Newbie with Aortic Stenosis and terrified!

[DeuxofUs]

Hi All,

I am so glad I found this place! I was diagnosed last Wed with Bicuspid Aortic Stenosis. I feel like the world has stopped.

For the record, I am 41 year old female.

All my life I was told I had a heart murmur. I can't tell you how many doctors would say "do you know you have a hissing sound?"

In 2007, I was at work and felt faint. In fact, my heart jumped all over the place and I had to hold on to the copy machine to not pass out. The next day, I went in for a echocardiogram and was told everything was fine but that I had a small murmur. I chalked up the near passing out episode to stress. Why wasn't the defect found then?????? HELLO?



Around mid time last year, I started to getting heart beat issues. Racing heart, and was diagnosed with dangerously high blood pressure. This all seemed a bit off to me given my age but, it DOES happen. Otherwise, I am a pretty healthy individual. I eat very healthy, my cholesterol is good, don't smoke, don't consume caffeine and I am pretty active (I don't like to sit in one place for too long) In July 2010 I had a echocardiogram which showed my murmur. My cardiologist didn't say much except for the fact that we needed to keep an eye on it. In fact, she didn't even give me a name for what I had. Why did she keep this from me?????? I didn't think anything of it and came back for my check up last Wed Feb 16th.



When she came in (I'm still clueless at this time and trying to make my grocery list in my head), she sat down and told me that things weren't looking good. I have a congenital defect in my heart called Bicuspid, Aortic Stenosis.

When I was last checked, I was 1.7 and in only 7 months I have dropped down to 1.0 So, I will need to have open heart surgery maybe sooner rather than later. I could either stay at the 1.0 for an indifinite amount of time but considering my decline in the last several months, it could be as soon as in the the next couple of months. RIght now, it's a waiting game. She said surgery in the next five years but given the decline, wouldn't that be fairly soon????? I hate sugar coating... I'm not twelve.

I feel like I can't breathe in the middle of the night and now I swear I am having chest pain ever since I was told this. I suffer from anxiety on a good day so this has really put me into trainwreck mode.

I have almost finished Adam Pick's book and it has helped a little in easing my fears. Before reading it, I was considering the Ross Procedure and now I feel pretty confident in my choice.

I'm terrified of just dropping dead and I am not even doing my normal walking exercise around my work campus. I feel like I am as fragile as glass. I HATE THIS.

Anyway, I hope you will allow me to join your community.....:thumbup:

I'm still in shock mode

 

[Kimberly]

Hi & welcome!
I can't offer you any advise, I am very new myself! I have found so much information as well as comfort on this site as I am sure you will as well.
I think the part that is so hard to accept is the waiting, like your cardio saying 5 years or sooner.....it is like living in a storm waiting for the calm.
I am 44 years old so not that much older then you. My heart disease diagnosis was in August but only in the last month have I learned that my mitral valve regurgitation is moderate. Very scary times, makes that stent I am sure to get seem so simple right now
Anyway, welcome and hopefully all of the other folks here will help to answer your many questions!
Kimberly

 

[Jeff Edmonton]

You have good attitude, you are lucky you found this site before surgery , many do not and I have not been on here that long. It looks like you have started the climb up the mountain, there is a wealth of information here and a great group with a flowing dynamic that will speak from the heart (<3) and help you through your journey.
shock is good, the alternative is bad....Good luck

 

[drivetopless]

Hi, Deaux and welcome-
Your note really spoke to me as I know EXACTLY how you feel. I was told I had a murmur all my life, too. I was 33 when they finally found my Bicuspid Aortic Valve with Aortic Stenosis (1.0cm). They told me to expect surgery in the next 5 years. Well, I had surgery 13 years later. My valve sat at 1.0 cm for 10 years and then was starting to narrow. The waiting is the hardest part.

I remember when I was first diagnosed, the anxiety and shock made me feel like I was having a heart attack. I became hyperaware of every little sensation in my chest and hyperventaliated a lot. As time passed, I became less anxious and the symptoms got better. Gentle exercise helps with the stress. I just made sure I didn't do any bootcamp/marathon style exercise while I was waiting to see what happened.

.7cm is usually the trigger point for surgery, though they will do it almost anytime you are below 1.0cm. If you have symptoms like fainting, they may do it earlier. It sounds like you are being monitored closely, so that is good.

Please let me know if you have any questions. You are surrounded by 1000's who have had this. It is very common--about 1-2% of the population has a Bicuspid Aortic Valve. The good news is there are several surgical options for fixing it and then you will be as good as new.

