I am new, going in for surgery Feb 11th

[SarahL]

hello everyone, I was so happy to find this forum. I have not talked to anyone who has gone through this surgery and it made me feel a little better after reading everyones posts. I am 39 years old and live in virginia.
I have aortic stenosis with regurgitation that i have had since birth. I was always limited to what i could do physically. I saw my cardiologist every year for all the tests. When i left home and got married i didnt see him but every couple of years. I always thought my mother over exagerated my condition and was too protective of me. After my 3rd child was born in 1997 i quit going to the cardiologist and i havent seen him until last sept of 2007. so 10 years have gone by since i saw him last. I went in because my family forced me to go. They saw all the signs of my condition getting worse, tired all the time, short of breath, dizzy spells etc. I went in and of course was given the 3rd degree for waiting so long to see him. But i had all the tests, and i had a heart catherization done and i got the bad news. My heart valve has worn out. and the doctor said if i didnt have it replaced he didnt know how much longer i would make it. I broke down on the table because all these years i didnt really believe there was anything wrong with me. I kept denying it.

I am terrified of haveing this surgery done. The thought of me going on a heart lung machine, and working on my heart, and the thought that what if t hey cant get my heart started back up again is scary. I know i have to have it done. I have passed out at work a few times in the past 2 months. I am now so tired that it takes all i can do to just get up. i cant sleep well at night, but i can sleep on and off all day. im always short of breath. I can no longer do the things i use to be able to do. I have had to quit work this week. And everyone that sees me tells me i look like death warmed over. My friends get mad at me because i never want to go out anymore, and my kids say the same thing. But they dont realize how bad i feel and they dont understand. I tell them that if they felt as bad as i did they would understand.
Does anyone else feel the way i do or have felt this way. I need all the support i can get. Thanks for listening .
Sarah in virginia

 

[Bridgette]

Hi Sarah

I just wanted to welcome you here and to say that I wish you all the best for your upcoming surgery - I am sure you will feel so much better afterwards.
I know the thought of it is really scary and I can relate to how you feel because I was so scared before my operation....BUT you will be fine.
Read up all you can on this forum and elsewhere which will help you understand all the ins and outs of surgery, and ask heaps of questions because there are some very knowledgeable and helpful people here.
All the best

Bridgette

 

[geebee]

Sarah,

Welcome to our family. What you are feeling is very common and very normal. It also sounds like you are way past due having this fixed. Try to be comforted by the fact that the chance of not making it through OHS these days is only about 1-2% - very small indeed. You have 100% chance of dying if you don't have surgery so, as the saying goes, you do the math.

We will help you get through this. Just let us know how we can help. I have done this 3 times and am still going strong so please keep things scheduled and guarantee yourself a great life of feeling much, much better.

 

[Rich]

Sarah,
You are in the right place, welcome to this forum.
As was stated being scared is certainly very normal, but the odds are heavily in your favor.
I had a lot of the same symptoms when my valve got really bad, but now almost twelve years later I'm still going strong.
So read the posts and don't hesitate to ask questions, there is a wealth of experience here.
Rich

 

[robertr]

Exodus 15:2

Exodus 15:2

Hi Sarah,

I too was very troubled over facing the surgery. Now, 19 Mos. 2 days Post-op, it is hard for me to believe it ever happened... Please trust me on this - it is NOTHING like you think it will be. I was walking 4 miles/day 10 days post-op and on day 5, I insisted they reduce my pain relief down to nothing but Tylenol, and that was enough. You will be fine! Your going to feel so much better you will curse yourself for waiting so long to address the problem.

Trust Him!

Psalm 46:10

 

[Magic8Ball]

It ain't that bad, its just the anticipation of the unknown that you are worried about.

Had i known then what i know now i'd have been even more relaxed than i was before surgery, & i was already relaxed by a few months of posting and quesitons on this site.

