Finally went to Dr....very frustrating visit

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M

Maureen

Some of you might remember I had a bad visit with new Cardio last August. I have MVP with Regurg and have problems with SOB climbing stairs, carry shopping, exercise etc. His answer....He prescribed 6 months in the gym! Anyway I went to see my GP today and now I'm more confused than ever. He says that my symptoms can be "cured" with a pacemaker ( various holter monitors over the years show slow heart rate at rest/sleep, typically in the 40's or 50's). He doesn't seem to think that I need to worry about the mitral valve. I have to go for the usual blood tests, thyroid function, anemia etc and then phone him for the results. He hasn't mentioned sending me to another Cardio...just kept nodding and saying "yep, I think you're going to end up with a pacemaker".

My question is....is it possible that my symptoms are down to slow heart rate? Will a pacemaker "cure me" so I can get up the stairs without being out of breath?

Apparently the last Cardio said in his letter to GP that the MVP was Mild and the Regurg was Mild (haven't got any numbers). I know some members have had severely leaking valves with little or no symptoms but has anyone had symptoms that really interfered with daily life while their echos showed "mild" leakage?

I know it may seem trivial...but it was a really big deal for me to go back to the Dr today and now I feel so confused:confused: I would be greatful for any help or advice. Thank You.
 
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Hi Maureen and Im very sorry to hear that things are not going real well for you regarding the docs. This is MY experience (briefly) and since I not only was lied to but fired as the patient I can relate to your frustration, anger, fear etc. I was told long ago I had mvp with reguritation. "Oh no prob...just take meds before dental work and get on with your life" the doc says. I KNEW something was wrong a long time ago! Fast forward to 2000 when I was told by the nurse at my GP that she could hear a loud click in my heart and sent me (stat) to have an echo. All the while being uninsured. $2,000 later I recieved one sheet of paper stating that my mvp was mild and once again get on with things. From there it just got worse. I had heart attack like symptoms AT LEAST 10 times amongst other things, and was taken to the emergency room just to be given adivan EVERY SINGLE TIME and told Im having anxiety attacks and to see my psyciatrist about this. Okay well I was already being treated for this so Im already convinced they are wrong!!!! My psyciatrist is the ONE person who continually re assured me I wasnt crazy and this was NOT anxiety!!! Okay Im trying to stay brief:D
I finally went to see a cardiologist in 2005 and he was so nice and helpful on the first visit and said he believed me and would get to the bottom of this one way or another. I was so happy and had waited my whole life to hear those words. I wore a king of hearts monitor for a month and recorded all the irregular heart beats and rode it out not knowing if I was going to live or die but knew the E.R. wasnt an option since I had no insurance and didnt need a shot of adivan. Went back to this cardiologist with the monitor and told him I had tried for 3 weeks to no avail to get insurance (he advised me to get some insurance on our first visit as the test we were going to have to have were expensive$$$) since now im classified as a pre-existing heart person and no one will insure me. HE THEN TOLD ME I WAS FINE AND THAT WAS THAT. He said I had some sinus tachacardia and other than that I was fine. This time I argued back and wanted to know why on the first visit he was willing to help and now he is telling me I and I quote "I see how you are Mrs. Irwin and it seems you dont trust doctors so I suggest its best that I dont treat you and if you want a second opinion than by all means seek one" WHAT WHAT WHAT?????? did he say??? Im still in shock! Okay so I went to another doctor and within 50 days was having OHS. I had a MVR w/ a maze procedure and the surgeon told me I was a miracle for not having died sooner. Here I now sit with a fix heart and a broken head. Good luck and I will say a million prayers for you as I hope NO ONE has to go through this kind of nightmare. Sorry I tried to keep it short:eek:
 
Maureen, it's possible that it could be a rate issue. What is your heart rate during the day and during exercise? Do you have arrhytmia issues as well? (That's pretty common with MVP.)

I think it's a good thing that all avenues be explored. If a pacemaker solves your problems I think that's much more desireable than valve replacement. Just make sure that they know for sure.

Have them do another echo while they're doing all the testing for pace issues.
 
I can only relate my husband's problems prior to getting a pacemaker. He was fainting, and had spells of extreme shortness of breath. Mild regurg. USUALLY doesn't mean immediate surgery, but only a cardiologist will be able to tell you about both the pacemaker and IF you are in need of surgery or whether surgery is a watch and wait thing.

I think you should push the issue of getting a cardiologist you can relate to and work with. A GP is for general things, a cardiologist is for heart things. Each knows a little about the other's field, but they both specialize in different areas of medicine.

So you should be going to the specialty that is for the right condition.

