really confused now

[LoriSue]

Hi guys. Well, I am really confused now. Two weeks ago or so I sought out another PCP in order to get a refferal to a cardio. I made an appointment and told him that I was diagnosed with bicuspid aortic valve 18 months ago when I had my first echo. When I went to the appointment two days after that I explained the symptoms (and the progression) I have been having for the last couple of months. I told him about my feet swelling (feels like sausages in a casing), the arrythmias, the dizziness, the problems sleeping, the laying flat and getting SOB, being EXTREMELY exhausted, lasting only about 4-5 hours before I need a nap again, and then I asked if he could refer me to a cardio who could oversee my heart issue. He said that he would like to do a new echo so I thought "great" this guy is going help me. I also said that even if my symptoms weren't due to the bicuspid valve I would still like to see a cardio because at some point in my life I would probably need to address the issue. Especially since every woman in my family has already had theirs changed except for me. I know that some people end up never having it done but I would like an evaluation, if nothing else than for a baseline purpose. He set up the echo, I had it done a few days later and his office said they would call me when they got the results. Well, a week went by and I have been having a rough time of it this week. Very, Very tired, 4 bouts with arrythmia in the last 5 days, and I passed out today on the ground in my barn while I was trying to feed my horses. So when I eventually made it in the house. I sat down and rested for about an hour and then I called the doctor. I said I know that you guys said you would call me with the results and I am not trying to be a pain in the butt, but I passed out about an hour ago and I need to do something. This is not acceptable. I refuse to live my life like this. I am 40, there is no excuse. The doctor got on the phone and said this to me.....
"Well.....your heart doesn't look all that bad..."
"The echo didn't show a clear view of your aortic valve so we couldn't determine for sure about the biscuspid issue"

I asked him if they compared that echo with the previous echo which CLEARLY shows only 2 leaflets and he told me "Well....I don't think so"

I specifically told them the date of the last echo and they said they would compare them. What do I have to do.......hold their hand while they are supposed to be doing their job?

The doctor then proceeded to tell me that he thought my symptoms were due to anxiety and that he would be more than happy to prescribe something for me.
Excuse me but....HOW THE HELL DOES ANXIETY CAUSE MY SHOE SIZE TO INCREASE FROM A 5 1/2 TO A TIGHT 6?
This is crazy, it is making me feel like I am crazy. Is there anything normal about waking up on the cold, wet ground?
I don't know what else to do, I am literally at a loss right now. I feel like I am losing my mind because I don't understand why no one will listen to me. My family sees my downhill progression and they keep telling me to hang in there and fight for what I need because they definitely see the problem but this is beginning to take an emotional toll on me and I am already exhausted.
Do I need a referral to get an appointment with a cardio?
I know of several good cardio's in the area that take medicare but I have never been through this process before and I don't know how it works.
I am sorry this is so long....I am really feeling bad at the moment.
Lori

 

[Ross]

Lori you going to have to get insistent with this Doctor I'm afraid. Most Cardiologists require referal, but not all. You'd have to call around on that one. I wouldn't settlle for what your getting now. It's better to attempt to get the referal from this Doctor or seek out another and get one from them. It's your life and your health. If your proactive enough about it, this should be obvious to this Doctor.

 

[bethanne]

Lori -
I am sorry you are having to go through this. This is totally ridiculous...

You already have a diagnosis of a bi-cuspid aortic valve, you are having symptoms that are typically associated with a leaky valve. So why isn't he willing to give you a referral for a cardiologist?

I would go straight to the pcp's office and request a copy of the echo you just had done, as well as a copy of the echo you had previously. I would ask to speak with the doctor face to face versus a phone conversation and ask him to give you the referral to a cardiologist. You already have a diagnosis that should be monitored by a cardio and not a pcp.

Once my pcp recieved the results of my echo (he diagnosid the systolic murmur) showing the aortic regurgitation he referred me straight to a cardiologist who had me have the TEE procedure done to identify the cause of the aortic regurgitation. That is how I got my bi-cuspid aortic valve diagnosis

I have been going to a cardiologist ever since for echos annually and now every 6 months.

