Southern Oregon BAV Noob - PROBABLY

[Sean L]

Hi Everyone...

I've been lurking on the forums for a few days...here's my story:

I'm 43 years old...will turn 44 in early January.

Went in for a physical in October...Doc heard a loud murmur. Had the Echo and was diagnosed with Moderate Aortic Stenosis. They are pretty sure it's a bicuspid deal, but the echo was unable to confirm that part. The Cardiologist I saw last week said the echo shows I'm at 3.4 and I'll have surgery when I get to 5...

I wish I could say I was handling this news with more aplomb...but, the anxiety has been overwhelming for me. Near tears all the time.

Unfortunately, I was a smoker...but am no longer. Stopped right away when I found out...Fear it quite the motivator. I do have some weight to lose as well and have been walking quite a bit. But, the anxiety and depression have been draining my energy away the last few days.

I guess one question I have is...Why do they wait to do the surgery? Can I still consider myself somewhat "safe" until then?

My head is still spinning...thanks for all the encouragement..not just what you'll give me, but for what you've been giving others I've been reading out on here...

Sean

 

[Bina]

Hi Sean and welcome.
My story is very similar to yours in that I was the same age when my cardio doc said that I should be
looking into meeting a surgeon. When I got home and my husband asked me how the cardio visit went, I just
burst into tears. It was awful. I wanted to die right then and there....BUT several years later, I survived, am still
here and have lived to see my daughter graduate University. Life is good and will be good for you too !!
Regarding your echo:
What reading is the 3.4 versus 5.0 those sound like measurements for the aorta root or an aneurysm.?

 

[Sean L]

Hi Bina...

I was told (remembering correctly, I hope) that the 3.4 is the speed at which blood is traveling thru the aortic valve...? Feel like there is so much I don't know...

Thank you.

 

[epstns]

Sean,
I had a similar surprise (Doc asking "How long have you had that murmur?") when I was in my early 50's. The diagnosis of aortic stenosis is pretty concrete - that's what you have. The reason for the stenosis is the "maybe." Most stenosis patients are very old (like, in their 70's or older), so when they identify stenosis in a younger patient, they most always find that the stenosis is due to a bicuspid valve. They often cannot visualize the valve well enough in an echo to be sure, thus the "probable" designation. When they actually do the surgery, they will be able to confirm the diagnosis, but by then it won't matter.

Right now, you are reacting in shock to the diagnosis and its requirement for some significant surgery down the road. I, too, reacted in shock when I was diagnosed. As time progressed, I came to be able to compartmentalize my feelings and go on with my life. This was a good thing, as I waited over 9 years between diagnosis and the time at which we decided surgery was right. Basically, the doc's have some mathematical models with which they calculate your odds of death from your valve issue. If you are more likely to die in surgery (currently estimated at 2% or less) than just waiting, they will wait. When your odds of dying while waiting become greater than the odds of dying in surgery, they will operate. Of course, this is a gross simplification, but it is directionally valid. The doc's will recommend what they calculate will give you the best odds of living through it all. I don't mean to sound heartless (pun accepted), I am just trying to show you that a good cardio is using more than his/her own opinion and gut feel to advise you when to operate. They will tell you when you are in the "optional" range, but they should also advise you to wait if they feel that the risks are minimal in doing so.

While I was waiting, I continued with all of my hobbies, activities, work, family and other activities. I just did what I wanted to do, including running, working on home projects, travel - anything I would have done absent the diagnosis. It wasn't until the last year or so that I really began to notice the effect of my narrowing valve.

Now, as I approach the 10-month mark after surgery, I can tell you that it wasn't as scary as I expected. I've had my issues and some minor complications, but I have been back to normal activities since about 10 weeks post op. I feel better than ever, and refuse to act my age.

Hang in there -- once you get used to the fact that it will happen and it won't be as bad as you fear, you can get on with your life. If it all seems too much, I'd suggest that you seek help. Many of our members have sought medical/psychological help and found that it made all the difference in the world for them.

 

[RealtorRick]

I have been in the waiting room for 6 years. Cardio has monitored me every 6 months waiting for the optimal time to send me to surgeon. Just found out time is now and scheduled to meet surgeon 12/29. I am excited, not nervous. I am ready to be on the other side of surgery after 6 years of waiting . No real symptoms but better ask my wife, lol. Hang in there and keep the thought that you will be better after surgery than you are now. Read all the posts. They are encouraging. Most people say it was not as bad as they expected.

