Was/is your valve disease symptomatic before valve replacement?

[CJoelHenry]

My symptoms are in line with what I see here

My symptoms are in line with what I see here

Hi Aaron, what a great question.

I have had knowledge since I was a kid that my vavle needs replacement "some day"

Being diligent through my 30s and 40s I always saw a cardio guy every year or two and was always told we will keep an eye on it, some day it may need replacement. The last time was in 2002, then last year (May 2007) I went to see the cardio guy again, they ran the same tests and he is saying it is now time. I went and saw another doctor, and he said it should be done ASAP too.

Well, I had just got onto my wifes insurance the previous January, and there is a 17 month Pre-existing clause so now the 17 months have passed and all lights are green, except I am, like others here, dragging my feet.......

In the past year my symptoms have gotten very noticeable, especially when going up stairs. I have always had tons of energy, more than most, in the past couple years, I have slowed down and I am only 49.

I had been working out real regular, I had to stop that since both doctors said that was high risk, and this is not something you get a second chance with. or as AH said you "fall off the perch "...!!"

Pamela made some observations that I had not thought about, but my feet have always been cold too, when using tools in exerting positions, pain in my back, and under ribs.

I always knew I had certain "limits", I could run, but not far or long.

I called to get a heart cath test done now that the insurance will pay for it, I hope that I can get a Min Invasive VR, but will not know until the cath test if that will be an option.

In the past year I have gotten over the "rock in the stomach" and educated myself to what is going on, and been more in touch with symptoms that I may have disregarded in the past.

I am going to do this this summer, no sense putting it off.

Thanks in advance to all those here, this is not easy, but I have at least made my first post here.

 

[Gail K]

I have moderately severe aortic stenosis. I was having pretty bad symptoms of fatigue, shortness of breath and light headedness during a period of high stress and lack of exercise. I was constantly aware that I had a heart problem.

After I was able to remove myself from the stressful situation and I started exercising again (walking, including up hills, and mild arm exercises) I very, very gradually improved. Then I started a form of swimmercising (sp?) - pedaling with my legs and using my arms. The first time or two I was tired the day after, but I continued and after only a week or so of doing it every other day I noticed I felt a lot better. Now I'm less fatigued, only have SOB when climbing steep steps and I don't get light headed anymore. I feel so much better that I actually forget I have a heart problem for long periods of time.

Has anyone else had an experience like this?

P.S. One other thing I think might be helping is I drink a cup or two of good quality green matcha tea every day. I understand the vitamin K in green tea helps calcium get absorbed into your bones rather than your soft tissue.

 

[Faye]

Great Thread!
Like some here, I don't remember a time when I didn't know about my bi-cuspid aortic valve and the need for future surgery.

About 1 year befor my surgery, my cardiologist said that my measurements indicated surgery time was approaching but his preference was to wait until I was showing some symptoms. I didn't realize it at the time but I was already having symptoms and in that year the symptoms increased in severity and duration.

The tell-tale symptoms I had were:

• Being unable to hold my arms over my head for very long,
• Being very uncomfortable standing for more than a few minutes,
• Being short of breath - walking up a short flight of stairs had me gasping for air and sent my heart racing and even during normal conversations I felt like I had to stop and gulp in air,
• Having "heavy legs" that didn't want to move,
• Having a tight sensation in my chest - no pain, just tightness,
• Waking up at night coughing and coughing and coughing, and
• Having the need to sleep with my torso elevated with a couple of pillows.
  
  What I didn't realize was the overwhelming fatigue that I was feeling was part of the symptoms. I thought being tired all of the time was because I was getting older (45) and because I traveled continually for my job. In my doc's notes, he said that "patient complains of fatigue due to age and travel but he believed it was related to the decline of the valve function"
  
  The fatigue was the first thing I noticed that disappeared after surgery - it made me realize how bad I really did feel. Trust those of us who have gone down the path -the symptoms are not in your head!

 

[ponygirlmom]

I personally can't decide if I'm making it up in my head, if I'm just really out of shape or what....

I think that in the past, you thought your symptoms were something else. You didn't connect them to your heart. Now that you know various heart symptoms, you can identify them. They are not in your head!

I never had calcification, but I did have regurgitation, not to mention a giant empty aorta.

I first started to have symptoms a few years before I was diagnosed, but it never occurred to me that I had a heart problem. I would be doing something that required breath control, such as singing or reading aloud, and out of nowhere my heart would start to beat very strongly. Sometimes I would get out of breath. I thought I was having some sort of allergic reaction to something. This would only happen occasionally, so I didn't think "heart trouble."

Also, about three months before I was diagnosed, I found I could not tolerate the heat. I had been riding horses in high heat all summer a never thought a thing about it. Then gradually I had trouble handling heat.

Finally, I developed a nagging pain and stiffness between the shoulder blades, right behind my heart. It was my growing aneuryism. Of course, I never thought it was a heart problem!

It wasn't until my heart began to beat unevenly that I went to get it checked. By then I was also having more episodes of strong heartbeat, breathlessness and heat intolerance. By then I had figured out that I had a heart problem!

