Questions about this condition-AmeeB

[Ross]

AmeeB
Rookie Member (under 20 posts)

Registered: Jan 2004
Location: puyallup,Wa
Posts: 2
questions about this condition
Hello this is my first time posting on this site. You all seem very knowledgeable about valves conditions. I really dont know much about my condition. I was told after an ultrasound that I only have two valves instead of three and may have to have valve replacement when i am in my 50's or so. (I am 34 now) The only reason i went to the cardiologist is due to my father passing away in April of 2003 from a condition he wasn't aware he had called congestive heart failure. My famly urged me to get checked because they said sometimes it could be hereditary. The only thing my doctor told me was that when i go to the dentist i need to take an antibiodic before getting anything done. He also said that if i start getting shortness of breath i need to let my doctor know. I am currently 4 months pregnant and I notice that going up the stairs i have to breath through my mouth to catch my breath when i reach the top ( there is only about 20 steps) I am not overweight or in really bad shape. Although i dont exercise, but am active with three children, a husband, and a part time job. My question is, should i be doing something proactive? Is there an addition risk being pregnant? Well i have more but i wont overwhelm everyone with them. I truly appreciate anything anyone with experience with this condition could tell me. I look forward to hearing form you and wish you a very happy new year!


__________________
Amee


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Amee



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01-02-2004 01:47 PM



Ross
Asst. Admin

Registered: Dec 2001
Location: N Canton, Ohio
Posts: 4211

Hi Amee and welcome to the forum.

You have to have more then 2 valves or you wouldn't be sitting here typing to us. There is the Aortic, Pulmonic, Tricuspid, and Mitral valves. Perhaps you meant leaflets??

http://www.childrenheartinstitute.o...rk/hearthse.htm

None the less, your shortness of breath is most likely due to the pregnancy. Babies have a way of doing that to women since all the organs are jam packed together. If you should experience breathlessness extreme, then I'd be consulting the doctor right away.

Proactively, there isn't a whole lot you can do about it. I'm sure the pregnancy will be a little more taxing then normal, but if your doctor isn't worried at this point, you shouldn't need be either.

I would suggest that you get a copy of that echo report to keep for yourself. That info may be invaluable at some point in time.

Welcome and have fun.


__________________
Dissecting Aortic Aneurysm Repair 3/95
Aortic Valve Replacement 7/02

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01-02-2004 01:58 PM



Nancy
Seasoned Member (over 100 posts)

Registered: Jun 2001
Location: upstate New York
Posts: 4046

Hi Amee-

Welcome to the site. This is a terrific place with many very knowledgeable people with all kinds of valve problems.

I think that your cardiologist told you that you have a valve with two leaflets instead of the normal three, rather than two valves instead of three. The body actually has four heart valves, aortic, pulmonary, mitral and tricuspid. Some people are born with what is known as bicuspid valves. We have several folks here with that condition, and I'm sure they will come along soon and talk with you about it.

Congratulations on your pregnancy. To keep yourself safe and to make sure that all of your doctors are aware of what your cardiologist has told you, you should request a copy of your recent ultrasound (was that an echocardiogram?) which showed the bicuspid valve, and which should also contain various measurements that are important for all of your doctors to know. Keep that copy for yourself, for your records. At the same time request that the cardiologist send copies of your echo (echocardiogram) to your Ob/Gyn and to your Family doctor. They have to have this information. It's very important!

You have the right to request all of these things, so do not hesitate. You may have to sign some paperwork to get the copies sent.

Pregnancy puts a lot of strain on your heart and your Ob/Gyn needs to know about the valve problem.

If you are feeling shortness of breath you must call your doctor and discuss it with him/her.

Along with being in the care of good doctors, you have to be proactive with your health. Everyone should.

I wish you all the best, and I hope you will stay and enjoy our little home here.


__________________
Nancy, wife of Joe (the patient)
AVR mechanical (Bjork-Shiley), Dr. Peter Maggs, New England Deaconess, Boston, Mass. 1977
MVR mechanical (St. Jude) and valve repair (Heart Port), Dr. Harry J. DePan, Ellis Hospital, Schenectady, NY 1999 and 2001
Guidant pacemaker, 2000
Double lung surgeries and a lot of other things

"Never give in and never give up"



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01-02-2004 02:03 PM

 

[Ross]

Sorry Amee and Nancy. I went to fix the misposting and deleted the whole darn thread. Not my day today. Perhaps I should stay away from the computer.

Again, sorry but here is what there was above.

 

[MarciaB]

Amee,

I went through two pregnacies with mitral stenosis/regurg. You definately want your OB to know about it. I was considered "high risk" and was watched closely by both a cardiologist and my OB. They should know about the shortness of breath and will also watch fluid retention very closely. I didn't have any problems either time, but pregnancy puts a lot of strain on the body and the heart. You don't want to be surprised in the delivery room with unexpected complications or afterwards with permanent heart damage. I'm sure you will be fine, but there are enough things to worry about during pregnancy, not to have to worry about this also - let the docs do the worrying (or not worrying!)

