New Future AVR Guy

[Cooker]

Hi,

Not sure where I should be posting this so if this is not the correct place let me know. I am 49 years old and found out two years ago that I would need AVR in the future. I am pleased with my cardio doc and am currently on a six month rotation with echo and stress echo. My condition is stable with no change in the past year as far as increased regurgitaion. I have had problems with atrial fib and am on Toprol XL 100mgs up from 50 mgs. The increase in Toprol seems to have caused some minor fetigue but nothing I can't deal with.

I am not at all excited about the prospect of this procedure. My cardio doc says that I am in a wait and see mode; my internest who I also have complete confidence in says the time for surgury is before I have symptoms. It seems that the stress/fear seem to come and go and by no means is it consuming, but it is very much on my mind. Not knowing when is the hardest part.

This is a great site and I realy appreciate the postings and support that is given. Thanks for letting me be a part of this wonderful resource.

Cooker

 

[Christina]

Welcome..

Welcome..

Hey Cooker,

You've come to the right place so stick around for lots more information. This site consists of a bunch of great people who will be there for your support the whole time. We will be there to hold your hand, so to speak, so you will go into surgery eventually with the power of knowledge.
AVR surgery can be scary for the lay person who has not familiarized him/herself with what is going on. I was one of those people and my mind was consumed with the unknown, but once these kind people put my mind at ease and told me that most of us do just fine, I knew I could do it.
The waiting period can be difficult. It was the hardest for me and I only had to wait 3 weeks. Some people are in the "waiting room" for much longer. I have a friend who's been dodging the knife since 1996. Doing fine just being monitered every 6 months with an echo.

Wishing you the best.

 

[Wise]

Cooker, I am in a somewhat similar situation as you. I have checkups every six months and a stress/echo yearly. I had extras echoes this past year due to some increase in regurgitation. I am 46 years old and have known about my bicuspid AV for almost two years (I think). Anyway, hopefully you will continue for a while without surgery. I've been told as of last summer that I'm looking at 2-5 years before surgery; a few months before that the time frame was 5-10 years. I'm anxious for the next tests to see what my cardio thinks. I pesonally think for me it will be 5-10 years or longer, but who knows. I wish you all the best and hope that if you have surgery it will be in the right timing.

 

[BDMc]

Welcome

Welcome

Cooker, I'm inclined to agree with your internist. I had an aneurysm in addition to a bad valve. I didn't like waiting! Once the operation is behind you it simplifies things considerably. This is a great place, and as Christina so aptly said you will go into your surgery "with the power of knowledge"! All the best, Brian

 

[epstns]

Hi, Cooker, and welcome to The Waiting Room -- the virtual room in which many of us await our turns at valve surgery.

I'm another "probable" bicuspid valver, with aortic stenosis as a result. I'm 58 years old and have known about my stenosis for about 3 years -- much like Wise Smith. So far I don't have any of the "cardinal" symptoms (shortness of breath, angina, fainting) but I have definitely noticed a reduction in my athletic abilities over the past several years. (I still run/jog about 20 miles/week, but hove slowed from 7:30/mile to 9:30/mile over the past 3 years -- but I AM getting older. . . )

Currently my cardio has me in "watch and wait" mode with annual echo's and semi-annual check up's in the office. At this point all we can do is keep a close watch on it. I think that between whatever the cardio sees and says, along with how I feel, we'll know when the valve is getting "ripe" for replacement. Then it will just be "get on with the program." I've learned so much from the folks here that I am mentally comfortable with the situation (so far. . . ).

Again, welcome, and stick around. Ask questions -- I'll bet the answers are here, and the people are truly wonderful.

 

[Cooker]

Thanks For The Wecome

Thanks For The Wecome

It warms my heart to know that so many people care. Thanks for all of your replies. I wish all of you a very Merry Christmas!

I was talking to a fellow who had AVR about fifteen years ago and he scared me a bout the mechanical valve and Coumadin route. He said the Coumadin had caused him trouble and to stay away from it. I "was" leaning that way to avoid a second AVR (also scary). My cardio doc said if it was him (it's not ) he would go bio and have second AVR when needed to avoid Coumadin and the restrictions. I know this may be a premature post as I have not talked with a surgeon and may have to have a mechanical valve.

Any thoughts will be greatly appeciated.

Cooker

 

[EVELYN]

Hello Cooker

WELCOME!!! Great place, wonderful people who care about you.

I'm Evelyn, whose husband, Tyce, had AVR with a St. Jude's mechanical over 3 years ago. I have to tell you very honestly that the waiting room is the hardest place to be. We were very lucky in that Tyce was asymptomatic for about 5 years....he was just monitored every 6 months by our cardio.

The last year of the "waiting game" our cardio said that he would probably need replacement within a year....well, 6 months later Tyce was in afib and our cardio said that that was his sign. Three weeks later he was in surgery and the rest is history.

I guess what I'm trying to say is that we've all been where you are right now and understand what you're going through. We know, too, that you shouldn't wait too long to have surgery because you can have problems that wont resolve themselves. We were so fortunate to have a cardio who pushed surgery.....many don't, they wait and wait.

If you have any symptoms, please don't hesitate to have them checked out. Tyce didn't know he was in afib....he just had trouble sleeping...duh!!! Little things that may mean nothing to the normal person, can have a huge effect on the cardiac patient, so please be vigilant.

We're here for you and your family.

