How rapidly did your aortic symptoms develop and worsen ?

[VegasBAV]

So I've got aortic regurgitation and stenosis. Cardiologist #1 recommended prompt surgery back in May. I have dilly-dallied a bit, as I have been asymptomatic and irt didn't feel like an urgent need to me. Cardiologist #2 (second opinion) recommend another TEE, this is scheduled for Saturday.

Later this month I have a surgical consult in Cleveland. My plan was to ask to whether surgery could be delayed a while since I am asymptomatic.

Over the last month or so, I have felt fine, although I have wondered if I'm breathing heavier after climbing a few flights of stairs, is my heart rate faster with routine activity, etc. But otherwise fine, at least until two days ago.

As of two days ago, I can definitely say that I am having symptoms. Somewhat short of breath on normal exertion, fatigue, heart beat feels more pronounced, etc. The symptoms are not pleasant and now I want to have this surgery done ASAP. I've gone from "I don't think I need this surgery soon" to "somewhat terrified" in about three days.

My concern now is that I feel sufficiently worse now than I did two days ago, and if things continue to worsen at this rate, I'm not going to make it to whatever elective surgery date they give me in Cleveland. I know many people have symptoms for months before surgery, but is it common for symptoms to rapidly worsen and for people to get moved up on the schedule as a result?

Did anyone else feel like "there's no way I'm going to make it until my scheduled surgery date," and how did it turn out? Did you make it until the date or did you end up having it done on an emergency basis elsewhere? Or did you get moved up by your surgeon of choice?

It's possible that anxiety about the realization that I'm symptomatic is making me feel worse now, maybe that will go away and I'll be OK for a while.

 

[offwego]

Oh boy...I would think that anxiety could easily be influencing how you feel...Take that from someone who has (and is) there at times.

I had my Mitral Valve repaired (twice) and the first time I didn't stay on top of doctor appointments and literally went years not having my heart checked until 'suddenly' I needed surgery...But even then it wasn't life threatening and I had terrible shortness of breath...could not take a deep breath..it was horrible..

The second time (in November) after an EKG my doctor said he was certain I needed surgery...I hemmed and hawed and he said he will send me for an echo but he was 100% certain...and he was right of course..

I had about two weeks before that surgery.

Obviously you are taking care of this now which is good. Don't panic. You will make it and you will be fine.

 

[Mike1952]

I have aortic regurgitation, just discovered it on June 8th. I jogged the day the cardio heard the murmur. I was shocked. But, since then, it has been just over a month, my symptoms are definitely getting more pronounced. My heart kind of aches and although I quit jogging that day, I still walk at least two miles a day. I too am starting to notice I am getting tired more easily. So, basically, I feel the same way you do.

I'm seeing a surgeon on Tuesday, 7-17. I was hoping to wait till I retired at the end of the year, but now I'm beginning to want to get it done right away if possible!

 

[dwhist]

I was aymptomatic. Doc heard a murmur about 2 years before and started watching it. I was riding bike alot with no issues, including 2-100 milers about 3 months before surgery. Doc had told me not to lift more than 50 pounds and I did notice I felt crappy for a bit after lifting anything heavy, so I became more careful. When doc called after an echo, he said even though I was not feeling it, it was time. Test showed heart had enlarged and they wanted to replace valve before lasting damage was done to heart. He did a followup with an angiogram and which showed leakage being worse than he thought and surgery was 3 weeks later. Not rushed in my case.

Surgeon was going to do mini, which was to be a 4 inch cut, but found the heart was so much larger than they thought, that he had to do a full cut. Followup echo two months after surgery showed heart had remodeled almost all the way back to its proper size.

Anxiety could be causing you to feel worse right now or maybe now you are noticing the symptoms more. Not sure you would go downhill that fast. If you talk to doc, see about getting some anti-anxiety drugs such as some xanax. Made a difference for me during the time leading up to the surgery.

Follow docs orders and you will find that after the surgery, you will look back and say "that was not so bad".


Keep us updated.

 

[chaconne]

vegas,

In September 2010 I had a routine echo to monitor a 20 year heart murmur and found out I had moderate/severe regurg. and would probably need surgery in the near future. Right after the shock of that, I started feeling symptoms of fatigue and couldn't run up many flights of stairs like I did before, without being wiped out. It got to the point where I was sitting at my desk at work and felt too tired to just sit and type. A week after the echo I even went to the ER to check it out.

It turns out that I put off the surgery for a year and the symptoms I felt didn't seem to be heart related. My point is: the symptoms of fatigue can just be psychological, or caused by something else. However, I would definitely monitor your condition. If you just keep getting worse over days and weeks, get it checked out. In my case, It got better and I was able to continue vigorous exercise right up to the day of my surgery.

