breathlessnes update

[Elsiedog]

I went to doctor yesterday, he did chest x-ray which seemed to be OK, slight dilation of the heart but he said nothing too severe. He wants to do new echo-cardiagram which will be over next week or so and then I see him again 12th Nov. He has said it is very clear from listening to my chest the valve is leaking again and I should think about the possibility of more surgery. For me at this stage I really am not even considering that as an option, for one I dont wnat to go through all that again and my job is so busy at the moment I cant really spare the time. Does anyone know if there are drugs you can take instead of surgery that will stop the breathing difficulties? I would have thought as long as the heart does not get too enlarged it would be safe to leave things alone?

 

[Nancy]

Hi Richard-

I'm sorry to hear that you're having this situation again. Judging from what Joe has been through, there are meds that can help for a while, but the bottom line is that if you need to have surgery, then you need to have surgery. Only your cardiologist can assess whether durgs can help for a while or whether you will need surgery soon.

It's a pretty scientific determination, but also includes symptom input.

Got to go have a heart to heart talk with your card.

I wish you well, and hope that you can put it off a little bit.

 

[Johnny Stephens]

Hello Richard

Nancy nailed it as usual. While there may be some benefit from some drug to help alleviate the severity of the symptoms, only your cardiologist can help you determine this. In the end, if the root cause is a functional problem with the valve, his (or her) answer may be that more surgery is indicated in order to minimize the risk of even more severe complications.

Don't hesitate to seek out a 2nd or even 3rd opinion to satisfy yourself that you're getting the straight scoop.

Hope it works out for you....let us know how it goes.

Johnny

 

[LUVMyBirman]

Hi Richard,

The others gave you some sound advice. Sorry to hear you are having difficulties. Can you tell us a bit more about your situation.
When was your original valve replaced?

PS> I just looked back at your posts. You had the Ross 3/2001? Are they recommending a prosthetic valve replacement?

 

[Elsiedog]

not got that far yet, I am having few more tests and then I guess they will say if I need more surgery or not, after going for the Ross originally not too sure which I would go for, however at this stage I am still hoping wont come to that!

Thanks as ever for replies

 

[Ross]

At your age, I'd say go mechanical, but that's me. My Ross lasted 7 years and failed, so I had the mechanical put in this year. Whatever choice you make will be a good one. All in all though, I think surgery is going to happen even if you don't like the idea. I know I didn't and still went through with it.

 

[persianlady]

from chris of ca

from chris of ca

DEAR RICHARD ,IM SORRY YOUR HAVING TO GO THROUGH SUCH A ORDEAL I HAD A AORTIC V. TWO YRS AGO AND ITS SCARES THE HECK OUT OF ME TO THINK I EVEN HALF TO GO INTO THE HOSPITAL TAKE CARE CHRIS LET US ALL KNOW WHAT IS GOING ON

 

[Junebug]

Hi, I'm new to this website and am thrilled to see how you all help each other...like a family!

Like Richard, I'm wondering if it's time to have my (original pulmonary) valve replaced. My Tetrology of Fallot was repaired about 27 years ago and have done reasonably well until now. I have one cardiologist that was certain a year ago that I needed a valve replacement because it's leaking (& so is the tricusbid valve). This was discovered during an angio. Another cardiologist looking at the same angio said I don't need to have it replaced just yet. Fastforward a year and now I'm having symptoms:shortness of breath, significant difficulty in climbing stairs, occasional numbness "feeling" in my forearems (like they are about to fall asleep but don't) and "thickness" in my neck. The first cardiologist is certain it's time, I'm pretty sure it's time, but the other cardiologist (via long distance) can't believe enough could have changed in a year to warrant a valve replacement. He said "other things" could be causing those symptoms. I had my thyroid checked and I'm taking synthroid to keep it in check...it's been "in check" for several months now so I doubt that that would be it. Also, when they did the echo this year, it showed the leakage to have worsen. But then again, echos aren't the "gold" standard. Does anyone have any suggestions or advice? I am so frustrated !!! Who am I suppose to believe? Both are from teaching hospitals and treat Adult Congenital heart patients.
Thanks for letting me vent!

 

[Nancy]

Hi Junebug-

Welcome to the site. Sounds like you have a few things going on in your life, to say the least.

The decision making process leading up to heart valve replacement surgery is such a trying time. My husband has been through it three times. The first one (aortic valve) was a no brainer. He had complete stenosis and had a heart attack. He went for many years before needing his mitral valve replacement, and then subsequently had a mitral repair for a small leak which developed. He had rheumatic fever which caused all this grief.

From our experiences, the final decision is an artful combination of test results and patient symptoms. With each surgery, the decision became more and more difficult to achieve. Additional surgeries are more complicated because of scar tissue and adhesions, so the cardiologists might wait longer before subjecting the patient to surgery, hoping to put it off with medications as long as possible.

It really does put the patient's mettle to the test. You yourself will know when you absolutely can't stand it anymore and at that point, you'll probably have to have a good long talk with the decision maker and see if you can push for surgery.

I can relate to what you're going through. Stay tough and hold your ground.

Wishing you good luck.

 

[Elsiedog]

Hi Junebug

You are right the site is great and evryone is really helpful and can give advise like only people who have bene through the same thing.

I was in a similair position to you last October around 6 months from my first surgery. My cardiologist wanted to re-operate as the valve was leaking again and they actually had me in the hospital bed , chest shaved etc the night before and the surgeon decided he thought it was too soon and we should leave things and see how they go. Knowing who to trust is really hard and I think the onlt thing you can do as Nancy said is be guided by your symptoms and listen to all the various doctors and then make your own decision, the more I hear from my doctors and speakign to people it is clear it seems not to be an exact science and two people can have very different views of the same echo!