Some of my symptoms got worse between diagnosis and surgery, and some got better. For example, Hawthorne kept my heart beating evenly, and my back pain settled down to a dull roar. However, as my aorta kept getting bigger and my valve was leaking more, I developed even lower blood pressure and got tired and dizzy more easily.

 

[ponygirlmom]

So basically my aortic valve is pretty sweet despite the aneurysm, and I apparently don't have a very good reason to be so out of shape.

Maybe it's time to get the REST of your body checked!

Besides, didn't you say that you had very much cut down on your exercise, at least for a while, because you were scared about how it would affect your heart? I seem to remember that. Could you have gotten more out of shape than you thought?

 

[Gail K]

What is green matcha tea though?

Hi Susan,

I think Asian women have fewer problems with osteoporosis and it is attributed by some to green tea.

I don't really know what matcha means, but it is Japanese green tea and it's supposed to be good quality. You can get it on the internet by doing a search under "matcha green tea". The kind I get is in powdered form, which means you get the whole leaf in your drink - the way the ancient Chinese drank it - and you're supposed to get more complete benefits from it. I hope I don't get in trouble for saying I get mine at www.mercola.com I'm not affiliated in any way. There are other suppliers on the net also. I use an Aerolatte frother I got for about $20 at Amazon for the tea because the powder gets lumpy in water.

I'm really glad to hear your cholesterol is being helped by green tea and you think you may be feeling better because of it - at least it means I'm maybe not going bonkers by thinking it's helping me Maybe it's helping my cholesterol also - I just don't have it checked often enough to know.

I see you live in Sedona. Beautiful area! I have a good friend who lives there.

 

[Sharon4495]

Symptoms...

Symptoms...

I am still waiting for word on when surgery for me might be for an aortic valve replacement. My symptoms to this point have been:

Extreme Fatigue...I mean extreme. I can barely make it through eight hours of work. I don't remember not feeling tired.

Shortness of breath with exertion.

Heart Palpitations

Ankle swelling - I have to wear those cute medical hose on airplanes! I usually put them on after I sit down and take them off when I leave my seat!

That's it. The tiredness causes me the most stress. Part of me can't wait to have the surgery just so I can eventually wake up feeling rested!

 

[cday]

"sudden death thing"

"sudden death thing"

My husband didn't recognize ANY symptoms before his "sudden death thing" -- that may be because of his good physical condition and with a lot of exercise come aches and pains that you "push through".

Looking back his symptoms pre-surgery were: 1) transient mild chest tightness upon warming up for tennis, 2) Lightheadedness while singing at church.

After his initial work-up after the cardiac arrest, the cardios were willing to wait -- we were not and asked to go ahead an talk to the surgeon. He also thought we COULD wait if we wanted. Provided he limited his activities. After surgery he told us the valve was much worse than anyone thought.

So, I'm not too confident in the test - Echo and Cath. to really determine what the valve condition is.

 

[SHEEPDOG]

I thought I was ASYMPTOMATIC

I thought I was ASYMPTOMATIC

Arron,
I knew about the AVR being a SOMEDAY thing for about 30 years. It was a series of events that got me to an ultrasound that showed the valve area at 1.2 cm. A subsequent cath showed the area at .8-.9cm. THATS A (9mm ROUND OR LESS! (cops like to think in measurements we know) Thats when I realized the "OUT OF SHAPE" wasn't really it. I got winded way too easy and was tired A LOT. Use to fall asleep at the computer at work. Never felt rested! I couldn't wait to get the AVR over and start to be NORMAL.
Now 5 weeks post, I feel GRRRRREAT! I am back to work, (although not full duty) and I walked up a hill today that would have done me in for 10 min a few weeks ago. Today I BREEZED up and didn't notice. I love my new life!
I would bet that what you think is O O S is very much being SYMPTOMATIC. It wasn't fun but the difference is well worth it.

 

[Gail K]

Thanks for the info Gail. I'll look into it.

Actually, we don't live in Sedona, and have only visited there a couple or few times. It is so beautiful there. I want to go again soon and take one of the "pink jeep tours" that are so well known there. Actually, when that photo was taken, my husband had his private pilot's license for a year when he flew us there himself on my first "long cross-country" with him and that's my "brave, game face..."

I took the pink jeep tour and it is very nice. I'd also love to visit Sedona again one day. I wouldn't mind horseback riding there. Nice to have a hubby with a pilot's license!

 

[Gail K]

Finally, I developed a nagging pain and stiffness between the shoulder blades, right behind my heart. It was my growing aneuryism. Of course, I never thought it was a heart problem!

This is interesting - I've been getting what feels like a stretching of my skin across my back at heart level when I go to bed at night and lie on my side/stomach. I never attributed it to my heart, but now I wonder. Is this a symptom of a growing aneurysm? I was never told I have an aneurysm, but this has started just within the past few weeks. Should I be worried? Does the aneurysm go away after surgery?

 

[ponygirlmom]

I just learned of my BAV with moderate-severe regurgitation within the last year.... I don't feel like my cardiologist takes me serious.

