Asymptomatic or Not?

[Braveheart]

Right now my aortic valve size is .9 and my gradient is 21, which is not bad. My cardio does not think I am ready for surgery, but I disagree. I do not want to wait until I have serious symptoms. I have sent my materials to the CC, and am awaiting their response.

Now the symptoms. I am able to walk 4 1/2 miles, but over the months, I am going more and more slowly, and taking more rests. I have a complication of a bad back and painful bursitis. I use a TENS machine AND a supportive belt when I walk.

When I return home, my bp is normal, but my heart rate can be close to 100, and it stays that way for hours afterwards. I have this feeling of internal "jitteriness" that is very disconcerting.

I am tired, and usually have to rest for a few hours while after my walks. On account of my tiredness, I find that I am walking less, and have gained some weight over the winter. In the past, the only way that I found that I could control my weight was through walking.

I find it very hard to separate it out in my mind how much of my problem is due to my weight, my back or my heart valve. I have the perception that the surgery would ameliorate at least some of my problems.

Have any of you been in similar situations where you really don't know how much of your problems are due to a poorly functioning heart valve?

 

[Eva]

My energy has been deteriorating for the past 15 years ... each year a bit worse than the year before and every doctor used to tell me: "Loose weight" even though I was not much overweight at the time. Only one doctor who retired early used to tell: Do not forget you have a heart problem. Since he retired and no one paid attention to my heart issue, I started forcing myself to exercise for a few weeks and then had to rest for 2-3 months waiting for the energy to come back!!.
Doctors took the shortest cut and blamed my fatigue on stress at work, depression, a few lbs overweight...anything other than my heart How wrong they were and worse was that I believed them. And of course due to my fatigue, my weight creeped up. Two years ago, my ex-cardio wanted me to lose 50 lbs (Yup). Now I know that all my fatigue during those years was related to my heart and to the deterioration of the valves ONLY. To please my cardio thinking he was right, I started taking tylenol before exercise to improve my stamina, did pilates and aerobics and went regularly to the gym until I could not move or do anything...yes I lost weight, but I could have lost my life...my valves were much worse than they showed in the echo and my surgeon took pictures of them and called my being alive as a miracle with such worn out valves. Our bodies tell us and warns us when something is wrong...after all the exercises and pilates and losing weight...again I was on the sofa for three months and the echo showed much heart enlargement.

So, my advise, go and talk to a surgeon and seek his opinion. I used to tell my ex-cardiologiest about my extreme fatigue for three continuous months...I could not exercise...I gained weight as a result. But, he never listened nor heard nor analyzed well enough that my heart might be worse than what the echo was saying...he never considered my symptoms!! (this is a top notch cardio...he kept stressing only on my weight!

 

[deano89]

i think the problem is once you know you look at everthing much closer, and its mentally draining going through this roller coaster of a ride which in its self makes you more tired
i look at everthing i do much more closer now! but if i take a step back i think nothing has really changed in the last 10 years except i am older .saying that i have eased back from heavy weights not because i cant do them but because i fear i will do more harm than good ! . i also then question wether i am in denial so it just becomes a vicious circle .
i think a lot of the problem is the heart compensates really well, so its very difficult to truly know exactly where you are ! must admit i am totally confused as i say i can do all the things without any problems yet have severe regurgitation and cardio recommends sugery ,so i suppose the only way to know for sure is once surgery is done !

 

[Kim B]

Yes, I have many situations where I don't know if my problems are due to my valve or something else. From what I've gathered, I would think a .9 aortic valve area could cause an increased heart rate. My AVA is 1.2 and I have many of the same symptoms of racing heart and exercise intolerance. I used to work out regularly at Curves for several years but cancelled a few months ago because just getting through the day at work sitting at a desk requires almost all of my energy now.

My cardio also thinks surgery can wait "at least a few more months" but since he agrees surgery will probably be needed within a year, (he's been saying that for several years) I asked him to give me a referral to a surgeon for a consultation so I can begin planning for when the time comes. I expect the surgeon to tell me now is the time.

I'm interested to read the replies from others to your question. It is really difficult to know what is really a valve symptom and not just part of getting older, out of shape, etc.

 

[tobagotwo]

Just my opinion...

I would seek a second opinion - or just a new cardiologist. If your valve opening is .9cm², your gradient shouldn't be 21mmHg, unless your heart is barely pumping at all. As you have posted and do walk, we have to assume that it is pumping, so somebody's full of beans.

Here's the chart:

Mild: <25mmHg (Valve area 2.0 cm² - 1.5 cm²)
Moderate: 25mmHg – 40 mmHg (valve area 1.5cm² - 1.0 cm² )
Severe: >40mmHg (valve area 1.0 cm² - 0.6cm²)

Unless you've misunderstood the results, either the technician isn't capable of doing an echocardiogram, or he or she can't do the math required to make sense of it. You need to have it done in a completely different place by a different tech, to get an accurate echo.

