New to site - Aortic valve replacement in future

[Lorimacm]

Hi,

I am new to this site - found it while searching around to learn more about Aortic Valve replacement.

My doctor tells me I will need valve replacement some time in the near future but will not elude to how long. I have a bicuspid aortic valve and have known about a "heart murmur" since I was 12. Despite several echos over the last 10 years no one has ever told me I had a bicuspid valve until September 08. I was feeling poorly after the first of the year - increased palpitations, short of breath, fatigue and some leg pain and swelling. So I decided to go in early and not wait for my annual check and low and behold the valve opening had narrowed from 1.5 cm to 1 cm. In my mind I thought that was a significant change in such a short period of time. So I go back in mid-September to check again. Fatigue continues and some dizziness - I have not passed out thankfully. I am trying to do my homework on best hospitals and doctors - not sure if I have enough faith in my physician at this point since he was going to schedule me for another year until I asked him what the difference was on my last echo. After he flipped through my chart he decided I should come back in 3 months. I live in southern California so if anyone knows of best hospital or how I can go about finding this info. Taking into consideration a .5 cm change in approximately 8 months I just have a feeling this surgery could be sooner than I think and I want to take the precautions now while I have the time to.

Thanks so much. I have be cruising around the other threads and it helps to hear of others stories. I personally do not know anyone that will have or has already had valve replacement surgery.

Thanks again,
Lori

 

[Cooker]

Lori .... Welcome to the zoo .... sounds like you may be close but take heart, it is not as bad as you might think and we are here to help you up and over the mountain .... my primary input will be humor, sarcasm and a host of banana pudding recipes .... glad you found us!

 

[njean]

Hi Lori & welcome to VR! I hope that the information & support from our community will help dispel some of your fears of OHS. Just remember one thing, we are all survivors & we're here to help you thru your scariest moments.

So read up, get well informed & hopefully others will come along & are able to give you information on the best drs, surgeons & hospitals in your area.

 

[Bina]

Lori, welcome.
I remember having appts every 3 months when my valve was showing moderate stenosis, I stalled alot, and the next year it was at .8 and I was forbidden to drive or do anything.
Stick around, we can be helpful.

 

[netmiff]

Hi Lori, welcome! come on in, pull up a chair, read a bit (that will generate some questions!), and post your questions - we'll all be here to hold your hand.

We were all shell-shocked when we first contemplated heart surgery, but they do so much of it now that it really is nothing to freak out over. Yes, educate yourself, get the best docs you can, but don't freak out - and if you do, you can always vent here, too!

 

[Lorimacm]

Thanks so much everyone....sounds like I found the right place to find support. I was fine until a few nights ago when my 5 year old asked me how old I would be when he was 20 and if I would be alive. (This was just a question out of the blue at the dinner table - he has no idea I will need surgery some day.) I held it together in front of him but later that night I had a mini-melt down and I kept thinking the what-ifs and if I didn't listen to my body. It is so easy to procrastinate doctors appointments until things become emergent.

I just came back from a walk with my husband and it wasn't too bad. Not as tired as going up a few flights of stairs. The doc has told me no exercise, except walking and possibly yoga would be ok.

When does moderate stenosis become severe stenosis? I am picking up a copy of all the test results from the doc in a few weeks - so I don't have all the details right now that I have read on many of the posts. Last year the doctor told me I also have a regurgitating mitral valve, but this time he didn't mention it and of course I forgot to ask.

Thanks!
Lori

 

[Marguerite53]

Hi Lori!! Welcome from about 1,000 miles up the I-5! I'm so glad you found us. You will get so much kindness and support here! And we've all been through what you are going through. Not very many of us knew anyone personally who had been through open heart surgery, but now we know a ton of people who have!!!

With a 5 year old, I'm guessing you are a young, beautiful, otherwise wonderfully healthy woman. Please believe me, believe us when we say, you are going to be fine! This is daunting but very, very manageable.

Your stenosis will become "severe" when the opening reduces to a certain measure. I do not know the exact measurements for each category. I only know that my cardiologist said she would call in the surgeon when my valve reached .7 cm sq. I'm pretty sure .7 is considered severe. 4 months later, when I actually had the surgery (my bad for finding 2 other procedures totally unrelated which suddenly had to be done first) my measure was .53 cm sq and actually one anesthesiologist deemed that critical. The stenotic valve keeps closing up, calcifying, until it just can't function. This puts pressure on the heart (which is such a stoic and wonderful part of us) to work harder and that can sometimes cause other problems if you wait too long to fix the bad valve. Your regurgitating mitral might very well just be responding to the bad aortic valve; and then once you have your AVR, the heart will "remodel" and perhaps that mitral problem will vanish. Also, to some degree, all valves can have some regurgitation. All those values will be abundantly clear to the surgeon before he gets in there.

