Saw the Cardio Yesterday

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epstns

Premium User
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Dec 26, 2002
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Chicago area
Well, I finally got to meet with my cardiologist yesterday. First time since his associate *dropped the bomb* on me the day after Christmas (some present, eh?).

He went over the echo findings with me in some detail. He is managing my case as moderate aortic stenosis. (peak-to-peak gradient of 44 mm Hg, mean gradient of 24 mm Hg, and AVA of 1.0 cm).

At this point, he is advising a *watchful waiting* approach, with a follow-up office visit in 3 months and another echo in 6 months. He recommends no changes to activity levels (well, he did say my 7 day per week work outs should be reduced to 5 days, with walking on the other 2. . . ). He says that at the present time the risks of surgery and the other changes required after surgery are worse than watching and waiting. His comments are something like ". . . there is little to no risk until symptoms occur, then we need to fix it soon. You'll know when, as symptoms won't be subtle. In the meantime, we'll do follow-up echo's every so often to be sure nothing changes for the worst without giving us a sign."

So, I guess that means that I have time to get used to what will be. Cardio (of course) said he cannot really predict the timing, just that his guess would be years, not months. Maybe we'll know more after the next follow-up echo. I will be regularly watching the boards here to learn all that I can to be prepared when the time comes.

My thanks to all and my prayers are with you all.
 
Hi Steve

Tyce's cardio pretty much followed the same approach....wait and see...that's good. Tyce went for about 3 years before he had any symptoms and at that point we took action. His only symptom to let us know he was in afib was difficulty sleeping. He never noticed his heart was out of rhythm. so be aware that it can be something like that that will be your warning. It may also be your numbers on your echos that determine the degree of stenosis. Our advice to you would be not to worry now....you may be many years down the road from any procedure, and that is good. It certainly seems as though you have no restrictions, so go out and don't worry about it.

Hope to hear from you again!

Evelyn
 
That's good news! You may or may not have years before surgery, but at least he's in no hurry to open you up and that's a good thing. ;)
 
See there, Steve!

See there, Steve!

I'm not saying anything negative about your cardio, but don't you just hate it when they do that double talk?! Like.....

?You?ll know when, as symptoms won?t be subtle.? Then in the next breath say something like... ?we?ll do follow-up echo?s to be sure nothing changes for the worse without giving us a sign?

Honestly, I have to say there were ?signs? before I visited the cardio... I just didn?t realize until it was too late how extreme they were. I lay most of the blame on my PCP, who was a quack! And myself for so blindly putting my life in her hands.
 
The "Signs"

The "Signs"

When it comes to signs and symptoms, don't let anything go unnoticed. I just kept saying that I was out of shape, or getting older, and thought my symptoms were a normal part of life. I should have listened to my body.

I don't suggest being paranoid over every little ache (because your mind can get the better of you) but you know your body better than anyone, and if something doesn't feel right, then you shouldn't take the chance.

Keep informed, listen to your body, and don't let your worries get the better of you. Thats all I can suggest.

Keep on tickin'.

:)
 
My experience was similar to Bunny's; I also wrote my symptoms off to being out of shape, jet lag, etc.
I continued to charge ahead in my gym workouts, thinking that if I only worked harder, I would eventually feel better. Of course the opposite happened and I ended up with some left ventricular hypertrophy as my heart muscle enlarged to compensate for the bad valve.
My cardiologist told me that he recommends surgery within six months of the development of symptoms in order to avoid any permanent damage to the heart muscle. I really pushed it to the edge before I went to the doctor and was very lucky I didn't do any irreversable damage.
Listen to your body and stay on top of any suspected symptoms; surgery is no fun, but when it's time, its time.

Good luck,
Mark
 
Hey Steve,

Good to hear you don't need surgery right now. Just be very alert as to what is happening. You can never be too safe. I'm not saying every little thing should throw up a red flag but just be aware. Who is your cardio by the way?
 
Well, everyone, it appears that there is concensus on one thing -- that being to be very aware of changes, even subtle ones. I certainly am not going to breeze off into the horizon, oblivious to all that has been found! Over the past year or so, I have begun keeping a diary, and will chronicle my physical state as well as my activity levels there. Then I can notice in short order if my work outs drop in intensity for more than a couple of days, etc. I can also note any other suspected symptoms to review on next cardio visit.

