlasting pig valves, but I think this study and several others have proven the opposite.

On the mech-valve side, it seems reasonable to hope for an ACT regime with somewhat lower dosages and INR levels, but probably not eliminating Warfarin/Coumadin entirely until a replacement is found, tested, accepted, and affordable.

The mech-tissue choice often comes down to trying to avoid Warfarin/ACT/INR vs. trying to avoid re-ops -- with no guarantee of success, on either fork in the road. At the risk of being a "downer", I sometimes think it's rational to choose between the two ways of LOSING the bet: Would you be more frustrated/miserable/regretful, if you (a) chose a tissue valve but had to be on Warfarin forever ANYWAY, or if you (b) chose a mech valve but had to be re-operated on ANYWAY?

We've been having a lively set of discussions here (and they're still on-going) about specific mech valves, much of it recently focusing on my current fave, the ATS Open Pivot, and my current second-fave (which is the local fave), the On-X. (See the banner ad at the top of the page!)

(I've got nothin' on your #3, sorry!)

 

[ALCapshaw2]

Welcome aboard AL !

FYI, I'm a proponent of the "Sooner is Better" philosophy with regard to Aortic Stenosis.
Aortic Stenosis is a progressive disorder that only gets worse with time so I see little benefit in waiting once you reach the 'magic numbers'. One of our 'Famous VR Expressions goes: "The Worse it Gets, the Faster it gets Worse" which is especially applicable to Aortic Stenosis. FYI, Many Cardiologists and Surgeons use an Effective Valve area of 0.8 cm^2 as their trigger for recommending surgery.

There are several good Surgeons in the Chicago area. You would be wise to use one who has lots of experience with BAV and possible Connective Tissue Disorders (which often result in an accompanying Aortic Aneurysm). Dr. McCarthy at Northwestern is a world famous Heart Valve Surgeon (who was "stolen" from the Cleveland Clinic per our former moderator who was saved from an Aortic Disection by Dr. McCarthy before he went to Chicago).

There are Many Strongly held opinions about Valve Selection as you can see in the Valve Selection Forum!

It's time to start interviewing Surgeons so that you know who you will want and where you will go when 'it's time' (and at 0.9 cm^2 that time could be "soon").

'AL Capshaw'

 

[Greg a]

Al or Runner or Mr Al A heart felt WELCOME to our OHS family glad you found the site most of the community are OHS brothers and sisters, there are some minimally invasive so ask away, there is a wealth of knowledge here for the future .....


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

There have been too many posts about prople putting off surgery and someone morns the loss....just recently someones friend from High Scool was remembered here

 

[ken taylor]

I agree with al! I did listen to al and pushed for early surgery, So far it was a great decision. You can read my post in after surgery Boogey man post.

 

[RunnerAl]

All - thanks so much! Very nice to have found such a resource and a new group of BFFs!
Steve - I'd be delighted to discuss our "situation" and the local landscape... as soon as I figure out what PM means!Anxious to get on with it,
Al

 

[Lynlw]

All - thanks so much! Very nice to have found such a resource and a new group of BFFs!
Steve - I'd be delighted to discuss our "situation" and the local landscape... as soon as I figure out what PM means!Anxious to get on with it,
Al

Hi Al, welcome..PM is Private message If you click on steves name a few options should pop up one is to private message him.
As for you other questions, at 66 MOST surgeons would recomend a tissue valve, since pretty much (just ballpark figures) the most used tissue valves have sucess rates of lasting at 20 years and counting in about 90% of the patients over the age of 65. Then of course the chances of having them replaced even if they don't last that long by cath instead of surgically, are pretty good.

BUt everyone is different and has different priorities.