Valve replacement on the mind!!!

[Lisa]

Hello, everyone. I'm so glad I found this site. I have a congenital bicuspid aortic valve.....and AVR has been on my mind for the past 2 weeks.

I had a cath in July of 2002 and a follow-up stress test in January of 2003. My valve was at .8cm2.....and it's time for another stress test. I am very slowly becoming symptomatic. I experience pvc's and shortness of breath from time to time...and it seems as if I want to sleep ALL the time. I'm sick and tired of being sick and tired!

I lost my brother 13 years ago during his 4th procedure. He was born with a monocuspid valve....and I guess I'm just really worried about this next appointment because of the family history. For some reason, it's gotten into my head that 2004 is going to be the year of my surgery. And, I KNOW that worry is payment on a debt that you may never owe...but thanks for listening! It feels so good to be able to share this with others that understand.

 

[derekzmom]

My son has the same thing. He is going to have a valvotomy at the end of next month. They are going to wait to do the Ross procedure on him hopefully for another 5 years, atlhoguh once they get in there it may need to be done now.

Hugs

Allison

 

[Kenny F]

Well, Lisa, you've come to the right place!

I am 5 weeks post-op. I had congenital bicuspid aortic stenosis. I had a homograft because of the distended aortic root, apparently common with this type of valve problem.

I was largely asymptomatic, very mild symptoms. Mostly we went by my echo. It turns out it was worse than expected.

I guess the bottom line is (and you will find this consistent on this site) is to prepare, gather your facts, and move forward BEFORE you become sick. It is easier to recover when we are healthy. I am 45 yo, am completely up and around, was released yesterday to do whatever I want.

I know it is scary (all will agree) but the alternative is worse. Please ask all the questions, search thru all the threads, get an education. If I can do anything at all please don't hesitate to ask.

Welcome to the best place to be for a potential valver!

 

[ALCapshaw2]

Hello Lisa,

I'm surprised your doctor hasn't recommended a consultation with a surgeon already based on your 0.8 cm sq effective valve area. My understanding is that number is one of the usual indicators. As the valve begins to close off, the Heart Muscle has to work harder, leading to wall thickening and chamber enlargement which if permitted to continue for very long *may* result in PERMANENT DAMAGE to the heart muscle.

Cardiologists often like to postpone surgery as long as possible. Surgeons like to operate BEFORE there is any Permanent Damage. I side with the surgeons on this issue and recommend a consultation with a surgeon ASAP, preferably one who has experience with your 'valve of choice'.

'AL'

 

[danilynn]

welcome

welcome

Lisa, As the others have said, you have come to the right place. My husband is 6 wks out of avr and doing well. The people here are wonderful! They will walk you through this, and give you so much help. Try to relax and enjoy the holiday season. You will be fine. I will be praying for you.

 

[dwfreck]

Lisa,

Welcome to the "Waiting Room." I've got a congenital bicuspid aortic valve, too. There's a lot of us pre-surgery, though some will be waiting longer than others. More of the pre-surgery types will be along soon, I'm sure.

As for your .8 cm*cm, my cardiologist said .9 or smaller was the usual threshold, absent other complicating factors (like regurgitation as well as stenosis, or coronary atery disease). However, the area of the valve opening (that's what I think we're talking about with the .8 and .9 numbers), is NOT the only measurement of concern with aortic valve defects. I've compiled a list of five "vital stats" for my aortic valve:

1) Valve area: size of the opening of the valve, measured in cm*cm.

2) Pressure gradient: change in pressure from one side of the valve to the other (left ventricle to aorta), measured in mmHg (that's milimeters Mercury).

3) Left ventricle hypertorphy: amount of thickening of muscle wall in left ventricle, measured in cm.

4) Left ventricle volume: amount of blood the left ventricle holds, both when contracted and when relaxed (called systolic and diastolic volumes, respectively, I think), measured in cm*cm*cm (I think).

5) Ejection fraction: amount of blood that actually exits the left ventricle during contraction, measured as a percentage.

Of those five stats, the first three seem to be the "leading indicators" for my stenosis, the last two seem to be for my regurgitation. There may be other measurements that I'm not aware of.

Your measurements, and particularly your stress test results, may not all be indicative of surgery, but it sounds like you are getting pretty close. I'm surprised you're not seeing your cardiologist on a 6-month schedule with regular echocardiograms. Ah, well, different cardiologists practice in different ways. Mine is definitely not in Al Capshaw's "postpone surgery" camp, he's in the "operate before permanent damage" camp with the surgeons.

