new to the forum - hodgkins survivor, severe aortic stenosis w normal ejection frac?

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GrtDane

Member
Joined
May 27, 2012
Messages
7
Location
Vancouver Island, BC, Canada.
Hi everyone, I've had the pleasure of reading all the posts regarding radiation treatment due to Hodgkins, which I had in the early 80s, along with ABVD and MOPP chemo treatments for a year. Now, at 42, I have been diagnosed with severe aortic stenosis. I am seeing an internist on Thursday with the hopes of being fast tracked to a AVR. Over the past six months I have been finding myself getting really exhausted easily, and on my walks with my dog on the switchback coming up, gradual and some steep sections of trail, I was having heart pain, which would pass. My wife commented that I was walking more, but was surprised at how out of breath I was getting.

Sometimes the pain would come when I was in bed, just a short almost burning sensation. It seems just doing basic things now, like planting a few strawberry plants, will make me too tired. Anway, that said, my GP heard a murmur and sent me for an echo. My echo shows that I have an ejection fraction of 67.2 percent. Wouldn't that mean I am getting plenty of blood? I am wondering why symptoms seem to be showing up now? Other points of my echo are: "The ejection murmur arises from the aortic valve which is of markedly increased density with severe restriction of leaflet motion, only slight motion being seen in the right and non-coronary leaflets. These leaflets show extensive calcification.

"No chamber enlargement. Left ventricle mass currently measures normal and 202gm and mass index at 92gm/m squared. Overall systolic function is normal and wall abnormalities are not seen." My question is, aren't these two statements at odds with each other? Honestly, I just don't know what to think. The report goes on to say:

"Doppler examination shows a peak transaortic flow velocity of only 3.1 m/s yielding a peak pressure gradient of 37 mm and a mean gradient of 23 mm. Valve area by continuity equation is calculated at 1 cm square. These correspond with aortic stenosis graded moderate, but may represent an underestimation of the degree of stenosis, technical difficulties being encountered in Doppler assessment. Stenosis by 2D imaging would certainly be graded severe. Similarly aoritic regurgitation is present, difficult to quantify, with regurgitant mixing with mitral inflow. This is thought to be mild."

"Tricuspid regurgitation is graded mild yielding a normal systolic pulmonary arterial pressure. IMPRESSION : This relatively young patient has developed what appears to be severe aortic stenosis on 2D images. This is at least moderate based on doppler assessement which is suboptimal and this warrants confirmation with transesphogeal echocardiagraphy. Cardiac consult is recommended."

Sorry for the long post but this is what the report I got says. My GP actually had a TEE booked for me but the person who does those said to send me to a cardiologist and not to do the TEE because it wouldn't reveal much more. I don't know guys, here this report says severe this and that but that the heart is performing normally. And I feel terrible right now, so damn tired and having the feeling of pressure in my chest area, not the sharper burning sensation because I am not doing the long walks any more, but kind of like the feeling akin to when someone touches say a bruise you might have. Just kind of slow, rolling pain in my heart, not acute or super painful or anything. Kind of hard to describe. Well, I went on a long time here, I guess I am wondering if anyone has any comments for me on the above information? Any advice would be greatly appreciated. Thanks so much.
 
Howdy Canuck, and welcome !
From my own experience, there is no point in waiting too long to have this surgery. When the valve is down to 1cm, many of us
find that it goes downhill much faster. Even though my EF stayed in a good range, my valve was in reality down to .8cm and I had
difficulty to walk and talk without getting weak and SOB and eventually chest pressure, dizzy etc.
Don't put yourself in danger....you should be under the care of a good cardiologist.
 
EF is not a measure of total output or whether output is adequate. It means your left ventricle is emptying 2/3rds of however much it fills. Yes, that's a good number, but filling (diastolic function) might be reduced for other reasons, and heart rate is another factor that affects output. The echo reader waffled between severe and moderate aortic stenosis because the valve's appearance is worse than the calculated size and pressure gradients. Severe is in the area of 0.7 to 0.8 cm with pressures of 70 peak and 40 mean. That's what I had right before surgery, but I was still asymptomatic. I had a somewhat enlarged and hypertrophied (thickened walls) left vetricle and was maintaining an EF of 65%. You have a mixed picture. Your symptoms are not quite consistent with your pressures and normal left ventricle. That doesn't mean they aren't meaningful nor due to the stenosis nor would be improved by an AVR, but it's not very clear at this point. You do need to see a cardiologist and ask him to explain your symptoms if he thinks it is not from your AV.
 
Thanks for the replies everyone. It is a bit complicated at this point and as was pointed out above the symptoms and the numbers in the echo confused me. I am hoping I can get to the bottom of it all when I have that appointment on Thursday. I will report back what that doctor says, and/or what tests he orders. Thanks again and all the best.
 
Thanks for the replies everyone. It is a bit complicated at this point and as was pointed out above the symptoms and the numbers in the echo confused me. I am hoping I can get to the bottom of it all when I have that appointment on Thursday. I will report back what that doctor says, and/or what tests he orders. Thanks again and all the best.