Marcia

 

[Nancy]

OK, Ross, Here is your punishment

OK, Ross, Here is your punishment

Sit in the corner

 

[Heather Fisher]

Hi Amee,

I was born with a bicuspid aortic valve and recently went through surgery to replace it. I have known about this valve since my early 20's and am now 47. I have always had to take antibiotics prior to dental procedures. I have a 26 year-old stepson and an 18 year-old son. My pregnancy was high risk but went well overall until I developed pre eclampsia at the end. I decided not to go through any more pregnancies. I was watched closely by a cardiologist as well as an OB. You need to clarify your condition with your cardiologist and make sure your OB is aware of your valve problem. Please see your cardiologist for regular checkups as he/she will need to monitor your valve. Best of luck with the pregnancy. I am sure everything will go fine. Be sure to keep us posted and feel free to ask any questions.

Heather

 

[AmeeB]

Thank you all for replying to my message

Thank you all for replying to my message

Okay i guess i was mistaken about the two valves, it must be two leaflets. (oops) My ob/gyn is aware of the condition and he doesnt seem too concerned about it. I know if there was something i should know he would tell me because he is such an awesome doctor. I will request copies of the ultrasound right away. One more question. Has anyone told any of you with this condition to not do aerobics or anything like that? I know that lifting heavy weights is not recommended and i dont do that. Also i am talking about after the baby of course. Right now i am going to start walking to help my heart throught the pregnancy. Again. thank you for all your answers and kind words. Ciao for now.

Amee

 

[Karlynn]

Amee,
Welcome aboard. This is such a wonderful group of people with SO much knowledge about heart valves and things related.

I knew I had my valve problem prior to any pregnancy. I went through pregnancy ending in miscarriage and a normal pregnancy without problems - no symptoms. My 3rd pregnancy sent my valve into the "dumpster". (and I have a gorgeous 18 year old, 6' tall daughter for the effort.)There's really no predicting when or how or why it occurs when it does. We have members here who had problems with their very first pregnancy and some others like me.

The moral of this story you ask? It's to be your own best health advocate. My OB/GYN didn't really have enough experience with pregnant woment with heart valve issues and sent me to a doctor who he thought could help - who also turned out not to know a whole lot. I got a lot of bad info. I wish I had this group back then. Don't hesitate to ask any questions and run past us what your doctor says - there truly are no stupid questions. All those here with a lot of knowledge started out not knowing anything - so ask away!

Best wishes!
Karlynn

 

[Harpoon]

Light to moderate exercise is great, just don't push yourself too hard.

In fact, light to moderate exercise is good for anyone who happens to be pregnant, or so I've been lead to believe.... =)


If you feel good about your docs then you're probably in good hands, though you might want to start reading up a bit on valve disorders and put together a list of questions you have to ask your docs.

My understanding is that any heart condition can have a serious effect on the success of a pregnancy. Your heart takes on an additional load of pumping for you and for your unborn child and that stress alone can cause trouble if you're heart's not perfect to begin with. The added stresses of weight gain, hormonal changes, changes in diet or exercise and so forth can all have an effect on you, your heart, and your baby.

If you already know there's something "not right" with your heart maybe you can ask your OB/GYN for a referal to a cardiologist to be sure everything's OK.


Oh, and one more thing to add since I'm asort of "specialist" in this area, have your baby checked for congenital heart defects. If your condition is hereditary, it might be passed on in some form to your child and the best way to deal with that is as soon as you can. If you know what's coming everyone can be prepared for it later on.

I was born with a congenital heart defect called transposition of the great vessels (basically the two main pipes that move blood around between the heart and lungs were switched and that's a VERY bad thing) I had surgery shortly after I was born and lived quite happily for almost 28 years. About two years ago my tricuspid valve started failing and I had to have it replaced in March of 2003.

There's no history of inherited heart defects in my family. My father's parents died of heart attacks in their late eighties and my mother's parent's are still alive and well in their nineties.


If you already have a "predisposition" to heart trouble then there's a higher risk of it being passed on. Check it out with your docs, ask about testing (most likely a more thorough ultrasound, called "echocardiogram" when performed on the heart, though it's the same kind of thing) for you and your baby and be sure there aren't any "problems" laying ahead.


Good luck to you and congratulations!!!

 

[Harpoon]

Oh yeah, congestive heart failure...

Was gonna say something on that too since I've got a fair amount of experience there as well.

I've got EVERYTHING yet I'm still quite active and chase around asa newspaper photographer shooting bears on the loose and inside burning houses and and and.....


Anyways. Congestive Heart Failure (CHF for short) sounds really nasty but it's not what most people think of. The "failure" refers to the hearts inability to pump as efficiently as it's supposed to. Congestive generally means that because the heart isn't pumping well enough, fluid is building up in various spots like the lungs or abdomen or hands and feet (depending on what part of the heart isn't "opterating within specified parameters")

There are 4 stages to CHF, Stage I is pretty light, it's there but hardly noticeble and doesn't really afffect your day to day life, exercise, or routines.
Stage II and III are more serious. There can be some affect on how well you keep up physically, how long you can tolerate exercise or how much you can do. You might also see edema (water retention) in your extremeties or have congestion in your lungs (like a nagging cough that doesn't go away for ANYTHING, including cough meds) You generally feel like you're able to do most things, but not everyhting that you used to do, at least not without some additional effort.

