New to you

[jade45]

Hi ,new to you, I was diagnoised with a heart murmur with my second child in 1980,since I have had 3 at which with my last
came the dreaded mitral stenosis,at 3 months I couldn't even lift a gallon of milk, was put on beta-blockers Toprol-XL 120mg, along with 20mg of laxis and 20 mgs of potassum,at this time they where more worried about me than my child,was put on complete bed rest at 5months,delivered early she weighed 4lbs 9oz,in 1995,I'am 45 yrs now,they wouldn't do the valve stretch thing the doctor said it would only be good for 3 to 5 yrs,rheumatic fever they said caused the trouble,this was in Sept 95 well on Father's Day we went fishing had to walk up this big hill did that a couple of times and had to go home,heart rate had slowed, skipping beats, went to ER and was hooked up to machines for 2 days,cardo said that there was more damage to my heart than he had thought,was put on Corgard 80 mg,20 laxis,potassum let me say one thing about tne beta-blockers they do help but side affects are hell, causes anxitiy& panic attacks,loss of memory if you read the small print that comes with it ,it states illreversable
memory loss,broncho spasms so if you have any kind of breathing problems it does make it worse,anyway,now I really can't do much at all I have worked all my life, can't get a job for my restrictions and the cardo saids he wants to wait for a more less
advasive procedure,does anyone out their have any info on what I can do,and on other web sites they say valve replacement survival rate is only good for 10 years anyone know about this.
I have 2 children at home 6 girl 9 boy a very tired overworked husband a 19yr teenager boy , not much help, my husband God love him does all he can with what he has left.
I really need some info if there is any
Thaks and God Bless

 

[Mara]

Hi Jade-
Welcome to our little site! You will find lots of helpful advice here.

I have no kids, but a great husband. Get the surgery to get your valve fixed! You will feel so much better than you have in years!

I was born with an aortic stenosis that was diagnosed at age 3-4. The cardiologists always told me to be careful, no strenous sports, and as I got older, becareful not to get pregnant. Too much stress on the valves and heart.

I had surgery on July 12, 2001! I feel great. I did not realize how tired I was before the surgery. I knew I ws feeling cruddy, tired and wron out. Now I feel great.

Get the valve fixed, but warn your family that they will all have to pull their weight, and more, while you recouperate. After about 8 weeks you'll be feeling great!

gOOD LUCK!
-Mara

 

[Mara]

Jade-
I think you are thinkong that valve replacements only last 10 years. Sometimes this is true, sometimes not. It all depends on the valve you get and the skill of your surgeon.
There are a lot of folks on here who have had mechanical valves for a long time, are feeling great and happy as can be!

They will weigh in and let you know that you can live a great, active life after valve replacement.

 

[Nancy]

Hi Jade45, welcome

Hi Jade45, welcome

This is a wonderful site, so full of information and very caring people who understand your problem.

If a valve replacement is in your future, and it sounds as if it might be, you're lucky. We live in wonderful medical times. They can fix valve problems, and the results are indeed impressive.

With mechanical valves, they can last a lifetime. My husband has one that's been in place for 25 years. He also has a second one that's 2 years old.

I hope you and your doctor opt for this procedure. It will give you back your energy, strength, and normal lifespan. You can enjoy those childhood years with your little ones. You'll be uncomfortable for a time, but it passes and you will be feeling the best you've felt in years.

Keep coming to this site to ask questions and to fill us all in on how things are going for you. We care.

 

[Bill Hall]

Hi Jade - Welcome to this site. I also had Rheumatic Fever, back a long time ago in 1963. My surgery was last year in Jan 2001. My mitral valve was repaired and Aortic replaced using a human valve (homograph). The valves may have to be replaced again (I think more than ten years), but there are several here who have done it more than once. Your medication seems to be a problem for you and you should talk to your doctor about that. The surgery is really not that bad, but if doctor recommends you go ahead, you should not hesitate. I don't know what you meant by waiting longer for a less invasive procedure. I would think the only reason for waiting is that you are not ready yet, your heart is not in bad shape. Good luck and keep in touch.

