New member

[wweir]

Well, it?s now my turn. I was diagnosed with aortic stenois in early 1999. I am a 56 year old who is a senior executive in the computer business. Lots of stress but also lots of fun.

My personal situation started when I complained of a slow heart beat in 1998. I was given a holter monitor and echocardiogram in early 1999. These tests resulted in the implantation of a pace maker in March of 1999 and uncovered the fact that I have a bicuspid aortic valve that needed to be watched. This past April I went for my annual physical and the doctor said, ?You should have another echo since it has been a few years since the last one?. Well that resulted in further tests like a TEE and a cardiac heart catheratization. This took us to today.

So today I went to the surgeon who advised me that I should have my aortic valve replaced in the next few months. He told me that my arteries are very clear so the only problem I have is the aortic valve condition. While apparently not critical at this time, my doctor stated that a health heart has an ejection fraction of around 60 and mine is currently sitting at 45. He claimed the difference is caused by the narrowing of the aortic valve and the fact that my heart is enlarging. By the way I currently exhibit no symptoms at all. I actually feel pretty good.

He then went on to discuss with me what the various types of valve(s) I could receive. He offered options that covered the entire list that I read about on this site. He did tell me that the more involved the value selection, like the Ross Procedure, the more time the operation might take and the possibilities of complications increase. I then said if it was you, what would you do? He said the mechanical ? St Jude.

I then asked how many of these have you done. He stated several hundred; he is someone by the way who is very laid back and not hyper at all. I then said have you been successful, he said ?most of the time?.

So I am now having a glass of wine and trying to figure out what to do. I know I must do this, but it is a hard decision. In reading all your posts I get a feeling that things will work out and all will be ok. I do worry about the heart lung machine issues, clotting, stroke, and the whole coumadin thing.

I look forward to ?chatting?, with you as time goes on. I have been really impressed with your openness and friendship.

Walter

 

[Sunshine susan]

I remember when....

I remember when....

Hi Walter! You have surely come to the right place as this is just about the best bunch of people with a common bond anywhere on earth. When not traveling with my work, I read most every night, but don't actually post often. (I'm actually more seasoned that it appears as when our computer got a virus, I started everything over when fixed. I was sitting here at the PC, drinking a glass of wine, reading your post, and it brought back memories. I had a St. Judes implanted February 1999 due to a congenital bicuspid valve. As for my age, let's say I have received my first package from the AARP--a far more bitter pill to swallow than the surgery was! When I discovered I had a problem, found during a routine physical, I did a lot of research. Two things struck me as a result: 1) I didn't want to spend any more time than necessary on the heart/lung machine due to the possibility of problems from it & 2) I only wanted to know I was doing the surgery once (hopefuly). That is why I chose the St. Judes. But certainly, others may have differing opinions. I have to take Coumadin, yes; but that is a small price to pay and I have really had no problem with it. I will likely be going for a home testing unit as with my work schedule, getting the monthly blood test is sometimes difficult, but too important to let slide. As you get closer, we can all talk to you about the surgery, but in a nutshell, it really wasn't that bad. At least not for me. Not a lot of what I would call pain, but you have to really get your exercise and breathing back as soon as possible. It does take concerted effort. I was walking 4 miles a day by the end of the first 2 weeks and was back at work full time in 6 weeks. At this point, I am lucky to hardly feel as if I ever had the surgery--for the most part anyway. It does feel a little different and I do have a slight click. I do just about everything I ever did in moderation--drink, eat, have fun, etc. I, too, have a very stressful job and sometimes I am probably under more than I should be, but it's not an option, so I just deal with it. Well, I'm sure others will want to talk, so don't want to monopolize the space. But stay in touch here. You will find it very helpful indeed, down to the nitty gritty details when the time comes. Good luck! Susan

 

[Tom Harrison]

Like you I had no symptoms until becoming ill last fall. I was losing weight, suffering night sweats and had no energy. However no shortness of breath, no chest pain. Because I had a regular pulse and blood pressure and no family history of heart problems I went undiagnosed for two months while they ruled out most cancers as the probable cause. Then the doctor heard a murmur and the next thing I knew I was slated for surgery. I was unaware I had a bicuspid valve and now it was infected. Not sure from your account if infection was a factor for you? I was to dazed to ask questions and the surgeon I was referred to recommended a mechanical valve due to my age (54). This was to hopefully avoid the need for further surgeries. The brand of valve used never came up in the conversation. I now have a valve by Sulzer Carbomedics. They appear to have a very good track record. The fact that I would be on coumadin for the rest of my life was discussed but not the INR level maintenance part. So here I am recovering from the surgery, getting used to the noise of the valve and adjusting my coumadin intake as I try and stabilize my INR levels. But I do feel better and would not have made any other choices even if given the opportunity.

 

[wweir]

Thanks

Thanks

Susan,

What a really nice reply. I thank you for being my first responder and taking the time to tell me of your experience and letting me know things will be OK. It is for this very reason that I submitted my first post to this really wonderful forum.

I really think that with support like yours things will work out and all will be well.

Thanks again and here is a toast to you. I want to also toast whoever started this site - thanks from my defective, soon to be fixed, heart valve.

Walter

 

[wweir]

Tom,


Wow this is incredible. Two notes in such a short period of time.

