Another new member

[TXpoison]

Guess it?s my turn now. My name is Ken and I have been reading various threads on this site over the last few weeks, and finally decided it was time to join in and tell my story. It really is great to find a place with so much information from people who have experienced what I have and will be going through.

I have been married for 16 years and have three kids. Two boys ages 14 (starting high school in a couple of weeks) and 6, and a daughter 12. As most of you can relate, family activities keep us busy and on the go.
I have a long history of heart related issues. The doctors first detected a heart murmur when I was just 3 months old. When I was 7 a cardiac catheterization was done and it was discovered I had a coractation of the aorta. This was repaired when I was 11.

I fully recovered from the coarc repair without any problems and everyone, including myself, thought that was going to be the end of problems. I went through my high school years without any problems, participating in several sports. Physically I was able to do whatever I wanted without any problems.

Everything was fine until about my second year of college when I began having episodes of rapid heart rate, one resulting in a catheterization overdrive procedure to get my heart rate back to normal rhythm. Subsequent follow-ups to a cardiologist revealed that I have a bicuspid aortic valve. I suspect I have had it from birth, and that it wasn?t discovered until later%, but I probably will never know for sure. I was told that eventually I would probably have to have it replaced and I would have to have echocardiograms every year or two to see how it was doing. I was told that I could continue normal physical activity, just not to do any heavy weight lifting.

My last echocardiogram was in May of this year and it showed a marked change in the valve. My cardiologist classified it as ?severe aortic valve stenosis and moderate aortic valve insufficiency. He wants to repeat the echo in six months.

This was the first real change in my condition since I had my surgery at 11. Naturally, the whole subject has jumped to the forefront of my thoughts instead of just being on the back burner for so long. I feel fortunate to have found this site and to have time to research the subject (especially the valve choice issue and coumadin) before the surgery.

In looking over various threads, I found a couple of references to the Bicuspid Aortic Valve Foundation website. In reading over this site and others concerning Bicuspid Aortic Valve Disease/Disorder I was troubled to find that I had many of the symptoms listed: inguinal hernia repair, coarctation, near sightedness, scoliosis. Before, I had always assumed the coarctation and bicuspid valve were the only things I had to worry about. Now I am wondering about possible aortic aneurysms and other connective tissue disorders as well as the possibility of passing something on to my children.

I am wondering if I will be able to notice the symptoms as the valve gets worse. I have always been active but have never done any exercising on a regular basis. I have also been more stressed and anxious over the last few months. If I get winded now, I wonder if it is because I am out of shape, stress/anxiety or something due to the valve.

Sorry for rambling on. It has been an eye opening couple of months. I know I?ll be asking more questions and seeking more advice in the future. I wanted to say hello, thanks for all the information and thanks for listening.

 

[Chrisandgary]

Ken, First of all welcome - this is the best place for support and information.
I can completely relate to your feelings on BAVD and the disease being passed down to your children.
My husband Gary is the patient, I am the highly neurotic Type A personality wife who is gathering as much info as possible. Gary was diagnosed in 92 with Aortic valve regurg. and medicated with betablockers until 97 when he had his first surgery - the Ross procedure. That only lasted 3 years and in 00 we went for a St. Judes mechanical. We are now going in again for an aortic aneurysm - replacing the root and valve with a dacron/St.Judes conduit. It wasn't until this past week that I received confirmation it was a bicuspid aortic valve - disease and is a connective tissue disease. We just found out on 7/13 about the aneurysm and I of course went back to all of my notes from surgery #1 and found a little notation about BAVD. His surgeon told me pretty much not to worry about it - it is not that big of a deal and that is probably not what it is. Surgery #2 I asked the same thing and tried to find a surgeon to replace the root because his aorta was big then - no one would do it. They really did not know much about BAVD then. I questioned the surgeon about my children - he pretty much laughed at me! He asked me if I was going to go crazy - not to, there are really no tests to prove this and most aortic regurg. do not show up until later in life.
Now at surgery #3 almost here - I have gone pretty crazy - but also a little more at ease with this because there is so much info out there now. (Also goes to show how good I was at digging up info - even though I was just beginning to get a grasp on this - so was the medical field)I have resigned myself to have all four of my kids to be checked out (We have a 9, 8, 5, and 3 year old). I will not back down until all four have a baseline echo - unless anyone has a better suggestion! I am also going to have a head catscan (at a later date) on my hubby done to check for any other aneurysms there. I hoped this helped you somewhat - I just wanted you to know you are not alone - because as soon as I learned more about this - the first thing I thought of was my kids.
Take care and welcome again!
Christine

 

[Karlynn]

Welcome Ken!