If you're symptomatic, and it sounds like you are, you will probably face replacement sooner than someone with the same numbers, but no symptoms. If this was your first echo, then it's always a little hit and miss. The numbers can be off by a fair amount, and many times are. The cardiologist might suggest a heart cath or perhaps a TEE. I think you will have a better idea of what the progression of the valve deterioration is after Thursday's appointment. We'll be waiting to hear what you are told.
 
Good luck for thursday :)
hope it goes well and you get the answers your looking for!
Love SArah xxx
 
Hey gang, well, went to the doc my GP sent me to, and he is an internist. First thing he said after he read my echo was "why didn't he send you to a cardiologist?" Anyhow, he did know more than the GP and asked a lot of questions. He said what we all know, not to do any excess exertion, no lifting and stuff. He took an EKG and said my heart rate was 120, so he gave me a prescription for beta blockers. Not sure what those are but will google. He said they may make me feel better, but if they make me feel worse stop taking them.

He referred me to a cardiologist and said he would indicate it's a priority. Might see the new guy in two weeks or so if I am lucky. In the meantime, I feel pain in the heart quite a bit, more frequently these days. In the end he said valve replacement for sure. Thanks for the replies above folks.
 
Hey everyone, well, been to internist, and was referred to cardiologist who immediately scheduled an angiogram. Just had that, and have been referred to the surgeon for aortic valve and aortic root replacement. I see him Aug. 9. So it's on, I guess. The angiogram determined my root was enlarged at 44 mm. It says EDP = 22, but I don't know what that means, and also the not helpful report I got says aortic valve mean gradient = 30 mm Hg.

I really didn't get a chance to talk to the cardiologist, he didn't stop by after but while I was on the table he said he was referring me to the surgeon. He also said something about the chemo distorting the aortic root? Anyway, I thought about calling him up to ask a few questions but now just figure I will wait for the surgeon. Do those numbers above mean anything to anyone? The good news was my coronary arteries were all clear and I had an EF of 60. Thanks in advance, hope everyone is well. All the best.
 
GrtDane- I am no expert on all of your data, but my story is a lot like yours. I too had radiation for Hodgkins in the early 80s and later developed AS. My doc first noticed the murmur years ago (maybe 10 years) and at first echo results were normal and I was totally asymptomatic for a number of years. About a year and a half ago I started having what I would call mild symptoms - just felt out of shape. At that time, my echo data was pretty good with a healthy 65-66% ejection fraction. But the symptoms got worse and even with a good ejection fraction I started getting really short of breath, etc and had a pressure gradient around 100. At that point, replacement was the only option. I had it replaced with a tissue value in March of this year. My symptoms were gone immediately after surgery. My impression is that while certain echo data can warrant surgery, symptoms are the ultimate decider. I realize the idea of the replacement seems scary, but I had a pretty smooth recovery and feel like a new a man.
 
GrtDane- I am no expert on all of your data, but my story is a lot like yours. I too had radiation for Hodgkins in the early 80s and later developed AS. My doc first noticed the murmur years ago (maybe 10 years) and at first echo results were normal and I was totally asymptomatic for a number of years. About a year and a half ago I started having what I would call mild symptoms - just felt out of shape. At that time, my echo data was pretty good with a healthy 65-66% ejection fraction. But the symptoms got worse and even with a good ejection fraction I started getting really short of breath, etc and had a pressure gradient around 100. At that point, replacement was the only option. I had it replaced with a tissue value in March of this year. My symptoms were gone immediately after surgery. My impression is that while certain echo data can warrant surgery, symptoms are the ultimate decider. I realize the idea of the replacement seems scary, but I had a pretty smooth recovery and feel like a new a man.

Hi FC, thanks so much for sharing that. Today I read the full package they give you before surgery that basically tells you everything to expect before, during and after and I got totally freaked out. I then snapped at my wife because I was scared about what I had just read. Anyway, we made up :)

Your post made me remember, it's been a long time since I felt 'right', and soon I will be feeling that again - and I can't wait!
 
Hi I also had Hodgkins disease in 1977 treated with Radiation was followed with echos for years, and both my aortic and mitral valves were getting worse. last Jan my aortic valve was .8cm, I started having more symtoms, irregular heart rate and sob. I had both valves replaced in June 2011. Its been a year and I feel so much better! I didnt realize how bad I felt prior to surgery!
Good Luck and if you have any question plz IM me!!!!
RZG
 
Hi RZG, thanks so much for the reply. Couple of questions, did you also have chemo? Also, what type of valve did you choose and if you don't mind, how old are you? I also had both ABVD and MOPP, and the cardiologist, while I was on the table getting an angiogram, said "your leaking from your aortic root and it appears the chemotherapy has distorted it. It will need to be replaced" or words to that effect.

He also said when he discovered this something like "ohhh, okay, now I understand why you are having symptoms." Unfortunately I didn't get a chance to talk to him after the procedure to really explain some of these things.
 
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