You have some of the world's best hospitals there in southern California. You need to find a very good cardiologist NOW. Today. NOW. Preferably one who is connected to the hospital of your choice... a place that has done tons of aortic valve replacements. Do not put up with a doctor who will not respect your symptoms. Being symptomatic (your level of symptoms) is very important in gauging when to time the surgery. You do not want to get to the point where you are passing out, or really even close to passing out. That is not a good thing. Please be sure you are describing your symptoms accurately to your cardio.

Many of us do this waiting dance. It drives us ALL nuts. I had to wait 3 years from the time my valve was measured at 1.0. Cardiologists tend to be very conservative and want you to hang on to your native valve as long as possible. The surgeon's tend to be knife happy and want to cruise right in! So you have to advocate for yourself and really be descriptive about how you are feeling, progressing. A good cardio will give you a horrified look if you say you are to the point of passing out. Nobody wants that. If that is happening to you, you need to let someone know that it is.

There is a ton of information that will be coming at you... and fast. You will get overloaded. We all do. That's okay. You can run a lot of that by us and we can help you decipher it. But nobody knows you better than your cardio, so please get to work on finding one you like, you trust, who has a good reputation, who can offer you a good surgeon.

Come back to us with any and all of your questions and concerns. It is often better to start a new thread with each type of question, that way, more of us will see the title and respond to it. Don't worry so much about where you put it (which forum). We all pretty much read them all and Ross, our moderator, will fix anything if it needs to be moved.

I know this is hard. Especially with a young child to think of. And I'm not surprised your 5 year old came up with that question. There is a "knowing" that children just seem to have!! Mine are all in their 20's now and I remember many times when they would almost have a 6th sense about things when they were young.

Hang in there! Stick around!!

Best wishes

Marguerite

 

[Reddog]

I was fine until a few nights ago when my 5 year old asked me how old I would be when he was 20 and if I would be alive. (This was just a question out of the blue at the dinner table - he has no idea I will need surgery some day.) I held it together in front of him but later that night I had a mini-melt down and I kept thinking the what-ifs and if I didn't listen to my body.

This definitely reminded me of a situation with my own 5 year old. When he learned about my scheduled surgery, he asked me pretty directly whether I was going to die. I would wake up in the middle of the night, crying, wondering whether my son would remember me if I did die. It's easy (too easy) to jump from emotion to emotion while awaiting surgery. My recommendation: keep focussed that it's the surgery which will allow you to see your child as he or she gets older. There is a lot of power in this.

I've been out of town for my surgery (June 11) and missed being with my kids for Father's Day. That was difficult, but focusing on the longer-term reasons helped calm the raw emotion.

Red

 

[ALCapshaw2]

Welcome to our World Lori!

You were Wise to listen to your Symptoms.
It's probably time to go Surgeon shopping so that you will have someone you trust Lined Up beforehand. Many Surgeons use 0.8 sq cm as a 'trigger' for recommending Aortic Valve Replacement.

(Note that One of our favorite sayings is that
"the Worse it gets, the Faster it gets Worse".)

You may want to read through some of the posts in the Bicuspid Aortic Valve and Connective Tissue Disorder Forum to learn about those sometimes related issues.

As a BAV patient, you will want a Surgeon who has lots of Experience with BAV and knows how to recognize (and treat) possible connective tissue disorders. These kinds of surgeons are usually found at the Top Heart Hospitals. You local Bypass Surgeon may not have a lot of experience with such patients.

One of the BEST Surgeons in California is Dr. Laks at UCLA. Google his name to find links to his background and education. Several of our members have used his services with good results.

Another Top Surgeon in California is Dr. Craig Miller at Stanford in SF. Again, many of our members have been well pleased with his services.

You can find links to posts about the above surgeons by clicking on "Search" on the Blue Line at the top of the page. Be sure to scroll down the Advanced Search page and change the Time Period to "Any Date" instead of the default setting of ?? months.

You may also want to look at the "Stickys" at the top of the list of threads in the Valve Selection Forum to learn about the differences between Mechanical and Tissue Valves. Be sure to have a Plan A and a Plan B, just in case your Plan A is not viable once the surgeon 'gets in there' which can happen once in a while.

BTW, you can tell your son that you WILL still be around when he is 20. Valve Replacement is a Highly Refined Art with a 1% morbidity and 1% mortality risk on a National Basis. The Top Surgeons are even better than that. We have members who are still going strong Many Decades after their surgeries, some with valves that are no longer even made!

Feel Free to ask any Questions as they come to mind.

Best wishes,

'AL Capshaw'

 

[skeptic49]

Welcome to VR, Lori. I can't add much to the great advice above. But I would be sure to find out about the condition oof your aorta, since BAV disease often results in dilation of the aorta. There is a ton of great info over on the Bicuspid Valve Forum which you can read and some great links to external web sites. Check out the Bicuspid Aortic Valve Foundation web site in particular.