The present plan appears to be to have a follow-up office consult in 3 months, to "see how I'm feeling." At that time I will also bring up the question of my blood pressure -- may be a bit high, so what to do? (At last office visit my anxiety level was up through the roof, and so was BP!) Then 6 months from now, we plan another echo. I believe the cardio is intending to try to get some idea of rate of progression from that.

Dave5 - My cardio is Dr. Timothy O'Connor, of Talcott Internal Medicine. They are in the professional building of Resurrection Hospital, which is about 2 blocks from my home on the far northwest side in Chicago. Do you have any info about the level of sophistication available in cardiac surgery at Res? I have heard that Lutheran in Park Ridge is among the best, but Res is really close to home.

So, yes, I am trying to get back to life as it currently is. Not easy, as it isn't the same anymore, but I am thankful I have time to learn and become an informed consumer. (Aside from the fact that the doc's have time to get more experience before they get to me. . . )

Thanks to everyone (again and again).
 
Steve - I just thought I would add my two cents. In my case I had no symptoms or they were so insignificant I was unable to determine. Also, there can be "denial" when you see them. For instance, I could tell I was more tired when I was running playing softball, but it just didn't seem I should have surgery just for that reason. So, just what you tell your doctor will determine when you get surgery. My preference was to wait until some scientific evidence told me I needed surgery. That was a bad decision, since the surgeon indicated that I waited too long. Anyway, keep in touch and good luck.
 
What Signs To Look For?

What Signs To Look For?

Since I was told I will need surgery in the next few months, everything seems to be a sign to me....what exactly are the physical signs to watch for? Currently, I'm constantly out of breath, sweat when sitting still, gigantic waves of thirst followed by another huge wave of nausea occurs occassionally...I've told this to my cardio, but he hasn't paid too much attention to these symptoms. I'm not sure what to do at this point. I'm in the severe stages of aortic stenosis right now...
 
Hi Steve,

That's very good news! Hang in there and keep doing what your doing. Your going to be very well prepared when the time comes.

Did they note any enlargement of chambers? I was completely asymptomatic with top grade regurgitation. My atrium was starting to enlarge so we decided to go ahead. Had a month to digest the idea. My little girl was 2 at the time. It was a very tough point in my life. Here I am almost 4 years later ticking on.

Keep the positive thoughts flowing. We will have to get together again soon! Noticed you have not decided upon on a location for your surgery. Honestly.... would be torn myself. There are a lot of options here in the city. I find it difficult to weigh them all out. My cardioligist, Lorraines also is with www.midwestheart.com if you are looking for another opinion. Have not inquired about local surgeons.
All the best.
 
Steve, one of the signs that was a big one to me was when I couldn't lie flat down and sleep. Iwould wake up because I couldn't breath, and I would cough up blood a lot of blood pink sputum. I mean so much I would throw it up. I knew something was worng with me, it was the jerk at the ER who misdxed me with a cold. I complained, obviously, but I also knew that I had to go back in again because my symptoms were getting worst. Fast. I mean in the matter of 12 hours, i had deteriorated so much that I swallowed my pride and went in again. I got admitted and within 12 hours of THAT...I had to be intubated. If you get any of those symptoms, if you are retaining water in your ankles, If you get dizzy and lightheaded, you won't be able to walk a couple of steps let alone work out. Just be careful, alright? I'm glad you know about your heart disease, because I didn't until it was almost too late. 24 hours and I would have had a massive heart attack. I think that's what your cardio meant when he said that the signs won't be subtle. Take care of yourself, alright? We want to keep you in our family!
 
Joy - Thanks so for sharing some pretty scary experiences. I am definitely keeping a close watch on myself, and keep a journal of even the smallest things -- especially until I have my first "short leash" visit with the cardio in early April. I've been a good boy, cut back the work-outs to maintain cardio-vascular conditioning, but not to build anything new. It is a bit of a let-down, but I know the consequences of misbehaving may be serious!

At the present I still have no clear symptoms. I do have some "complaints" which seem to me that they may be early signs of symptoms. I will see what the cardio says, and will either pursue short term action or will have another visit with cardio, probably within 3 months of the April appt.

Don't know which I would prefer -- now or later. As I am trying to convince myself, all I can do is ride it out, now that I am on the train.
 
Steve125 posts..

Steve125 posts..