Hugs!

 

[ALCapshaw2]

Welcome Aboard Deux !

Fortunately, there is a Lot of GOOD NEWS in your diagnosis.

First, it was found BEFORE you became critical. That is a HUGE PLUS.

Second, just about anything that goes wrong in the heart can be FIXED in this day and time by Surgeons who have lots of experience dealing with YOUR issues.

I encourage you to look over the Bicuspid Aortic Valve and Connective Tissue Disorder Forum for LOTS of relevant information on your condition.

I also encourage you to start talking to Surgeons immediately since Aortic Stenosis 'can' proceed fairly rapidly (one of our old expressions is: "The Worse it Gets, the Faster it gets Worse", especially for Aortic Stenosis).

Be Sure to ask ANY and ALL Surgeons that you interview about how much experience they have dealing with BAV and Connective Tissue Disorders which are often associated with congenital BAV. It is very important that the surgeon know how to recognize defective tissue and how to deal with it. I believe Dr. Laks (and others?) at UCLA is/are well versed in these skills.

Some of our members have had Valve Replacement surgery in/near San Diego but I don't recall any who had BAV and CTD.
Personally, if I had BAV, I would not feel comfortable with a Surgeon whose experience is primarily dealing with Coronary Artery Bypass Grafts (80-90% of all Heart Surgeries) and an occasional 'Valve Job'. The Major Heart Centers are typically where you will find Surgeons who deal with the more 'complex' cases.

'AL Capshaw'

 

[Duff Man]

Welcome to the waiting room. I don't think your doc is sugar coating it for ya. It's a real possibility that you could be waiting at 1.0 for a good long time, or it could get bad very quickly and you're in the OR in a month or less.

I'm not sure if anyone has mentioned it in this thread, but the bicuspid aortic valve is strongly associated with ascending aortic aneurysms. In fact, it's associated with aneurysms throughout the body, but mostly near the valve. Make sure you're keepign an eye on the aorta, that's all I'm saying there.

FWIW, my heart spontaneously does the mamba pretty frequently. Most of this is caused by PVC's, and some is caused by an arrhythmia known as SupraVentricular Tachycardia. Neither is fun. I have a bicuspid aortic valve, I'm at 1.7 cm2 and I'm 27 years old. For me, surgery may be indicated either by a narrowing of the valve OR the widening of the aneurysm. It's not clear which will happen first. I sometimes wish that the valve would get bad fast... maybe if I passed out in the grocery store and woke up with a new valve and graft for my aneurysm... that'd be kinda nice.

Anyway, welcome to the best site available for support for your valve.

 

[Superbob]

Hi, I wanted to add my welcome to the waiting room. I would echo the positives Al and others have mentioned. You've been diagnosed, you're being monitored, and these problems -- scary though they seem -- are fixable with a high degree of success. I, too had a murmur that was detected in my 20s. My time for surgery came when I was 63. My condition also was congenital. As Duff Man suggests, make sure they are checking out the possibility of an aortic aneurysm developing as well. I had both the leaky valve and aneurysm addressed in the same surgery. Am doing well now, six years later.

It is completely natural to be anxious about all this. But I hope you will find peace of mind as you study this more, examine perspectives of the wonderful people on here, and listen to what your doctors tell you. Wishing you all the best....

 

[DeuxofUs]

Thank you all so much for your replies. It's nice to feel like you are not alone. As far as the aneurysm goes... is that something she would have seen on the echo? She did tell me that the rest of my heart looked excellent.

I am really thinking about the Ross Procedure. SInce I am in So Cal, I am thinking of getting done either at Cedar Sinai or USC..... why don't more people get that type of surgery?

 

[Freddie]

Sorry I can't answer your last question there Deux, I just want to say "Hi" and Welcome.

 

[Duff Man]

Thank you all so much for your replies. It's nice to feel like you are not alone. As far as the aneurysm goes... is that something she would have seen on the echo? She did tell me that the rest of my heart looked excellent.

I am really thinking about the Ross Procedure. SInce I am in So Cal, I am thinking of getting done either at Cedar Sinai or USC..... why don't more people get that type of surgery?

It's my understanding that the Ross procedure is more technically challenging than a straight forward AVR. It also has the potential of turning a single valve problem in to a double valve problem. I've also read that the pulmonary valve in a bicuspid patient may be compromised because of the competency of the bicuspid person's connective tissue being .. questionable. There is also the reimplantation of the coronary arteries that in my opinion make the procedure more risky, both shortly after and long term. It's also unclear if you have any dilation of the aorta. If your aorta is dilated enough, it will need to be replaced while they're in there, and usually that involves a dacron graft.