 

[Sean L]

Thanks for all your kind posts...Doing a little better...Happy Holidays to you all...and good luck, Rick!

 

[Sean L]

Question: Like Steve said, I have Aortic Stenosis. I'm still waiting for my cardiologist to call me back (of course I would get diagnosed during the Holidays...which means everyone is busy)...If I'm at 3.4 (gotta get a copy of my echo results) and they're waiting for me to hit "5" to have surgery (which is probably years away), what is that measurement of? The blood flow like I guessed above?...

 

[Lynlw]

Question: Like Steve said, I have Aortic Stenosis. I'm still waiting for my cardiologist to call me back (of course I would get diagnosed during the Holidays...which means everyone is busy)...If I'm at 3.4 (gotta get a copy of my echo results) and they're waiting for me to hit "5" to have surgery (which is probably years away), what is that measurement of? The blood flow like I guessed above?...

hi Sean, welcome.
Do you have copies of your results or remeber any other measurements? I'm a little confused because the 3.5 waiting for it to hit 5 sounds like the measurement of some part of the aorta getting that large, since 5 is usually the time they start talking surgery,for enlarged Aortas but since it is talking about enlarging, dialating or Annuerysm, that is a different things than Aortic stenosis which means the inside diameter, usually the Valve, is getting narrower or "stenosised" which would be a cmpletely different issue.different measurements for example it is 1.5 now and they would be waiting until it was under 1 or under .8 for surgery etc.

FWIW IF it is the measurement of the size of the Aorta and you are at 3.5 you COULD have a very very long wait IF you would ever need surgery. My son has been at 4.3 for a few years now. Since it is probably your first echo for all anyone knows you coud have been at the 3.4 most of your life and it isnt getting larger.

Do you

 

[themalteser]

3.4 ! If in the aorta, will not be a cause for concern at all. I think it's the velocity across the valve at 3.4m/s which makes it stenotic, however, I'm bit puzzled by the 5 measurement as that , I agree with lyn, will be the aorta. Mine is at 4.6 and it's still not cause for concern.

 

[Lily]

Ditto. What do those numbers mean exactly?

Many of us make a point to get copies of all of our tests and keep them in our own file at home. Operative reports too. I was shocked that the doctors wanted a copy of my operative report from my first heart surgery, decades previously. I didn't have it. It's likely been in a landfill for decades :eek2: So, having the reports on hand, even for our own better understanding and for comparisons, can be really helpful.

It's excellent that you were able to quit smoking! That very well may do you a whole lot of good.

Hoping you get better news. Glad you found the site. Best wishes

 

[BAVjohngo]

Waiting for surgery

Waiting for surgery

Hi Sean,

Welcome. It is difficult for me to answer why they wait for surgery. With each patient the condition of the valve varies quite a bit. Also, I'm finding there is a good amount of research on Bicuspid Aortic Valve disorders that need study. Before my Bicuspid valve was diagnosed I knew I had a murmur but didn't think much of it, I was landscaping, practicing martial arts, lifting extremely heavy weights at work. Everything a valve patient shouldn't do. Oh, yes and smoking during my late teens and early twenties. Its been a few years since my diagnosis and there are some regrets. For one, I feel I should have gotten my medication situation sorted out early on. Remember,each patient can be very different even with the same amount of stenosis. I suffered from angina for 2 years that was severe and my doctors claimed I didn't have it. Very confusing. After a mild heart attack and a three day observation with a catheterization in order to check the status of the coronary arteries I was finally put on beta blockers, aspirin, and statins. Once the medication is adjusted my quality of life improved significantly. I'm still waiting for surgery and my last yearly echo has pushed the frequency of monitoring to six months instead of yearly. I'd say get a second opinion for sure at some point. Make sure the echo is accurate and go to your family practitioner for any little concern you have. And by all means do what you can to not worry or manage your stress. Be practical. Eat less if you have to and make the necessary steps to change lifestyle habits if you feel the need or what to reduce your risks. If you seek alternative therapies as I am following get a family practitioner that is both a western medical doctor and/or trained in acupuncture. You'll have to make adjustments and change is a natural part of the process.