Time to post a picture.:D Want to see a pic of that hunky 55 year old:D Take care and try not to worry..You will be when the time comes. Bonnie
 
Steve,
I had virtually no symptoms at the time of my surgery, yet my heart was in terrible shape, with an ejection fraction of 20 percent (normal is 55 to 70 percent). Like you, I had done a lot of exercise, which I think enables the body to take a lot more before symptoms occur. The concensus among the top heart facilities like the Cleveland Heart Foundation and Mayo is to pay close attention to the numbers even if a patient appears to be without symptoms. When your aortic valve area gets to about .7 cm squared you are in the severe range for stenosis. If your ejection fraction drops below normal and/or your left ventricle enlarges too much, waiting is probably not a good idea, even if you seem to have no symptoms. Continued waiting may result in permanent injury to your heart, or worse. "Watchful waiting" is probably the best thing right now, but let me echo the chorus of others here, pay CLOSE attention to what's going on with your body.

Not to try to scare you, but be very cautious about strenous exercise now. One of the risks with aortic stenosis is sudden cardiac death. If your cardiologist is saying "wait for symptoms" I think a second opinion is in order. In the mean time, walking and non-isometric and low weight exercise will help keep you healthy. This is not a time to be trying to add muscle mass; it is a time to make sure your weight is right where it should be and to get your BP on target.

Wishing you all the best,
--John
 
AMEN John,

You said it so well. In my case, I was so disbelieving of the seriousness of this condition, it might have killed me had it not been for a "good ol' boy cardiologist" laying that scare right on the line.

I remember joking to him that since I felt so go and was walking 3 miles a day I might run a 5k or some such. He looked me in the eye and said "I would not RUN anywhere with that valve".

I took him at his word and scheduled the surgery.

Bill
 
hi steve!
joey was exhibiting symptoms which suddenly came upon him and got progressively worse.
he was very fit, running and biking almost every day.
it got to the point where he was out of breat walking up the stairs to our bedroom! at that point the cardio had him cut back on his workouts too and do "maintenance" or minimal workouts (nothing too strenuous). i think he tried to do as much as he could, but soon even that became too difficult.
at that point we had already met with the surgeon and had a date set for a month later.
right after the surgery, dr. stelzer told me that he could not believe joey had not keeled over on the street and that his aperture was practically closed from the stenosis.
i think it's a good thing that you are staying on top of this. please let us know what the doctor says when you see him/her.
in the meantime, be well and try to take it easier.
all the best, sylvia
 
So much to think about

So much to think about

Sorry for the second reply, folks, but when I last read the replies, I was pressed for time and didn't read fully.

Gina - My info comes from one ordinary echo (not TEE), and that includes Concentric LV hypertrophy with normal contractility; Mild Bi-Atrial enlargement; Moderate to severe aortic stenosis with calculated mean gradient of 44mm Hg, calculated valve area of 1.0 square cm; mild mitral insufficiency and mild tricuspid insufficiency. No noted issues with pulmonary. Normal aortic root, etc. My cardio hasn't said anything yet about seeing a surgeon, but when I see him in April I will raise the question.

Joy - So far I've been lucky and have no shortness of breath when I'm laying down. None with exertion, either. Only occasionally I find that I can "talk myself out of breath" during a sprited conversation and have to stop to take a normal breath. Might mean something, might not. Will ask doc.

Bonnie - If you've had children grow through the teen years, you know why I haven't posted a picture -- young one has the digicam and I have to get it back, charged, and all that. Lots o' luck (chuckles again. . . ). I promise to get a photo up as soon as I can.

John - I am grudgingly taking your advice (and Al's and my cardio's and . . . ) by backing off to a maintenance work-out as of January. It really seems to dampen my spritis, but I rationalize it that this is my barometer. When I note any measurable changes, I will call the cardio and discuss their meaning. So far, he has instructed me to advise him if I have a change that lasts more than a day or two, and of any large changes in ability or weight. None of these, so far. The only thing that seems to swing in a major way is my state of mind. A good day is very good, but a bad day seems far worse. Of coures I am probably too aware of bad days right now, too.

So I will keep on keeping on, as they say, and just try to keep my head screwed on straight. For me, so far, that has been the hardest part.

Thanks for all your heartfelt (pun Intended!) support.

And, yes, Gina, we do have to plan that next Chicago get together. Any ideas?
 
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