Questions?

[kfredva1]

Hi All,

I posted as a newbie in the bi-cuspid valve forum. Quick run down, was diagnosed with BAV in my 20's and told not to worry about it. I have never seen a cardiologist but have had an echo. ordered by my primary dr. last year and this year. My brother died from an aneurysm in 2000 and was diagnosed in 1994 with marfan syndrome. I have never had anyone explain the echo. to me or suggest I be seen by a cardiologist. It seems I have offended the dr to suggest she refer me. I am no rocket scientist, but I see some change from this yrs echo compared to the last one, and I want to know what it means.. not "your good for another yr". Working hard to find some answers. I would appreicate anyone's suggestions or if anyone has had the same problems before.

Kathy

 

[Greg a]

As I said there in the other thread ....get a new medical team includinga cardiologist.......you have to be your strongest advocate.....here we have medical ombudsmen to help but I think there other than some hospitals having "patient advocates" you stand on your own ....so stand tall and do what you must do to get answers ....you need them...if not forethcoming present at an ER "WITH CHEST PAINS"

 

[dfelder]

I would say fire your doctor and find a new one. If you have to scream at someone to get thier attention about this so be it. You may have gone too long already. A doctor works for you. Would you keep going to a hairdresser that cut your hair wrong everytime?

 

[dick0236]

With the history of your family (brothers death), I would seek the opinion of a cardiologist. Primary Care physicians, even if they are Internists, are not qualified, by education or experience, to be expert in "heart issues". I would think she would welcome the opinion of a trained heart specialist.

 

[epstns]

Kathy - I'll have to agree with the others. Get a cardiologist on your care team. If you want to keep the internist for other matters, so be it, but do get a good cardiologist to review your echo and explain it to you. The incidence of Marfan's and other connective tissue disorders happening along with bicuspid aortic valves is too great to be casual about it. Find a cardio who specializes in these conditions and have a thorough evaluation. Only then will you know what's really happening.

 

[Superbob]

With the history of your family (brothers death), I would seek the opinion of a cardiologist. Primary Care physicians, even if they are Internists, are not qualified, by education or experience, to be expert in "heart issues". I would think she would welcome the opinion of a trained heart specialist.

What Dick said. I agree absolutely. You definitely need to be seen by a trained heart specialist.

 

[nngbwh]

I totally agree with the others. If you are not getting the answer you want it's time to move on.

 

[Jeff Edmonton]

You are on the right track Kathy, surprised your doctor did not prescribe you with stress relief medication instead of diagnosing the actual problem. If you respect your Dr. keep insisting on a referral.
I have seen my GP for 15 years and trust him, it makes a big difference.
Good Luck:wink2:

 

[OldManEmu]

Kathy your opening line already has me worried.

was diagnosed with BAV in my 20's and told not to worry about it.

Was the risk of endocarditis explained to you even if the BAV is functioning well????
It just gets worse.

My brother died from an aneurysm in 2000 and was diagnosed in 1994 with marfan syndrome

It seems I have offended the dr to suggest she refer me.

While you are on a roll with offending her you may as well go all the way and look for a new GP, this one is not taking YOUR health seriously.
You need to be properly evaluated for Marfan syndrome and you need your BAV followed by a cardio that is familiar with the condition.

 

[DeuxofUs]

Agreed

Agreed

Everyone here is spot on. You do have to be your own advocate. You have to be pushy even if it's not in your nature. It's YOUR heart and YOUR life. Doctors go home to their comfortable little worlds, we have to live with what the cards have dealt us....

Only one thing I have to say as far as that doc goes... NEXT!!!

Make yourself a priority.

 

[Natina13]

You are your own advocate....if you do not speak up for yourself, who will. I fired my Cardiologist of 12 yrs and my Endocrinologist , because they were negligent with my care. Find a Doctor you feel confident about, you can look up alot of things online, in regards to their record, but in the end, you have to feel like that person cares about you....as an individual.
Welcome to the forum, Kfredva1..... hoping all goes well....your in my prayers.

Renee
Go Team 2011 !!!

 

[scott.eitman]

Take charge. I have numerous times. In 1998, my Cardio was telling me not to worry that he would know when the time was right. I knew the time was right and decided to get 2nd opinions. They all said, without prompting, that it was time. My life was much better after surgery.

Again in 1998, I had a strange and undiagnosed virus which had me in the hospital for 10 days. At the 5 day point, my wife called my CCF Cardio who had me transferred immediately to the CCF. My primary fired me and I found a better primary.

Yes, you may offend someone, but that is OK. Not all doctors are the same or as knowledgeable as the each other. Even at the CCF, there are Cardios and Surgeons who are more knowledgeable about certain parts of the heart than others.

Best of luck to you...stay well
Scott

 

[kfredva1]

Thanks to you all for such timely and heart felt responses. I now have an appointment with a cardio. Thurs. at 1:15 pm. It is with a cardio. here in my area (very rural) but its better than nothing. I think once it is explained to me I will feel better. The echo report stated the insufficiency has not changed, and states "does not appear significantly changed from last yr" but the statement on here that is bothering me is "LVEF is estimated at 65% without significant regional wall abnormalities." The LVEF is 15 points higher than last yr, and there were no wall abnormalities. thanks for all you do here, you have no idea how much this web site has meant to me
Kathy

 

[Mentu]

Kathy, I'm just gilding this particular lilly but this is such an important topic that I'll add my opinion to the others. As I've reminded several other people, your doctors work for you; you pay them. You must not allow yourself to be intimidated by them. They practice no magic and all of them are replaceable if they do not serve you well. My own doctor has suggested on several occasions that I seek a second opinion. She says that any doctor who "gets their feelings hurt" because a patient wants a second opinion is at best unprofessional. If your doctor is miffed at you for wanting a second opinion, then it is time for you to look for someone more professional.

Larry