Hang in there!

 

[scott.eitman]

I have learned to trust the Cardios at the CCF. I recommend listening to them and following their recommendation.

In 2010, I was asymptomatic as well. On March 31, I was told I needed surgery and I needed it that year. I thought it over while on some bicycle rides and decided that December was that year and I really wanted to get through bicycling season before surgery. Heck the guys I ride with would be very disappointed. When I told my Cardio of my decision, he said NO it needs to be sooner. That really put me in my place.

We during a 65 mile ride in June, something happened and I quit riding for the season. I just did not recover well.

How did he know? It doesn't matter, he knew.

Stay Well
Scott

 

[Bill B]

Certainly, things could change rapidly. Whether someone else has had a catastrophic failure like you are fearing or not isn't really germaine. I'd at least call your local cardiologist and let him/her know exactly what is happening. I hope things settle down and your CCF visit goes well.

 

[Mentu]

There may be a couple of forces at work. On the one hand, we all agree that anxiety causes one to focus on everything that might be a symptom. One must not discount, however, that as the problems with the heart valve become severe, symptoms can develop much more rapidly. In six weeks my symptoms went from something I could live with to being debilitating at times and that wasn't in my head. By the last month, any exertion brought on severe palpitations (that's when you can feel your heart beating really hard) so every two to four hours I had to ly down for an hour. When you speak with your doctors, make certain they understand how rapidly you have experienced the onset of more severe symptoms.

The first morning after surgery that I awoke clear headed, it was wonderful to discover that the old symptoms were gone. Best Wishes

Larry

 

[VegasBAV]

Thanks. I have felt much better over the last few days. I think a lot of it must have been anxiety. I'm going to try to have the surgery as soon as possible now.

It's funny, when I was asymptomatic, I wanted to delay the surgery until after I had symptoms. Now that I've started having symptoms, I wish I had the surgery sooner. Cardiac symptoms, even mild ones, are not a lot of fun and can be pretty unnerving.

 

[Bill B]

Thanks. I have felt much better over the last few days. I think a lot of it must have been anxiety. I'm going to try to have the surgery as soon as possible now.

It's funny, when I was asymptomatic, I wanted to delay the surgery until after I had symptoms. Now that I've started having symptoms, I wish I had the surgery sooner. Cardiac symptoms, even mild ones, are not a lot of fun and can be pretty unnerving.

Well, that sounds better. The timing of surgery is a subject for debate. Honestly, there is no clear proof that doing it when still asymptomatic really improves the outcomes, unless you are comparing to somebody who is terribly compromised, but I and many others hope we got a better result by going in a bit too early rather than a bit too late. I never had any symptoms and my cardiologist wanted to wait and watch. However, my echo results were so bad and so rapidly changing I consulted a surgeon and his very well-educated and strong recommendation was I needed this fixed within 5 months. I got it fixed in 3, and judging from what was found when they went in there, it was none too soon. I was substantially impaired post-op and it took me quite a while to get back to baseline. Would going in even earlier have made any positive difference? It's all a guess.

Stay calm and let us know how the CCF visit goes. You should learn a lot from that.

 

[Jkm7]

There's a saying some around here use:

The worse our valves get, the faster they get worse.
It has proven to be true in more than a few cases including mine.

 

[Forrest]

Being diagnosed with bicuspid aortic disease was a sudden surprise to me. I didn’t know much about valve problems back then, and I was always physically active, hiking and playing competitive sports without any indication of a congenital heart defect. I was just going to a routine physical exam and wasn’t going to say anything about some mild fatigue I was feeling since I had deemed it due to work stress and getting older. But at the last moment I decided to tell the doctor. I always had what I was told way back in my early twenties was an “innocent heart murmur”, but since after my physical the doctor said my murmur seems to have gotten louder he decided to give me my first ever echo test. That’s when I found out, I had BAVD with severe stenosis. The doctors were surprised I wasn’t feeling more symptomatic, but said all of my other vitals were actually very good. I was told to get another echo every six months and to let them know if I experience shortness of breath, dizziness, swelling in the ankles, etc.

It seems about a month later I started to notice a few weird sensations other than occasional mild fatigue. I felt it was odd to be basically asymptomatic then suddenly after a diagnosis I’m starting to notice a few things. Basically, I started to notice some occasional light headedness and disconnect to my feet at the end of playing sports. I was researching my condition a lot on the internet and was getting a bit worried. I attributed most of it to anxiety and being stuck in my head all the time, after all I still could exercise at a high level. Within 5 months of my diagnosis, and after successful recovery from Endocarditis, my cardiologist recommended that I take care of my valve sooner rather than later. Upon reflection a few months after my operation I started to see things differently, I think a good portion was due to anxiety but half of it was most likely due to my heart condition starting to worsen. Of course everyone is different, as are their hearts. Like others have said, it’s good to consult with your cardiologist(s), and when in doubt ask questions. Best of luck to you!

