How can this be me!!!!

[Susan Allen]

When I turned 40 two years ago I felt like I hit a brick wall. I went to the doctor for back pain and he told me I had a heart murmur. I said I know - I've known since I was 19. he told me no you have a HEART MURMUR. I was then sent for a echo. The echo showed I have aortic stenosis. It is a congenital biscuspid valve and is very loud. I was having shortness of breath on walking short distances and was light headed at times and alot of times at night my heart beats were wild to say the least - I am overweight and had always contributed these symptoms to that - as did doctors I saw in the past. I got my blood pressure under control and have lost almost 75 lbs. The heart beat situation and breathing improved almost immediately when my blood pressure got under control. I had a heart cath. and it revealed all was good for now and my arteries were great and my card. told me it would be years before surgery. Well this past Feb. I had a routine echo and was told there was no significant changes. I had been reading more about my condition lately so when I had a rountine check 2 weeks ago I was full of questons. I almost needed the paddles when he told me I had gone from 1.0 cent. to .45 and my ejectin fraction was 38%. (I know I sound techinical but these 2 numbers are the only 2 I really understand).
I go for another echo this week and this was the first time valve choices were discussed. I had known but did not pay much attention because I felt I had plenty of time and by the time it was my turn medical science would be sooo much more advanced.
Rude awakening!!!!!! This echo will determine if something needs to be done now or if I can wait 6 months for a new evaluation.
Of course my nerves have had it. I cannot get enough about valve choices and I don't know how anyone could ever decide. I really can't see myself hearing a clicking noise - but the thought of another surgery is unthinkable.
Any pointers I could get on questions to ask would be so appreciated. I have some of my own but am afriad I may miss something.
Thank you for letting me tell my story.
I have a super great husband and kids who are always very reassuring and supportive - but only someone who' been in my postion could understand. I find all of you truly amazing.
Thanks again

 

[ccrawford]

Hi Susan - Welcome to VR.Com. It's pretty scary when you first find out the big scoop and start thinking about what it all means. I had a similar experience, and was in panic mode for awhile until all the nice people here helped me get my head screwed back on. My first panic was that I was a serious smoker and had fears about being "locked in a hospital" Well I managed to quit a two pack a day habit, and then started to face the rest of the anxieties including a big one about the respirator tube. One by one, all the anxieties went by the wayside, and when they wheeled my into surgery 4/23/03 I was pretty calm. 4 1/2 days later they released me, and I've been getting better every day with no major complications. If you go to a major heart surgery center, then they consider these type of surgeries routine, and the risks are pretty low. I'm not an expert re valve choices, and in my case I just let the surgeon decide because I wasn't ready to deal with it. You are pretty young, meaning that if you opted for a tissue valve, then you would be facing surgery again at least once, and probably twice more. I wouldn't wish that on my worst enemy. With a mechanical valve, you have a good chance of not requiring any more surgery. You will, however, be required to take Coumadin (a blood "thinner") Coumadin doesn't actually thin your blood, it just slows down the coagulation rate to minimize the risk of blood clot caused by the mechanical valve. Personally, I don't consider Coumadin to be a big deal like some do. I have hardly modified my lifestyle because I take it. Being a new member, you might want to spend a lot of time in the presurgery section and learn as much as you can. Ditto the Coumadin section, and of course the valve choice section. The way to get comfortable with all of this is to learn as much as you can. It can get a little overwhelming at first, so go slow, but keep at it, and pretty soon you will start to get comfortable. There are a lot of very expert people here with more experience than I, and we are all here to answer questions and help in any way we can. I know I was helped immensely by this site, and I'm only too happy to pay my dues by helping someone else. Chris

 

[Ross]

Hi Susan and welcome to the forum

First of all, take a deep breath and relax. Easier said then done, but you will be alright. I'm sure others will give more input soon, but until then I'll just say that if I were in your shoes, I'd go with mechanical only to hope that I'd never ever have to have the surgery again. It's no guarantee, but it's possible. Coumadin is not a huge ugly monster that it's made out to be. We can discuss that more later. I'm going to go find you a link and post it for you to look at on valve selections. I'll be back.

Here ya go:

http://www.valvereplacement.com/forums/showthread.php?s=&threadid=304

 

[Kevin M]

Susan, the panic and worry you feel now is all normal. We've all gone through it.

Personally, I found the more I learned about the decision making process, the less afraid I became.

Like Ross said - You are going to be just fine.

You don't have to understand everything about this process in one day. It is a gradual thing.

You've already done two smart things - having the descipline to lose the weight and coming to this website!

There are some wonderful, wonderful people here and they truly care. We are all here to help you and support you through this process, so let the questions fly.

