New here, and diagnosed with AS

[R1Phrankey]

Hello,

Let me introduce myself. I am male, 47 years old and from the Netherlands.
I am diagnosed with aortic valve stenosis. I have an active life, mainly road cycling, but also mountain biking.
Since a few months I know that I have aortic valve stenosis.
When starting with a bike ride, the first 20 or 30 minutes I have a certain chest pressure, which will disappear. According my cardiologist, this is a called a 'walk-through angina'. After this, I can cycle for hours without any problem. During cycling, I often have my hearth beating with > 180 bpm (when sprinting or climbing). This might be dangerous, but I do not have effects like dizziness or something.

The echo in January showed a peak gradient of 56 mmHg and a valve area of 1.1 cm^2. This is all in the moderate stenosis category.
Last Monday I had an other echo (other hospital, other cardiologist, specialized in sports cardiology) and the result was a peak gradient of 63 mmHg and a calculated valve area of 0.75 cm^2.
This would imply a severe stenosis. His conclusion is that I am candidate for valve replacement within next months.
I am curious if my own cardiologist has the same conclusion. Still waiting for a next appointment with him.

For me, the difference between both measurements is rather big. Hopefully, my aortic valve is not degenerating that quick.....
Do you know if this is a common measurement spread for echo techniques?

About valve choices, with my active life and my age I probably would go for a mechanical valve.
I have no idea what kind of valve it will be.

For aortic valve replacement, is this always with OHS or is minimal invasive surgery also a common practice?
If there is a possibility to go for minimal invasive, I would probably choose that one.

Any information on this is welcome.

regards,

Frank

 

[Sten Osis]

Your symptoms sound exactly like mine before I had aortic valve replacement surgery, which I had last year at the age of 49. I have to get to work now I will try to give you more information about what happened to me later. but I can tell you that it was a very positive experience.

 

[Sten Osis]

Also, I had a cardiac catheterization after the echo, since it truly measures pressure and they want to know if one has any blockages or narrowing of the coronary arteries.

 

[epstns]

Hi Frank, and welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. I'm a bit older than you, and was not diagnosed with aortic stenosis until I was about 52. I had my valve replaced at 63 and am now 3 years post-op. Your symptoms sound familiar, as I was able to run and work out quite aggressively until about a year before my surgery.

With respect to the variation in echo measurements, that is quite common. I cannot state the expected amount of difference between measurements by different technicians or by using different machines, but we do know that variation is very common. Most of us who were waiting a long time learned to look for a pattern in a series of measurements, rather than assigning high importance to any one measurement.

In the US, most docs put more importance on the emergence of "cardinal" symptoms - shortness of breath, fainting or chest pain. Until you have any of these, they are usually content to watch and wait, assuming that the human body can do a lot to compensate for its shortcomings. Once the valve gets past a certain point, the cardinal symptoms present, and the patient is felt to have better odds of living through the surgery than without.

It sounds like you may not yet be at the point of presenting clear symptoms. If that is the case, they may want to either do an angiogram (heart catheterization) to get more concrete measurements of your valves, or they may simply recommend echo's every 6 or 12 months until a clear pattern emerges. Most doc's aren't unduly alarmed with one test - they want to prove that one or the other is "official" and true.

Don't panic. Come here to ask all your questions. The folks here have a wealth of first-hand experiential knowledge and are very willing to share it with others who will follow in their footsteps.

 

[R1Phrankey]

Thank you for the answers so far.

@ Mike: I am very interested in your story, especially since it looks like you are also riding a bike. I am really interested in picking up active sport life after surgery.

@ Steve: Yes, I am aware of measurement spread, but for this moment I only had 2 echo measurements and with this small amount it is hard to tell for me if this is normal spread. Hopefully my own cardiologist will start with another echo next time.
I am really curious about the next stage. The conclusion from my own cardiologist was that it is a moderate stenosis and the next appointment has been made for Jan 2015. However, he could not answer my question about the moderate stenosis and my road cycling. Therefore, I have visited a sports cardiologist and his conclusion was to start with the surgery process because the stenosis is severe (for the calculated area, not for the pressure gradient).
I really don't know if I am a candidate for immediate surgery. I have some of the cardinal symptoms. I have chest pain and when this occurs I have the shortness of breath. However, this is only present in the first 30 minutes of my sports. After this period, my body becomes more efficient and the pain disappears. Also the shortness of breath disappears. The sports cardiologist has the opininion that with road cycling and these symptoms it can become dangerous. I am allowed to carry on with road cycling, but I should only use the small chain ring (i.e. take it easy, no sprinting, no climbing).
Ofcourse I can change my life style by stopping active sports to delay the need for surgery.
I really don't know what next months will bring me, hopefully the next visit my cardiologist can take some of these uncertainties away.
Since I know that I am a candidate for a valve replacement, it would be okay for me if it is already on a short time base. For this moment I am in a good health, which will only help me in the post-op recovery.