I believe there is a link on the reference forum for the guidelines of treatment for bi-cuspid aortic valves. I will see if I can find it.

I wish I was more knowledgeable about medicare. You could always call the cardio's office and ask if they require a referral for medicare, explain you have the diagnosis and are concerned about your symptoms?

Do you have someone that could go with you?

 

[bethanne]

Lori -

Here are the links for the "ACC/AHA Guidelines for the Management of Patients With Valvular
Heart Disease"

http://www.acc.org/clinical/guidelines/valvular/

you can also download the document here as well:
http://www.americanheart.org/presenter.jhtml?identifier=3002114

This is where you need the data from your echo. The above article addresses measurements as well as symptoms, both are important for evaluating progression.

I hope this helps...

 

[Nancy]

Hi Lori-

What you are experiencing is certainly NOT from anxiety. You need a referral to a cardiologist ASAP. You're being treated shamelessly! You have a known heart problem, you're experiencing major symptoms. Passing out is nothing to fool around with. You must be insistent with your doctor and do not ASK for a referral, TELL them you require one. Ask for your records also, including a copy of the echo. You are entitlied to your records.

If you are feeling ANYTHING out of the ordinary from now on, call 911 and get to the ER. I am saying that you should call 911 because you have already passed out and you certainly don't want to be driving when your heart is acting up. If you do go to the ER, make sure you tell everyone that sees you about all of your symptoms. It might be a good thing to write them all down now, and keep a copy in your wallet so you have it for the ER, if necessary. Include dates, who you saw and what they told you.

Insist that you have a cardiologist examine you and tell him/her what your doctor has done or not done for you.

I really can't for the life of me understand why you are having such terrible medical care. It's everybody's nightmare, that they will have a serious problem, and then be told that it's all in their head.

There really are good doctors out there, unfortunately yours are not among them.

 

[bethanne]

Hi Lori -

I also found this article informative as well:
http://circ.ahajournals.org/cgi/content/full/98/18/1949

My understanding is that with a bi-cuspid aortic valve the tendency is for aortic stenosis (narrowing of the valve) to develop and/or aortic regurgitation (back flow from leaky valve), thus the results/measurements on your echo are related to one of the other conditions and guidelines for treatment are based on which of the conditions is present. That is why it is important to have your echo results.

Here again, this is what I have gleaned from reading, etc. I was not understanding why my echo results dealt primarily with systolic and distolic measurements, etc. while some people were refering to valve size etc. ..

If anyone out there can clarify or expand on this...

Thanks, beth

 

[ALCapshaw2]

Lori Sue,

Do you know of a respected Cardiologist in your area?

If so, then I recommend you GO TO HIS OFFICE, tell the receptionist your story, and ASK for an appointment. If they won't give you one without a referal, then ask who they would recommend for getting a referral since your PCP is not cooperating.

Also, IF you have any more serious symptoms such as passing out, GO STRAIGHT to the ER and tell them your story, complete with your history and your family history.

Too many 'Doctors' don't seem to take Heart issues seriously, especially in younger women.

As Nancy says, " Don't Give Up and Don't Give In".
Get the help you NEED.

Good Luck in your quest.

'AL'

 

[catwoman]

Lori:

I agree with Al. If you pass out again, have someone take you to the ER. Getting it on record that you've passed out should carry some weight with a doctor.

I wonder what the PCP would say if a member of his family (or even he) were having your symptoms? Feet swelling -- how could anxiety cause that?

Let us know what a cardio says about your symptoms and echos.

 

[Harpoon]

WHat everyone else is saying. If you're passing out like that you need things to get moving NOW.


The time for prancing around trying to decide if your symptoms are from anxiety or some heart issue is passed. You're fainting because your heart isn't getting enough oxygen to your brain. That can be DEADLY.

Demand to see a doctor who will listen to you, who won't order more tests then turn around and say you're OK. You are NOT OK. Fainting spells like that are not normal.

