progression history questions

[fjd72]

Hey folks...I've been lurking around here for a while, but am just posting for the first time. I'm not sure how much of the "cardiac history" part of my profile will be pasted in automatically, so forgive any redundancy.
I am 40yrs old. I have had a known heart murmur since birth. At 18 I was diagnosed with mild/moderate Aortic Regurgitation. More recently it was determined I had a bicuspid aortic valve. Last year I was told the regurgitation was moderate and that I had a dilated ascending aorta (4.0 cm by TCE). My cardiologist had me do a CAT scan this past spring and by phone just stated that it was larger than he'd like to see it but we'd keep an eye on it. This past summer I've really started noticing myself getting short of breath. It's oddly intermittent...sometimes when walking...sometimes just if I'm talking to someone, often when I'm walking and talking and particularly when I'm lifting anything of significant weight.
I also have been getting some pain in my chest. Not shooting or sharp...more "crampy" and usually just behind dead center of sternum. I also had a couple of instances where I felt like I was going to pass out or fall down...once while just standing at the kitchen counter (peripheral vision started to dim and close in) and once while doing some shed construction work in the yard (felt suddenly weak and off balance as I stood up).
I'm worried because I definitely feel different than I have at any point in my life. I've been overweight for a while, but not more so recently than in the past few years. I guess I don't know if I am being paranoid, and was hoping someone who has gotten to the point of surgery can weigh in and say whether this sounds familiar or not.

 

[fjd72]

...forgot to mention...I also started noticing a strange awareness of my heart beat about 1-2 years ago and occasionally strange rhythms (like it stops for a second or two and then beats really fast for a few seconds "to catch up").

 

[tom in MO]

You need to call your cardiologist and tell him of your new symptoms. Your symptoms are those that my cardioligst tells me he needs to know about. Stenosis progresses at different rates in different people. At the minimum, he will probably want to schedule a echocardiogram ASAP.

After my cardiologist told me I needed a replacement valve within 6 months, I started getting an upset stomach. I asked him if this was a symptom. He laughed and said no, but the stomach problems were probably was due to my shock and worry over the upcoming surgery Once my date was scheduled...no more stomach problems.

 

[dick0236]

ftj72....I agree with Tom. You should get in touch with your cardio. It's normal to become sensitive to any abnormal feelings, especialy around the heart area. Your feelings may be imagined or real, and only your doc will know for sure.

 

[karla]

Good advice from Dick and Tom. It's time for a checkup. Let us know how things go.

 

[Bina]

Those definitely sound like cardiac symptoms. I had the same. Call your cardio and hopefully get an echo done.
Also, welcome to the group !

 

[Freddie]

Hi and Welcome;
I totally agree with the others. Your Cardio needs to be aware on whats going on.

 

[epstns]

As you get closer to "the date" for surgery, take extra care when you stand up from a crouch or kneeling position. We heart patients often have poor "transient response" which means that when we stand up rapidly, the body needs additional blood supply to the brain, but our compromised hearts cannot increase their output rapidly enough. This is different than the light-headedness that many feel when they are just standing or sitting. This one has a cause and is not as serious as the other. It is still a precursor to solid symptoms, but is not considered one of the "cardinal" symptoms that would send you right to the OR. If you get light-headed when you rise rapidly, tell your cardio about it but don't let it keep you awake at night. If you get light-headed when you're just standing or sitting, I would tell the cardio sooner rather than later.

I hope this doesn't confuse you. I'm just trying to separate two seemingly similar symptoms into that which is worthy of the immediate call and that which is less worrisome.

 

[fjd72]

Thanks for all the quick replies. Obviously, all of you are correct in terms of my needing to talk to the doc. Luckily, I am actually already scheduled for a six month follow-up with my cardiologist next week. That's actually something that freaked me out a little...it used to be that he only wanted to see me every year or two...now it's six months to a year.
Bina...how long after you started experiencing your symptoms did you end up needing surgery?
I guess I'm just getting anxious. I feel weird, because I don't want to be a hypochondriac about it, but I also don't want to be in denial about how I've been feeling. I also have read quite a bit of literature related to the dilated aorta link to bicuspid valve disease, and if (hopefully not) it is getting close to the time for valve surgery, I'm worried that they won't address the aorta (because it's under 4.5cm) but that may end up being a problem in the future requiring additional surgery...and of course, the flip side is that I might be no where near the need for surgery and I'm just over-reacting. Seriously...I just wish I knew what the heck my body "plans" on doing. It's messed up, but funding for my work is iffy past next summer and part of me almost wants to hear that it's time to address this, because I currently have 7 weeks of sick leave saved up and good insurance...but next year, who knows? How sick is that? Obviously, it would be better if I NEVER need any surgery, but my symptoms have started all sorts of gears turning in my head. I'm the type of person that needs to have three backup contingency plans in place for anything, so this type of vague indeterminate future drives me nuts.

