Graduating from the waiting room - symptoms?

[afraidofsurgery]

I could use some help from anyone who has "graduated" from the waiting room. I've been watching and waiting a mod/sev regurgitant bicuspid valve for 12 years, and my ventricle at diastole has increased from 5.7 to 6.2 cm overall, w/ the 6.2 reading consistent the last 2 visits (over 1 year).

I seem to be having symptoms causing my cardio to recommend surgery by the end of the year, since all studies indicate it's best to do valve replacement soon as symptoms appear. My symptoms are: I used to be able to jog 20-30 minutes but after I had my daughter in 1999 and over the last few years can't go more than a few minutes at best, I just get pooped. I do walk briskly though 2-3 miles. I get short of breath (which means to me breathing way harder than it seems I should be and w/ a delay of 10 seconds or so after I'm done climbing the stairs). After a good workout, my heart rate doesn't go back to baseline for a day or so (stays at 70-ish vs going back to 60-ish). Also think I have some angina (pinching or dull aching pain) over my 3rd rib on the left side. These symptoms are intermittent, but seem here to stay. Fatigue is a constant battle though.

Problem is, I don't know how to rate these symptoms, my cardio is concerned that this represents a change, since I've had absolutely nothing to report until recently, I've been asymptomatic.

Can anyone tell me about what happened when they graduated from the waiting room? I have nothing to compare my current experience with, and since this is the deciding factor for impending surgery, I could use some feedback.

Thanks so much in advance,
Patty

 

[tommy]

To me, the exercise issues are important and helpful, but the cardio's diagnostic tools are the clincher in setting a surgery date. 2nd opinions are useful.

You mention having the surgery as soon as symptoms are present. That may be premature. My understanding (and experience - bicuspid) is to do the surgery before the heart deforms with irreversible damage. I was in the waiting room 16 years. 5 years post op I have energy that i didn't even try to tap for 20 years.

If surgery is truly pending, it sounds like you have time to get another opinion and do some research, even choose the surgeon.

 

[brd]

Patty, I am in the waiting room too and have almost an identical situation to yours though the cause of the AS is different. Mine is due to radiation. Up until about a year ago I jogged daily 3-5 miles and am now down to fast and uphill walking 3-5 a day. Shortness of breath is increasing and though I still don't have to stop at the top of the stairs I'm almost at that point. My cardio was concerned about the surface area of my valve which is between .7 and .8 and was considering sending me to the surgeon and decided to do a stress EKG first (under close monitoring - eg a cardio was with me the whole time). That came out fine so I didn't see the surgeon 8 mos ago. Finally I saw him two weeks ago because I just needed to put a face on things and know who I was going to go to and to hear what he had to say. He told me he expected I could wait another year, OR SO. I have an ECHO in three weeks. So far I've had no chest pain.

For what it's worth.......I felt better having seen the surgeon and gotten his opinion. Generally speaking cardios seem more conservation but in this case they concurred.

I hope this is helpful. Stay in touch.

Barbara

 

[Nancy]

What tests have you had? Usually symptoms plus tests which indicate it=surgery.

 

[rbl1999]

Patty, I just left the waiting room and let me give you my indicator. When I told the cardiologist that I could not climb one flight of stairs without becomong very short of breath, his whole expression changed...Two days later I had aorta replacement surgery. My echo had changed somewhat but the big indicator was symptoms...I am now 10 days post op and doing pretty good... All the best Rose

 

[bvdr]

Hi, I remember racing my then less than 2 y/0 grandson for short spurts....you know the kind of race, "on your mark, get set go, I'm going to get you sort of thing". Our yard had water on on basically 3 sides and not only did my heart pound and race but I suddenly felt it was no longer safe to do this with him unless someone else was with us. We didn't have a beach but rather a bulkhead with deep water all around. This was during the period I was coming to terms with the fact something (yet unknown) was very wrong. I was soon diagnosed with valve problems and had MVR about 8 months later. By the time I had surgery it was hard to walk across a Walmart parking lot or through an airport without being very very winded and uncomfortable.

I have the feeling your gut is telling you it is about time? Symptoms creep up very slowly and by the time you are paying attention to them they are pretty well established. We often say around here that the worse your valve gets the faster it gets worse. Sometimes the onset of identifiable symptoms, such as you listed, herald the escalation process.

 

[tobagotwo]

One of the most difficult parts of determining symptoms is getting past the second-guessing. We feel something different, and put it down to age, to being out of shape, a muscle pull, you name it. We argue with ourselves whether we really feel something, or if it is our imagination. We want to come forward with symptoms we think we may feel, but are afraid to be told it is all in our imaginations.

You have some defined symptoms and are in moderate to severe regurgitation, so it does sound like you are on the warning track for surgery. A bigger tipoff is the enlargement of your ventricle, which indicates that your heart is working harder. No imagination there.

Plus, I imagine there is apart of you that is beginning to tell you that you need to do something, as you are beginning to be "gray" tired, completely washed out by the end of the day, and that is a bad feeling.

Afraid of surgery? Well, there were a few others that were. Let me see: oh, yes - the whole membership list, minus a very few.

You will find after the surgery that you have more energy than you have had in years. You will wonder how you dragged yourself through these last months feeling so used up.

Best wishes,

 

[afraidofsurgery]

Tests

Tests

What tests have you had? Usually symptoms plus tests which indicate it=surgery.