I'm about 14 months post op and feel as normal as you could expect, my heart is fine, its my bad back, dodgy wrist, weak hamstrings etc that cause me hassle not the heart stuff.

Take the time to read further and ask questions, you will find the calm place like i did in no time.

 

[Karlynn]

Welcome Sarah!

To put it bluntly - you're saving your life by getting your valve replaced. To not do it would only lead to a worsening condition ending with you losing your life at way too young an age. Yes - the surgery has a 1 -2% mortality rate. Not having the surgery will give you a 100% mortality rate.

My children were young when I had my valve replaced so I really understand the anxiety associated with being a parent. I had a ton of symptoms and was very physically "un-well". Because you are experiencing so many symptoms your recovery will probably be a little longer than those who go into surgery not having any signs their valve was bad. Your body has been compensating for your valve by forcing you to decrease your activity and what you do. So it will take a while to regain that. Recovery for any valve replacement is not a short process - we're talking months - but I wouldn't be surprised if you feel better than you do know very shortly after your surgery.

 

[BackDoc]

"The thought of me going on a heart lung machine, and working on my heart, and the thought that what if t hey cant get my heart started back up again is scary. I know i have to have it done. I have passed out at work a few times in the past 2 months. I am now so tired that it takes all i can do to just get up. i cant sleep well at night, but i can sleep on and off all day. im always short of breath. I can no longer do the things i use to be able to do. I have had to quit work this week. And everyone that sees me tells me i look like death warmed over. My friends get mad at me because i never want to go out anymore, and my kids say the same thing. But they dont realize how bad i feel and they dont understand. I tell them that if they felt as bad as i did they would understand."


I am not a psychologist, but I did stay at a Holiday Inn Express one time. Everything you are feeling is normal. However, you are obsessing over the wrong things.

This is an excellent site, and there are very knowledgeble people here. You will get excellent advise from those who "have been there, done that".

The best advice I can give is to start visualizing yourself as you want to be, the end result, over surgery, with an excellent result, healthy and back to being your old self.

The more you continue to feel like you do, the worse things will be for you.

 

[Blake777]

Hello SarahL, I remember when I first came here and I was as scared as you. I went in knowing that I had know choice if I wanted to live and that's really how I got prepared. I wanted to live and be here with my children. So I prepared myself to get through the surgery no matter how much pain I was going to go though. I was blessed with a grandchild a year later. Most people don't have much pain, you'll probably be one of the lucky ones, I know you can do it. And yes, I'm having the exact same symptoms as you are right now, dizzy, tired and out of breath because I have stenosis also. I didn't have a replacement like you're getting ready to have, I just had a repair of my valve so now I have to redo the surgery. So you will get the right surgery the first time! So just pray and prepare everything will be fine. (He will not put upon us more than we can bare). BLESSINGS!

 

[Philip B]

We've been there!

We've been there!

Sarah,

Yup, as noted in previous posts, lots of us have been where you are and know how you feel. I got the "third degree" for ignoring my defective aortic valve too, but I ignored mine for twenty-seven years.

Your concerns and fears are normal too. OHS tends to be hard to get your head around because it's a big deal. I suspect many of us faced the worries about whether or not the surgical team would get our hearts restarted. It is comforting to know that success rates for AVR surgery are quite high. Personally, it didn't take long for me to realize that my odds of surviving surgery and enjoying life were much greater than the odds of me surviving without surgery. Following my surgery, my surgeon told me that he figured I had between six weeks and six months before my aortic anneurysm would have blown.

I guess that the short story here is that you're in good company and we're glad you're going to get your heart issues resolved. We'll be here to try to help you get through this and we really believe you will get through this.

-Philip

 

[Superbob]

Hi Sarah in Virginia. Your situation sounds similar to mine prior to surgery. I was told in my 20s that I would eventually need AVR, and my time finally came in my 60s. It was scary, sure. We all go through that anxiety; it is normal. But the improvement in quality of life makes it worth it. Your surgery will be near the third anniversary of mine. I am enjoying a new lease on life, as are others here, and you will too. We will be here to cheer you on and try to answer any questions you may have. All best to you....