 

[Sten Osis]

Thank you for the answers so far.

@ Mike: I am very interested in your story, especially since it looks like you are also riding a bike. I am really interested in picking up active sport life after surgery.

Frank,

Your symptoms are exactly the same as mine were. I'm also an avid cyclist; racing MTB and road bikes for the better part of the last 15 years. Over the 2 years prior to my surgery last June, I experienced the same chest pressure that you do. This was also described to me as angina. On the last bike ride I did before going through the diagnostics, I felt such discomfort that I had to stop, get off the bike and grab my knees. I was getting cold sweats and felt like I was going to die. I called a cardiologist and immediately got in for a stress test. The echo part of the test showed a problem with the aortic valve. The next step was the cardiac catheterization, which backed up the findings of the echo. The cardiologist explained to me that the left ventricle walls were thickening to the point where they weren't getting enough blood anymore, thus causing the angina. He instructed me to stop all bike riding and not to exert myself because I had a 2% chance of sudden death. I obeyed. He referred me to a surgeon.

I met the surgeon and we discussed valve options. He strongly recommended a mechanical valve, mostly due to my level of physical activity. He didn't think a natural valve would last much longer than 5 years in me, so I chose mechanical and scheduled the surgery.

Over the years leading up to my surgery, riding and racing, I noticed a gradual decline in my output. I didn't know why, but even though I was training as hard as my friends, I was getting slower and slower on the bike. Well, now I know and I'm really glad that I didn't kill myself before getting diagnosed and treated.

Mike
(on my Trek Superfly 100)

 

[Mentu]

Riding Again

Riding Again

Hi, Frank, I also had a similar experience. Most of my riding is for distance more than speed but I began noticing that I was doing worse as time went on. At first, I thought I just needed to exercise more but when I tried, it didn't seem to make a difference. In November, 2008, an echocardiogram showed my valve area to be 1.25 cm[SUP]2[/SUP] and my cardiologist thought my loss of energy was probably not heart related. Still, when I began to complain of shortness of breath at times, he ordered another echo test in July, 2009, which indicated the valve was at 0.75 cm[SUP]2[/SUP]. He felt certain the second test was faulty so he ordered a heart cath for August, 2009. Before the heart cath I experienced radiating pain in my chest at which time he sent me to meet my surgeon. The heart cath in August, showed that the valve was closer to 0.70 cm[SUP]2[/SUP] and so badly calcified that it was not obvious whether it had two or three leaflets. Frank, for sure, a valve can change in a matter of months. My surgeon told me that in the final stages the valve can deteriorate quite rapidly. Finally, my valve was replaced in September, 2009, and I almost could not believe how much better I felt. I was healthy with no coronary artery disease or lung problems which, I think, helped me make a rapid recovery. My cardiologist didn't want me to ride for the first six months but when I did get back on my bike, I found a power in my legs I didn't have before so there is riding after valve replacement. Let us know how we can help, Frank.

Larry

 

[Sten Osis]

Larry,

That sounds so familiar. I also thought I wasn't training hard enough; just getting slower and slower. The whole time I was thickening my heart muscle, which eventually led to the angina. I'm a true "heart rate junkie" and I'm fairly tuned into my perceived exertion as compared to my actual output. I've used a power measuring device on my bicycles for years, so I can compare apples to apples, as it were. After my surgery the surgeon described my old aortic valve as, ".....like a bunch of little stones" and "really ugly". I was able to get back on the bike last September and found the same as you..............power in my legs again. Wow, what a great feeling! Although I know that it will take a while to get back to racing form, I'm really enjoying this new feeling......