Best wishes,

Jim

 

[Mary]

Hi, and welcome, Lori.
Glad to meet you, but wish it were under different circumstances.

 

[Thankful@43]

Welcome Aboard

Welcome Aboard

I am glad you found this site as well. It still proves to be very helpful for me at 2.5 years post-op and appearantly for others too. My situation was similar to yours in that after taking my military exit physical in '85 they told me about my murmur. 20 years later I am talking with my surgeon in Sept. when I asked about putting my surgery off until after the holidays. We decided that sooner was better than later. I was home for thanksgiving for dinner. I agree with the idea that surgeons want to "fast track" but remember that we are not promised any tommorows and every day above ground is a good day. The main information my surgeon gave me that led me to hurry up was the ascending aortic anuerysm that had previously been un-diagnosed. Take care and keep us posted.

 

[dcpickle]

Lori,
The timing of when to have surgery is always a big question for many patients. There are no hard and fast guidelines which will guarantee your surgery will be not too early or too late. Many people here on this site have had the experience that their cardiologist kept wanting to put off surgery, almost to the point that actual damage could be done to their heart. Then, when they finally got in to see a surgeon, he was ready to operate right away. When I realized I was having significant symptoms, I self-referred to a surgeon, who scheduled me for surgery a few weeks later. If I had waited on my cardiologist, no telling how long I would have waited. The moral is: don't be afraid to contact a surgeon on your own if you feel you are not being heard. They'll be glad to talk to you even without having been referred by your cardiologist.

Does your cardiologist know about your symptoms? If so, I can't believe he hasn't sent you to a surgeon yet.

One other point is that the valve area measurements from an echo are very imprecise. The valvular area is calculated based on the velocity of the blood in the region near the valve. Lots of things can throw off this calculation. In my case, I had a large chunk of calcification which caused the valvular area to show very small even when it wasn't. Your doctor may want to re-check your echo, or do a TEE (Trans-Esophageal Echo) which is a much better tool for evaluating valve operation.

Good luck and don't be afraid to ask lots of questions. This is the nicest, most helpful internet community I've ever seen. Everyone here knows how you feel and they love to help.

 

[escargome]

Hi Lori,
Welcome to this wonderful place. I too am in So. California. I would recommend UCLA also. My surgery wasn't performed there, but it is a wonderful hospital with very caring staff. Like you I grew up with what was supposed to be mitral valve prolapse, but turned out in the end that the murmur was from a bicuspid aortic valve. Anyway, hang in there but do listen to your body. Start looking for a surgeon you feel comfortable with, then everything will fall into place. You can PM me if you like.

 

[lisou]

Welcome Lori, you're at the right place for sure, always someone here ready to help in any way.

 

[bahlvarun]

Fundo...!!

Welcome and greetings from across the world.. Have a nice stay in here and get all your issues resolved.

 

[tobagotwo]

There are several measures, but to keep with the effective aortic opening theme, stenosis becomes severe when you reach 1.0 cm².

From that point forward, especially when there are strong symptoms, surgery is considered acceptable.

There is no magic number for surgery. If your cardiologist arbitrarily says, "Let's wait until it's .7 cm²," or something similar, and you have any symptoms, start looking for a surgeon. There is no advantage to a .7 cm² or .6 cm² over a .9 cm², excepting that the surgery is delayed. You risk permanent damage to your heart, and gain only a few months before you do what you have to do anyway. Plus, the echo may be off, and your valve opening may actually be smaller than the echo shows.

After the valve opening is smaller than 1 cm², symptoms are the main impetus for the cardiologist to point you to surgery. Do not play down your symptoms, and be sure to include any feelings of "getting older" you are having, as valve symptoms creep up on you, making you think you're just getting out of shape or getting old.

If you're getting a mechanical valve, there is no advantage to delay. If you are getting a tissue valve, you may extend its life by the number of extra months you sweated it out worrying and semidisabled. Hardly worth it.

Nor is it worth it to endure a TEE or extra cardiac catheterization for the cardio's curiosity as to how close to .6 cm² or .7 cm² it is. The echo is sufficient to warrant surgery, and you will have a cardiac catheterization shortly before the surgery anyway, to determine valve opening size and whether you have coronary artery disease that should be addressed while the surgeon is already in the open chest.

Best wishes,

 

[kpearse]

Hi Lori,Welcome! This is the best place on the net for info, hands down.

 

[Lorimacm]

You guys are amazing! Thanks so much for the encouragement!! I think this place will definitely be my daily dose for a long time to come.

 

[briansmom]

My son had his surgery at Sharp Memorial in San Diego. His valve surgeon is Dr. Dembitsky. They saved his life. The surgeons are great and the hospital is great.