Just got back from Cardiologist Appt.

[Maureen]

Firstly, I wish to say "Thank You" to everyone for their good wishes and advice. I met with the Cardiologist today and as I suspected, the result of the Carotid Artery Massage was clear! He did confirm that I have MVP with mild regurg. He said I should have an echo every 5 years to keep an eye on it. However, he also said that he couldn't find any clinical reason for my symptoms (short of breath, weak, faintness, blue lips/fingernails.) and that if I was finding exercise difficult that I should ....wait for it...exercise more. I should say at this point that I have always been quite active, a gym user who had to give up going because I felt so bad after using the exercise bike/threadmill. I am 5ft 4 and weigh about 136lbs...so not exactly overweight!

So there we have it...he has "prescribed" a six month session in the gym. He says if I feel faint at the gym, lie down but go back again the next day and push harder. Apparently in 6 months time, I'll feel like a new woman, but obviously if I feel worse in six months, I can go back to him!!!

I mentioned that the gym staff won't be too pleased to see me fainting in their gym...which has happened before so he gave me a letter to show to the gym explaining that I need to exercise.

I am so mad, frustrated, annoyed etc etc...but what can I do. I have seen 2 cardiologists in the last year and this is where I am! I feel that all I can do is take him at his word, join the gym and push myself harder....and just hope that nothing awful happens!

Regards,

Maureen.

 

[Yaps]

(short of breath, weak, faintness, blue lips/fingernails.)


I can see where you would be concerned, the blue/lips/fingernails concerns me.
Has the dr ever seen this? You have a lack of oxygen when this occurs.
Has he put you on any medications?
I hope you feel better soon, I know how it can be.
Love the pup

 

[Teresa UK]

Maureen, when he says he "cannot find" a clinical reason for the way you feel, the first things to spring to my mind are - isn't MVP/regurg enough of a reason? I genuinely don't know, so a good question to ask everyone here is whether other MVP people here get these same sypmtoms? If they do, then there's your "clinical reason", surely. Are any other MVP people here told to exercise and push themselves more? If not, then your doc should carry on looking for other reasons for those symptoms. He seems to be saying that you're just unfit?! I know exactly what it's like to cut through that NHS fog screen they put up, but you're clearly not happy with your visit to the cardio. Why don't you talk to your GP and let him/her know how frustrated you feel, and ask what you can do to take it further.

 

[Karlynn]

Maureen, I went through 4 doctors before I found one that was committed to helping me out, rather than looking at tests and going "Well, it looks okay."

If you were physically active (working out, exercising etc) prior to your symptoms then I'm not quite sure why he thinks that it's a lack of exercise that's causing your symptoms. I think his suggestions sound crazy - if you feel faint, lay down, but go back the next day and push harder. What doctor says that??? Your symptoms sound like classic MVP symptoms. You said he confirmed MVP w/ Mild Regurg - what test did he use to confirm it? Was it the TEE you had done.

Someone with MVP and symptoms should never be told to get another echo in 5 years. Valves can change quickly. We've had people who have been told their mild regurg could go on forever and end up having surgery 6 months later. An echo every couple of years is a good idea, if not yearly. Frankly, I think he's looking at your age, your mild regurg and dismissing you as a hypochondriac because he has that attitude that most people with MVP don't have problems with it. I've had those kind of doctors and they infuriate me. I was half expecting to read that the doctor wanted to prescribe Valium. That's another huge sign that they are writing you off.

I think you should get copies of all your tests done w/in the last 5 years. Legally they have to give you copies, but may charge you a small fee for the copying.

Just because you've been to 2 cardiologists doesn't mean they are right and you are wrong. As I said, I had 4 doctors before I found one that took me seriously. 3 years after I saw my last hack, I had valve replacment surgery for a valve that was "almost gone".

Don't give up in your quest to feel better.

 

[Mary]

Karlynn,
Do we know that Ireland requires disclosure of medical records? I think I've read posts from English members who said that they can't get theirs.
Can someone chime in with the answer?

It will be hard tfor Maureen to get any help if they don't have laws that permit disclosure of records to the patients.

 

[Karlynn]

Oops, I missed the Ireland part.

 

[ShezaGirlie]

http://www.oasis.gov.ie/health/access_to_medical_records.html

--or--

http://www.oasis.gov.ie/health/access_to_medical_records.html.ga

Beautiful language you've got there Maureen...goodluck!

 

[Yaps]

Oops, I missed the Ireland part.