If the echo didn't show the bicuspid valve it's because the echo tech didn't look for it. Really, that's an issue in and of itself. It's on your diagnosis, that should have been the first thing they looked at in the exam!

First thing they look at when I have an echo is my artificial valve, they hardly even bother looking at anything else in my heart, not even the baffle that was repaired. They do eventually, but the first thing that comes up on the screen is a "foreign object" implanted in my chest. The echo tech wasn't doing their job if the doctors couldn't see the bicuspid valve.

Be forceful. Talk to your PCP and your cardiologist and lay it out. You've got a lot of bad signs and they're either missing it or ignoring it.

You might try contacting another cardiologist "blindly" and just asking some general information. Tell them your history and that you feel like you need to be seen, don't mention the other cardiologist just yet. See what they have to say.

 

[KimC]

Lori, I couldn't agree more with what has already been said. My cardio always asks if I have fainted, an ominous sign.

Re: echos, I've had several and no one but my new cardio recognized my valve defect. I have a four-leaflet valve! I was shocked that no one else had picked it up.

Be assertive with your care -- it's the only life you have and your family (and animals) need you!

Best,

 

[tommy]

Lori,

You are not the first person to report in this forum that the doctor thought the symptom were anxiety. It seldom is.

I fail to understand why your doctor hesitates to refer you to a cardiologist. Stand firm.

If fainting or arythmias come again, call 911 and get to the ER. They have cardios on staff.

PS......If your doctor's echo can't get a clear view of the aortic valve, then what's the point? Sounds like a waste of time and money.

 

[Raverlaw]

Lori,

All i can do here is agree emphatically with the others. You are having very strong symptoms of a stenotic valve and CHF. Go directly to your nearest cardiologist and get an appointment!





Anxiety, my a**!!

 

[Karlynn]

Lori,
Nancy gave good advice. Write down all your symptoms and keep them with you. Next time you pass out or even feel like you're getting close, call 911. This is not something to mess with.

 

[Kathy]

Lori,

Your situation is a difficult one. It sounds like you need a new GP. Hopefully you can get a referral from your current one, but even if you do start asking friends about their doctors. I finally found a new one after I was given very dangerous advice regarding coumadin following surgery. It would have made things much simpler if I had done that before surgery.

It just kills me when doctors try to explain the cause of serious symptoms as anxiety. Even if someone is suffering from anxiety, they need to rule out physical causes FIRST.

 

[Marge]

What worries me is that, independently even of the valve problem, you are reporting CLASSIC symptoms of CHF. I can't believe you are not seeing a cardiologist.

[I thank God every day for my PCP who heard the murmur, sent me for EKG and echo, and then routed me to Cardiology IMMEDIATELY.]

 

[Dee]

Hi Lori,

I'm so sorry to hear about your troubles this week. The last time we talked you said you weren't feeling good.....sounds like it went downhill from there! I can't believe that your Dr. isn't being more helpful, it is unacceptable!! You demand that someone listen to you and get some answers!! I agree totally with everyone else! This is your life that you're talking about and if there's one thing I've learned through my whole ordeal is that you have to be your own advocate, no one else will! I always thought of Dr's as this higher power and never questioned them, but I've sadly learned that you have to stay on top of them and question them all the time! Of course some are worse than others and there are good Dr's out there that are more than willing to listen and be there for you, but it sounds like you don't have a Dr. like that right now and you need to find one ASAP!!! Stand up for yourself and be strong!

Please keep us up to date with everything and I'll be sending positive thoughts your way!!

~DeeDee~

 

[Abbanabba]

Hi Lori,

So sorry to hear what you are going through right now. I would be going to another doctor for a second opinion and a referral. How can you PCP dismiss these symptoms when you clearly have issues with your heart..?!!!

To echo what Kathy said - even if by some wierd and bizarre twist it IS anxiety (..which none of us here believe..), you should definitely be having (obvious) physical problems ruled out first.

Please let us know how you go with this.

All the best to you
Anna : )

 

[delvoura66]

Dear Lori,

If things get any worse please go to emergency, they will have to
let you see a cardiologist. You should not be going through this
it sounds just awful.