Do not be afraid to vent, cry or share here. Think of this community as a big old shoulder.

Keep well and we look forward to hearing more from you.
Kev

 

[MelissaM]

Yepper. . .welcome to Stage One: Panic.

This stage includes vivid images of your chest being sawed open, anxiety over the thought of enduring much pain, and horror at the thought of a lifetime of coumadin. . .

As the initial panic subsides, you may experience any, all or none of the five stages of grieving: denial, anger, bargaining, depression, and FINALLY. . .acceptance. You have a lot to potentially grieve - changes in lifestyle and loss of health for starters. The good news? Your VR.com family will be there for you through it all. . . welcome to the club!

Melissa

 

[Nancy]

Hi Susan-

Just wanted to welcome you to this terrific place. We all understand what you are experiencing right now, but we're here to help you over the hurdles as you go along your merry way into the field of VALVES.

The site has more than you might ever want to know about valves, valve surgery and so many, many other things related to valves and not related to valves. Along with this heavy dose of breathtaking medical stuff, there is a little tom-foolery that goes on to relieve the tensions. We do have some fun as we learn.

There's a lot of heavy duty information here and it can be scary at first. You will read about people who have a limited number of problems and also some who have loads of problems. Just start out easy and read what you can handle, but little by little, force yourself to read more and more. You might not believe it now, but knowing more about your condition will make you less afraid. And you will be better able to handle surgery, if and when it happens.

There are many areas of the site, please investigate them all. There is much to learn. One of the best places to start is on the Main Page. Just go to the top of this page and click on the yellow logo, and it will take you there. There are some excellent Heart Links that Hank has found. They give a wonderful overview of all the parts of valve problems and valve surgery. There is info on different valves there. Also read the Personal Stories section. There are many inspiring stories there.

This site is devoted to LIVING the good life after valve surgery. It is filled with many, many brave warriors who have been there and done that.

Best wishes to you.

 

[EVELYN]

Hello Susan and Welcome HOME!!!

This is an absolutely wonderful site and you have found us all at the time you need to be here.

I'm Evelyn, whose husband, Tyce had AVR June 26, 2002. Believe me when I say, EVERYONE goes through what you are feeling now. However, with PANIC comes understanding, resolve, knowledge, and anything else you need to get over that mountain. Relax, Girlfriend.....you can and will be able to deal with it, and you are here at a wonderful place, with all the support you'll ever need.

Look over all the "old" threads on the site.....you will learn much from them. Don't put the cart before the horse and panic, even though we all did here. Take it one day at a time and you'll see everything does fall into place.

For us, valve choice was not a huge decision. Tyce knew he didn't want to go through this surgery again if at all possible, so we opted for the St. Jude's mechanical. Coumadin isn't a problem...sometimes a pain, but not a problem...That is down the road a bit....take it one day and one decision at a time.
Everyone is here for you, and you will get all the support you need and make some wonderful friends in the process.

Again, as I said, Welcome home.

Evelyn

 

[Susan Allen]

Thanks you guys for responding so quickly. Already feel better being able to talk to people who can relate. Taking advice and going to the beginning. Realized I am putting the cart before the horse and getting a grip on the PANIC. So glad I found you!!!!!!
Ever so grateful
Susan

 

[Susan BAV]

Hi Susan - I'm nearly in your boat, same condition although my EF is VERY high, and we are nearly the same age. But your measurements SHOCKED me too! Several months ago I was in a quandry because my cardiologist didn't seem to be taking my echo numbers seriously. I did some more research and KNEW I needed to find an aortic specialist. Fortunately, a well-informed lady, whose husband is a patient, referred me to a specialist who is relatively nearby and I will see him for more extensive testing and consultation later this month. Have you thought about going to Houston? Best wishes and keep us posted, okay? These people on this site really seem to care! From, (another) Susan

 

[sylviayasgur]

hi susan!
welcome to this amazing place. i'm sure that by now you can see that the members here are just so helpful, warm, informative and understanding. we are all here to help in any way we can.
i remember that feeling ... hearing that the time has come..... i remember feeling numb and then really, really frightened.

i agree with the others in that you should roam this site and do some investigating and exploring. read as much as you can about valve replacement and different valves.
there are numerous threads on this forum alone, which discuss different choices.
for us, knowledge was power. knowing more gave us a strong sense of control and that made us feel so much more secure about what had to be done.

please let us know what happens.
all the best, sylvia

 

[ShezaGirlie]

Big Texas welcome to you Susan...

Big Texas welcome to you Susan...

Hi Susan,
Welcome to VR.COM and panic all you like. We kinda 'get it' here..