Somewhere in the web I read a succinct rundown of the surgical thresholds for each of those measurements, but I can't recall it now. I'll update this thread if I find it again.

I can definitely relate to being sick and tired of being sick and tired. I've been fighting fatigue and/or depression for a couple of years now. First I thought it was just a mid-life crisis sneaking up on me, then I read some of the information on this site, and now I expect to have a whole different kind of crisis.

 

[epstns]

Dale,

I can understand the concern you (and I) felt at the "gentle" decline of our abilities over a period of years. It was just that decline that started the quest for knowledge and resulted in my finding out about my aortic stenosis. All the differences I've felt over the past 5 or 10 years now make sense.

I think cardiologists look at the statistics you've noted for indications as to when surgery is called for. They also look at each patient individually, as some people function fine with a certain valve area while others may have symptoms. I was told that because I am "small" that I can probably function normally and remain asymptomatic farther into the smaller valve areas than a large person. I take this info with caution, as I don't want to risk any permanent heart damage. If I notice a difference, I'm on the phone to the cardio to ask about it. (Just lately I picked up a few pounds of "Holiday Spread" -- but it was before the holidays, so cardio will do a more thorough exam when I see him in a couple of weeks.)

Lisa - I would agree with Dale, though, that from what I have read your valve area does put you into the "surgery sooner rather than later" category, and would certainly be pretty direct when questioning your cardiologist. Please keep us posted, too.

 

[Lisa]

Hello, everyone. Thanks for the support. It's so nice to be able to talk about this. My husband is supportive but he can not comprehend how all-consuming this can be at times.

Kenny, I'm glad to hear you are doing so well. Five weeks later and here you are. That's wonderful!

Dale & Steve:
Yes, I'm in the range for surgery; however, I am small and not overly symptomatic. My cardio told me at my last appt. that we would have scheduled surgery immediately if I were having more symptoms.

It is reassuring to know that I'm not the only one that has a battle with the alarm clock each morning. It takes a lot of caffeine in the morning to get me going!

Dale, As far as the depression, it is quite normal from what I've come to understand. It's really your body talking to you...LISTEN. That's the advice my best girlfriend (a nurse) gives me.

Thanks again to each of you. Wishing all of you and yours a very Merry Christmas and holiday season.

Lisa

 

[ALCapshaw2]

Lisa wrote:

"My cardio told me at my last appt. that we would have scheduled surgery immediately if I were having more symptoms. "

Symptoms are ONE indicator that there is a problem, BUT, it is NOT uncommon to have NO symptoms, yet have a very damaged valve as shown by Echocardiogram or TransEsophageal Echogram (TEE). It is fairly common for patients to say " I feel fine, why should I undergo MAJOR Heart Surgery?" only to discover that their valves are in much worse condition than thought when they eventually do undergo surgery. No one whats to undergo unnecessary surgery and no competent surgeon will proceed UNLESS there is a good basis for doing so.

To my mind, the most inportant numbers are the Valve Area AND heart chamber SIZE (i.e. is there any sign of Enlargement over time?)

Several participants on VR.com have PERMANENT Chamber Enlargement that could have been prevented simply by recognizing the signs (from Echocardiograms) and going for surgery BEFORE the enlargement became Permanent.

ScottVant (see members posts) reported that his heart enlarged over a 6 WEEK period and he is now restricted from doing the weightlifting he loves to do. Shortness of Breath and even Congestive Heart Fairure are potential problems that may arise from the permanent damage caused by an enlarged heart which developed in the final stages of valve failure.

You can check these numbers for yourself simply by asking for a copy of your Echo Reports and comparing the chamber dimensions (LAD, LVD, etc) or ask your Cardiologist if there is any sign of enlargement. There may be note to that effect in the written comments section of the Echo report.

I know the tone of this post sounds alarmist and in part it is meant to be. Once Permanent Heart Enlargement occurs, there is NO SURGICAL or Medical CURE. That is why I so strongly favor having surgery as soon as the MEASUREMENTS indicate heart enlargement is beginning to occur which *may* happen with NO SYMPTOMS that the patient is aware of.

Had I understood all of this earlier, I would have opted for earlier surgery.