People live long lives with a bicupid aortic valve and there is plenty of information out there. New research is showing promise in a number of areas so even if surgery has to happen the good news is if another surgery is in the cards they are usually less invasive as they were in the past. I'm reading about several patients in this forum that have already had their surgery and I'm in awe. They are heroes to me.

My decision is to wait as long as I can. That advice may not be shared but after reading stem cell advances and other hopeful alternatives making headway I think cutting into the heart is something that may need to be done but someday in the near future may not be necessary at all.

As far as being safe, get a second opinion and if really question the echocardiogram is absolutely accurate. As the numbers get within the risk zone by all means ask or demand higher resolution imagery even if it means higher expense through other tests. It is your health. You can't gamble with it.

http://koluskomtustudios.com/wordpress/ is my BAV diet blog. I'm writing about supplements I'm taking as well as cataloging my weight loss goals. Feel free to visit. It is underconstruction and needs a good rewrite.

 

[Sean L]

Y'know...I feel so many different things right now. From being grateful for my family, and for you people on here, to big time anger that this has become something for me to deal with. Frankly, my BAV diagnosis comes at a low point in my and my family's lives. We live in a small town on the Southern Oregon Coast that is just in the crapper. We were hoping to move...and maybe that will somehow still happen. But, this has been one of the roughest Christmases ever. We have a 10 year old daughter who's just the greatest...and I've really been trying to suck it up for the holiday, but I'm sure she sees thru it at least a little bit. We've told her a little of what's been happening, but dress it up - for now - as a minor heart problem. Don't want my kid anywhere near as scared as I am right now. I have good friends, too...but, who wants to hear from some 43 year old crying guy on Xmas day? I'm posting this here because I think many of you will understand. WHEN will I stop worrying about dropping dead (3.4 Velocity/diagnosed moderate) any minute and accept that this is a long term deal that I have to live with? When will I accept it as a PART of me? As Steve said above...I am reacting to the shock of the diagnosis. My Cardiologist says it could be 10 years before I have surgery. I'm hoping that's true. But, it won't be any good unless I can learn to accept each day as a gift and live my life. Thanks for reading. The fact that there's SOMEONE out there who gets this even a little makes me feel a little better. And, despite my bitterness and anger over MY new situation, I dearly hope the best - and long life - for all you.

Thanks....

Sean

 

[Marguerite53]

Hello from PDX!!

It is quite a shocker when you first hear those words. It is okay that you are emotional. That means you love your life!!! Excellent!!! You should! Learning what you have learned will enable you to familiarize yourself with your condition (we're gonna help you!), change some of your lifestyle (you already have) for the better, and wait and wait and wait which will give science more time to develop new solutions before you ever need any surgery.

You are okay! You are LUCKY!! Honest!!

Take this slowly. Learn the kind of questions to ask your doctors from us. Don't be impatient to get your arms around all this -- it is complicated stuff. YOU HAVE PLENTY OF TIME! It will take some time for all the nuances of your condition to make sense to you. You are under the care of a professional. They will teach you (with some help from us since doctors are pretty silent types and we are gonna give you the voice to ask all the right questions) what you need to know.

I am 5+ years post op. I had to wait 3 years for my surgery to happen. I knew 25+ years before that it was an unlikely thing, but that I did have a bicuspid that might go downhill. Surprises like these are never fun. But please trust the doctor when he says you are probably fine for 10 years. He could be off by a few (either way!) but really, you can calm down (we understand that is an almost impossible directive) about it and just say, hey! I've got something I need to learn about.

Well... it is Christmas day, and now I have to get back into the kitchen! I just saw a fellow Oregonian and wanted to say hello!

Merry Christmas!! Breathe!!!!
We'll talk again soon.

Marguerite

 

[themalteser]

Hi Sean, firstly, may I wish you and your family a great christmas and new year. I know exactly how you feel, it feels like you're grieving your old self without this issue, anger, sadness, fear etc..... It's awful. I found out about my BAV 2 years ago, and was devastated. Still miss myself " without it ".

1. Why do they wait till they operate? Because the risk of operating is higher than the risk of leaving it alone, now, the ris of operating is around 2% or even lowe, therefore logically, the risk of leaving it alone is much, much lower, so yes, you are safe!!

2. Here in UK, such surgeries are free, so I would understand from hospitals if they take a lot more time to operate etc. as they want to save money, however in USA, insurances pay, and sometimes, individuals do, for them it's business at the same time. Why on earth are they going to let you wait, if they can get some money of you? Obviously, because you really don't need it yet.

