New Symptoms is this common?

[heartweave]

Hi everyone

I am new to the site and just now trying to calmly embrace the fact I need an aortic valve replacement. Possible as early as February. I am working on a second opinion. I am leaving for a Mexican vacation for 3 weeks tomorrow. My surgeon nixed my Peru vacation as he wanted me close to a hospital and ready to come home at a moments notice.

My plan is to have a new stress echo upon returning, meet with Dr. Gaudiani surgeon, meet with my cardiologist and have a holster study completed. I am trying to get a second opinion with Dr. Craig Miller, Stanford. Has anyone had experience with either of these surgeons?

I really thought asymptomatic, in fact, have been exercising 1-2 hours daily. I really thought the slowly evolving fatigue was from the chemotherapy I had 7 years ago and getting older. I thought the periodic mild palpitations was from anxiety. I was given propanolol as needed and took half a pill a few times a year. Most of the time I just meditated through the palpitations and thought nothing of it.

10 months ago I had a non related 8 hour surgery with many post operative side effects due to my 0.7cm stenosis. The first few months were horrible. I gained 20-30 lbs of fluid, was on blood thinners for a month, I had iron deficiency anemia and an emergency transfusion 2 weeks following surgery. I was on lasix and antibiotics. I was antsy to go back to the gym but found, after a month post op, I was dizzy and sweating following exercise and had a hard time finishing even an hour exercise class. Finally after a few months I was able to return to my exercise regime and have almost totally recovered with the exception of some retention of fluid.

I could not believe they wanted to replace my aortic valve. I knew I had the bicuspid but thought it would be another 10-15 years before I needed the surgery plus I did not have symptoms.

Two weeks ago I got a cold which went into my bronchials. I started wheezing. They put me on antibiotics, steroids, even diuretics, inhalers and after about 10-14 days I was fine.

So now...I am having more symptoms. I am finally willing to admit this. I am having palpitations 3-5 times a week with some pressure, fluttering and chest tightness. I still dance and work out. I notice I wheeze on occasion when lying on my back. I told myself it was from spicy food.

Can someone address their own symptom course. I realize we are all different but it really helps me understand and gives me a point of reference.

Do you wait out the palpitations or immediately take meds?

It is all so confusing. Some days I wake up with lots of energy and roaring to go...other days I am exhausted. My symptom picture is complicated by my severe insomnia.

Thanks

Leah

 

[MrsBray]

Everybody is different, and our bodies all adapt in different ways. I, too, thought I was "getting old." I get palpitations a few times a week, but have no medication for that. Some days I feel GREAT, normal, ready to go go go! Other days (usually days with weather extremes - hot and cold) I'm lucky if I can make it across a parking lot without wanting to sit down. I'm glad you're willing to admit you're having symptoms. My last measurement was .9, not sure what my EF is right now. I didn't know I had a bicuspid until a year ago, but have known about the stenosis for about 10 years. Some days, I just can't get warm fingers and toes, and some days I don't even think about it. There's a lot of reassuring stories and advice on this forum, keep your chin up!

 

[Rebecca]

One person had posted that his doctor told him that he would know when it was time for surgery. Before I had surgery my cardiologist told me that he didn’t think any of my symptoms were due to my heart because none of my tests had change much. I also would go bike riding and exercise. My family dr. and oncologist agree that I should have surgery. I had many of the symptoms that you now have. Most of us slowly go downhill not realizing how bad we feel. My cardiologist did send me to a surgeon and the surgeon agreed that it was time for surgery. One symptom that I had was that I was waking up in the middle of the night having to get up so I could breathe. My nose has never worked right so I just thought that was the reason why I could not breathe. I never told my doctors about this symptom. After having heart surgery I no longer have to sit up to be able to breathe. If my nose is not working I still can lie flat and breathe out of my mouth. After having surgery my cardiologist refers to my heart no longer sounding like a washing machine. Before having surgery my heart felt like a washing machine. For many years if I got out of breath I would gulp air. I now breathe normal when I get out of breath.

My Christmas gift to myself this year was surgery on Dec. 23rd to get the inside of my nose fixed. Yesterday I had the sponges removed from my sinuses and I could breathe just as well as my mouth through my nose at night. Getting better sleep at night will be better for my heart.

 

[big_L]

0.7 area is in the severe range. Many of us were convinced that we were symptom free even with severe stenosis. Many find out after surgery that they weren't as symptom free as they thought. I'm beginning to think that applies to me also. I too exercise and dance. Prior to surgery my wife commented how winded I'd get after a polka, even though I exercise more than she does. I also was quite alarmed at how winded I got carrying some wood up a hill prior to surgery. I was scary short of breath.

A second opinion is a great idea. You may want to get your echos and look over them. The gradient numbers are weighed heavily in the surgery decision.

Accepting that you need surgery is a hurdle and a struggle for many of us to get over. Then the waiting pre-surgery, which can be difficult.