Mike

 

[Ryan CA]

Hey Frank,

Sounds like you need a more precise test like a CT and/or a heart cath. Once they have the more precise test to establish a base line, they can do follow up exams using just the echo to track progression of the defect.

 

[R1Phrankey]

Wow, this is good to know that some forum members had same experiences as I have now. And it is even better to read that you are very positive after the AVR.
Are bike rides even better afterwards, or do you experience any issues caused by medicines?

The echo showed also a thickened left ventricle wall. The symptoms I have are probably slightly different from yours, since I only experience problems in the first 30 minutes of cycling. After this, I do not feel any chest pain, shortness of breath or dizziness. I can ride my bike without problems then, even sprints and climbing are not giving any issues (not yet). Now I have spoken to the sports cardiologist I know that this might give a dangerous situation, and he told me to stop with this. I am only allowed to ride in D1 (low hearth rate).
Hopefully, I can get a heart cath within a short time, because since I know that I have these problems, it is effecting my bike rides. I keep on thinking about this valve problem and the possible effects.

 

[big_L]

Re - heart cath. Some doctors will not try to measure the gradient across the valve during the cath, due to the risk involved in 'pushing' the cath through the valve. Personally, I'd ask for another echo. Regardless of the results, you are on a path with only one good outcome (AVR). The doctors truly don't know where you are on the mortality curve. It comes down to a educated guess. I would get another echo and start talking to surgeons.

 

[R1Phrankey]

What I have heard about the heart cath is that this is standard procedure (here in the Netherlands), but mainly focussed on the arteries. When going for the AVR, the surgeon wants to be sure that this is the only replacement to take place.
With my next visit I will definitely ask for another echo.

 

[river-wear]

Frank, you could ask about a TEE (trans-esophageal echocardiogram). Instead of trying to see through your chest, they put a probe down your throat to get a much clearer view of your aorta, and I believe the results are more accurate. It definitely gives the doctor a much better view of your valve. Here in the US they sedate you after the distasteful throat-numbing gel, so it really isn't as bad as it might sound.

 

[R1Phrankey]

Hi Michele, I already got my TEE.
This TEE was carried out to check if my aortic valve was biscuspid. This was not the case, it was tricuspid.
Here in the Netherlands you will got the throat numbing spray, no sedation.
It was not that bad, the TEE took only 10 minutes.

 

[river-wear]

Hi Frank, if you had a regular (TTE) echo and then a TEE, that could certainly explain a fair amount of the variation in measurements. There is always variation of course, but two identical tests close together should be consistent if the technicians are well trained. (I had a poor tech once who was off in her measurements by nearly .75cm - the difference between a routine test and surgery.) I did get "upgraded" from moderate-severe to severe after having my TEE; however, my ejection fraction was better than we thought.

Best wishes for a speedy resolution to the doubts. I think it's worse to be wondering than to know just where you stand.

 

[R1Phrankey]

I have to wait a few weeks before I can visit my cardiologist again. Next visit scheduled for April 23.
Thanks to our health care system and waiting lists in the Netherlands.

 

[bw00]

Hi! I don't know where your cardiologist is, but I got the VU and have never once experienced a waiting list. The VU works together with the AMC and Leiden and I can literally call today and they'll make time for me tomorrow if I need it. Maybe that's an option for you too? Now that I am waiting on open heart surgery they make all the time available I need. Normally you only get one conversation to discuss your surgery. I have already had 3, 3 weeks in a row because my parents kept coming up with new questions. I have also noticed with the cardio section that if they scheduled me in later and I would call and say that I wanted to come earlier, they could just move me in earlier. Anyway good luck fellow Dutchie

 

[R1Phrankey]

Wow, I did not expect this kind of scheduling in the Netherlands.
I have an appointment in Roosendaal. They are very busy and the earliest possibility is in 3 weeks. I had a second opinion last week in Veldhoven, at a sports cardilogist and here I also had to wait for 5 weeks!
I really like to speed up things now, because I have the valve replacement accepted and just want to get rid of the stenosed valve.
Surgery will probably take place in Breda. Hopefully all before summer. I would like to use the summer period for recovery.

 

[bw00]

I understand, i will also use the summer period for recovery. I actually live in Breda now, but always travel to Amsterdam for hospital visits. Also because I have been under treatment for my heart disease there since I was born. I hope it all works out for you! And maybe otherwise a second opinion in at the AMC or or VU? Or third haha