Thoughts please - for next appointment

[pipersmith]

My doctor diagnosed severe AI. After posting my ECHO results, researching and reading your input - my numbers look really good. Thursday I had a TEE - I do not have numbers yet, but the doc that performed the procedure said my heart looked good, the valve was leaking, and he really could not tell why. He couldn't say that it was NOT a BAV but he also couldnot say that it was.

A concern to me is now some blood pressure "challenges." The more that I read, the more I wonder if they are related to a secondary issue. No one that attempted to take a manual reading yesterday at the hospital could get one. They could not hear my heart beat - in either arm. The "machine" recorded (as is recently frequently the case) that my left arm is very low and right nearly normal. From reading other posts - I asked the doc if the TEE showed a normal aorta. He said from what he saw it looked good. I did hear him mention (not to me) that he and my cardio had discussed a potential subclavian steal situation - but that is all he said - and his orders said make an appointment in a month. The (friendly, wonderful) nurses said that they were worried about that, and instead made the appt. in a week.

I am wondering, from your own experiences, if anyone has any specific questions or requests that they would make at the next appointment.

Thanks in advance!

 

[Ross]

Have you had a catheterization? If not, perhaps they should consider it or a Catscan. Maybe they don't feel they need to do anything more, but given the circumstances, I'm thinking second opinion.

 

[pipersmith]

No on both counts.
I did hear the doctor yesterday talking to my cardio - and he did mention that he thought an MRI of the veins in my upper body would be helpful. He did not discuss it with me - he is not my regular doc. He seemed concerned - the nurses more so. They and I were surprised at the order to wait a month.

Thanks....I will ask about these tests.

 

[Marguerite53]

Personally, I'm not comfortable with all the mixed vibes. I would definitely want to get a second opinion. I just don't like an office where everyone is on a "different page" so to speak.

Sometimes, too, though, the nurses pick up on our concern, or stress, or emotion and in trying only to make our experience more manageable for us, they are apt to create unneccesary concern. Do you think they made your appointment sooner because they could tell that YOU were worried about the doctor's response (or lack of)? Or did they make it sooner because they thought you needed to be seen sooner. Sometimes it's hard to tell.

In the meantime, try to take a deep breath....educate yourself, but don't stress.....worrying isn't going to help anything.

Keep us posted. Good luck.

Marguerite

 

[susieq14]

Hello Pipersmith!

We sort of met on the thread that Ross started about "making a grown man cry" when you responded to my post about not being able to offer any wise advice based on experience. Well that's how I feel right now with you. I've read your other posts and see that you have kind of been hit over the head with your valve problem. That I can relate to as that is how I found out about my valve problem 2 years ago in August 04. I'm "lucky" that I have no symptoms and surgery is in the future someday. Although the uncertainty is a little hard to deal with at times. Anyway I just wanted to offer you my best wishes as you figure out what exactly you need to have done. I also wish you well as you keep smiling until you decide to tell your children. My only suggestion is perhaps you should think about a second opinion since you are getting mixed signals?

Take Care!
Susie

 

[pipersmith]

Sometimes, too, though, the nurses pick up on our concern, or stress, or emotion and in trying only to make our experience more manageable for us, they are apt to create unneccesary concern. Do you think they made your appointment sooner because they could tell that YOU were worried about the doctor's response (or lack of)? Or did they make it sooner because they thought you needed to be seen sooner. Sometimes it's hard to tell.

In the meantime, try to take a deep breath....educate yourself, but don't stress.....worrying isn't going to help anything.

Keep us posted. Good luck.

Marguerite

Thank you Marguerite!

I knew one of the nurses, I think she is worried about me. She knows that I am always involved with my kids and she did not want me to "let this fall through the cracks" (her words). The other nurse was uncomfortable with all the problems with my blood pressure. I don't think that they were playing off of my worry, because I made a joke out of it all day. I tend to down play things as a patient because I hate to feel like I am being a problem. I am trying to stop doing that actually - I have had misdiagnoses in the past - and had the doctor say that I was not open enough about how I was feeling.

I have to admit - I was STRICKEN when I first found out that I had a heart problem. I was terrified. Mostly, I had very many questions and little information from the doctor. This site has cured me of that. I have a wealth of information - and know where to go for answers. I have a healthy fear - but I think that is normal. I really want to use you guys (sorry ) as a backboard - so if something doesn't sound right to you - I will know to look further. Does that make sense? I worry a little - but not too much - I am too busy. I have 4 kiddos and babysit for a set of twins + everything that keeps us all busy .

Thank you so much for taking the itme for advice. It really is helpful - and the more information I have - the fewer worries

 

[pipersmith]

Hello Pipersmith!

We sort of met on the thread that Ross started about "making a grown man cry" when you responded to my post about not being able to offer any wise advice based on experience. Well that's how I feel right now with you. I've read your other posts and see that you have kind of been hit over the head with your valve problem. That I can relate to as that is how I found out about my valve problem 2 years ago in August 04. I'm "lucky" that I have no symptoms and surgery is in the future someday. Although the uncertainty is a little hard to deal with at times. Anyway I just wanted to offer you my best wishes as you figure out what exactly you need to have done. I also wish you well as you keep smiling until you decide to tell your children. My only suggestion is perhaps you should think about a second opinion since you are getting mixed signals?

Take Care!
Susie

Thank you Susie! I appreciate your kind words. I can relate to your feelings - I could tell from your earlier post.
Take care of yourself as well