Evelyn

 

[Marguerite53]

Welcome to this great place! There are so many caring and knowledgeable people here.

I'm sorry that your doctor has made that remark about coumadin. There are many here on this site who can help dispell his reaction to the drug. Please wander through the many posts regarding coumadin, or ask a new question and start a new thread.

I have just found out that it is time to come out of the long term Waiting Room and go see a surgeon (January 9th) as my stenosis has slowly progressed from moderate to severe. I'll be 52 in a few weeks. You and I are at an age where the debate over which type of valve is the most intense, I think. We can, literally, go either way and see the sense of it.

Many of us have found, as we wait, that is it useful to have our records at home. You might consider asking the cardio's office to mail (or fax) you your echo reports. It is fascinating to learn to decipher the numbers, and it helps you feel more in the know and more in control of a situation that actually has control of us!

Best wishes!

Marguerite

 

[ALCapshaw2]

Welcome to our world Cooker !

You raised several issues that are common to Valve Patients.

Cardiologists and Surgeons have been debating the optimum time for valve surgery ever since it was invented. Now that surgery is seen to be HIGHLY SUCCESSFUL (98% for first timers under age 60), and cardiologists are (reluctantly) recognizing that waiting too long can cause PERMANENT DAMAGE to the heart muscle and walls, early intervention is becoming the standard recommendation (your internist was RIGHT ON).

First, I recommend that you spend some time (maybe a LOT of time) looking over the Valve Selection Forum to learn the different types and tradeoffs, especially Tissue vs. Mechanical. They ALL have positive and negative attributes. When given a choice, most of us choose one whose negative aspects we can best live with.

Second, I recommend that you look around in the Anti-coagulation Forum. A HUGE improvement in monitoring Coumadin by the INR (International Normalized RATIO) was made about 15 years ago which makes it MUCH easier to stay in range (often with only a Finger Test if you have a modern lab available...or your own HOME TEST machine). With rare exception, INR takes 'reagent sensitivity variations' out of the equation and gives much more consistent and reliable readings. Most of the Horror Stories you hear about Coumadin were from the 'early days' before good reliable testing was universal.

Third, after you are a little more educated on valve types and living with Coumadin, THEN start interviewing SURGEONS. Look for one who has lots of experience, particularly with the valve(s) you may be interested in. It is best to pick at least 2, just in case your first choice is not a viable option once your surgeon 'gets in there'. I recommend that you let your selected surgeon decide WHEN to proceed, since they like to operate before permanent damage has occurred.

It is a good idea to get copies of ALL of your test results (lab work, echo reports, and maybe even a copy of your echo tapes) to take with you when interviewing surgeons. I like to keep track of my echo report numbers on a spread sheet to better visualize CHANGES (something that Cardiologists rarely seem to do).

All that should keep you plenty busy as you wait for surgery. Just remember the Boy Scout Motto: "BE PREPARED" and that includes having a surgeon lined up BEFORE you become symptomatic.

One last thing: If we can do it, SO CAN YOU. Just remember, there are over 1000 members of VR.com who have all "Been There, Done That" and lived to tell about it.

Best wishes,

'AL Capshaw'

 

[aussigal]

Hi ...just wanted to pop in and say welcome from another Bicuspid valver in the waiting room...

this is the best place to be when waiting.

 

[epstns]

Well, Cooker, I guess all the cardio's are different. When I had a philosophical talk with my cardio about valve selection, he said that if he were going in for a new valve, at "our age" (mid 50's), he would opt for th St. Jude mechanical. He feels it is the Gold Standard at the moment. (This discussion was only a year or two ago.)

I'm just out here waiting. When we decide it is time to interview surgeons, I'll have to decide which route I'd rather go, but I realize that the final choice is up to the surgeon, depending upon what he finds when in surgery. As I get older (now 58) I may be getting closer to the age at which I can safely consider a biological valve with little likelihood of the need for repeat surgery. Time will tell. . .

 

[TomS]

Cooker,
They say these things happen after 40. I'm 48, had my AVR (mechanical) and aneurysm repaired this year, but was on "watch" since 1999. My advice is to forget about it all for the time being.
As to the valve choice, you'll need to ask yourself if you can better bear the thought of a 1% annual chance of a problem with coumadin, or going back for another operation. I saw enough of others around me that went through OHS to feel that I only wanted one time in the barrel.
I'm on Coumadin and I ski, fall down, cut myself shaving, etc. I don't seem to bruise any easier than I did before, and in fact haven't seen a black and blue since before surgery. It's not a big deal.
Know that many others have been in your shoes before you, and managed to make it through the process. In the meantime, enjoy yourself and have a Merry Christmas.
Tom

 

[Cooker]

Cooker,
They say these things happen after 40. I'm 48, had my AVR (mechanical) and aneurysm repaired this year, but was on "watch" since 1999. My advice is to forget about it all for the time being.

In the meantime, enjoy yourself and have a Merry Christmas.
Tom

Tom--thanks to you and all for your input. I wondered if I am to preoccupied with all of this. I have faith in my cardio and primary docs. With all the info from this site and the docs I seem to be settling down a bit.

I do plan to start surgeon shopping starting with recommendations from docs and freinds in the medical loop. I think I have also decided on the mechanical route unless something or someone changes my mind. I do not think I want to go back into surgery because I out live my valve choice.

Merry Christmas to all! Many thanks and many prayers.