I think it's time to say bye-bye to that particular cardiologist. Have you consulted with a cardio-thorasic surgeon?

 

[ponygirlmom]

This is interesting - I've been getting what feels like a stretching of my skin across my back at heart level when I go to bed at night and lie on my side/stomach. I never attributed it to my heart, but now I wonder. Is this a symptom of a growing aneurysm? I was never told I have an aneurysm, but this has started just within the past few weeks. Should I be worried? Does the aneurysm go away after surgery?

An "aneurysm" is an "enlarged aorta." If they replace or repair your aorta, it will be the normal size again. My mid-back pain disappeared immediately after surgery.

 

[Gail K]

An "aneurysm" is an "enlarged aorta." If they replace or repair your aorta, it will be the normal size again. My mid-back pain disappeared immediately after surgery.

Thanks ponygirlmom. Since I have aortic stenosis (narrowing of the aortic valve) I imagine it's unlikely the stretching feeling in my back is due to an aneurysm.

 

[skeptic49]

The Symptoms Dilemma

The Symptoms Dilemma

Good thread, Aaron!

When I was diagnosed with mild AS in 2004 I was still jogging. Witin a year, though, I couldn't jog anymore. It felt like my head was going to blow off. But I passed a treadmill stress test in 2006 so go figure. Now mid-2008 the AS has progressed I was told and I do have chest tightness, get winded climbing hills and steps, palpitations, and just recently some occasional numbness in my left hand. I also can only really get comfortable sleeping on my right side, because the heart pounds too much otherwise especially if I lay on my left side. SO I don't think this is merely being out of shape. Like someone else said: "these symptoms are not in your head."

I've been seen by two cardiologists since being diagnosed ion 2004. The one I prefer actually does the echos himself, but neither one of them is very forthcoming with much hard information. Partly I'll take the blame because I didn't press them for answers since until now the disease was not severe. Obvioulsy it's time for me to get cracking and ask plenty of tough questions. The biggie, of course, is just how many symptoms and how severe do they have to get before it's showtime.

Jim

 

[Leah]

And congratulations on that

And congratulations on that

Now 5 weeks post, I feel GRRRRREAT! I am back to work, (although not full duty) and I walked up a hill today that would have done me in for 10 min a few weeks ago. Today I BREEZED up and didn't notice. I love my new life!

And congratulations on such a wonderful recovery! It's also an inspiration.
Leah

 

[marilyn]

Aaron - the symptoms that I had with the valve was it became hard to climb stairs without stopping. As I look back, it started with few symptoms and increased. I had fullness in the chest, and I remember at times it was difficult to speak. I could speak, but it was like something making it harder to speak. It did not happen all the time. I would get really tired at times. The odd thing about the symptoms, they would come and go. I was still working out on the treadmill and doing weights. I have CAD, so I got angina on the treadmill too. Since the valve is fixed, I still have angina, but I can climb the stairs without any problem. I really think the fatigue that I would have was from the valve. Symptoms would come and go. The day I went to the surgeon, I felt and looked great. That is the problem with heart related things. You can do fine, and then something happens. Who knows? The day after the TEE, I was put in for emergency surgery. My valve was really bad. So, I guess the best thing to say is go and get yourself checked out if you are in doubt.

 

[pamela]

Thanks ponygirlmom. Since I have aortic stenosis (narrowing of the aortic valve) I imagine it's unlikely the stretching feeling in my back is due to an aneurysm.

Gail, please don't diagnose yourself. If you have pains and odd feelings where you shouldn't be experiencing that kind of sensation, don't hesitate to see your cardiologist. The only definite way to diagnose an aneurysm or dilation is through diagnostic imaging or during surgery through direct examination of your great vessels.

Everyone has a different expression of valve and aortic disease, there are no text book cases since each of us is so different. When in doubt, check it out. You don't want an inexperienced surgeon thinking he's going to have an uncomplicated valve replacement only to discover that he's faced with a complicated aortic graft procedure.

Take Heart, it's easier to be prepared than it is to be surprised,
Pamela.

 

[Freddie]

Nope!
I had no symptoms.
None whats so ever.
Until that one night when I went to bed, put my head onto the pillow and realized within seconds I could not breath.

 

[Mercia]

Was aware of having mitral stenosis due to rheumatic fever that I had as a child - but have been very active for 46yrs since then with no symptoms/issues until about 2 years ago.

Developed bouts of shortness of breath, when walking small distances or up stairs.

Fullness and difficulty breathing, after a full meal and a glass of wine. This progressed to always feeling very tired, and lightheaded. Had a few bouts of bad chest colds just prior to the symptoms getting worse but GP diagnosed this as bronchitis (fired that GP since then).

Happen to notice that my Pulse was at 153 when doing a quick BP scan in the grocery store when visiting Victoria BC Canada in March 2008. My friend a RN told me to get this looked at immediately.

Felt worse everyday with a few short blackouts - but flew home and got myself to the ER 4 days later with heart rate around 179. Was diagnosed with Mitral valve stenosis .7cm diameter and regurgitation. My heart rate was still at 153 to 179 until they were able to slow it down with medication.