I just rattled off a lot of cons, but there are probably just as many pros. I would personally start talking to a surgeon about these things. They're not shy about their recommendations.

Sometimes the ascending aorta is not well visualized on an echo, but they usually do some measurement of the aorta's diameter. Most surgeons seem to prefer a CT Scan for measuring the aorta's diameter, but an MRI can measure its width too.

 

[ottagal]

Hi Deux,
Welcome to this fantastic site. You will get tons of support, input and handholding while you navigate your way through this 'heart' journey. You're introduction really resonated with me as that is exactly how I felt when I was told I would need open heart surgery within 6 months to 2 years. I had a murmur since a young age; however, it never bothered me, stayed active all my life, was monitored every 3-5 years and frankly NEVer thought it would ever become an issue.. Fast forward to 3 years ago when I received the news that the stenosis was now 'severe'. I too was totally unprepared and in 'shock'. The first few weeks after this diagnosis, I would stay up at night afraid to fall asleep, was panicking and could feel every heart beat and breath I was taking.
What I found helpful to get me through the waiting period was to garner as much information I could on my health issue c so that I felt knowledgeable and prepared and it gave me some semblance of control. I received amazing support from the wonderful VR members and did alot of self care such as moderate exercise, meditation, yoga etc. I also found that once the 'shock' wore off (which took a good month or so), I told myself that I had to continue 'living in the moment' as the worrying of all the what ifs was taking its toll. So, I tried to set aside worrying time. I don't know if any of this will be helpful for you. Just know that you are not alone and look at all the members on this website who have walked in your shoes and are now 'on the other' side cheering others over the finish line.
We are here for you.
Take care,

 

[Greg a]

Deux of us. a heart felt WELCOME to our OHS family glad you are getting the information that you are seeking and there is swealth of knowledge here for the future .....
a list of acronyms and short forms http://www.valvereplacement.org/forums/showthread.php?27413-List-of-Acronyms-and-Glossary

what to ask pre surgery http://www.valvereplacement.org/forums/showthread.php?26668-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/forums/showthread.php?19034-Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well
.

 

[DeuxofUs]

Good lord you people are smart...... thanks again for the welcome... I plan on becoming an active member... I'm a take charge kind of person... I can be stubborn yet strong. I am positive and I know I will be ok. I just need to get through the initial shock. I WILL BE OK. This sounds wierd but I hope I need the surgery sooner rather than later... so I get just be done with it.

I feel better already with my new family.

Deux

 

[spartangator]

DeuxOfUs, you'll find that many here share a similar story and are very happy to support you as things progress.

As AL Capshaw and others mentioned, there is a ton of good news in your situation because it can be dealt with in a way that will offer you full quality of life. Where you are now is scary, but you'll talk to lots of surgeons, decide what's right for you, and move forward in your life from there.

You have the whole community here behind you.

 

[ALCapshaw2]

Thank you all so much for your replies. It's nice to feel like you are not alone. As far as the aneurysm goes... is that something she would have seen on the echo? She did tell me that the rest of my heart looked excellent.

I am really thinking about the Ross Procedure. SInce I am in So Cal, I am thinking of getting done either at Cedar Sinai or USC..... why don't more people get that type of surgery?

The Gold Standards for observing and measuring the size of Aortic Aneurysms are either a Chest CT or MRI. Aneurysms near the aortic root may be observed during an echo but for some reason they don't seem to be found by echo higher in the aorta. I'm not sure why that is the case. I believe Duff Man posted a copy of one of his CT's which clearly showed the aneurysm.

Ross Procedure outcomes are Highly Dependent on the skill and experience of the Surgeon. The most prolific RP Surgeon (over 400) is Dr. Paul Stelzar(sp?) in New York. Dr. William Ryan in the Dallas-Fort Worth Area is another respected RP Surgeon. It is my understanding that the Cleveland Clinic (#1 rated Heart Hospital) no longer recommends the Ross Procedure for adult patients because of a high number of 'early failures'. It is also my understanding that many surgeons will not perform an RP on a patient with a (congenital) Connective Tissue Disorder. Another young female member (with several co-morbidities) had an RP with a surgeon who had performed 75 RP and she did not survive.