3. Heart surgery is extremely safe and done to lots and lots and lots of people a year, it's scary, but safe. Course it's bloody scary, I would not want anyone to operate on my toe let alone heart, but this is called fear of the unknown, because heart, after all, is a muscle, extremely strong.

4. Listen to your cardiologist and don't fear of dropping dead, it's irrational. relax.

5. If they get it wrong, you can sue for loads of money, why on earth are they going to leave you like this if they are not 99% sure you're fine??

 

[Sean L]

Thank you so, so much...Means so much to me...Thank you.

 

[Nancy jane]

Hi Sean. & all - this was-is a good thread cuz who here hasn't had the worry after being told about their " situation

Sean. These folks - having been thru it - are a wealth of knowledge & information. I'm scheduled for Avr feb 9 2012/ st louis - after going from mild - to medium & now severe- over many tears. I too wondered way we couldn't do surgery while I didn't have symptoms etc. in other words do it while I feel great - but have been told symptoms trump everything. So I have 50 some odd waiting days and my only symptoms are shortness of breath when I walk too fast. So guess what - now I walk slow - lol. I am a professional speaker & have a very full January schedule which am hoping to get thru - & then go for it - and excited at the prospect feeling the old me again !! Both surgeon & cardio feel I'll do great both in holding my own til then & recovery - while in upper 60s am in pretty good shape! My biggest concern is that I get more sympto s before I can complete my january

So - my question is - to those who have gone before us - how fast / or slow does a valve drop within a month time. ?

Any info on that. I forget to ask cardio man. Will do later this week but was hoping for some input

Bottom line Sean. Stay happy & healthy & positive. Good luck & thanks to all who have helped us & continue to

Happy new year. Nancy Jane.

 

[Nancy jane]

That should have read - after many Years - not tears ! Whoops.

 

[Lily]

Nancy, I think it is pretty variable.

For me, I had a failing bicuspid valve; and the worse it got, the faster it seemed to get worse. Other members here have mentioned similar experiences.

(And in this space I edited out a lot of wordy stuff that meant nothing )

Best wishes

 

[epstns]

One thing I can add from a conversation with my cardio, prior to surgery. He told me that people rarely die from aortic stenosis. Most progress through the stages from mild, through moderate to severe, and at some point the patient calls the cardio and says "It's time." The patient notices either symptoms, or their quality of life gradually declines to a point beyond where they want to be at that point in their lives. This is almost always well before the critical stage when valve replacement must be done on an emergency basis. The only ones who risk death from the stenotic valve are those who either deny or ignore the situation (or were not diagnosed) and fail to react to their changing health. If you keep a watchful eye on your body, you will know before your cardio knows that it is time for surgery.

That is how it worked for me. I was in The Waiting Room for over 9 years. During that time I lived a normal life, but kept a watch on echo results, how I felt and on my exercise tolerance. When things got to the point where I was no longer satisfied with my quality of life, I made the appointment with my cardio to discuss surgeon referrals. At that time he said that purely based on my (lack of) symptoms and on my exercise tolerance (age-adjusted), he would not have recommended surgery. But since my echo numbers were in the range where most patients do need surgery, he was willing to proceed. His guess was that I could have still waited another 6-12 months, but I chose not to.

I relate this story to help you to accept the fact that a diagnosis of aortic stenosis is not a predictor of an impending adverse outcome. It is a warning to keep a careful watch on your condition as you continue to live as normal a life as you can. As your condition progresses, you will have fair warning before any surgery is likely needed. The hard part is getting comfortable with compartmentalizing your thoughts so that you can live a normal life and enjoy it while you're waiting. Sometimes time is the best tool for this. For the first few months after I was diagnosed, I was in a blue funk. I had trouble accepting the fact that I had a heart condition and would some day need surgery. As time passed, though, I began to realize that the diagnosis changed nothing in my day to day life, so I began to just live life.

 

[Lynlw]

Nancy, Since you aready have your surgery schedualled, I believe you will be fine waiting the month or your doctors would have insisted you have the surgery ASAP, or if it was really bad fit you in as an ER case- At least that is our experience with both my Moms and Son's different heart surgeries. Depending on the results some were schedualled weeks-months out and others were admitted and needed surgery the next day.
Of course IF you start feeling any worse, be sure to let them know.