Surgery Feb 2 AVR - Is what I am feeling normal? 50 yr YOUNG female

[SoCal Lori]

Hi - I have read alot of great, positive and informative posts here and am grateful I found this site. I have not met anyone or talked to anyone who has a congenital heart murmur that was never a problem then get AV disease. Although from my research on the web I now understand it is common. I am wondering how common though, my specific symptoms are and if what I am experiencing is related to the valve problem. I get light headed at times, dizzy too, paplations, some SOB and sometimes just get too tired to finish a task. I have my echo here and it says AV maximum instantaneous velocity 3.1 m/sec with maximum gradient of 39 mm/Hg and mean gradient of 22 mmHg. The calculated aortic valve area is 1.3 cm. Left atrium mildly enlarged, AV thickened. Left ventricle mildly dilated. Aortic regurgitation is moderate/severe, aotric stenosis is moderate. My angiogram and heart cath results were good, no problems there. Can anyone tell me from your own perspective with my echo results how I compare to others who have had AVR? I am getting nervous about it although I thought I was ready and prepared. I am having surgery at UCLA. Thanks for any input anyone can provide. Lori

 

[Nancy]

Lori-

Here's a site that discusses various valve problems and symptoms of each. Maybe it will help.

http://www.tmc.edu/thi/valvetype.html

 

[ALCapshaw2]

Hello Lori,

It sounds like you are 'on the road to AVR'. You may want to talk with a SURGEON about your results and symptoms. Surgeons tend to like to operate BEFORE there is any Permanent Damage to the heart muscles whereas some (many?) cardiologists like to postpone surgery as long as possible. I favor the surgeon's philosophy. Several contributors to VR.com have gotten to surgery 'just in time' and others discovered their vavles were more severely damaged than the measurements originally indicated. IMHO, the Surgeon's have a better frame of reference for determing the Timing of AVR.]

'AL'

 

[Bill Hall]

Hi Lori - I think you are having common symptoms for your condition. I read the web site Nancy referenced and that is also consistant. I was age 47 when I had my surgery three years ago and had virtually no symptoms. It seems the symptoms are individual for each person, since I had severe leakage, enlarged heart. I had my mitral valve repaired and aortic replaced with a homograft. Anyway, I wish you good luck with your surgery and hope someone will post your condition and recovery for us. I think you will have no problem getting through it, but it is OK to be nervous, that what happens to all of us.

 

[SoCal Lori]

AVR Symptoms - Am I normal ?/evaluating results of Echo

AVR Symptoms - Am I normal ?/evaluating results of Echo

Thanks Nancy, Bill and Al. I read the info at the site Nancy provided as well. I guess I just feel better talking to someone who has actually "had" the same symptoms as me. Although I know everyone is different and I am probably second guessing myself. I have seen two surgeons and two cardiologist and one internist and you are right- the cardios are much more prone to "wait and see" which I was not comfortable with especially since my internist orginally told me the results of the echo and "what we have found can be surgically fixed and prevent you from possible sudden death. It is better to deal with it proactively than in the back of an ambulance as an emergency." Think I am just nervous. Thanks for your words, they are appreciated.

 

[fisher6476]