 

[Bina]

My symptoms came on gradually at first so I thought that "I must be getting older". There was no way that I was going to accept
the fact that I needed heart surgery when I had just bought a lovely hobby farm and had my horse in my back yard. It just seemed like
a cruel joke. Cleaning my horse stall became increasingly difficult and I had even put a chair out so that I could sit and rest while
cleaning. Talk about denial ;-)
My cardio was seeing me yearly, then every 6 months, he was telling me that I needed surgery, I would get faint then go home and cry.
Refusing surgery for so long was detrimental and I drove my doc nuts, but he put me on check ups every 3 months. Finally I showed up
for a regular echo with a different doc and she terminated my driving privileges. I could barely walk and carry my purse.
The need for surgery doesn't go away, things can deteriorate quite rapidly and make the surgery and recovery more difficult.
Do you have the results from your echo to show your valve details?
Would another doctor's opinion help you deal with all of this?

 

[caligirl]

Hi and Welcome,

I am almost in the same situation as you. I have a 4.3-4.5 ascending aortic aneurysm BAV, and mild (+1) aortic regurgitation that I just found out about in May. I have chest and back pain, every day, and feel like I can not take a deep breath a lot of the time. I was told by two different cardiologists that an aneurysm of my size does not cause symptoms and it is something unrelated or anxiety. I tried to make an appointment with a Cardiothoracic surgeon but they will not even see me for a consult because they say the same thing that my symptoms are unrelated to the aneurysm and they would not consider surgery with the size it is now. It is a standard of care for your cardio to see you back in 6 months once your aorta has become dilated to ensure that it is not rapidly expanding. Try to relax, ( I know how hard that is), and I hope your next appointment goes well.

 

[Guyswell]

Hi fjd72,

I don't think you're being paranoid. Your symptoms sound very familiar. I had my aortic valve replaced and my ascending aorta repaired with a conduit when I was 41 years old. I won't be surprised if your cardiologist tells you next week that it's time to talk to a surgeon. Don't let that alarm you. Once it's time for surgery, the risk of doing nothing far outweighs the risk of surgery. If your cardiologist says it's time to fix this problem, embrace the opportunity to start feeling better and get on with living your life. Of course the idea of surgery can be scary but don't let that keep you from moving forward. Once it's time for surgery, there is nothing to be gained by waiting until you feel less nervous about it. The fact that you currently have good insurance and plenty of PTO saved up makes this a good time to fix the problem if your cardiologist agrees. If it is time for your surgery, the fall is a wonderful time to do your post-surgery walking and exercise. You can walk outside, marvel at the fall colors in Albany and thank God for being born in a time when modern medicine is able to address issues like yours and mine. Let me know if you have more questions.

 

[Fundy]

I had similar symptoms five years before surgery, the faintness and dimming but never happening under exertion. As well as the heartbeat skipping beats. When I did see a cardiologist a few years later she mentioned the valve was almost severe stenosis and it was keeping up to exertion well still. That the skipped beats wasn't life threatening at all.

I had surgery about 9 months ago and don't notice any skipped beats, also I don't notice heartbeat before sleeping or anytime at all really. Previously I noticed heartbeat often.

 

[Heart Of The Sunrise]

I agree with everyone. And I will add you need to view this with absolute seriousness and not waste anytime getting the critical tests done!
See your cardio ASAP....get a echo.....ASAP.... I am all new to this.. Since the beginning of Oct.
I am seeing one of the best cardioligist in my area. Surgery for a valve replacement and aorta repair are a certainty. My BAV is severely thickened and calcified.
If i do not do this it will only get worse and become definitively life threatening. My overall health is good. I am completely asymptomatic which is one of the really good things that gives me courage to actually look forward to getting the surgery done.
You are symptomatic with raises the urgency to get checked out. I am not trying to scare you but, we all on here are cursed and blessed with similar medical concerns. The good news is we are also fortunate that there are clearcut reliable ways to allow us to improve our health and longevity. My mother is a healthy 88 years old. In the last month 2 of her 3 children have seen cardioligist. Fortunately, my sister should be okay without any significant medical intervention.

Best of luck. Keep us posted. This forum really has helped me stay focused and reasonably calm.

I found some great books on Amazon...dirt cheap that I know will also help me understand the cards I have been dealt and what to expect in the post-op phase.

Good Luck!

HEART OF THE SUNRISE

 

[ramjet]

Time for a replacement fjd..sorry to be the one to say, but almost for sure...and delaying will likely increase the irregular heart rhythm issues and shortness of breath etc. Don't worry, "bring it on " I said, amny people have no idea whats wrong with them at least we knew and we can do something about it....so, get an echo, get an angio (to make sure yuor cronary vessels are ok) and get as fit as you can old mate...crack on and see the Doc, get a referral to a cardiac surgeon and pick a date for an operation....happy days!