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vkernus

Well-known member
Joined
Aug 12, 2008
Messages
86
Location
Fairfax Virginia
I just want to introduce myself to the members of this great forum. I am soo glad that I found this place.

At the age of 17 I was diagnosed with a mitral valve prolapse. I didn't really give it any thought other than to have follow up echos avery couple of years. Two years ago at the age of 43 I was informed that the mitral valve prolapse was actually a bicuspid aortic valve with moderate stenosis. As I was not symptomatic, I really didn't give that news much thought. Earlier this year I started feeling off. Tired all of the time, lacking energy and finding myself short of breath at the strangest of times. A couple of weeks ago I went back to the cardiologist after having a tough time working outdoors in the heat. The cardiologist ran the usual tests, echo, CT ultrasound and determined that my valve had in the past two years progressed from moderate to severe and that my aortic root had changed to a 4.9. I was told that I will need OHS with AVR and a portion of my asending aorta replaced.

I am scheduled for a cardiac catheterization on September 10, and a pre-op meeting with my cardia surgeon on 9/15. Surgery will be sometime shortly thereafter.

To be quite frank, I am rather scared and not looking forward to any of this. I want to thank you all for this great site. I am learning alot and, while I do not relish having the surgery, the information I am gleaning from this site is certainly helpful.

I am sure that I am not alone feeling the way that I do. I am finding it difficult to focus on work and have a general feeling of depression for lack of a better word. This is all very overwhelming.

Regards,

Victor
 
Hi Victor and welcome!

We've got a long term member that I believe resides in Fairfax so hopefully he will be along sometime to add his two cents to the discussion.

Having a bicuspid aortic valve mistaken for mitral valve prolapse is certainly different,:eek: but now that they've got it figured out, you should do fine.

You'll know more after the cardiac cath, so please keep us updated and if there are any questions you need answered, just let us know.
 
Hello and welcome to the forums.

Well you've been reading around, so you know that there isn't one of us that hasn't felt like or been in your shoes. It's a horrible feeling no matter how many times you've done it before or if it's your first. The good news is, your going to be fixed and odds are your going to be fine afterwards too.

Your next step is valve selection unless you have something in mind already.

We'll help you with just about everything you need and keep you company until, during, and after your taken care of. Just hope you'll come back to help someone else when they come in scared and petrified like yourself. ;)
 
Thanks Ross.

Valve selection is becoming an obsession. I was told that my best bet was a mechanical valve (St. Jude) My cardiologist told me that it would last a lifetime. ha ha. I don't like the idea of being on blood thinners. I am very active, I fish, hunt, hike, shoot skeet and trap, and participate in target archery. If on blood thinners, I will have to be very careful with those activites.

On the other hand, the thought of going though another surgery is not appealing either. It might be different if I knew how I will handle the surgery, but that is a big unknown at the moment.

For now I plan to educate myself to the fullest extent possible and work through my current case load to prepare for spending a few weeks out of the office. I will keep you posted on my progress.
 
Welcome Victor. Stick around, this Forum is very valuable to the new patient facing surgery:). I have been post surgery for a long time and I am amazed at the knowledge and willingness to share within this group. New folks, like you, are very fortunate to have an informational source like this....oh, and by the way, your upcoming OHS (open heart surgery) is doable and you will be fine, just like the countless hundreds of thousand who have preceded you:D.
 
vkernus said:
Thanks Ross.

Valve selection is becoming an obsession. I was told that my best bet was a mechanical valve (St. Jude) My cardiologist told me that it would last a lifetime. ha ha. I don't like the idea of being on blood thinners. I am very active, I fish, hunt, hike, shoot skeet and trap, and participate in target archery. If on blood thinners, I will have to be very careful with those activites.

On the other hand, the thought of going though another surgery is not appealing either. It might be different if I knew how I will handle the surgery, but that is a big unknown at the moment.

For now I plan to educate myself to the fullest extent possible and work through my current case load to prepare for spending a few weeks out of the office. I will keep you posted on my progress.
Click to expand...

I encourage you to learn about Coumadin. There is no reason on earth that you cannot continue to do all of what your doing and enjoy every minute of it. There are so many wild myths about the stuff and what bothers us is that the medical community is helping propagate the myths. They have not bothered to bring themselves up to date with modern technique and profess on days of old.

Please see the stickies at the top of the anticoag forum and visit Al Lodwicks site at www.warfarinfo.com He is a member, pharmacist and certified anticoagulation expert. You can believe what you read on his site and he's going around the country currently trying to teach these pros in the field too.

Also take a look at Active Lifestyles forum. People in there are doing even more dangerous things then you on Coumadin. Heck our very own founder, Hank, jumped from a plane not to long ago.
 
Ross,

I don't plan on ceasing the activities, but perhaps modifying my behavior. For example, I don't think that it would be wise to hunt by myself from a tree stand. A fall into a support harness could create serious bruising. If left hanging alone for too long, I might suffer a serios injury. Similarly, going fly fishing deep in the Shennandoah Mtns by myself might not be a good idea.

Don't get me wrong, I recoginize that the risks exist regardless of the coumadin. however, I think that being on blood thinners would perahps add to the risk making it more prudent to have a companion in the event something untoward happens.
 