I had my AVR in San Antonio in 1999 due to congenital bicuspid aortic valve -- just like your valve.

I know you're probably full of questions, so just ask away...meanwhile read, read, and read some more.. Loads of information on here.

 

[DANIEL]

Been there, am there

Been there, am there

Same boat as you - not the Titantic. Bicuspid aortic valve my whole life - AVR on 7/02/03 and am 80% back and kicking. You will be fine. Any questions, ask away !!!!!!!!!!!!!

 

[Georgia]

click click click

click click click

Just NOT an issue. I had surgery 6 months ago and can only hear it when in the bathroom when it's very quiet. It's a reassuring little sound. My suspicion is that it's become white noise for me, altho I never could hear it at night when some folks can. You really should take that out of the equation.

And welcome. There's so much interesting stuff here (well, interesting to us. I suspect much of it would put 99% of the world to sleep). You're fortunate to have found the site before surgery.

 

[Marcia]

valve

valve

I agree with Georgia, I only hear the valve when it is really quiet like in the bathroom or sometimes waking up in the morning. My 12 year old granddaughter swears that she hears it at other times. I told her that it is my wristwatch. My Dr. put in a mechanical since I am 55 and didn't want me to have to go through the surgery a 2nd time. I wanted a repair but it was not possible due to the condition of the valve. I am just so elated to have all this energy and to really feel good. I still get tired once in a while but I guess this expected at 56. Good luck,

 

[Susan Allen]

Thanks all I really feel better - Susan W. please let me know how you feel about the specialist you see in Houston. That would only be a 3 hour trip for me. I, like you, feel the same about my cardiologist. Some of the reading I have done and some of the stories I have read on this sight make me really want to give him the first degree. I had another echo today and you can be real sure I will be asking a lot more questions. From what I gather your like me I don't want to wait until I'm in bad shape before we do anything.
Thanks
Susan A.

 

[circulationguy]

Hi there! I'm new to this site and wish I had discovered it earlier. I was "finally" diagnosed with endocarditis--which damaged my aortic valve. The bacteria which damaged it is peptostreptococcus, very bad stuff, I was on the way out. I was suggested by my surgeon to opt for the homograph because of my age and other reasons which you may read of here. It was my decision though. Anyway, after much praying surgery was successful and I have never felt better. I have gained alot of weight however, (anyone else experience this?). Most of what I've read here is just fantastic. It is wonderful that you kind folks are helping others. If I can contribute anything, I sure will. To Susan, you are soon about to become a member of an elite club, you'll do fine, and you'll be glad of it. Richard

 

[Susan Allen]

Thanks for the the confidence Richard - I go this Wed. for another heart cath. - I had one 2 yrs. ago and know what to expect. I was told to expect that my condition has progressed. As you pointed out and I've learned from several others on this site that it is really bad to wait. The worst part right now is waiting for Wed. and results - I just want to know and proceed.
I have probably been feeling bad for so long now I am used to it - if that makes any sense. The more I read the better I feel about the whole thing.
If you could tell me a little about the homograft - is there much percentage of your body rejecting it??? What about fit?? - I have read that sometimes they cannot fit a person correctly? How about recovery time vs. St. Jude's valve?
Thanks Again Richard
Susan

 

[ccrawford]

Hi Susan - Me again. They treat the homograft in such a way that there is no problems with rejection - its like it was never a living thing. As far as recovery time comparisons, I don't think there is any difference, but your doc should answer that one. Hope that helps,
Chris

 

[ALCapshaw2]

Hello Susan,

I was given a St. Jude Mechanical instead of the Boving Pericardial Tissue Valve I wanted to receive. I only hear my valve if my heart is beating 'hard' or if I take a deep breath and hold it. Sometimes I do that just to hear it's reassuring sound and may even ask "can you hear me now"? I do NOT find it to be irritating as I thought before surgery. Some older valves or valves from other manufacturers may be louder.

Ask your surgeon about the Carpentier-Edwards Bovine Pericardial valve which is made from the pericardium of a cow's heart and shaped to resemble a human valve. This is one of the favorites at the Cleveland Clinic which is the #1 rated Heart Hospital. Durability is 90% at 15 years and some early inplants are approaching 20 years. Age is a factor in durability of tissue valves with younger people wearingg them out sooner than older patients.

Eventually you will find a choices that 'feels' right for you.

'AL'

 

[Susan Allen]

Thanks Al
Found a great website on the Carpentier-Edwards Bovine Pericardial Valve. It even spoke pain english. It was very very interesting reading. So sorry you could not get your choice but your pumping.
Thanks again Al - enlightened me greatly
Susan