EDIT - Here is an excerpt from another member's post who asked CC's Dr. Pettersson about the Ross Procedure

Look for the post made by ctyguy on 2/7/09 at 9:19am

an excerpt:
Someone asked about the Ross Proecedure and Cleveland Clinic. My surgery was at C.C. and my surgeon, Gosta Petterson, told me that the re-op rate was over 20% within 10 years and that is why he does not recommend it any longer. He logic is if all you have wrong is a bogus AV then go with a tissue or mechanical and stay a one valve patient. The Ross procedures makes you a 2 valve patient. Thats what conviced me to be more of a "traditionalist".

END EDIT

Member "StretchL" had an RP with Dr. Stelzar in NY and has a Photo Journal of his surgery at the following link:
Stretch Ledford
2006 Ross Procedure Pics & Docs: http://stretchphotography.com/avr
Audio Slideshow: http://bit.ly/8ZgxPn

'AL Capshaw'

 

[Marguerite53]

Hello and welcome to our wonderful community. I feel as if you are already feeling better now that you've found us. Excellent! We all know that feeling!! :wink2:

My wait for AVR (aortic valve replacement) was 3 years once they measured me at 1.0. Everyone is different, of course. Use this time to learn about your choices, meet some surgeons, listen to our success stories.

Cardiologists, many of us have discovered, do not like alarming their patients by telling them things. It is very frustrating and hey, there's the internet now -- don't they realize how much more we are likely to know and be able to read about? My original cardiologist (since my murmur was detected 25-ish years before my surgery) had retired so I was using a wonderful gentleman, Pakistani, but I simply could not understand his halting English. He also was not connected to the hospital I wanted to use for my surgery, so I changed cardios. I'm very glad that I did. So I am wondering if you might want to talk with your cardio and ask he/she why he/she isn't more forthcoming with real information about your condition. You are entitled to have had full explanations sooner (I think) than you have. Then, if you are not satisfied, go ahead and shop around! You probably have plenty of time. My cardio was the one who referred me to a surgeon. You may have other ways (and many here have taken the search upon themselves) to choose one. You are going to have a continuing relationship with this person after your surgery. You will have regular check ups and want someone you trust and have good chemistry with. Just a thought.

As far as surgeons go, most don't want to see you until you are actually ready (numbers or symptoms) for the surgery. Mine wouldn't see me until I'd had the angiogram and my cardio wouldn't order one until my numbers were right. I finally asked her, "well, what is the magic number when we call in the surgeon??" For me it was .7 cm sq

I'm a little concerned about your symptoms. Please be sure that you tell your cardiologist about any which concern you or even feel odd. He/she may poo-poo it (another truly aggravating situation for many of us) but he will be able to judge whether they are serious or not. Chances are, most of the ones you are feeling are quite possibly related to your heart's burden and will evaporate after your surgery.

One last thing... my cardio, the one I still see and really do adore, told me once that she hadn't wanted to tell me some things for fear of my getting anxious. She said I seemed like an anxious person because I was asking so many questions. I turned to her and said, well, the fact that you're not willing to offer me lots of information on this is what is causing me anxiety, now please answer my questions!! We had a good laugh about that. Doctors! :rolleyes2:

Don't be shy about asking us anything -- not much we haven't felt or wondered or heard.

Best wishes.

Marguerite

 

[Duff Man]

Good lord you people are smart...... thanks again for the welcome... I plan on becoming an active member... I'm a take charge kind of person... I can be stubborn yet strong. I am positive and I know I will be ok. I just need to get through the initial shock. I WILL BE OK. This sounds wierd but I hope I need the surgery sooner rather than later... so I get just be done with it.

I feel better already with my new family.

Deux

Nothing about wanting to "be done with it" sounds weird to me AT ALL, and I totally empathize. A nurse once told me though that we should focus more on living than dying. I struggle every day to keep my anxiety about my valve and aorta in check. May it come much easier for you.

I have found that although fraught with side effects that some can't tolerate, beta blockers do reduce the frequency and duration of my palpitations. Beta blockers also tend to reduce the risk of sudden cardiac death in many studies. http://www.annals.org/content/123/5/358.short

 

[jklump]

cbscqn

cbscqn

Hi Deux!
I just found this site last month myself. It's great. I am 61 and was diagnosed with AV Stenosis 3 years ago. I too was in shock and disbelief . I was at 1.4 when discovered and now it's .8. I am having surgery on March 4. We are both lucky in the fact that it was discovered early and we can have fixed before we get into any trouble. The people on this forum are great!. They have given me lots of info and re-assurance.
You will be fine!
John

 

[epstns]

Hi, Deux!