Be forceful with this and get in to see a card with whom you can talk.
 
Maureen - does Ireland have a National Health Service? Sorry I don't know this, but I just assumed you do. So insurability isn't the issue here. I presume the issue is that you can't get to a cardio without the referral?

I don't know about pacemakers (thank God); but if you get to a cardio to consult about the pacemaker (preferably NOT the same one as you went to last time), you can probably extend your visit to include more testing for your mitral valve (like an echo, at least).

As I've said before, it's crucial that you don't give up on this - you need to be persistent and, if necessary, obnoxious enough that they understand that you won't be shrugged off. If you only need a pacemaker, hallelujah!
 
I had regurgitation that looked mild/moderatre under a regular echo. However, my Cardiologist had me do a TEE when I explained my symptoms. The TEE showed, and the following Angiogram confirmed, that my regurgitation was severe. Apparently, some people's lungs (mine, for one) can REALLY interfere with a standard echo. If your symptoms are bad, I would try to get the next level of testing.

I'm just regurgitating a bit that I read from WebMD here: "Some people have severe regurgitation with almost no symptoms, and others have very mild regurgitation with severe symptoms."
 
Thank you....

Thank you....

:) Thank You to everyone for replying :)

Imhayley: I'm so sorry you had to go through all that but thankfully you finally found a cardio that you can trust. I hope all goes well for you.

Karlynn: The only info I have on heart rates are from a 24 hr holter monitor about 2 years ago ( My GP asked me to take them to the Cardio, so I copied them...that's how hard it is to get copies of test results around here :rolleyes: ). The average heart rate during the day is around 70 ( while I was at my office job, usual stuff, actually tried to be more active to see what effect it would have on monitor!) While sitting in front of TV, it averages 60 or lower depending on how long I sit still. During sleep the average is about 40. During a stress test 2 years ago the nurse commented that I must be very fit as I'd been on the treadmill for ages and my HR wouldn't go past 121. I did notice when I used to go to the gym that even 2 mins on the exercise bike and my HR would shoot up to 150! I also noticed that it seems to come down quite quickly when I stop. It may sound strange but I can walk for miles (on the flat) and it is only when I stop that I have a problem. I think that when my HR is elevated the regurg is obviously worse as with each heart beat there is a little back flow but when I stop, my HR drops quite quickly and maybe the slower heart can't clear the back flow. Does that make sense to anyone?

Mikeheim: It was very interesting to hear your experience. I had a TEE about 10 years ago. At the time the Cardio said there was a definite leak, no info on numbers/levels. I had an angiogram in Oct 04 but Cardio seemed only interested in blockages, thankfully I didn't have any and he never mentioned mitral regurg! I didn't even know then that regurg could be measured by angio!

I had my blood tests done this morning so I'll have to wait another week before I talk to GP. Thank you all again for your replies....I'll keep you posted:)
 
This lack of progress must be most frustrating, I remember your post last year from the cardio suggesting do more work at the gym and don't worry about the light headed spells, at the time I was astounded that a cardio would make such a comment. :mad: Were you having the same symptoms 2 years ago when you had the holter monitor and the stress test, if not then your condition may have changed in the intervening 2 years that is why cardios usually put even stable patients on a 12 month review schedule. As for the TEE 10 years ago that is now no more than a reference document that current tests can be base lined against. You need some up to date tests that are a more comprehensive than a blood test. As for the regurg the heart in the first instance will attempt to speed up to compensate for the leakage, this increased work rate is what causes heart enlargement with valve patients over time. This eventually leads to CHF. :eek: If I were you I would be pestering the GP or Cardio for a more comprehensive testing and investigation. I look forward to your update. :)
 
HR's that spike quickly on exercise and then come back down quickly when stopped is typical MVP symptoms. Make sure they don't discount your MVP when doing all this testing. If you feel they are too casually dismissing it, get 2nd opinions.
 
Maureen,

I should think you'll need to see a cardio AND surgeon BEFORE getting a pacemaker fitted anyway, so why your GP is making this diagnosis I can't imagine!

As everyone's already said, you need some up to date tests to see what your heart's condition is now, rather than basing decisions on 2- or even 10-year old information. At the very least you should be getting an ECG and an echo, and probably at least a 24-hour holter monitor too.

If the cardio you saw last year continues to brush your symptoms off, ask your GP for a referral to a different one.

Good luck!

Gemma.
 
How's that saying on here go? "The worse you get, the faster you get worse"? Two years is a lifetime for a deteriorating mitral valve.

Keep pushing for answers, Maureen. And you need a new echo and whatever it takes to get your answers.
 
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