I had a repeat echo done this week and I see my doctor again 12th Nov so will see what he says this time

Hope everything works out for you

 

[Junebug]

Thanks Nancy & Richard for your help & advice.

My plan of attack is to call Mayo clinic tomorrow & set up a consult with them since they deal with so many tetrology of Fallot repairs and see what they say, otherwise I'll be going through this every year during my annual checkup....knowing one cardiologist is for the surgery now & the other thinks I can wait a bit longer. I just don't feel "right" and can't help but think it's heart related.

I'll keep you all posted.

Thanks,
Judy

 

[McCln]

Junebug

Junebug

Just got on today and saw your little post on aortic valve leak. I have one question. Is it congential, like were you born with heart problem. I was born with mine, heart murmur, which a leaky valve. Mine was the aortic valve. Had repair at age eight, replaced just last year. I am doing just fine. And I did have problems breathing as the leak got worse. The disease eventually closed off the aortic valve, causing congestive heart failure. But I had found a good cardiac doctor from that and I was waiting for surgery when the chf occurred. It just makes things harder to do. And walking was harder, just a block and had to stop to catch my breathe. Since the surgery, I have gotten better. Am walking and joined a wellness program at work to get more of my health back. I have a thick neck also, but from weight gain. I am trying to lose all that i gained for the last few years. You keep hanging in there and find a good doctor to work with you. You be fine soon enough. Just be happy.

caroline
09-13-01
Aortic valve replacement
St.Judes valve

 

[Junebug]

Hi Caroline,
Thanks for your input! Yes, my valve stuff is related to my congenital defect, tetrology of fallot, which was repaired in '75. I've been pretty asymptomatic since (also had 2 kids).

I was just wondering if your weight gain was due to slowing down as the valve started leaking and ultimately bad enough to warrant replacement. I've been steadily gaining weight the last 5 years (prior to that I stayed at a certain weight even if I pigged out once in a while). My neck thing might be, in part, related to the weight gain but it feels swollen, mostly on the left side. I don't know what brings on this symptom, but sometimes it really bothers me & I take Ibuprofen for that. I'm on synthroid for the thyroid, which hasn't changed much since this first started & I began taking synthroid (it started around August). I had some blood work done this week and a chest x-ray. I'm waiting for my medical info to get to Mayo clinic so I can set up an appointment with a cardiologist there (more waiting ) Right now it's the Pulmonary valve that needs to be replaced...eventually the aortic valve will need to be replaced as well.

I'm glad that you're doing well...it gives me hope & inspiration to hear (read) those stories. Did you notice a difference right away?

 

[Nancy]

Could any of the weight gain be from fluid retention? Sometimes when the heart isn't 100 percent, you can get fluid weight and it can accumulate in the legs, feet, stomach, lungs, liver and neck. My husband has had all of those situations, sometimes severe. He has to stay on Lasix, Aldactone and also as close to no salt as is possible.

He also weighs himself every day and a gain of 3 pounds can mean a call to the cardiologist for an adjustment in the diuretics.

Lately, he's been pretty good as far as fluid. But it can start up again if he has even a little sodium.

I have to watch every thing for him, no pizza, very little cheese, no cold cuts, no table salt and I don't use any salt in cooking. Once a week, I may include a little sodium just to keep everything in balance, but after that, it's right back to the regimen.

 

[Junebug]

I was wondering about the fluid retention too, but my ankles are not swollen. Could I still have fluid retention in other places, but not my ankles?? I guess I sort of feel like a sitting duck until I can get to Mayo to have EVERYTHING assessed. My internist is trying to "manage" my symptoms but I think is he's sort of deferring them for my cardiology visit, though ruling things out with blood work & chest x-ray (waiting for the results of both). When I saw the Adult Congenital Heart defect cardiologist a few weeks ago, he just atributed the symptoms to the need for surgery, which I thought I'd have soon and, at the time, was thinking I'd have it at that hospital. Because I'm thinking about Mayo as the place to have it (they treat a lot of Tetrology of Fallot patients there), it just adds to the stress of waiting....meanwhile I am more aware of my symptoms....making me more worried

Is there a "cure" for CHF or is it just managed? Also, what other things does your husband have to stay away from? Is caffeine ok (coke/diet coke)?

Thanks, again, for your help. It does calm my nerves a bit.

 

[Nancy]

Why not try going low sodium for a while and see if it helps. Yes, you can have fluid retention and not have it in your legs and feet. Joe has had that. But when his heart was acting up, it was very prominent in his neck. The veins were quite enlarged, he became hoarse and had swallowing problems. Since his last heart surgery, the neck problems have gone away, so that location is probably related mostly to your valve problems. But you really should have a cardiologist look at it. Maybe they can prescribe some diuretics for you.

Joe has to be careful of sodium. He drinks Coke and hi-test coffee and doesn't have a problem with caffeine. But everyone is different. He doesn't drink a lot of caffeine though.

The CHF seems to come and go. I don't think it's curable, only manageable. My guess is that once you have your valve fixed, you'll be feeling much better and maybe (I hope for you) the CHF will be negligible.

 

[Junebug]

Nancy,
Thanks for the advice, I'll try the reduced/low sodium and let you know if I notice a difference. The results from my recent chest x-ray showed no change since the last one (I think it was over a year ago) so I guess my heart isn't enlarging (good news, I hope!!)

I'm going to get checked for insulin resistance in a few days, just in case that's part of the picture (while I'm waiting for Mayo to call).

Thanks, again, for being there! I really appreciate your willingness to share & advise.

Judy

 

[Nancy]

Good luck Judy-

Let me know how things go.