I have had primarily a series of echocardiograms watching for either symptoms or a further dilation of the ventricle. At my first visit, I also had a stress MUGA (gamma camera pics of radiolabelled blood while I pedaled a bike) that indicated the heart muscle was squeezing OK during exercise.

I have a second opinion w/ another cardiologist scheduled for this week and I'm all set w/ a choice of a surgeon but I can go see him as well if I want/need to.

 

[CCRN]

See the man with the knife

See the man with the knife

I have had primarily a series of echocardiograms watching for either symptoms or a further dilation of the ventricle. At my first visit, I also had a stress MUGA (gamma camera pics of radiolabelled blood while I pedaled a bike) that indicated the heart muscle was squeezing OK during exercise.

I have a second opinion w/ another cardiologist scheduled for this week and I'm all set w/ a choice of a surgeon but I can go see him as well if I want/need to.

FIRST! You need to see a surgeon, preferably one knowledgeable about your congenital defect. I mean, why would you want to get another consult from a physician who cannot begin to fix your problem? That's the message your cardiologist just gave you when he told you it was time to see a surgeon anyway. I would also ask the cardiologist if he might schedule a MRI or CT with contrast of your ascending aorta before you see the surgeon. Might as well be prepared to get as much fixed as necessary. You're having changes in your heart that might well decrease your chances of a smooth recovery if you wait too long for the surgery. If it's medically necessary now, go for it. I will keep you in my "knee mail" to God to give you peace during this high anxiety time. Right now begins the worst part of the process. On the day of the surgery it will feel like smooth sailing. Best wishes.

 

[afraidofsurgery]

Thanks

Thanks

FIRST! You need to see a surgeon, preferably one knowledgeable about your congenital defect. I mean, why would you want to get another consult from a physician who cannot begin to fix your problem? That's the message your cardiologist just gave you when he told you it was time to see a surgeon anyway. I would also ask the cardiologist if he might schedule a MRI or CT with contrast of your ascending aorta before you see the surgeon. Might as well be prepared to get as much fixed as necessary. You're having changes in your heart that might well decrease your chances of a smooth recovery if you wait too long for the surgery. If it's medically necessary now, go for it. I will keep you in my "knee mail" to God to give you peace during this high anxiety time. Right now begins the worst part of the process. On the day of the surgery it will feel like smooth sailing. Best wishes.

Thanks for your support. I interacted with the 2nd opinion cardio quite a bit as she was my Dad's cardio for years before he passed away and I respect her opinion. I think I just need another pat on the back and "go for it" message from her, she really is a perceptive and knowledgeable doctor and helped my Dad through by pass surgery, lung surgery, COPD, and manage depression for over 15 years - years I don't think he would have had w/o her.
%

I will talk to the surgeon, he had sent me to the cardio 12 years ago saying "it wasn't time yet". He specializes in valve replacement and collaborates with my cardio, and respects my cardio's judgement. So I think this is a better situation than some members of this website have, in that both docs are familiar w/ my problem, see a lot of patients with valve problems, and are in the same hospital to work together. But really it's me who needs to be ready, so whoever I need to talk to I'll do it.
Patty
ps - and thanks especially for the "knee mail", I need to do some of that myself

 

[CCRN]

Being ready

Being ready

Thanks for your support. I interacted with the 2nd opinion cardio quite a bit as she was my Dad's cardio for years before he passed away and I respect her opinion. I think I just need another pat on the back and "go for it" message from her, she really is a perceptive and knowledgeable doctor and helped my Dad through by pass surgery, lung surgery, COPD, and manage depression for over 15 years - years I don't think he would have had w/o her.
%

I will talk to the surgeon, he had sent me to the cardio 12 years ago saying "it wasn't time yet". He specializes in valve replacement and collaborates with my cardio, and respects my cardio's judgement. So I think this is a better situation than some members of this website have, in that both docs are familiar w/ my problem, see a lot of patients with valve problems, and are in the same hospital to work together. But really it's me who needs to be ready, so whoever I need to talk to I'll do it.
Patty
ps - and thanks especially for the "knee mail", I need to do some of that myself

Thanks for the message back. You seem to have a good situation with your follow-up care. When you're ready it will be way easier than you think right now. Take care, RBG

 

[afraidofsurgery]

Off to the pre-surgery forum

Off to the pre-surgery forum

Just wanted to let you all know my 2nd opinion (another cardio but she's amazing and is extremely well-regarded) agreed wholeheartedly with my first. Gee, I was expecting some ambiguity, I'm so disappointed. Actually relieved, now I can get on with things - yikes! Have the date set, will now meet w/ surgeon.

Only weird thing is the 2nd cardio had dramatically different opinions about coumadin, but that seems to be in line w/ discussions I've seen here, just puts a slight wavering into my valve choice (I had pretty much settled on a St. Jude valve, and am still using this as choice #1, but am going to review the tissue valve data more carefully).

I've learned a LOT about criteria for timing of aortic valve surgery over the last month, including the fact that this topic is a bit controversial amongst physicians, judging from the literature. Also learned that I tend to minimize symptoms but guess what - they're really there! I'm not imagining phantom pain and fatigue, that's a relief too. Am now looking forward to fixing my leak.

My surgery is scheduled for Sept 6th (angiogram on the 6th, surgery on the 7th). Glad to have found this site, it's made a world of difference.

Patty