Either way, the cardio is out to lunch, too, if he doesn't recognize that these numbers don't match up. So you need to go talk to a different cardio - from a different group - too.

If your valve opening is .9cm², and you have the symptoms you describe, they should seriously be looking at surgery before you get permanent damage or are too weak for the surgery. If the gradient is truly 21mmHG, then the opening is larger than .9cm², and they need to look at what else may be happening with your heart.

Best wishes,

 

[Bina]

My last pre-op echo in 2005 showed the following:

Aortic Valve Area..........(.8 cm)

Mean Gradient..............22
Peak Gradient...............40

I had horrible symptoms, was refused a stress test, and was forbidden from driving my car.
Please get another opinion, don't delay.

 

[Braveheart]

I made a typo. According to my catheterization report,

"Conclusion:

Severe aortic stenosis based on the calculation; however there is a mean gradient of 27 mmHg across the aortic valve. The aortic valve area is calculated to be 0.9 cm2 (combining both thermodilution and the Fick technique)."

Now that doesn't sound so great. What I cannot understand is this business of waiting. Waiting for WHAT? My cardio said something about there being a 2-3% chance of stroke with the AVR. Will the stats get any better a year or two from now? Will I be in any better shape to get through the operation? Will there be a better chance of not having a stroke? It just does not make any sense to me.

 

[Eva]

I made a typo. According to my catheterization report,

"Conclusion:

Severe aortic stenosis based on the calculation; however there is a mean gradient of 27 mmHg across the aortic valve. The aortic valve area is calculated to be 0.9 cm2 (combining both thermodilution and the Fick technique)."

Now that doesn't sound so great. What I cannot understand is this business of waiting. Waiting for WHAT? My cardio said something about there being a 2-3% chance of stroke with the AVR. Will the stats get any better a year or two from now? Will I be in any better shape to get through the operation? Will there be a better chance of not having a stroke? It just does not make any sense to me.

Again, Braveheart, be brave and seek a surgeon's opinion. Seven years ago I was told by a cardio that surgery will be within 5-7 years. I asked him to refer me to a surgeon and have the surgey then...I was younger, healthier, and accepted the ideal for surgery as my heart muscle was still strong and did not have much enlargement or bicuspid and tricuspid leak...yet he insisted that I wait. I wish I saw some surgeon then! I agree with you totally
wait for what? to feel worse...the risks are the same whether now or later...maybe more later as everyday we are getting older and do not know what tomorrow holds for us physically.

 

[tobagotwo]

Okay, that gradient still sound low (Bina's, too!), but it acknowledges severe stenosis. You are already strongly symptomatic.

Eva seems have gotten the point of what your doctor is saying. And she has a point back. He doesn't want you to get surgery yet because there's a chance that you'll have a stroke. Yet, as Eva points out, the chance of a stroke is there anyway, whenever you go to do it.

Later, your heart may not be as good as it is now, or you may develop other issues that could delay or deny surgery. The odds are yours to decide.

There is nothing wrong with consulting another heart professional, be it a cardiologist or a thoracic surgeon. I would, if it were me.

Best wishes,

 

[Bina]

My last pre-op echo in 2005 showed the following:

Aortic Valve Area..........(.8 cm)

Mean Gradient..............22
Peak Gradient...............40

I had horrible symptoms, was refused a stress test, and was forbidden from driving my car.
Please get another opinion, don't delay.

My post op echo in 2007:

Mean Gradient.........7.5
Peak Gradient.........16

What a big difference in my readings.
My valve was badly calcified. A real mess!

 

[Braveheart]

I should be hearing from CC this week.(They got my stuff on the 7th). If I don't hear something positive from them, I will call my oncologist in N.Y. (I have been in remission for over 19 years, so cancer is not an issue.)When I told him last year what was happening, he said that as soon as I am ready for surgery, I should call him, and he would connect me with a heart surgeon.

He is connected with Columbia-Presbyterian- Weill Cornell. I would rather go to Cleveland, but Weill Cornell is an excellent second choice.

 

[john79t]

Tobagotwo
In your defintion is that refering to the peak o mean.

Mine is peak 57 mean33. Valve area .88

 

[tobagotwo]

They are Mean gradients from this graph. Based on this input, I have to wander if it's wrong, if there are differences in measurement that profound, if some people have so much medication that this becomes worthless, or if it's a gender-based issue:

 

[john79t]

Tobagotwo
I had one eco that clasified me as sever. 2 weeks later another one classified me as moderate. So the experts can't even agree.

 

[Braveheart]

It seems to me that "symptomatic" can often be very subjective. There are people who react to the slightest change in functioning, and others who are able to live with vastly more symptoms.

As I am learning more and more, it appears that the presence of "symptoms" is an important criteria for many cardiologists. It is possible that I put up too brave a front to my cardio, and he possibly did not take my symptoms seriously.