I'm usually the one to welcome new members to The Waiting Room, the virtual place where many of us wait our own turns at valve surgery. I missed your post as I am now preparing to leave the waiting room myself. I was diagnosed with aortic stenosis (narrowing of the valve) almost 9 years ago. I still remember the shock when I was told that I would need heart surgery "in 5 to 10 years." I guess I'm right on schedule.

Most patients with aortic stenosis are very old (in their 80's or so) and many cardio's don't really feel comfortable treating younger patients with the condition. I fired my first cardio because of that. I then searched for a cardio who was around my own age and who specialized in valve disease. I also did my homework here on vr.org. The new cardio then explained to me that although the typical aortic stenosis patient is elderly, there is a small portion of the population (around 5%) that have bicuspid aortic valves (valve has only two leaflets, rather than the "normal" three). It has been found that a portion (IIRC, about 5 to 10% of the bicuspid valvers) eventually develop symptoms of aortic stenosis while in their 30's, 40's or 50's. We're the "lucky" ones in that 5% of the 5%. Each patient's valve degrades at their own rate. Mine was measured at 1.2 cm2 about 9 years ago. It remained relatively constant for about 8 years. During that time I continued daily jogging and weight workouts. It wasn't until I was about 61 or 62 that things began to really slip. Even though the numbers don't demand it (my valve is now at 0.9 cm2), last December I told my cardio that "It is time to get this done." Since then I have met with two surgeons, have chosen one, have chosen my valve, had all my pre-admission tests and am now "5 days and a wake-up" asay from having my valve replaced.

I relate all this to bring you to one point -- I learned of my diagnosis. I was in shock and denial. It took a couple of months for me to realize that this is not a death sentence. I learned all I could, reached a point of comfort in knowing what I needed to know, then simply got on with life. I continued to do everything I always did (and then some) until I felt that the valve was getting in the way. Only then did I go into the next phase. Early on, I practiced what I call "compartmentalization." I did my daily research, then I stopped worrying about it and got back to my "other" life. This ability has kept me sane while waiting for an extended time. The time has allowed me to be totally at peace with my decisions regarding which valve, which surgeon, which hospital, even what time of year to do this. I think I am more calm now than I was those first couple of months after my diagnosis.

So, keep a close watch on your health -- heart and otherwise. Spend all the time you can here and ask all the questions you wish. There isn't a better place (that I know of) to learn from folks who have already traveled the path. They are a wonderful group of people who share and support most willingly.

Welcome to The Waiting Room!

 

[Protimenow]

Hi, Deux (or, deuxofus):

It's good to have you here.

I had a bicuspid aortic valve (determined to be congenital, rather than a result of rheumatic fever, after surgery). I learned that I had a murmur when I was 23, and told that I would need the valve replaced 'in 25 years.' I was slowing down after about 15 years, but always had that damned valve somewhere in the back of my mind.

I started getting PATs (paroxysmal atrial tachycardia) in my late 30s - and these were quite scary and may have been what you were feeling. The heart races, the blood pressure surges, you can feel the blood pulsing through your neck and all external vessels, and it's scary as hell. It's also, apparently, not particularly dangerous and can happen at somewhat unpredictable intervals. I don't know what triggers it. I thought it was related to my valve problem - but was told that the two were unrelated.

In my late 30s, I also started getting an arrhythmia - a 'third' heartbeat. As my doctor at the time told me 'you focus on it with your third eye.' I was very careful to feel my heart beating. My doctor at the time also told me that I'll be needing surgery soon. I was down for a week, feeling dread of surgery, and probably many of the things you may be feeling now. A cardiologist I saw after this warning from my former physician told me that surgery was still a few years off -- but I had annual cardio exams.

Now -- here's some information that may be a bit controversial - I'm just saying what I did, not what you should necessarily do:

At 41, my heart function was declining, but I was still pretty healthy. I had a good job and good insurance. But my heart was enlarging. I couldn't be as active as I wanted. My body was always pale because I wasn't able to get enough oxygenated blood running through it. I asked my cardiologist 'how sick do I have to be?,' and he decided that the time was right.

8 months after surgery -- six months after coming back to work -- I lost my job. No insurance, no benefits, etc. I'm not sure if I lost my job because I was costing the company (self-insured) too much for medical, or if there were other reasons. I just know that if I had to wait, I would probably have had to go a long time without the surgery. I can't predict what an employer will do when it knows that an employee WILL be needing an expensive surgery - and that the medical premiums it pays may rise and the employee will be out for weeks - but this may be something to consider.

That said -- welcome aboard. You'll be getting a lot of personal experiences, and some advice here. I hope that we can give you great support and useful information.