I do not have any infection but I did have a crown replaced last week and was given penicillin prior to and 30 min after the procedure. Chipped a tooth.

Again all I can say is what a group!!! We all ought to get together one of these days, something like a high school reunion.

Thanks Tom and I am glad you are doing so well. Gives me confidence.

Walter

 

[Ross]

Hi Walter!

You already see what kind of friendship developes here.

My case isn't much unlike your own. I first posted back in December 2001 and like you, I was faced with the same questions that tax your mind. My doctor has said he'd use the "Gold Standard St. Jude mechanical valve" also, if anatomically it will work for me. I've been opened before and most of my aortic root has already been replaced or messed with in one form or another, so this surgery is going to be a challenge.

Read all you can here and check the personal stories also, if you haven't already. There is so much knowledge and experience on this forum, that I have found no better place!

Hank Eyring is the founder and webmaster of this great place and I don't think any of us can thank him enough for putting a vision into action.

 

[ALCapshaw]

Hello Walter,

First, if your heart is enlarging, that means it is compensating for your aortic stenosis. You DEFINITELY want to get the valve replaced before any PERMANENT damage is done to your heart muscles.

Second, at age 58, two different surgeons told me I was in a 'gray area' regarding valve choice. Both recommended either the St. Jude Mechanical (VERY reliable and reasonably quiet but requires Coumadin) or a Bovine Pericardial Tissue Valve made from the pericardium of a cow's heart. Durability numbers are 90% at 15 years and counting, much better / longer than typical porcine valves, but still likely to require a second surgery in your 70's. The BIG advantage is that Coumadin is NOT required. That was my choice but for other reason's my surgeon felt a mechanical valve was the best option after he was 'in there'. You may want to ask for more information on the Bovine Pericardial Valve before making a final choice. Be sure to ask about effective area of both valves and lifetime restrictions / implications of each choice.

'AL'

 

[sylviayasgur]

hi walter!
welcome to this wonderful site. as you've already noticed, everyone here is so caring, informative and wonderful.
peter easton started a fabulous thread last year entitled "making the choice". many have found it to be quite helpful.
you can find it at:http://www.valvereplacement.com/forums/showthread.php?s=&threadid=304&highlight=making+the+choice
please let us know hwat you end up doing.
my father, 68, has had a st. jude's for 3 yrs and is very happy with it. my husband, joey, 49, had a ross procedure about 9 months ago and is happy too.
the choice is a very personal one, but as anyone here will tell you , there really is no wrong choice. either way you win.
please keep us posted. good luck and be well, sylvia

 

[Christina]

Welcome to our cyber family..

Welcome to our cyber family..

Hi Walter,

You've certainly come to the right place, so pull up a chair, get a cuppa and let loose with the questions. We are here to help and support because most of us have been where you are now, so know what we are talking about.
I had AVR surgery almost 2 years ago now and had very few symptoms other than night sweats and being tired, but I contributed those to menopause problems. Never did I think it was my heart valve that was going bad, but it had been slowly over the years since birth. It was by pure accident that I found out, and I was near "sudden death" I was told so surgery needed to be done a.s.a.p.
My surgeon recommended a mechanical valve and that's what I received. I am happy with it as I hope to never have this surgery again. But anything can happen though and this surgery is not without risk. If you read my personal story (personal story section on this site) you will read that I had a second valve surgery within eleven days after the first because I got a blood clot due to a too low INR reading.
I did fine during both surgeries.
Surgery is not that bad after all. Painpills readily available when you need them. There is just quite a bit of discomfort at first and it is difficult to sleep for long periods of time. Once you are in your own surroundings it gets better every day.
I am doing my own INR testing and have the Protime Home tester (see ad on this page) and I do pretty much everything I did before I had this surgery. Coumadin is no problem once it is stabilized. It took quite a while to get mine stabilized, but it also depends on the doctor. If he doesn't know how to regulate the dosage it can screw you up royally, and it can get pretty scary, especially when you are just out of surgery and everything is so new.
Medication, OTC meds and greens all interfere with Coumadin but that doesn't mean you shouldn't eat the greens. Everything in moderation and check with your doctor about the OTC meds. Regular meds the pharmacist will help you out also.

Below is a site that might be of help to you.

http://www.cardiacconsultants.com/valvesurgery.htm

Let us know how we can help you more!

Christina
Congenital Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St.Jude's Mechanical

 

[Nancy]

Hi Walter-

Welcome to this great place. You already have many friends who "get it" as far as valve surgery.

My husband has had 3 valve surgeries. He has an older aortic mechanical by Bjork-Shiley, implanted in 1977, a St. Jude mitral mechanical implanted in 1999, and had a repair on that valve in July of 2001. He also has a pacemaker. He had rheumatic fever as a teen. He's also had many, many other very serious medical problems, and through them all, his heart has been fine. Without this heart "fixer-upper" surgery, he wouldn't be here.

The surgeons who do this type of surgery are highly trained and highly skilled. They take things very seriously and they can get together the best surgical teams in the OR. You'll have excellent nursing care and all in all, you'll be in good hands. It's lifesaving surgery and according to my husband, he's had other surgeries that were much worse than valve surgery. I have to believe him, he's had lots of experience.

As you can see, when you ask questions, you'll get lots of answers. We're an opinionated group. So ask away and before you know it, you'll be helping others through this as well.