Keep in mind that some people remain asymptomatic until they have their surgery, only to find out that they were days away from real trouble.

I would encourage you to get a second opinion. I'm not completely familiar with the aortic side of valve issues, but any time I see the word severe, I wonder why the doctor is waiting. There may be a good reason, but we've said here a millinion times that doctors tend to wait until they see damage, surgeons like to get in before. Speaking as someone who has permanent damage, I would have prefered the latter.

 

[ALCapshaw2]

Welcome aboard Ken !

As you may have already learned from reading old posts, cardiologists often like to take a "wait and see" approach.

With his finding of SEVERE aortic stenosis, I think you should ask for a referal to a surgeon that has lots of experience with BAV patients and aneurism repair (just in case). Surgeon's like to operate BEFORE there is PERMANENT DAMAGE to the Heart muscle / walls so I highly recommend that you let the SURGEON make the call on WHEN to intervene. In the mean time, get copies of ALL of your Echocardiograms and other test results so that you (and the surgeons you interview) can track the progression of your disease. You may want to interview more than one surgeon. It's time to start asking around for the recommendations and setting up some interviews. Remember the Boy Scout Motto: "BE PREPARED" !

'AL Capshaw'

 

[EVELYN]

Hi Ken
Welcome to a wonderful place.....as far as I'm concerned. My hubby, Tyce, and I have been here for a bit over three years. He was diagnosed with severe regurgitation/aortic stenosis and was absolutely fine for about 5 years. He did his regular visits to our cardio and in March 2002 was told....."maybe another year and a half" before surgery. He was TOTALLY asymptomatic. Well, that year and a half lasted two months and he was in afib and in our local hospital. Our cardio told him that "It's time" and we wasted NO time going to two surgeons for opinions. My last day of teaching school, 6/26/02, was Tyce's surgery. He had a St. Jude's mechanical put in and thank God has been absolutely fine since. He was 59 at the time of the surgery and always healthy, in good shape, etc. I do think that had much to do with the "ease" at which he recovered.

I do know two things: One is to get that surgeon lined up. It may take a bit and you want to go to the best possible person you can find. Hopefully there is one in your area. Surgeons like to do surgery sooner than Cardiologists like to send people in to see them. I don't believe we waited too long, but I'm glad we only had a month's wait from the time Tyce got out of the hospital from his bout with afib....His heart returned back to normal size relatively quickly post op, which is a good thing. I believe the longer you wait, the more permanent damage you can have.

Second, know that this surgery is something your entire family will go through with you. It has a profound effect on everyone, so please include them and understand their emotions, too. I believe, and you can ask many of the "oldies" on this list, that I had much more trouble handling Tyce's surgery than he did. For him it was quite matter of fact....go in, fix the problem, and start to heal. For me, it was an extremely emotional time. This list was there for me with information, support, and anything else I needed.....I will always be grateful to them for what they gave.

So, again WELCOME to a great place. If your wife would like to join you or chat with the SO's on the list, please encougage her to do so.....

Best wishes.

Evelyn

 

[rbl1999]

Hi, my name is Rose and I just had AVR replacement 2 weeks ago. I agree with the "see the surgeon". I had been followed by my cardiologist who like so many here, had the wait approach syndrome. Two days after seeing the surgeon I had the surgery, and lo and behold, the valve was worse than was thought. And most of my "knowing" something had changed was symptoms. I kept thinking it was becasue I was getting older (59) , but in the back of my head I knew things were not good. I have always tried to go with my gut feelings and this time I was right on, only you know how you are feeling. I saw both cardio and surgeon yesterday and they both told me that I should start to really feel good, better than I have in a while and I am looking forward to this.All the best to you....