Lori,
I am 52 years old. I am not one who was good about checkups and Dr. Visits throughout my life. Several years ago I started to notice some SOB after exertion nad after eating/drinking alcohol and lying down. I was a smoker and somewhat overweight. I wrote those symptoms off to just that, 50ish years old(not as young as I once was) SOB probably due to smoking, not exercising, being a little overweight. Kep telling myself I shopuld exercise more. Then I found myself exhausted at the end of the day, often going to bed at 8pm or before, even though I don't have to be in the office till 9am. (Man I have to quit working so hard. That must be why I am so tired, that and being 50ish and smoking and etc.) Next I found myself having an occasional dizzy spell. Never passed out, spells lasted 10 to 15 seconds I would guess, only happened once or twice a month. ( Man, I have got to slow down, quit smoking, lose some weight, I,m getting old!)
Next I found myself giving up one of my passions. On my day off I always got up very early and went fishing, often wading a river at daybreak and fishing for 6 to 8 hours. Just didn't seem to have enough energy to get up and go (maybe if i sleep in and then rest I will feel better, after all I am getting older, smoking, working to hard etc).
That is how my symptoms crept up on me, and how i rationalized them away. Were it not for the fact that I had one of my dizzy spells in front of my boss I would neber have gone to see the doctor. My boss "forced" me to go. Went to my PCP, told him of my symptoms and he immediately said "sounds like heart trouble"gave me EKG in his office, said it was abnormal and off I went to the cardiologist. Several test later I'm off to see surgeon for Aortic Valve Replacment and Anuerysm Repair. Drs said I was not a "walking time bomb" but I should get it done "soon"
I had the surgery within 6 weeks of orginal diagnosis and the day after surgery the Doctor said " I was wrong when I said you were not a walking time bomb. When I got in there all that was left of your valve was something non human. It looked like a stone pillar with a pin hole in the end of it. Your time on earth was numbered in days, not months!
This all came from bi-leaflet aortic valve that I was born with.
My suggestion from my experience, get evaluated, get educated, and if surgery is the fix GET IT DONE ASAP

 

[SoCal Lori]

AVR Prior Symptoms/Surgery Feb 2

AVR Prior Symptoms/Surgery Feb 2

Hi Fisher -
Thanks for the note. It makes me feel better to read your words and realize that I had been doing alot of the same thing......rationalizing why I was so tired and the dizziness. This was diagnosed in November, I think and I want to be in good shape (heart-wise) for my daughter's June Wedding and not "wait" for something more serious to happen. I am pretty pro-active when it comes to my health and feel good about the decision.

 

[tommy]

Lori,

Welcome to VR.com!

I too, rationalized syptoms and chaulked them up to age and sedentary lifestyle. This, even though I had an audible murmur and known defective valve.

I had been having annual checkups with my cardio. He kept telling me that "someday" the valve would have to be replaced. He was watching the enlargement and not wanting the heart to get too big to cause permanent damage.

One day, a bout of SOB, palpitations and dizziness sent me to ER and a follow up with my cardio. He said "it's time". I had time to shop for a surgeon and hospital, and to get some things in order.

The good news is that I was much better following AVR surgery, and recently even decided to get in shape. My cardio says that my heart is fine. It's rather amazing. Three years after surgery I feel 20 years younger. We are about the same age.

 

[SoCal Lori]

Hi Tom.
That's what I am hoping I will feel is younger. Five years ago I had a gastric bypass surgery and lost 185 lbs. from 320# to currently 135#. Since so much of my "younger" years were limited by my obesity, I am making up for lost time - and am told I look 40 (does my 50 year old head good!)! Then I started feeling tired all the time, dizzy and all these weird sensations where I could feel my heart beating funny and I though, heck, this being 50 is for the birds! You have relieved my mind - thank you!

 

[Ross]

does my 50 year old head good

Well I don't know, lets see you and I'll tell you.

 

[tommy]

Lori,

You're very welcome. Like you, I'm making up for lost time. I get pretty full of myself and my 40 lbs weight loss. BUT 185 LBS! My goodness! I'm so glad for your sake that you lost the wieght prior to the heart surgery.

Take care.

 

[Jean]

Lori,

All good info in posts above. One thought to add. I wrote a lot of my symptoms off to asthma. Even my family doctor kept prescribing more asthma meds. Until finally I insisted he refer me to a cardiologist ( I had known about my bi-leaflet valve since my 30's). He did and the cardio later said I was a walking time bomb and he was afraid that I had suffered permanent damage to my heart. Luckily I came through with flying colors and all the weakening and thickening has gone away. I am glad that you are keeping a clear head and being proactive.

 

[Lisa]

Hello, Lori.

Your story is very similar to many of us. I was diagnosed as a having a 'murmur' at birth when it was actually aortic stenosis. I too am facing AVR very, very soon.

I had a meeting with my cardiologist yesterday and he told me that we valvers begin to rationalize changes in our behavior, as Steve said. He said we find one reason or another to 'chalk it up to.' He says that basically we just stop doing a lot of things and rationalize it with 'oh, this how I'm supposed to feel.' Age, weight, lifestyle, etc. He says we're probably a lot more symptomatic than we know.