 

[Curtsmum]

Hi Sarah,
Being scared is all part of the package, iam terified too although it is my son who will be going through the surgery and not me. Everybody on here knows what you are going through, so glad you found the forum. When my son had his first surgery he had no symptoms and still doesn't now because you are having symptons i can only guess that you will feel so much better after surgery and will be glad it is all over. Most people say that the waiting is far worse, your mind runs away with its self, once its over you just have to concentrate on getting better. Wishing you all the best and keep the questions coming.

 

[WayneGM]

Welcome to the VR Community, Sarah. I'm sorry for the circumstances but glad you found us.

My heart problems came as a complete surprise. I did not have a history on any heart issues and then by surprise during a routine annual physical, my GP noticed a loud murmur that wasn't there before. I little over a year later, I was in to have OHS to repair my mitral valve. I didn't even have any noticeable sympotoms. Needless to say, I was quite anxious about it as I had never been really sick or injured a day in my life so the thought of being in a hospital for an operation was simply unreal.

Unfortunately, I didn't find VR.com before my OHS so did not have the benefit of the collective experiences here. To be honest, I was "pleasantly" surprised. The OHS was not nearly as bad as my fears envisioned. In fact, I was really surprised how quickly it was over and how quickly I bounced back. The worst part was waiting to have the OHS and then the slow pace of physical recovery post-op (I'm not a patient person by nature).

Now my heart is repaired, with no permanent damage, and I have absolutely no regrets. In fact, not only is my heart fixed, but OHS has given me a new perspective, and respect, for life in general which I think has given my a new lease on life.

Best wishes and good luck on your journey over the mountain. We're here to help when you need it.

 

[DebbyA]

Hi Sarah,

Yes, I think we all go through the stages of shock, denial, anger, terror. I don't know whether it's harder for those who have to process all this in a short period, since I'm in the group of those who have knowingly had it hanging over us for years.

For any surgery, you reach a point where you realize you can't control the outcome. All you have to do/can do is show up and let the experts you have chosen carefully take over. That is the peaceful place you want to be, and the sooner you can get there, the healthier you'll be for your surgery. Believe me, I'm a gifted worrier, if I can do it, so can you!

One of the best things about this forum is the spectrum of experience available here. A lot of it is positive, not just a collection of medical horror stories. You have just joined a truly special community.

Your symptoms sound much more severe than mine. If you read through the Reference Sources forum, look for guidelines for valve surgery. It may help to see your condition described there.

I think it would be good to ask your doctor for sleeping pills. Several good nights of sleep--even if you are napping during the day--will make you feel better. A psychiatrist we met once told us "the body doesn't need 8 hours of sleep, it's the mind that need 8 hours". Also ask about exercise. Even if you can take a couple of 20 minute walks a day, or whatever length, it will help.

Best wishes from Debby, also in Virginia

 

[Mary]

Welcome to VR, Sarah!

If you look at the number of members on the site, you will see that there are a whole bunch of us out here that have faced the situation you are in and came through it alive, well, and happy to support others going through the same thing.
You are young, and that is always a plus in a faster recovery.
Have you met with a surgeon? Where will you have the surgery? Will you have help after you return home?
I hope we can help with any questions you have.

 

[SarahL]

I want to thank everyone for the words of encouragement. It has been a big help. Ive known all my life that i would eventually have to have this surgery but i didnt think it would happen until i was alot older. I have seen the surgeon several times and he is great. I was told he is one of the top sureons in my area. So i feel really comfortable with him.
Im getting the surgery done. I was suppose to have it the 2nd week of December but i postponed it becuase i was waiting to hear from disability, which i just found out i was approved for. I have noticed my symptoms have gotten worse, so i know it is the time to get it done. IM a single mom of 3 kids and i want to be here to see them grow up, and i also want to get back to enjoying life like i use to. So im ready to get this done and over with. Everyone is right tho, this waiting is the worst. just a little over 3 weeks to go.
So far everytone has been wonderful on here and im so glad i found this site.