Me too..oops

 

[Nancy]

Maureen-

Something here doesn't sound right at all. There are REASONS for your symptoms. You need to get copies of your echoes and post what it says, if you can.

Was there any mention of pulmonary pressure problems or mention of something like pulmonary hypertension? That can cause a bluish cast to the fingers and lips, shortness of breath especially with exertion and fainting too.

But so can low oxygen levels and a few other heart problems. Have you had a pulmonary workup?

And fainting could be a heart rhythm disorder too.

Your doctor would be one Joe would fire here. He sounds uncaring and not at all interested in finding out what the problem is. He'd be such history, the wind would whistle his britches.

I cannot imagine a reputable doctor telling someone with fingers turning blue and short of breath and fainting to push themselves to the limit without an adequate diagnosis.

There must be larger cardiology centers in Ireland. Why don't you see if you can set up a future appointment at a big center with the best cardiologist you can, possibly in a couple of months.

And try to get copies of your echoes.

 

[terryj]

My grandson has asthma and acid reflux. His mouth and toes turn blue when he has an attack and his oxygen levels have gone as low as 85. We were told not to let him exert himself too much or even cry for too long. Overexerting yourself with exercise does not sound like a good thing for you.
Maybe checking with another doctor would be what you need to do.

 

[strawberry]

I have a myxomatous mitral valve with just slight prolapse and no regurg and I go yearly for check ups with an echo every other year. I have mild AI and TR too though. I too have symptoms I'm told are not related to this: ankle edema that amounted to 8 pounds before starting a diuretic. I think you should get another opinion. BTW I'm 100% Irish American and I love your name!

 

[gadgetman]

Maureen,

If you have searched past threads you have probably come to the conclusion that everyone is different. However, I find it very very strange that a Cardio would recommend MORE EXERCISE, especially with your symtoms. I too suffered from shortness of breath and low energy (no blue lips/nails) but it would come a go. The Cardio explained it as when you take your car to the repair shop to have a problem fixed the car WILL NOT misbehave while you are there. He said on my good days everything was working like it should.
Back when my heart troubles began, my Cardio wanted me to exercise but to limit my exertion. He limited me to 120 BPM max. And he warned me that if I experienced shortness of breath or dizziness to immediately stop and contact his office.

I'm not sure how your medical system works in Ireland. But as several have suggested, it may be time to find a doctor that will treat the problems you are having. Shortness of breath, blue lips/nails and fainting in the gym are NOT NORMAL. Hopefully someone will find (and fix) the cause.

Good Luck and,

May God Bless,

Danny

 

[Maureen]

Further to my appt today.

Further to my appt today.

Hi all, thanks again for your kind words. To Karlynn, you hit the nail on the head with your comment on valium! I had forgotten to mention that on my first visit to this cardiologist 2 months ago, I was only in the room 5 minutes when he suggested the valium. No other Doctor had ever mentioned that to me before and to be honest, I was so shell shocked at the suggestion that "it was all in my head" and that he labelled me, "over anxious" that I totally froze and didn't ask anything, not even about the MVP !!!!

Also, when he finally acknowledged today that I have MVP with mild regurg, he actualy suggested an echo every 3 years. When I sarcastically said "well I suppose since I've had this for 18 years now and I'm still here"...he said, "oh in that case, an echo every 5 years is all you need".

To Nancy, I have had a pulmonary function test and VQ scan of lungs late last year and they were clear. To be honest, I've never thought that I have lung problems but at least I can cross that one off the list.

I should also mention that over the last 18 months I have had numerous 24 hour blood pressure monitors and heart monitors..one that lasted 5 days. The results showed that I have slightly raised BP. Lowest seems to be 140/90. All Dr's seem to think that I don't need meds for it. Also my heart rate dips when I am sleeping or even just sitting quietly. Normal rate seems to be about 70 but dips to the low 40's at rest. Again, the Dr's don't think there's cause to worry about it.

My own GP had mentioned the possibility of getting my test results together and sending them to a heart surgeon to see what his opinion would be but we decided to wait until I had seen the cardiologist today. So I suppose my next step is to go back to him and set the wheels in motion!

I have checked out the possibility of getting copies of my own tests but would you believe that because I have had all of my tests in private hospitals and I have paid to see the cardiologists privately (otherwise the waiting time to see one is about a year..even going private can take months) I am not entitled to my own records! If I had been a public patient I would be...that's the beauty of the Irish Legal system.

