BAV just diagnosed at age 20, unhelpful doctor

[smile124x]

Hello everyone, I am a 20 year old female in the UK, I'll just give you a little info on how I came to be diagnosed.
In general I like to stay healty, running/horse riding/gym/scuba diving etc but over the past 2 months or so I was getting very short of breath while undertaking these activities and starting to get chest pain, racing heart, palpitations etc, so I asked a doctor at work (I work at the hospital) what he thought, and he took all bloods and urine sample, all came back normal, so he did an ECG and said he wouldand put me on a telemetry while I was at work and then told me to go home (I had chest pain at this point which he knew about), the ecg suggested enlarged left atrial and left ventricle, a chest x-ray also showed enlargement. After I had worn the telemetry I gave the rhythym strip to another doctor as the original one had gone home, she said my heart was running around 120bpm all the time occasionally going up to 150bpm, she said the heart waves were irregular so went to consult a cardiologist he asked for a repeat ecg and bloods, again bloods were normal but the ecg said the same thing. So she ordered an echocardiogram, I waited a week to have the echo, the lady who did the echo told me I had Aortic, Mitral, and Tricuspid regurgitation the aortic being caused by BAV, and that the ventricle and atrial were indeed enlarged and she would send the report to the doctor (the first one I saw), I then went onto nights at work so havn't been able to see him, he rang me up and confirmed to regurgiations and enlargement and told me not to worry and that he would refer me to a cardiologist for a proper appointment. I asked him what I should do for the chest pain and whether the shortness of breath is most likely connected to the heart findings. He said 'your chest pain is nothing to do with your heart, and the shortness of breath is probably because you're unfit or something' I said it couldn't be that because I go to the gym alot and am physically active (well I was until the breathlessness and chest pain started, I physically can't do anything because even a shower brings on the breathlessness!), so I said I would stop any physical exertion and what should I do about the chest pain, when I get it it's so bad that I need to sit/lie down for a while because I also feel faint. He said 'well do that, just lie down, and wait for your cardiology appointment' and hung up!! I can't lie down at work can I when the pains are bad!
Sorry for the long post but I wanted you guys to know the whole story. So what can i expect at my cardiology appointment, I am going to stress to him that my symptoms are affecting my daily life. My appointment is on the 18th December.
Also what do you think about the doctor?
Thank you so much guys - Danielle x

 

[Freddie]

Hi Danielle and welcome.
Not sure how things work in England, but may I suggest that the next time you have SOB (shortness of Breath) and chest pain get to the ER ASAP. The doctors who are working might be able to speed up the true diagnosis and get an echo done sooner than waiting for the 18th just to see a cardio.

Good luck and keep us informed.

 

[Paleowoman]

Hi Danielle,

I'm from the UK too. I must say I am very surprised by your doctors at the hospital. Have you seen your GP about this ? Tell him what's been happening - reports should have been sent to him, but from what you say your treatment doesn't sound very joined up. Tell him how this is affecting your daily life, the pain and breathlessness, and that you're not seeing a cardiologist until 15th December. I should think your GP should sign you off sick imho.

I'm under a cardiologist for my bicuspid aortic valve and both he and my GP have told me to go to A&E if ever I get chest pains or symptoms as you are describing.

Anne

 

[smile124x]

Hey, well I originally did go to the gp who listened to my heart and took my pulse (which was around 120bpm) he said maybe youre just anxious about something, I told him it couldn't be that because I didn't have anything to be nervous about. He asked when does the chest pain come on or the palpitations, sob or anything, I told him that it can come on at any time, I can be in bed and I'll get it! He said to put my mind at rest he would do an ecg and bloods and that I was to book myself in for these, when I went to get booked in the next available appointment was over 2 weeks wait!
That's when I went to see the doctor at work.
I feel like nobody is taking me seriously, everytime I see a doctor it's as if they think im making it up, maybe it's because I am young?

Don't think any reports from the hospital have gone to the gp, I'll call in tomorrow on my day off and update them maybe?
Thanks guys - Danielle x

 

[Paleowoman]

Don't think any reports from the hospital have gone to the gp, I'll call in tomorrow on my day off and update them maybe?

Hi Danielle,

All reports have to go to your GP - and copies should be sent to you if you request it - that is a legal thing in the NHS.

I'm surprised your GP couldn't hear a heart murmur since you say the echo lady told you that you have "Aortic, Mitral, and Tricuspid regurgitation the aortic being caused by BAV" ! My bicuspid aortic valve has been heard since I was in my 20's by every doctor that's put a stethoscope to my chest.