 

[ALCapshaw2]

I want to thank everyone for the words of encouragement. It has been a big help. Ive known all my life that i would eventually have to have this surgery but i didnt think it would happen until i was alot older. I have seen the surgeon several times and he is great. I was told he is one of the top sureons in my area. So i feel really comfortable with him.
Im getting the surgery done. I was suppose to have it the 2nd week of December but i postponed it becuase i was waiting to hear from disability, which i just found out i was approved for. I have noticed my symptoms have gotten worse, so i know it is the time to get it done. IM a single mom of 3 kids and i want to be here to see them grow up, and i also want to get back to enjoying life like i use to. So im ready to get this done and over with. Everyone is right tho, this waiting is the worst. just a little over 3 weeks to go.
So far everytone has been wonderful on here and im so glad i found this site.

Sarah,

Have you told your Surgeon that your symptoms are getting worse? He needs to know this. We have a saying on VR.com that goes: "The Worse it Gets, the Faster it gets Worse". If I were in your situation, I would ask if the surgery date can be moved up to minimize the deterioration you are experiencing. You may also want to ask your Cardiologist for a repeat Echocardiogram to document any changes.

(FWIW, I had a 2 month delay between when I was advised to proceed with AVR surgery and the time it took to meet the surgeon and schedule surgery. I went from 'needing surgery' to 'getting there just in time' as my symptoms had become more pronounced. I've been an advocate of "Sooner is Better" ever since!)

Do you have a copy of your Echocardiogram?
It would be interesting to know your 'numbers'.

'AL Capshaw'

 

[netmiff]

Sarah, first of all WELCOME to the forum !

I am 52 years young,was diagnosed with a very mild heart murmur in 1985, and about 6 years ago, with aortic stenosis, and was told then that "someday" I would need the valve replaced. Well, I have been followed up by a cardiologist (annual echos) since then, and last year he decided the time had come - I had been thinking maybe by the time I was 90 years old. Well, although I had known for some time, it still came as a shock, let me tell you. I was s**t scared, I mean OHS - the heart-lung machine, actually working on my heart, having a mechanical implant, pain afterwards etc., everything about it scared me.

The worst part was the waiting - the surgery, well, you are sleeping, in fact they kept me out cold for 2 days, except for a couple visits from family, I remember nothing of it at all. I was out of hospital in 6 days, and at home I had nothing but over-the-counter Tylenol for the pain. I was working from home the day after I got home (in my PJs and between naps !), was using public transport 3 weeks after the surgery, and opened a new retail store barely 3 weeks after surgery.

The one thing I do wish is that I had found this site BEFORE my surgery, not after, and I am sure it will help you get to this side of the mountain, as we say around here.

Yes, there will be days you will feel like you had been hit by a truck, but those get fewer and further apart. It IS a major surgery, but it is not nearly as bad as you think, really ! I would do it again in a heartbeat (pun intended).

 

[marie]

I know the feeling. You've come to the right place. Everyone here is very helpful with lots of knowledge. When I found out it was time for surgery I was really freaked. Then I calmed down and now I'm pretty up tight as I am just a week away. If the worry is the worst part then I'm almost done with the worse part. Although I am 66 so I have no children at home, I do have five grandchildren from age 16 to age 2 and one on the way so I really want to get well for them. Good luck and keep asking questions.
Earline

 

[Phyllis]

Welcome, Sarah and I am so glad that you are scheduled for surgery and have accepted that this needs to be done. You are young and you will do fine and be here to enjoy your children for many years to come. Best wishes to you and be sure to check back with any and all questions.