 

[bradvo]

I certainly felt worse within weeks since I found out my valve was calcified. In my case I had already hit bottom, tuff to climb stairs and could only walk short distance. My PCP kept saying It was asthma, glad I saw a cardio doc to find the real reason why I was really going down hill.
If I recall the other concern about a calcified valve is the possibility of a piece breaking off, then sudden death or stroke.....at least I was told that by my surgeon.

 

[EnglishmanInShanghai]

I was on my way to work and I began to feel discomfort in my abdomen, thirty minutes later I am in the back of a taxi being rushed to hospital.

I had never in my life had any problems or indications I had a heart/aortic condition. I have always been physically fit and active having done sports such as weight training, rock climbing, running, cycling an martial arts. Not even health checks brought up any sign of a bicuspid aorta, it was a total surprise to me.

I was very lucky, it began to rain just as I left my apartment and so I decided to go back for a rain coat. It was when I got into my building that the worst of it hit. I managed to get back home and my wife got me into a taxi (ambulances are not that reliable in Shanghai...lol).

 

[epstns]

I would say that the only reason I would (and did) wait is if waiting might allow you more choices of valves to use, and as long as there was no visible damage being done. My stenosis was relatively stable for many years, so I waited until I was old enough that a tissue valve would be a more viable option. If I had replaced my valve when it was first diagnosed, I would most likely have had a mechanical valve. I preferred tissue, all other things being equal, so I was lucky enough to be able to wait until I was 63 for surgery - an age at which the surgeons were confident that a third-generation tissue valve was a good choice for me.

 

[normofthenorth]

+1 to what EVERYBODY said!

I was competing at a pretty high level (moderately high skill, very high exertion) at court and beach volleyball for years after my BAV was diagnosed. First semi-annual echos, then annual, then back to semi-annual as the numbers got worse. About a year pre-AVR, I tore my (second!) Achilles Tendon, a few hours after completing a Stress Echo test that had my Cardiologist visibly frustrated. I did great on the test, and he'd been trying to talk me into getting surgery sooner, while I resisted. (He told me through clenched teeth, "This is clearly a VERY good test!". I was happy, he Not So Much.) Unlike some posters above, my (fancy) heart surgeon was much more patient than my (pretty fancy) cardiologist. But the AT rupture killed my volleyball season, and I didn't get a chance to return to volleyball during that year (from other factors, including slow AT recovery).

I think I had another good stress test ~6 months later, still feeling fine, and my Cardio and I agreed to postpone for another 6 months. Very soon afterwards, I had two episodes of unexpected Shortness of Breath, which prompted me to stop dilly-dallying. I think my date was around 2 weeks later, and could have been earlier if I'd wanted.

I think my heart has ~100% remodeled after its LVHypertrophy, so no apparent harm done there. But a predicted "possible MV repair" turned into a "MV Repair or Replace" in the last ~6 months. It did turn out to be a repair, but I assume that some additional harm was done to my MV from all the extra back-pressure (and increasing over-pressure regurg) during the last part of the wait.

The issue of collateral heart damage from waiting is real, and pushes in favor of going sooner. But valve choice and the expectation of tissue-valve lifetime lean the other way. In addition, I'm convinced that some ancillary problems -- like a distended Aortic Root -- might be better treated in a single surgery if they get a chance to "ripen" pre-op. And finally, I think the psychological/spiritual factors all lean toward waiting. One of the common questions others ask us and we ask ourselves post-op is "Well, do you feel better yet than you did pre-op?" If you still feel asymptomatic =~ "perfect" pre-op, it will seem like a Very Long Time before you are likely to give an honest Yes to that question.

 

[Mike1952]

Hi Forrest,

Where are you in WA state? I'm in University Place, getting aortic valve replaced on Aug 10th.

Mike

 

[Lily]

Vegas, there were a few nights in the weeks before my valve replacement surgery that my heart just churned and sloshed and I seriously was afraid I wouldn't wake up. But my bicuspid aortic valve was in rough shape and came apart in the surgeon's hands.

But as you have discovered, sometimes you can still feel better.

And there are things that might make you feel worse so avoid them: Heat and Humidity can dramatically decrease your oxygen intake, Salt can cause you to retain water placing extra stress on your body, Mineral Imbalance seems to be an ongoing balancing issue for many heart patients, Heavy Eating can be physically stressful, Alcohol and Coffee can dehydrate you, Lack of Rest and Sleep, the list can go on and on -- but all of those things can exacerbate your symptoms.

Best Wishes