I would have liked a questionaire that would somehow quantify the presence or absence of certain criteria, which could then be discussed with the doctor.

 

[lance]

Being in denial is a ......................

Being in denial is a ......................

is comfortable.

I think valve replacement/repair is better done sooner than later based on my experience. The sooner it's over with the better. No need to wait until permanent heart damage has occurred. Had I been non-symptomatic the many surgery cancellations would have been easier to deal with. Being short of breath all the time is best avoided.

 

[ottagal]

Hi Braveheart,
I can relate 100% to your dilemna of 'symptoms' or 'asymptomatic'. You may want to search other threads on this subject to assist you. I have called this the million dollar question. Ever since being diagnosed with severe aortic stenosis over a year ago, I have been trying to 'figure out' whether the fatigue and exhaustion that I experience from time to time are related to the the SAS, stress or just not having a good night's sleep. Which came first...the chicken or the egg? I am someone who tends to push myself anyhow and always exercised to get short of breath and to get my heart rate up.

Because I hadn't experienced one of the 'cardinal' symptoms such as SOB, angina or fainting, it had been decided to monitor and 'wait' 9 months (next appt. June). One of the difficulties with this condition is that once the diagnosis of SAS is made with no ventricular hypertrophy, the pressure is then put on the patient to report symptoms (which is very subjective) to decide on timing for surgery (at least in my case).

By the way...my last echo showed a valve area of .83, mean gradient-36 and peak gradient-66. Interestingly, the echo before this one showed a slightly higher mean and peak gradient.

I have also read some reports that cardiologists will do a stress test to determine if a patient is truly asymptomatic. Sceptic 49 posted on this.

Good luck and keep us posted!

 

[skeptic49]

Yea, Braveheart, this is one lousy situation that we find ourselves in. My gradients in Nov. were 22 mean and 36 peak with a valve area of 1.3 cm2, but I'm 6"5" and 235 lbs. Adjusted for my physical size, my valve area index is in the severe range. I have symptoms - throat tightness on exertion. And the palpitations up into my throat feel like I'm going to explode...which is probably my 4.3 cm aorta pulsing. After the nuke stress test the cardio believes that the symptoms are due to AS. Yet we wait. WAIT FOR WHAT? Until I get weaker, heavier, older, or drop dead?

I get angry when I think about it. Basically, it's the waiting room until I keel over sometime, somewhere. S**T!

Jim

 

[heyrebekah]

Have any of you been in similar situations where you really don't know how much of your problems are due to a poorly functioning heart valve?

I have been asking myself this all the time for the last year or so. I used to be in such great shape. I ran the Chicago marathon in 2004 and 2005 and used to hit the gym every day, sometimes twice a day. The last couple of years life a wedding and new house got in the way and I gained about 20 pounds and now I feel like I have no energy at all. I'm tired almost all the time. I wonder if that's due the weight, lack of exercise, my valve...probably all 3.

Often I'll be running late for my morning train (because I can't drag myself out of bed) and when I see it coming I'll full out sprint for a block and half and then race up the stairs to the platform. I huff and puff like crazy for the next 10 minutes, but is that due to the valve? Or is that just tough on anyone? Same thoughts when I am out of breath after 3 or 4 flights of stairs. I decided that even if my lack of energy isn't because of the valve, I want to get it fixed so that I can work on getting back into shape without freaking out with stress and fear.

 

[lbecker]

Again, Braveheart, be brave and seek a surgeon's opinion. Seven years ago I was told by a cardio that surgery will be within 5-7 years. I asked him to refer me to a surgeon and have the surgey then...I was younger, healthier, and accepted the ideal for surgery as my heart muscle was still strong and did not have much enlargement or bicuspid and tricuspid leak...yet he insisted that I wait. I wish I saw some surgeon then! I agree with you totally
wait for what? to feel worse...the risks are the same whether now or later...maybe more later as everyday we are getting older and do not know what tomorrow holds for us physically.

I would also recommend you see a surgeon. Your Cardio sounds like mine
yet I talked to a lady today that has the same Cardio as mine, he kept
saying, you don't need anything done. He said alot more that was
wrong info. anyway she had surgery and her valve was in terrible shape
and they told her it was good she had it replaced now. Cardio I believe
don't focus on what type of future you will have if you wait to long, they
can give you medicine and they have done their job. After talking
to this lady today I feel relieved, the same Cardio tells me I don't think
you need this done now, and gives me the stroke and die speech, if I
wait till he thinks I am ready I may die. I know now I am doing the
right things, listening to two surgeons, my primary care and my previous
Cardio who is retired, have the surgery before it is an emergency, better recovery, more quality of life afterward, and you can look for the right surgeon and hospital. Get another doctor or at least another doctors
(surgeons) consult. Laura