The thing about chest pain and shortness of breath though is that it can be benign in young people - I used to get something call Precordial Catch Syndrome as a child and until my late 20's - this causes such severe chest pain that you can't breathe properly for what seems forever but which is probably about a minute - it can be confused with a heart attack but it is completely harmless. However, if you have bicuspid aortic valve that will give a murmur and that should have warned your doctor that there was something amiss.

Good idea to update your GP, tell him exactly what the echo said and that x-rays showed your heart enlarged and tell him again of the chest pains....get a sick note. Or go to A&E.

Anne

 

[Lynlw]

From what it sounds like and i might be reading it wrong, most of the doctors, except GP, are NOT doctors you've made appt with went to their office and filled out forms etc, but are docs you stopped at work and asked them to check you out more or less as a favor. If thats what has happened, first that was nice of them, but chances are they didnt write up reports and things since you never really were their "patient' and probably didnt fill out the forms where to send things etc. It probably saved you alot of time by not having to wait to get appts then referals, but im not sure of the time frame since your echo or if it is the normal time frame to get tests to docotors, since they usually wait until they look at it and write up the report. I used to work in hospitals and often had docs check something out, order xrays etc but since they were never official appts there never were reports (or of course bills) , it just saved time so I already had the test when i did do to my appt. and helped decide what kind of docotr i needed to go to.

I guess if you start getting SOB at work, since you work at a hospital, I wouldnt worry about finding a place to lay down, i would get myself to the ER (or is is A&E) in the hospital.

 

[smile124x]

Hello. both doctors I spoke to at work were consultants, I work on the Acute admissions unit, sort of an overspill from A&E when they have breached on there they come to us.
You're probably right about there being no official reports, I myself have never seen my echo report or anything else but just been told about it by the doctor on the phone. I will call into the gp tomorrow to update him on everything I have found out.
I will go to A&E if the pains come on again, hopefully they will be nothing serious, I just can't understand why the doctor told me that they were nothing to do with my heart. At first the consultant suspected supraventricular tachycardia as the cause of the palpitations, but I've never heard this mentioned since the echo findings. There is also no known history of heart problems in the family.

Danielle x

 

[Bill B]

You need this sorted out by the proper specialists. Your doctor friends at work MIGHT be right, but you are not getting any coordinated care or clear answers by relying on them.

Here might be why there is a lot of confusion:

You have chest pain and SOB, somewhat unpredictably
You have enlarged left ventricle and atrium, BAV and valve regurgitation
You have resting tachycardia - the echo does not help to diagnose that, but the EKG should have.

Doctors so far say it's not your heart - that COULD be because your EKG shows no signs of ischemia or other issues that might indicate the pain could be heart-related. Also, your A/V enlargement and other anomalies on echo may not be very advanced. That might explain why no one has mentioned finding a significant murmur (or did they?). Who knows?

GET THEE TO A CARDIOLOGIST NOW or as soon as possible.

If you have chest pain, go to the ER and get an EKG. If they say it's not your heart, have them explain why they are saying that. It may be as I outlined or there may be another explanation.

 

[Greg a]

Hello. both doctors I spoke to at work were consultants, I work on the Acute admissions unit, sort of an overspill from A&E when they have breached on there they come to us.
You're probably right about there being no official reports, I myself have never seen my echo report or anything else but just been told about it by the doctor on the phone. I will call into the gp tomorrow to update him on everything I have found out.
I will go to A&E if the pains come on again, hopefully they will be nothing serious, I just can't understand why the doctor told me that they were nothing to do with my heart. At first the consultant suspected supraventricular tachycardia as the cause of the palpitations, but I've never heard this mentioned since the echo findings. There is also no known history of heart problems in the family.

Danielle x

It is my understanding that NHS is similar to to our health care and should work along the same lines. My GP is the one constant in the process and gets a report from EVERY specialist I see and if he is missing one he is on the phone to that office. There was even an incident that one cardiologist was not doing what he asked and the next day I had a new Cardiologist who is better than I could ever hope for. As the team "coach" he gets reports every three months from my nephrologist, my endocronologist, and my cardiologist. He also gets annual reports from my optomitrist, pedometrist and dentist. Every clinic visit generatesa report to him (diabetic clinic, Renal failure clinic, heart function clinic and implant clinic) he is also copied on reports generated by my ICD through my night table wireless monitor. Visit you GP and help him/her understand your expectations of him/her.