Just found out

[Kathy M]

Hi,

I too am new here. I found out a few weeks ago, that I have Bicuspid Aortic Stenosis. My cardiologist said he would expect that I would need the surgery in 4-6 years. I have no symptoms. He said my heart was pumping very well, my cholestorl was perfect and so is my BP. I was in such shock that I did not ask too many questions. To be honest I just wanted to run out of there.

I lost my husband on 911 so I really am quite concerned on how I am going to get through all of this without him there to help. I am also worried about my sons. They are 25 and 28 but we have all had a really rough time in the last 4 years.

I do have a question or 2. I notice that alot of people on here are talking about the TEE test. What is that? All I had was an echo. I have to see the doctor again in July.

Thank you all so much. What a wonderful group.

Kathy M>

 

[geebee]

Kathy,

Welcome to VR.com. You have come to the perfect place for support and answers.

Sorry to hear about your husband. I just cannot imagine what you have gone through and I am sure it is still painful. I am happy you have your sons to help you through and vice versa.

You will be able to get through this. We will help you, your sons will help you and the memory of your husband will make you want to overcome this as well.

A TEE is an echo with the probe actually inserted down into your throat. It gives a much better view of the heart. You will be well medicated and probably won't remember much. It will help your cardio know better just what is going on.

Please let us know how we can help you.

 

[Marguerite53]

Kathy. Welcome to this wonderful community. I am glad that the news you got was that you will have plenty of time to learn about your condition. And if you stick with us, you'll learn!!

I've known about my bicuspid for many years, but the stenosis seems to have begun very very mildly in the last 10, crept up to moderate almost 3 years ago and last week I had my valve replaced. Everyone is different. Do not get overly concerned. Do use this time to educate yourself as thoroughly as you can.

Why don't you begin by having your cardiologist mail or fax you a copy of your most recent echocardiogram report. You should learn to decipher the key points (numbers) and become more familiar with the terminology. We can help you. It is wise to remember to get copies of everything...stress test results, TEE (I never even had one prior to the surgery, I suspect they did one during the surgery )angiograms, etc.

The best thing we do here, because we truly are not medical professionals, is to help you formulate really good questions to ask you own medical people. The more you know, the more confident you can be when the time comes to replace that valve.
Again, welcome. Keep those quesitons coming!

Marguerite

 

[Phyllis]

Welcome, Kathy and our sincere sympathy on the loss of your husband. You've gotten all good advice here so far and I hope you stay around to search the forums and ask any questions you may have. You are fortunate to have the time to thoroughly research this and become a very informed patient. Next time you go to the cardiologist, you will be prepared with a list of questions which you should write down- the stress of just being there tends to wipe clean our memories. Best wishes to you.

 

[Mary]

I'm glad you joined us, Kathy.

 

[KMS]

Hello

Hello

Hi Kathy -

Welcome to a wonderful group of people. Like you, I was just diagnosed (a month ago today). 30 days ago I was in absolute shock...and today I feel comforted and informed. I can't tell you how supportive this group is and how good it's been to read through the testimonials. It's given me tremendous confidence as I prepare for surgery.

I can tell you that as you process this new information and learn about BAS, this site and its members can provide such powerful support. You can get through this...as Margueite mentioned, you don't have to be overly concerned. Just take one day at a time and rely on the excellent information and sound recommendations you'll hear in this virtual community.

Finally, I'm so sorry to hear about your husband. I can't imagine what the last few years have been like for you. Fortunately, you have your sons and they have their mom. And now you have a lot of new folks supporting you.

Warm regards,

Kristine

PS Seeing that you were from Hamilton made me smile. I moved from Morristown in 2003 and really loved North Jersey!

 

[epstns]

Hi, Kathy, and welcome to The Waiting Room -- the virtual room in which many of us await our own turns at valve surgery. I'm in a situation similar to yours. . . moderate to severe aortic stenosis with a probable bicuspid valve. At age 58, I still stay active, working 50+ hours a week and jogging 5 days a week, plus the usual family things. My cardio and I keep a close watch on my annual echo's and semi-annual office visits, as well as just keeping track of how I feel, exercise tolerance, and all that. We know I'll someday need to have my valve replaced, but as yet the tests and lack of clinical symptoms seem to indicate that surgery is some years in the future. Hopefully we both will have many years to get used to the fact that valve replacement will take place, sooner or later.

In the meantime, welcome. Make yourself at home and ask all the questions you can think of. I would bet that the best source of real-world user information regarding valve conditions and surgery will be right here on vr.com. I also know that all the folks here are about the most sharing people and supportive people I know.

 

[Karlynn]

Kathy,
Welcome! Much of getting through this is knowing those who have already done so. This is the greatest place in the world for that. We have many members with BAV. We have some members with BAV who have been in the "waiting room" for quite a while. It sounds like your doctor is not brushing this diagnosis off, which is a good thing. It's best to keep an eye on it, just so things don't sneak up on you.

I'm so sorry for your loss. Hopefully the time between now and whenever you have surgery will give you the information and assurity that you need to know that valve surgery is a highly successful operation with good outcome.

 

[twinmaker]

Hi Kathy and Welcome! We're glad that you found us here. First, let me tell you how sorry I am for the loss of your husband. I can only imagine what the last few years have been like for you and your sons. I'm so thankful that you have each other though. Secondly, most of us have been where you are now finding out about a heart diagnosis and being shocked at hearing it. I was first diagnosed back in 1974, and I can still remember sitting there listening to the doctor, but when I left his office, I couldn't remember much of what he said other than, "you need open heart surgery". I'm glad that you are being followed and that you are doing well. It sounds like you'll have time to learn a lot about your condition, and there are many people on this site to help answer your questions and give you support. I'm still learning new things everyday from these wonderful people on here. Again, welcome to the family! LINDA

 

[Kathy M]

You guys and gals are great.

You guys and gals are great.

Thank you all so much for getting back to me. It really is a comfort and helps to make things a little less stressed. It always amazes me how there are great people in this world who really want to help. With all that had happened I was afraid my boys would think that the whole world is full of hatred. They have seen the good in so many people.

Like I said I was in such shock when the doctor told me what this was, that there is so much I didn't ask him. It seems to be that I am finding the answers here. I also have a rare liver disease and belong to a support group on line for that too. We started with only 10 of us and it is now over 3,000 strong. I also belong to a 911 support group again I don't think I would have come this far with out all of these people in my life. I am a hospice volunteer also.

Thank you guys so much and I will be on here often. Much luck and love to all.

Kathy M

 

[Cooker]

Welcome

Welcome

Hi Kathy,

These folks have been my port in the storm; they made the trip much easier. I hope you find this place as informative, uplifting and loving as I have... What a great family!!! .

All the best and ask all the questions you want; we never get tired of helping when we can.

Tom