New member 2nd surgery

[Chris P]

Hi, I am 49 years old. I was born with a malformed Aortic valve, basically it was too small. The murmur was caught at birth and I was enrolled in a monitoring program at Dartmouth Hitchcock. The Aorta itself was fine. By the time I was 11 the lower than normal ejection fraction caught up to me and I was not able to do much and it was decided to perform procedure to increase the amount of oxygenated blood flow coming out of the valve.

They did not replace the valve, they made incisions in it the leaflets to keep the valve open longer, basically it does not close at all. They indicated I would need a surgery again when I was 21 and most likely every 10 years. 38 years later and no second surgery. The advice back then was no physical activity of any kind really, I ignored that…. cause I was 11 J I worked construction with my dad till 30 years old, I work in an office now, lifted weights ran anything I wanted really. At the last appointment in Dartmouth at age 21 they said “we don’t want to know what you’re doing but keep on doing it”.

The valve has another 3-5 years at the rate of calcification of the incisions, but the aorta has ballooned up well past 5mm. I need to have a the valve and the aorta replaced up the U-turn. I am having a struggle with choosing a flesh or mechanical.

If I choose a mechanical valve and monitor/regulate my Coumadin can I still participate in light weight lifting and running. Reading through this great forum and other materials the result seems to be all over the place. I have been trying to make rhyme or reason to the outcomes. Basically I am trying to predict how I will react to Coumadin by looking at others history and trying to find a pattern. Or is it truly just random genetics that some people have a small effect and some a large?

Thank you for any insight you can provide

 

[pellicle]

Chris

I had my first OHS at 10, to "split the cusp" of a bicuspid valve (basically what you are perhaps calling a malformed valve) ... I had the valve replaced at 28 with someone elses (a homograft valve) which lasted till I was 48 ... then (due also to an aneurysm) I had my 3rd OHS which is a mechanical.

I monitor my own INR , continue to live as I have always lived (some hiking, some XC Skiing, riging motorbikes, light weigh training ...). I've continued to reno my house (sold, moved to Finland, moved back to Australia, bought a cottage out in the country and working on that). I recently did the steel work (yes, sharp ****) on alterations to my car garage there. I see no reason as to why you'll have any other obstacles to a normal life as to what I've had.

Search out some of my posts here if you like ...

Take it one step at a time and learn as you go ... you'll find that the biggest problem is the mis information you seem to have been given (malformed valve indeed, how derogatory)

Best Wishes

 

[pellicle]

PS

just like the "good advice" you were given about avoiding any exertion (and then working in construction which did you good) you'll find similar BS abounds on what you can and can't eat on warfarin (or the brandname for that drug "coumadin") ... I expect some of the others who are long time warfarin users here (I'm a newbie, just 6 years) will perhaps add their own experiences ... like most things its usually caution from the people who aren't experienced on what you can and can't do. Most of us:

• eat what we want
• do what we want
• go where we want

A guid as to "limits" can be found in this ladies story:
http://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749

(bionic ... pah ... simple mechanical)

 

[dick0236]

If I choose a mechanical valve and monitor/regulate my Coumadin can I still participate in light weight lifting and running. Reading through this great forum and other materials the result seems to be all over the place. I have been trying to make rhyme or reason to the outcomes. Basically I am trying to predict how I will react to Coumadin by looking at others history and trying to find a pattern. Or is it truly just random genetics that some people have a small effect and some a large?

I have always done whatever exercise or avocation that interested me....from serious carpentry(built a lake house) to a current 3X/week gym routine(no free weights.....only treadmill and resistance weights). My own experience with the valve and warfarin is that I am only limited by using good sense.......like I don't run with scissors.

The amount of warfarin I take is directly related to my life style and activity. When I was in my 30s/40s my dose was stable at 70mg/wk. As I have gotten older and less active my dosage has gradually declined......currently 35mg/wk. I self test my INR weekly and have made few changes in my dose in the last couple years.......and those changes have been small and temporary. My discussions with my docs over the years is that the biggest problem with INR management is patient non-compliance......I think it is also due to doctors making poor dosing changes. They tend to "use a sledge hammer to kill a fly" in dosing adjustments.......but the newer, younger docs are not nearly as bad as the old ones thirty years ago.

Glad you found this forum......lots of good info........welcome and good luck.