Welcome and good luck. You've come to the right place for support and answers. We've all been scared no one more than me but this site has been wonderful and supportive.
 
Welcome to the site. It is amazing how we go from being afraid and making that first effort to post and then go to being an old pro. I look forward to signing on every day and seeing what everyone has to say and what is the latest being discussed. You will do well and have everything lined out by the time of your surgery.
Take care.
 
Welcome Victor!

I live in your area (but am not the one Mary mentioned), and had aortic valve replacement Jan 30 at Inova Fairfax Hospital. I also went around for about 15 years thinking I had mitral valve prolapse. Apparently imaging has improved a lot.

Who is your cardiologist and which surgeon are you seeing?

I had a pretty easy time of it, the experience wasn't nearly as harrowing as we expected, and that's probably what you'll be telling people in a few months. For now, for you, the idea of heart surgery is a lot to adjust to--it really helps to learn here.

Best wishes,
Debby
 
Debby,

My cardiologist is Dr. Paul O'Brien in Alexandria. My surgeon will likely be Dr. John Rhee also of Alexandria and the surgery...you guessed it..at Inova Alexandria Hospital.

You are correct, the idea of trusting someone I barely know to open me up and work on a major organ is overwhelming. Logically, I recognize that OHS is not as harrowing as perhaps I imagine it to be, and to be honest, I am not sure if I am more scared of the surgery itself or the recovery. In any event, it appears that surgery is not really an option so, the best thing for me to do is to educate myself.
 
I doubt that Warfarin would add significantly to the risks you mention. My experience on that drug is that nothing really changes. I bleed only a short time longer and I bruise about the same as "normal":rolleyes:people. Might be a good habit to take a buddy on these trips for anything that could happen. There are black bears and rattlesnakes in them hills and hollers too:p.
 
Thanks Dick. I have run across the odd black bear in those hills. I leave them alone, they leave me alone. :D

My cardiologist mentioned thet being on Coumadin would require some restrictions, and he did so while my wife was in the room. She is worried that something will happen and has mentioned selling off my tree stands while I am in the hospital to remove temptation. :eek: She knows that I am a hard man to slow down. I think one of the things that worries her the most is seeing me so tired all the time when I am usually on the go.
 
vkernus said:
Thanks Ross.

Valve selection is becoming an obsession. I was told that my best bet was a mechanical valve (St. Jude) My cardiologist told me that it would last a lifetime. ha ha. I don't like the idea of being on blood thinners. I am very active, I fish, hunt, hike, shoot skeet and trap, and participate in target archery. If on blood thinners, I will have to be very careful with those activites.

On the other hand, the thought of going though another surgery is not appealing either. It might be different if I knew how I will handle the surgery, but that is a big unknown at the moment.

For now I plan to educate myself to the fullest extent possible and work through my current case load to prepare for spending a few weeks out of the office. I will keep you posted on my progress.
Click to expand...

I had to read no further when you mentioned "target archery" my friend!

I did 3D archery for over 14 years & still participate in some target archery from time to time, anticoagulant (coumadin) & all! I have been on coumadin (blood thinner as you prefer to call it but it's really an anticoagulant) for 33 years & it never hindered any of my outdoor activities whatsoever!

And if you talk to the many people here who have been long-term users of anticoagulants, you will find that they too did not have to make any drastic changes to their lifestyle because of it. So regardless of what horror stories you may have heard & will continue to hear from people who are not educated enough about coumadin, it is not a life threat when monitored correctly. If that was the case, many of us would not be hear to talk about it! :) So don't let that (taking coumadin) scare you in any way.

Wishing you all the best & welcome to the forum. I hope that by joining this group, some of your fears & anxieties may be lessened as you get reassuring advice from those of us here. :)
 
njean,

Thanks for the reply and reassuring words. I realize that there are many myths regarding anti coagulants. There is a lot for me to learn and you can bet I will learn all that I can.

I did enjoy 3D archery but found that walking the course took too much out of me the past year or so. The course at my club is a real killer even with a healthy heart. I am more involved in field archery at the moment. I try to get to 10 or more shoots a year (depending on my honey do list). I had planned on shooting in our two state tournements this year but have been sidelined by my cardiologist. I am not supposed to exert myself until after the surgery. I can see why, I helped my daughter move into her condo at VA Tech and never felt so weak in my life. I still find it hard to understand where all my stamina has gone.
 
Hi Victor and welcome to the site. I'm still waiting for my surgery, so i really have no words of advice about that, but i wanted to say that being scared is normal. People tell me they don't know how i can be so calm...boy, have they got me pegged wrong...i'm so scared too! It does help though to chat with the people here about your fears, and there are a lot of people here that can give you good advice.

Best wishes and good luck,

Dawn-Marie
 
Tell her to hide the stand for now. Don't sell it yet 'cause you probably will be able to use it. I believe that docs are ultra-cautious about warfanin because of the many people, especially elderly people, who are on it due to AFib and who perhaps do not practice good ACT(anti-coagulation therapy). There was a "Thread" recently that showed about 70% of the people on ACT are AFib patients. Warfarin does require good dosing and testing habits, but is very simple once you get in the habit.

Do your homework. Each fix, mechanical or tissue, has its +'s and -'s.
 
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