The good news is that you should come out the other side in great shape and ready to get back to your normal activities. I'm actually going days now without thinking about valve/stenosis/surgery, which is great.

 

[shanwow1]

Symptoms have been one of the hardest things for me to get my head around with this condition. It seems that there is a very fine line between being aware of your body and the symptoms you are experiencing, and being overly aware causing psychosomatic or stress responses that mirror the symptoms the doctors are asking about. Combine that with the fact that many people seem to experience a slow progression of symptoms and you can drive yourself crazy thinking about it. I have BAV with severe insufficiency/regurgitation, but no stenosis, so it seems that symptoms are one of the main indicators of when surgery is necessary (plus heart enlargement). I am able to carry on my daily activities as normal but when I compare how I feel to even 6 months ago, I can identify a marked decrease in efficiency of tasks (more fatigue, shortness of breath) and increase in discomfort (palpitations lasting longer, chest tightness). As others have mentioned, I am looking forward to a boost in energy when I eventually make it to the other side of surgery!

 

[Tiger]

Hi Leah! I think a second opinion is a good idea. But like Big L said 0.7 is considered severe and if you are already having those symptoms I would recommend getting it done sooner than later.
My story is a little different because I am hoping to have another pregnancy soon, and pregnancy puts a huge strain on the heart. My AVA was 1.0, pressure gradient 42 and EF 65% So, mine was considered moderate-severe. My choice was to either get it replaced and be able to have another pregnancy or wait and watch it (and worry about it) Cardiologist predicted about 1-3 years it would NEED to get replaced. So, I went ahead and did it and I'm very glad I did! My surgeon told me it was a good thing I got it done because the valve was really calcified.
Also, another thing that scared me into getting it done sooner was that my heart had thickened due to the stress of the Valve and also had a slight bulge in my aorta.
As far as symptoms, my whole life I've always been very tired all the time. The last year or 2 I've gotten SOB walking up flights of stairs and hills and during certain activities. I've also got many palpitations.
I am only a week and half post op but I am already feeling great and I am so happy to have the surgery behind me. I just can't wait to get back to being physically fit and healthy with a normal valve!
Wishing you well with everything! You will have to keep us updated! And feel free to msg me!

 

[Tiger]

Also, I know what you mean about it being hard to distinguish symptoms. I am not and have not been as active as I use to be so at first I was brushing my tiredness/sob off to being out of shape. Which could have been some but my surgeon told me it was due to my valve and that 'someone young and healthy like you should not be getting sob going up a hill or stairs' just wanted to add that because it can be hard to tell like you said if you are having insomnia issues your body could also be really tired from that too.

 

[epstns]

A couple of things come to mind:
1. When I first noticed that my energy level was dropping and that my exercise tolerance was falling, my internist told me "You're getting older. Get used to it." I was only 52, and didn't accept that as an answer. I fired her and found another. Once I was diagnosed, my first cardiologist wanted to treat my aortic stenosis (which was already moderate-to-severe) as if I was in my 80's. He told me to just don't push so hard, and that some day I would need surgery, but not yet. I fired him, too. My next cardio (snd his successor in the practice group) helped me to manage my care for nearly 10 years before I needed to have the valve replaced. During those years I lived my life fully, but I did notice that the advancing stenosis was slowing me down.
2. It was my current cardio who told me that he wouldn't have to tell me when to have surgery, that I would tell him when I was ready. I'm sure that he (and I) watched all the echo statistics to ensure that I wouldn't wait too long and incur permanent damage, but I was the one to tell him that "I'm tired of being tired." We then chose a few surgeons and I went for consults with two of them. The rest is history, and I'm nearly 3 years out from surgery and doing fine.

My only "real" symptom was tiredness or fatigue. I never had any of the clinical "cardinal" symptoms of advancing aortic stenosis (shortness of breath, fainting, chest pain), but I was most definitely ready to have it replaced and get on with life. I believe that if I had not been in fairly good shape and an active exerciser, I would have had those symptoms and probably had the surgery even sooner. The human body is a wonderful machine that can compensate for many of its own shortcomings, but we as "owners" need to know when to intervene and not depend upon compensating changes to continue a normal life.

To make my long story short, maybe a second opinion is in order. Given that the surgeon(s) feel it is time, it probably is time.

 

[Rebecca]

It was my current cardio who told me that he wouldn't have to tell me when to have surgery, that I would tell him when I was ready.

Steve I would like to THANK YOU for posting this before. In 2011 I listen to your post and also my younger neighbor down the street die in her sleep from unknown heart disease. At my following visit to my cardiologist I was totally honest with him on how I felt. He still did not think that it was for me to have surgery, but he did send me to a surgeon. My surgeon notes had me listed as stage two heart failure and my heart valve fell apart when the surgeon attempted to repair it. After having surgery my CBC numbers became normal. I no longer have tightness or chest pains.