Stage IV is the most serious, generally applying to those that might be bed-ridden, or nearly so. No tolerance for any realy phsyical activity, even moving from one room to the next. It can mean loss of appetite, severe fluid retention, dizziness or lack of ability to focus. Generally feeling really lousy, like your body CAN do the things you want it to do, but it just won't respond at all.

I was there. I wasn't bed-ridden but I was real close to that.

Then I got an artificial valve and after two months in the hospital (I had an abnormally rough recovery) I'm about 90% of what I was before I ever got sick.


Anyone else have thoughts on CHF???

 

[KimC]

Harpoon,

Help me understand something if you can ... once the heart starts to fail, is it irreversible? I thought the condition was permanent, even after valve replacement. I have a lot of factors against my heart right now, including a recent (third) pregnancy in which I was initially diagnosed w/ peripartum cardiomyopathy; hypothyroidism; and two moderately leaking valves, the aortic and tricuspid. I have a trace leak in the mitral valve (which has never kept me up at night).

Amee:

First, congratulations. Many people on this board were advised to never have children! What a blessing we share.

Pregnancy is very hard on your heart, especially if you have a congenital defect. I was misdiagnosed during my pregnancy.

Pregnancy, and especially delivery is serious stuff. You and your significant other need to be assertive and vocal about any symptoms you experience. I would create a Birth Plan and insist on BP and heartrate monitors during labor.

I would also recommend that you deliver in a major tertiary center versus a smaller hospital. Chances are that you be fine and you'll deliver beautifully, but why take any risks? It really depends a lot on your nurse during labor.

You can read my story on the first page of VR.com: "Under Observation" by Kim Caroline.

Be sure to take it easy -- walk, don't do aerobics. Put aside your "cardio" workouts until you have that precious child! It will be worth it. Don't give up exercising -- it has so many positive benefits -- but take it down a couple of notches and remain vigilant for symptoms of heart failure (which is a remote possibility).

If you'd like to keep in touch w/ me, you can send me private messages. I delivered a healthy baby boy on July 23, 2003.

God bless,

 

[SHerrin Hutt]

Ameeb

Ameeb

Welcome,
To the greatest web sight. The friends you meet here are like no other. I really don't know how I found this sight. But I am sure that my ANGEL brought me here. I am well past the my child bearing years. I wish you all the luck with having a healthy baby.


Sherrin Hutt
Valve repair 5/99
Valve replacement 3/02

 

[Harpoon]

Heart failure isn't curable, only treatable, at least I'm pretty sure it's that way.

You can't "get out" of heart failure. You can get a LOT better, but it takes a lot of lifestyle changes and vigilence to manage. Like a chronic condition of some kind.

You can reverse the effects of CHF, you can control or improve the symptoms, but you can't "recover" from it.

Same sort of thing if you're listed for a heart transplant. Some patients that are on the transplant list just get better for one reason or another so they're taken off the list because they don't need a new heart any more (for the moment anyways) They still have a heart condition, it may still be pretty serious, but whatever treatment they've been given was enough to improve their heart function so that they could survive decently wiith what they have.


Transplant is the option of very last resort.

 

[Ross]

Re: OK, Ross, Here is your punishment

Re: OK, Ross, Here is your punishment

Sit in the corner

Haha. That's twice this week I've been dunced. I guess I must be.

This image was at another forum for me:

 

[Nancy]

Regarding CHF (congestive heart failure), it's a very important subject.

Joe's had it for many years, and has been in all stages. Last year Stage IV almost cost him his life.

I think I'll start another thread on the subject. Please, everybody who has this condition join in with your experiences.

I'll start it on Heart Talk.

 

[Nancy]

Well, Ross---

If the shoe fits------------

 

[KimC]

Ross,

I could use your hat in three different sizes: small enough to fit a 3 and 6 year old, and big enough to fit a man-size 37 year old. In fact, I could probably use it on myself once in awhile.

Keep up the good work!

Harpoon,

Thanks. I appreciate your honesty.

Nancy,

I'm looking forward to your thread on CHF. When I've asked for a simple blood test to rule it out (and ease my anxiety), my doctor says, "Yeah, in 30 years I'll give you one." I don't see why it's such a big deal, but maybe the results would only be positive if the condition were severe.

At the end of the day, let's say I did test positive ... no surgeon in their right mind would do anything with me right now given my stellar performance during labor! And if the symptoms I'm experiencing are related to early heart failure, they're only mild and basically don't interfere with my lifestyle (unless I try to jog up a big hill and do aerobics). Given my low BP and sinus bradycardia, I'm also not a candidate for drug therapy, other than low-dose Toprol and aspirin. Blah, blah, blah ...

I guess I need to keep watching funny movies, stay away from salt and alcohol and read my Bible.

Warm regards,