Severe aortic stenosis

[swatig]

Hi everyone,

I have been reading this forum almost everyday since I have got to know that I would be needing aortic valve replacement soon. I am 26 yrs old, got married last year and always knew that I had bicuspid aorta but what I dint know was that I would be needing a valve replacement so early in life.

Today I went for a test and my cardiologist told me that my valve has severe
stenosis (4+).

Since me and my husband would like to start a family after a couple of years, I would like you to advise me which valve shall I go for and also If any of you had a pregenancy post AVH.

Thanks

 

[Curtsmum]

I can't help with your questions but just wanted to say welcome, there are lots of people on here that will give you some good advice.Best of luck paula

 

[WayneGM]

Welcome to the VR community. I don't have first hand knowledge but several members have had pregnancies post AVR so hopefully they'll come by with some insights. There' lots of infomation and opinions on valve selection as well. Best wishes. Glad you found us.

 

[Phyllis]

Welcome to the forum! There are many posts about pregnancy and valve selection. You will probably want to consider a tissue valve as pregnancy is difficult with a mechanical valve, but it has been done. Here is an example of one thread: http://valvereplacement.com/forums/showthread.php?t=20239&highlight=pregnancy If you put "pregnancy" into the search box, you will come up with many more threads to read.

 

[CathyK.]

Welcome!! I can't say first hand but what I have read is that a tissue valve for those wanting to still have children is best. I am 44 and just had my OHS for a bicuspid aortic valve. My children are already teenagers and wasn't planning on having any more children so it was not an issue for me. Read all the info on valves and it is your choice! Good Luck!!

 

[Marguerite53]

Welcome to our community! I was able to have all 3 of my children long before my valve went stenotic so I cannot advise you any there. Childbirth is quite a workout, what with all the peculiarities and lack of sleep! Whatever you choose, please give yourself more than ample time to recover before you do start your family. That said, you are so nice and young, you will bounce back from your surgery very very soon! If you have the full sternotomy, (which is the normal way in!) it will really take a year to fully feel right. I don't think I'd want to put the pressure of pregnancy and spreading ribs on the newly healed sternum for a while!

You might want to look into minimally invasive surgery as an option. They do not cut the sternum in half, and the recovery is generally more painful (I think) but much shorter.

I see you are in Seattle. Will you be at the UW medical center? They have fabulous resources. Had I not been satisfied with the Portland Metro area's expertise, I would have driven up the I-5 to UW.

You may want to consider having an extra meeting with your surgeon to get some advice about the pregnancies and valve types. Be sure that the valve you choose is one that the surgeon is very familiar with and has worked with a lot. Experience, experience, experience....that's the name of the game with the surgeon, whatever you choose!

Keep us posted. Thanks for joining in!

Marguerite

 

[Karlynn]

Welcome! My mitral valve problem was diagnosed 2 months after I married. My replacment wasn't for several more years (should have been much earlier) but I do know the shock you feel from having such news interrupt a time that should be very blissful. Almost 26 years later, I fully believe our marriage was made stronger for going through my valve problems together.

If you are wanting your own bio-children, then a tissue valve is the way to go. You will want to discuss this at length with your cardiologist as to what type of tissue valve, and make sure that they are fairly secure in you being able to manage a pregnancy well post AVR. Pregnancy can be done with a mechanical valve, but the Coumadin (warfarin) makes it a very hard thing to manage and there are many risks involved to the baby.

Best wishes!

 

[Mary]

Hi everyone,

I have been reading this forum almost everyday since I have got to know that I would be needing aortic valve replacement soon. I am 26 yrs old, got married last year and always knew that I had bicuspid aorta but what I dint know was that I would be needing a valve replacement so early in life.

Today I went for a test and my cardiologist told me that my valve has severe
stenosis (4+).

Since me and my husband would like to start a family after a couple of years, I would like you to advise me which valve shall I go for and also If any of you had a pregenency post AVH.

Thanks

Welcome to the forum.
Stenosis isn't measured as a 4+ (to my knowledge) so you might want to check with your doctor again to clarify what you were told. What test did you have that gave the cardiologist reason to believe that your valve was severely stenotic?
Have you asked the cardiologist what valve he would recommend? Have you made a decision how long you would like to wait before you start a family? If the cardiologist feels you will need a replacement fairly soon, then I would ask for an appointment with a surgeon and when you meet with him, ask what he would advise.
If you have a bicuspid aortic valve, you might want to read some of Arlyss thread's about the bicuspid aortic valve disease foundation. You have some important decisions to make, and I feel only you can make them with the help of your husband and doctors.
We are here to offer our own experiences, but each member has their own unique set of circumstances. Good luck and best wishes.

 

[catwoman]

Swatig:

I have no children, so I can't answer your question re pregnancy after AVR.

However, I will be in Everett WA in 2 weeks at the National Guard Amory there for a cat show April 28-29. Will be showing a Norwegian Forest Cat grand champion and an American Shorthair champion.

Will be back the following weekend to judge a show Sunday, May 6, at the Issaquah Community Center.
If you like cats and have time, please hunt me up. Would be happy to talk with you about valve surgery in general.

 

[swatig]

Thanks Everyone!

Thanks Everyone!

Hi,

I am glad that I am a part of this group now and you guys are wonderful.
To be true I am not very scared of the surgery after goin through a lots of cases on this site, Going through this forum everyday has made me prepared and head strong. But ya I would surely like to mak a right decision regarding my valve and I know you all are by my side.