 

[sylviayasgur]

hi jade!
welcome to this site. as others have said, this is a great place for support and hand holding as well as a load of info (both first-hand and medical). if/when the time comes for you to have your surgery, we will all be here to help you through it.
meanwhile, take a look at a thread that was started back in july or aug. of 2001 by peter easton (in small or heart talk) entitled "making the choice". it gives a load of info about valve choices and options. we found it to be very helpful. also, as you visit, more folks will come forward and help by offering up info.
glad to have you among us. please keep coming back and ask any questions of us; we're happy to help.
be well,
sylvia

 

[McCln]

Jade

Jade

I was born with heart murmur and just had mechanical vavle replacement in September of last year. It is hard to do what is medically right. Medicines are not perfect. You may feel like a guiennie pig at times, but we have to do what we can to live longer. You will do fine here. What we don't know, we refer to other people. But we all have knowledge to share. You come in as much as you want. And ask as many questions as you want. You just hang in there though. We are here for you.


Caroline
091301
Aortic valve replacement
St.Jude's valve

 

[sylgeren]

Welcome Jade

Welcome Jade

I too am new here. But in the short time I have already found some new friends. I took Phen-Phen back in the late l980's. My doctor had been watching my heart closly. I had several echo's and last Oct.200l, he said even if I didn't have any problems, he said it's time to go to surgery. I was so scared and not knowing anything about this procedure, I went on the Internet and found a guy named Steve from (THE BUM TICKER) YOU MUST READ IT.
He walks you threw every step, every emotion. I think is last name is Goldberg (www.stevegoldberg.com) Try it. and let me know, what you think. Syl

 

[deborahj]

try this link

try this link

http://www.stevegoldberger.com/bt/BumtickerHomePage1.htm
hi, try this link for steve goldberger....love debs xxx

 

[jade45]

Bless You All

Bless You All

Thank you all for your support and concern, I guess I really am a
little getty, but some of you may have felt the same, this is really the only place with so much care and information" straight from the horses mouth " as one might put it.
I do have some more questions if you all wouldn't mind to read,I have had as one of my nurses might say it the million dollar work up, I'am alergic to die so I got the nuke juice,no fear
I don't glow,but at my last echo non stress,they said I had a deformed valve,I have regurgiation also calcaification along with
congestive heart failure, and if I had to have a blood thinner,how
does this effect women in their child bearing years?Did any of you start coughing blood cause I have ,and my chest always seems to stay tight.And many of you no much about reaccureance of
rheumatic fever once you have done had it?

Bless you all for your courage and I hope some will rub off on me.

 

[Nancy]

Hi Jade-

I see that you have CHF. That would cause the full feeling in your chest which might feel like breathlessness. It can also cause rapid weight gain, fullness in the throat area, fullness in the stomach area, swelling feet and ankles. Which valve is affected? Sometimes mitral valve regurgitation can cause a nagging cough which might at times bring up blood.

My husband had rheumatic fever as a teen and has two valve replacements. He's had 3 heart valve surgeries (they had to repair a leak in his mitral valve). Prior to his last two surgeries, he suffered considerably with CHF. His cardiologist had him on Lasix, and when it got really bad, Zaroxolyn which is a heavy duty diuretic. It became so bad that it was almost uncontrollable, even with a salt free diet and the diuretics. His last surgery corrected most of the CHF. He still must stay relatively salt free and has to stay on Lasix, but it's now controllable.

I hope your cardiologist is following you closely for the CHF and other heart symptoms.

If you aren't now on a salt restricted diet, you should try to eliminate salt and hidden sodium. That will help you and your heart a lot.

If you are going to eventually have valve replacement, it will correct these problems.

You should call your cardiologist with these symptoms and see what he says.

Best wishes.

 

[jade45]

Thanks for your support

Thanks for your support

To answer some of your questions,it's my mitral valve that is deformed, you know now that I think of it ,the doc's really never went into a lot of detail about it,I learned alot off the internet,
Something wrong with the aortic valve ,some reguritation in the
tricuspic valve and chf,I got that from reading my chart while the doc was out of the room Ha" Ha" anyway, 6 yrs ago my baby was about 6 wks 2 very small kids,so that could be why they wanted to wait , I was 40 at the time but my cardo said that I would feel like a 70 yr old,and let me say this ,tired is an understatement! I did read Bum Ticker it was great thanks for the
leading me to it. I have a cardo app. on March 13 ,2002 wish me luck.

God Bless All
You guys are GREAT!!!