Myself, for example, it's only in the last 3 months that I've experienced any of the classic symptoms. And my valve has been severe for the past 1 1/2 years.

On a positive note, my doctor tells me that once the valve is replaced, valve patients report feeling much better than before. And are often elated because they didn't know how bad they really felt before the surgery because of all of that 'rationalization!' Isn't that something to look forward to?

Best wishes for a succesful surgery and speedy recovery. I think you're going to do great.
Lisa

 

[Raverlaw]

Lori,

Ditto to the others' comments.

I am 49 and knew that I had a murmur since birth. I remember being told at age 8 that the AV was "too small." No one ever told me to monitor it or what symptoms of progressive valve disease would be.

I have had increasing shortness of breath, a few instances of skipped beats, and a few bouts of blurry vision or dizziness, but like the rest, chalked it up to "old age" - after all, I'm going to be 50 soon, right?

My measurements are much more severe than yours, with a smaller effective valve area and much higher pressure gradient, so my cardiologist said I needed to get it done soon. This was in late November, and I had my angiogram done shortly after, on December 9. I'm scheduled for surgery three weeks from today, 2/20, and am looking forward to getting it behind me.

Both the cardiologist and surgeon assure me that I will feel better, and have more energy, than I have since my teens - this has been affecting me my whole life - I, like others, just accepted it and thought it was normal.

Congratulations on your weight loss - it will make you a far better surgical candidate. Good luck on your AVR - are you going with a mechanical or tissue valve?

 

[dwfreck]

Lori,

It sounds like your symptoms and experience are very typical. These are mine, so far:

I'm 39. I was born with a bucispid aortic valve. I've known about my AV all my life. I've also been seeing cardiologists regularly all my life. I've had the same symptoms you've described at one time or another. Some of them crept up on me, the same way yours did. I still have some of them. I've always told my cardiologists about any symptoms I had, and they have always used my reports along with regular echocardiograms to judge whether I needed surgery or not. At my September '03 visit, I told the cardiologist that the level of exertion that caused shortness of breath and/or chest pain had gotten lower (less strenuous). We did a stress echocardiogram in October (partially at my request, since they aren't usually done for AV patients), and an angiogram in November. We moved very quickly from "surgery likely in 3-5 years" before September, to "surgery needed in the next 12 months" in September and October, to "surgery definitely in the next 2-3 months" in November. I've learned a lot about valve replacement surgery since then, talked to two different surgeons, my family doctor, and my cardiologist again. At the moment, I'm waiting for a call back from the surgeons' scheduling coordinator so we can set a date for my surgery. We're a little behind the 2-3 month schedule we set in November, but I've spent the extra time learning everything I can about the subject.

 

[Heather Fisher]

Hi Lori,

I was also born with a bicuspid aortic valve. I found out about it in my 20's and was told it might need to be replaced, or might be good for life. I did have surgery when I was 4 years old for a coarctation (narrowing) of the aorta. This often accompanies a bicuspid aortic valve.

I was totally shocked when my cardiologist told me it was time to have surgery. Granted, I had been much more tired than usual, etc. Much of what I was feeling I attributed to older age and lifestyle. I work long hours and do a lot of driving. After I was told I needed valve replacement I noticed the shortness of breath more as well as some chest pain.

I am now 6 months post surgery. I had an easy recovery and went back to work 8 weeks post op. Some days I have a lot more energy than I used to. I still get tired but am attributing it to 11-12 hour days. I would say just go ahead and get the surgery over with. You are much better off getting it done before you run into problems! Best of luck!

Heather

 

[SoCal Lori]

Feb 2 AVR On-X Mechanical - UCLA

Feb 2 AVR On-X Mechanical - UCLA

Thanks so much to all of you who posted comments. I feel like this is where I belong and know I will be active in asking and (when I have more experience) answering others questions. It's nice when you are new to a site to have others step up and give feedback. It makes my mind rest easier. Ross - I take you comments as a direct challenge!!!! As soon as I can get my hubby to help me figure out how to post a picture - you'll have it - and then you can decide! How's that?

 

[Ross]

Works for me!