Thanks a tonn

Swati

 

[swatig]

Some information!

Some information!

Hi Mary,

I might be wrong as far as 4+ goes. I actally dont have the set of my reports so far, as my Cardiologist told me that he would be passing it to the cardiosurgeon he refered. I have to meet him on Monday.

The tests I went through were Eco and Heart Catheterization. I had heart catheterization yesterday. After the test doc told me and my husband that my valve is severly stenotic. I also got a chance to sneak into the reports kept on the table and so could see 4+, I think it can also refer to the velocity of blood.

I also wanted to say that I am not planning for kids for another two years which I think would give me enough time to recover.

Thanks

 

[savysmommy]

Hi swatig,
Welcome! This is a great site!
We have many things in common! I am also in the Seattle area, and I had my Aortic Valve Replaced 1 1/2 years ago. I am 27. I choose a tissue valve, for the same reasons, I want to have more children. I have 1 already, but wasnt comfortable making the choice to never have another at such a young age.

Where are you thinking about having Surgery?

Shannon

 

[swatig]

Hi

Hi

Hi Shannon,

Nice meeting you. We havent decided about the cardiosurgeon so far. Some friend refered us Dr. Verrier at UW. But right now my Cardiologist is Dr. Nathan Zilz at Over lake medical center and he suggested Dr. Hoang.
I havent visited any of the cardiosurgeons yet.

Where did you have your surgeory? How are you feeling now?

Thanks

 

[Mary]

Hi Mary,

I might be wrong as far as 4+ goes. I actally dont have the set of my reports so far, as my Cardiologist told me that he would be passing it to the cardiosurgeon he refered. I have to meet him on Monday.

The tests I went through were Eco and Heart Catheterization. I had heart catheterization yesterday. After the test doc told me and my husband that my valve is severly stenotic. I also got a chance to snaek into the reports kept on the table and so could see 4+, I think it can also refer to the velocity of blood.

I also wanted to say that I am not planning for kids for another two years which I think would give me enough time to recover.

Thanks

Gee,
You did great after your heart catheterization! I haven't heard of many patients being able to sneak a look at a report after having the procedure, but I guess there's always an exception! Maybe you were still under the influence of drugs and thought you sneaked a peek?
Please let us know when you see the surgeon. We'll put your surgery date on the calendar at that time.
Once again, we're so glad you joined us.

 

[savysmommy]

I actually had my surgery at Overlake by Dr. Austin. He was great. He spent a lot of time talking with me and answering every question about the valves. I never felt like I was being rushed out of the office. Also, there were at least two occasions just before the surgry, that I had questions, and he made himself available over the phone. I dont know if that is the "standard" but to me, it seemed generous, since a lot of docs would just comunicate in the office or through their nursing staff.

I met with two other surgeons. One that was recommended at UW. I cant remember his name. The other was out of Virginia Mason (or was it sweedish..) I think his name was Dr. Davis. I have a bad memory.. sorry. The one at UW, probably has the best reputation, but I didnt appreciate his bedside manner. He acted like I was just another valve.

My cardiologist is out of Evergreen, but both Evergreen and Overlake Cardiologist are part of the Soundheart.

I got an Edwards Pericardial Valve. We are hoping to get 15 or more years.

Overall I feel good. Surgery has fixed the valve, but has made me more alert and aware of my body and changes. I am more sensative to changes in my body, and easly get scared that its my heart. Those changes were not expected, but I suppose in time I will adjust.

How did you find out that you had a problem with your valve?

 

[swatig]

I knew about my problem since childhood. My mom tells that she had taken me to a general physician as I had cough or cold when I was 2yrs old and the doc told her that I had slight murmur. Then my parents consulted a cardio and thats how they got to know about it. But I had absolutely no symptoms while growing up except that I used to get exhausted sooner as compared to other kids. But recently I felt that I get out of breath very soon and thats how decided to see the doctor.

We moved to Seattle last year. So do not know much about the Doctors available here. The information you gave would be very helpful in making some important decisions.

I am satisfied with my cardiologist. Do you know how many years of experience did your cardiosurgeon have?

 

[swatig]

Hi Mary,

Will surely let you know whenever I see my surgeon and as far as sneaking goes will surely do a better job this time

Thanks

 

[Marguerite53]

Hi again, Swati. Depending on how much you want to learn about your condition, you can (and we all probably feel you should) call your cardiologist and have her mail or fax you ALL the report information. It is yours for the asking and it will help you understand how the doctors arrive at decisions if you have your very own "numbers" close at hand. Most of us use the echocardiogram reports...I don't see that you had one of those. It doesn't matter, since the heart cath is by far more accurate. Mine cath was done just a month prior to my surgery and frankly, I never requested a copy of it....I should.

Anyway, your attitude is WONDERFUL!! Maintain that sunny outlook because, really...it's the outlook you should have with today's technology and your youth on your side!!

Marguerite

 

[Susan BAV]

Hi there - I wanted to welcome you to the site also. Glad you found it. Hope things go well for you. Take care and post again.

 

[swatig]

Hi Susan,

Thanks a lot. I am pretty sure things will be fine soon. I am meeting a cardio surgeon on 26th April and another on 3rd May, lets see which is worth handing over my heart to

Take care
Swati