Unfortunately, Ireland is a small place and although I live in a town with a very large training hospital, to see a cardiologist I have to go to the capital, Dublin. There are only maybe 15/20 cardiologists and so the pool is very small. They all know each other (and probably belong to the same golf club). I was referred to the current one for a 2nd opinion as the previous guy was so rude. To be honest, I felt from the minute I went in the door, this guy didn't want to know me because I had already been to someone else.

Thank you again for your support. When I came home today my immediate reaction was to go sign up with the gym and exercise like crazy til I passed out..thinking that maybe then someone would take me seriously...but after reading your replies, I see that it would be madness. I only have one chance at life and there's no point ending up in an early grave, just so I can have "I told you I was sick" on my headstone!. Mind you, if anything does happen, I will be sure to come back and haunt that cardiologist!

Please forgive my attempts at humour...I know some of you have been through a really tough time and have had it way worse than me, but my motto is " you have to laugh, other wise you'll cry".

No doubt it'll take a while to get anything via my GP ...but I'll let you know when I hear anything.

Regards,

Maureen.

 

[BillCobit]

Maureen -

Have you seen discussions of mitral valve prolapse syndrome? Wondering if that would explain your symptoms.

http://www.nursing.wright.edu/practice/mvp/default.htm

Many people with MVPS believe the more symptoms they have, the more severe is the prolapse buckling back of the valve. This is not the case. In the mitral valve prolapse syndrome, there is no correlation between the degree of prolapse and the severity of the symptoms.

 

[ALCapshaw2]

Yep, it sure sounds like you are getting the 'runaround'. Have you asked your previous doctors / hospitals if they would be 'willing' to give you copies of your test results even though there is no legal requirement that they do so?

Given the 'country club' mentality of the small group of Cardiologists, I would take your GP up on his offer to refer you to a SURGEON. Surgeon's seem to take valve issues more seriously and definitely prefer to 'fix the problem' before there is permanent damage.

BTW, I'm not sure about mitral valve problems, but for symptomatic aortic valve problems, exercise is NOT recommended. Let's hold off on the tombstone for a while!

Best wishes,

'AL Capshaw'

 

[OldManEmu]

Maureen
If I am reading your post correctly his course of action is to get you to the gym, exercise and faint. Hopefully if you go often enough the time between fainting will get longer!
Then tell you to take valium because it is all in your head.
This cardiologist is unbelievable.
I would certainly take your GP up on the offer of being referred to a surgeon because you are not going to get a proper investigation from a cardiologist that has that type of attitude.
I am not sure what the various health arrangements are between different EU member states so is it an option to see a cardiologist in the UK?
As far as access to your records goes it is the same situation in Australia private patient records are the property of the doctor and they are under no obligation to release them to you. You can ask though.
If you are a public (NHS) patient you can access you patient records.

 

[Georgia]

Maureen, it's quite a common theme at this site that many doctors choose to treat women's symptoms as primarily psychological. They don't give much credence to our ability to distinguish between physical problems and "hysteria". Hm-m-m. It appears that the med school course in Women Are Very Seldom Really Ill is international.

BTW - it's just the oddest thing that you're not entitled to your "private" medical records but the NHS records are available. Guess every country has its quirks.

 

[Gemma]

Maureen,

I'd go back to your GP and ask for a referral to a surgeon. It sounds like you're getting nowhere fast with that cardio.

I wasn't aware you couldn't get private reports. Jim has never asked for copies of his (NHS) reports (as post-op they were all fine and we were told all the results we asked about, and pre-op he progressed pretty rapidly to needing surgery, we didn't see any real need) but in your case I'd ask your GP to assist you in getting them all together, and head off to a surgeon to see what he/she thinks. Surgeons often have a better idea of when certain results indicate the need for surgery, as they will have seen valves in all stages of decline during their career and the subsequent recovery of their patients.

You're lucky that at least your GP is prepared to get to the bottom of your symptoms, so I suppose the best option is to go back to him and try to avoid that group of cardiologists if at all possible.

Gemma.

 

[TjCarpenter]

Brought my car to the mechanic because it was stalling and had no pep... He said I should take it to the Indy 500 next week and push it harder... Any thoughts?

Yes... you need a new mechanic.

 

[twinmaker]

Maureen, one thing that you mentioned was a heart rate in the 40's while you're at rest. Unless you're a marathon runner or someone like Lance Armstrong, that seems way too low. I think most people that have that low of a rate have to have a pacemaker put in. A low heart rate would also cause symtoms of fainting. Just a thought. Linda