'AL'

 

[Lisa]

Al: Thanks for the advice. And I know how serious this is. I definitely know...I'm 30 and lost my brother 2 days before his 15th birthday...that was 13 years ago. I also have an uncle with AS.

My next appt. is Jan. 21 and I'm to have a stress test and echo sometime between now and then. My doctor's office is in the process of scheduling my stress test.

I personally feel like now is the time because I am beginning to feel the decline in my abilities. I trust my cardio. He and I made a joint decision this past year that "there was still a little time." We even discussed a vavluplasty (sp?) but decided not to do it. We decided that it would only postpone the inevitable by a maximum of a couple of years at best. I decided that because of my young age it would be best to keep my own valve for as long as possible without doing permanent damage. My cardio says that with my factors..valve function, my size, etc. that we need to operate when my valve is around .6cm2.

So, having said all of that, what I plan is this: I am going to keep my appt. this next month and take it from there. It feels to me as if the time is right..so I'll see what my doc has to say.

I agree with everything you've said. This is the toughest part for all of us...the timing.
I will keep you posted.
Lisa

 

[Lisa]

Also, I'm going to pull out my copies of my echos, tee, cath reports from the last few years and compare them before my next appt.

 

[Heather Fisher]

Hi Lisa,

I also had a bicuspid valve. I was also born with a coartation of the aorta (Narrowing) which was repaired when I was 4 years old. I had my valve replaced this past July. I think the sooner the better for surgery, especially if you are beginning to have symptoms. This site is great. I used to think I was something of an anomaly with my valve and coarctation, but as you can see, we are in good company. Best of luck and be sure to come here with questions.

Heather

 

[Nancy]

Hi Lisa-

Welcome to the site. There's so much information here and wonderful friends who understand.

Hope to see you here often.

 

[medtronic of borg]

food for thought

food for thought

RE: your 2004 date
I look at it differently ...sometimes we know things but don't really want to admit it to ourselves. I think that is a error.

Second is your brother. I am sorry for your loss but I have a ? to ask you. Are you done grieving for him? And are you ready to realise his fate is not yours?

Med

 

[McCln]

Hi Lisa,

Hi Lisa,

Welcome to a great board. I was born with a congential heart murmur, affecting the aortic valve. Had it replaced over two years with a St. Jude's valve. Been better since. Education on procedures and practices is normal to do in your situation. I hope you get all the information you can get to be better informed. As for the sleeping, it is a problem. But when you do have surgery, you will get better over time and get your energy back. Take care and I will pray for you.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[ccrawford]

Hi Lisa - I'll add my welcome to the site. I would encourage you to read as many of the posts as possible, especially in the pre-surgery area. There are a lot of tips on getting ready and its never too soon to start. I had my aortic valve replaced this past April, was very anxious about some aspects, and the gang here did a yeomans job of getting my head screwed back on. My symptoms came on very slowly over 15 or 20 years, then got progressively worse in a short time period. Since surgery, I have felt better than I have in years and have returned to an active lifestyle. You have much to look forward to and I also urge you to ask as many questions as you need - there are a bunch of very helpful people here who understand exactly what you are experiencing. Chris

 

[Lisa]

Thanks for the welcome! I pulled out my last echo and cath reports show a valve area of .79 and ejection fraction of 60%. Peak gradient was 88 with a mean gradient of 52. The cath and the echo were done in July '02. I have an appt. scheduled next week with another cardiologist for a 2nd opinion. We'll see how this goes ! Thanks for the support!

 

[Nancy]

Here is a link with a description of the echocardiogram, reference numbers, and detailed information about the test, including discussion ofthe lack of continuity in interpreting the results.

http://www.chfpatients.com/tests/echo.htm

 

[ALCapshaw2]

Hello Lisa,

I was told that a valve area of 0.8 cm sq is one indicator that it is time for Valve Replacement Surgery. With your symptoms of fatigue and shortness of breath, I can't image why your Cardiologist is dragging his feet, especially since those numbers were from SIX MONTHS AGO. You REALLY need to push for another Echocardiogram. It might be a good idea to contact a surgeon on your own if your Cardiologist doesn't send you SOON (read immediately). You really can Wain TOO LONG with serious consequences.

'AL'

 

[Lisa]

Thanks, Nancy and Al.

I have an appt. next week with a new cardiologist and it's also a new facility for me...transferring my care to West Florida Regional Medical Center. I think this is going to be a better choice.