 

[epstns]

Hi, Ken, and welcome to The Waiting Room -- the virtual room in which many of us await our turns at valve surgery. My situation is somewhat different than yours, in that I had no idea of any heart condition until, at a routine physical about 3 years ago, I was asked "How long have you had the murmur?" BINGO - big shocker! One thing lead to another, saw a cardio, fired him and went to another, and now we know I have a "probable" bicuspid aortic valve, moderate to severe aortic stenosis, and mild hypertension. At the present, and for the past 3 years, we have been doing annual echo's and twice per year office consults. At the present, we can only say that surgery is "probably out a few years." I still jog, although a bit slower than I used to (especially in this heat!), work out with light weights, and try to live my life. I feel that I am asymptomatic in the sense that I have none of the "cardinal" symptoms of fainting, chest pain or shortness of breath. What I do notice, as time goes on, is that my stamina isn't what it used to be. I've become very sensitive to small changes, but at the present time my cardio is comfortable "watching and waiting."

Hope your situation stays as manageable as mine.

Welcome, and come on back with all the questions you're probably asking yourself. I've found that the folks here probably have more usable answers than most medical care teams.

 

[TXpoison]

Thanks for the replies. I think I will try to talk with my cardiologist agian and start looking for and talking with surgeons.

Christine, you mentioned that you and your husband just received confirmation that he has BAVD. How was this determined? Some sort of test or just based on his history and symptoms.

Thanks.

 

[epstns]

Ken,

My "probable" bicuspid valve was diagnosed by a couple of means.

First was the diagnosis of aortic stenosis at age 54. Aortic stenosis has three likely causes: 1) Old age -- really old, like in your 70's. This wasn't my cause. 2) History of Rheumatic Fever -- not me, either. 3) Bicuspid aortic valves tend to often become stenotic and become evident as the patient enters their 50's -- BINGO!

The second, and less definitive in itself, was the serial echo's I've had done over the past few years. Typically my aortic valve is not clearly visible in the echo, but in a couple of them there does appear to be a visible structure of only two cusps.

Thus, between the two, we've accepted the diagnosis of "probable" bicuspid aortic valve, and have had the various other X-rays and exams to rule out other related conditions.

Hope this helps. Mine is the only case I have any real "experience" with.

 

[Chrisandgary]

Thanks for the replies. I think I will try to talk with my cardiologist agian and start looking for and talking with surgeons.

Christine, you mentioned that you and your husband just received confirmation that he has BAVD. How was this determined? Some sort of test or just based on his history and symptoms.

Thanks.

When I started realizing for certain that BAVD is a big deal - a disease that has many other components/affects to it and that it is hereditary - I had a connection of mine pull Garys path report from his very 1st surgery (the Ross procedure in 97) On the report is states "specimen consists of 2 leaflets".That is how I found the answer - almost 8 years later! There was no notations in Garys charts from the hospital, from the doctors, somehow medical records came up with the path report and I am so thankful to finally have this mystery solved! I brought the path report to our fourth surgical consult and he confirmed for me it was bicuspid (Of course I already knew from this great site)!I just wanted a concrete answer so I know what to expect in the future (somewhat) and how to do the best for my children. I have also told Gary he should speak with his brothers about this - and possibly to be tested as he has 3 brothers who could possibly have it too.
Take care - and please ask all the questions you wish -
Christine

 

[catwoman]

Ken:

Welcome to valvereplacement.com...

My husband & I live in Parker County, too, in Aledo. We used to live in the Arlington Heights area of Fort Worth and built a home 9 years ago in Aledo. I work in downtown Fort Worth & John works at Tarrant County College-Northwest Campus.

Where is your cardiologist? When I was told I needed MV surgery, I was advised to go to the Mayo or Cleveland clinics. But because of my extended family, I wanted to stay in Texas, so I switched to a cardiologist in Dallas, Michael Donsky at the HeartPlace adjacent to Baylor Medical Center, and had my surgery at Baylor.
Harris Methodist is building a new heart center here in Fort Worth, but I will probably stick to Dallas for cardiac care. I grew up in Dallas; my parents (76 & 78) still live there; and both sisters live there. My younger niece is a surgical ICU nurse during an internship at Baylor in Plano.

You've gotten some good suggestions here, to get a 2nd opinion, to start consulting surgeons, etc.

 

[TXpoison]

Christine,

Does having a bicuspid aortic valve necessarily mean you have bicuspid aortic valve disease or can you have a bicuspid valve without having the "disease"? Sorry if I am causing confusion or if I was unclear in what I was initially asking.

Marsha,

I drive by Aledo at least twice a day (I work at Lockheed Martin in Ft. Worth). I remember when there was "nothing" in Aledo in the mid 1980's. It sure has changed a lot in the last 10 years or so. I will check with insurance to see if any doctors or hospitals in Dallas are covered.

Thanks,