A year later and still not quite right

[Linda1159]

Hello I am new to this board and I am so glad I found it!

I was told that I had been born with a bicuspid valve and it was not diagnosed until I was 45 years old. It's a good thing he found it when he did or he said I would't have made it to 46.
I had surgery just over a year ago and during the first few months I felt great, now I feel short of breath just doing housework or grocery shopping. My regular doctor says that I will always get a little winded if I exert myself.
I can no longer see my cardiologist because while I was on my leave from work my employer dropped all health benefits for everyone and I now have no insurance.
Thank God my regular dr will continue to see me. He is the one that investigated the heart murmur anyway. Now he has me on an iron pill for anemia
I still take coumadin, lasix and digoxin. Does anyone else still take those drugs a year later? Does anyone else still have a heart murmur and get winded? My doctor tells me my heart will always be a little weak from now on.

[Karlynn]

If there was permanent damage done to your heart then it's possible you may always be a little winded. If you were Dx'd and had surgery pretty quickly, then it means that your valve was at a very serious stage and, depending on how long it was in that shape, it's possible you had permanent damage.

You can find out the shape your heart is in my asking your doctor to give you your echo measurements and explanation. If the heart sizes are still in normal limits, then there may be another cause for your SOB (shortness of breath).

How physically fit were you prior to surgery and have you been doing any exercising since surgery. If you heart is w/in normal size ranges, then it may be that instituting an exercise program (with your doctors permission) may help you past the SOB.

What a great doctor to agree to continue to see you w/out insurance!

Oh, and WELCOME!! :)

[Georgia]

Welcome!

I had surgery nearly 3 years ago and am on a lot of meds, and suspect I always will be. I plan to try to get my cardio to reduce the metropolol next time I see her.

If you're not regularly engaging in aerobic activity, I suggest you begin at once. I feel entirely better when doing cardiac rehab Phase III. If you don't have such in your town, you need to walk or whatever at least 3 times per week. Your heart needs it. Due to a couple of issues I've had two extended periods during which I couldn't exercise; and found I had much less energy. This is your best bet for getting your heart back in shape.

[JimL]

Welcome Linda, and Happy Birthday a few days early (I'm guessing on that). I had my surgery at about the same age, but I can't remember any shortness of breath since surgery, although I had plenty before.

I stopped lasix a few weeks after surgery. Digoxin I stopped over a year after surgery. The cardiologist told me I could just stop taking it, which I found was wrong. I had to wean myself off of it after that long. When I just stopped taking digoxin, I nearly blacked out. I was driving at the time, but here on the north side of DEtroit, hardly anyone noticed. Anyway, be careful getting off the digoxin.

[Ross]

Linda I can sympathize with the no insurance thing, but it's pretty much imperative that you have a Cardiologist following you from here on out. Call a few and see who would be willing to work with you and accept payments? You sure as heck don't want to be caught in an emergency situation without someone that knows you.

[Mary]

Linda,
What did your last echocardiogram show? I'm assuming you had one after replacement. If you don't have a copy of your results, you can always request them.
I'm glad you found us!

[Linda1159]

Thanks so much to everyone for your thoughts and suggestions.
I never went through an exercise program after surgery( just the basic walk a little each day right after surgery). My regular doctor has now suggested I get a stationary bike. He says that the bike or brisk walking should help.
I am going to try to get medicaid so that I may find a cardiologist that will see me. I have not had an xray, echocardiogram or any test other than blood tests since before surgery (unless they did one while I was still in surgery). I think part of my slow recovery is the fear of not really knowing how well my heart is. I'm afraid of doing certain things (lifting, pulling, ect) for fear I will injure my heart. I really like my family doctor and, he is the one who found the problem anyway, I still worry he may miss something else.
I am going to do more exerciseing than I have and see what that does for me.
Well anyway thanks again for listening!
Linda

[Mary]

Linda,
If you haven't had an echo since your surgery, it would be hard to know how well your valve is actually working. My postop echo showed a complication that I never dreamed of--even though my new valve is working very well.

I know you don't have insurance, but I would try to find a resource (perhaps a teaching hospital?) to schedule an echo.

[BDMc]

Linda, The teaching hospital is a great idea! Don't get discouraged if you get an initial "NO". Be creative...find out who the faculty are, and try to contact them directly. Be sure to ask for a copy of your results!

[rbl1999]

Hi, how about the American Heart Association, you could send them an Email on their web site and see if they could help you with this, maybe help you getting an echo done.. Good Luck Rose

[Barbara Stewart]

I had my mitral valve replaced in May with a porcine valve. The echo I had after said it looked OK. Well, now the area around the valve is leaking and I now have pulmonary hypertension.:mad:
This site is new to me and I'm just learning to navigate around, but so many of you have had complications with surgery and still survived. I'm terrified.
Anyway, thanks for being here.
Barbara

[Karlynn]

Welcome Barbara!

You may want to start your own thread in the Heart Talk forum here. That way, more people will be sure to see your post. We have a few people here who have a lot of experience with PH.