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susieq14
March 19th, 2005, 08:22 PM
Hello all!
I've been lurking here for about 2 months and finally decided to take the plunge and join your forum. You all seem to be so knowledgeable and helpful to one another so I'm hoping that you will be able to help me know what to do next.

I’m 54 and was diagnosed with a leaky mitral valve with regurgitation in August 2004.

Let me give you a little history…

I started off January 2004 with a sore throat followed by an ear & eye infection. Three weeks later I woke up one morning, passed out & hyperventilated and scared the living daylights out of my husband who called for an ambulance – turns out I had a sinus and urinary tract infections and was dehydrated. They kept me overnite for observation. Two weeks later I was having unusual chest pains on a Saturday afternoon and hubby took me back to the hospital. EKG was okay, they attributed it more to gastrointestinal distress than cardio and perhaps a reaction to meds I was on.

Saw a new PCP for a physical on July 2, 2004. I expressed concern that my BP had been a little erratic and running higher than normal (154/92, 150/92, 140/86) and I was concerned about my risk for CAD due to family history. PCP gave me referral for a stress test and advised me to track my BP (that day it was 146/84) over the summer and come back in September for follow-up. Stress test went well according to the cardiologist but he suggested I also have an echocardiogram. He was surprised I hadn’t had a stress or echo sooner considering I was at the hospital twice in winter. Anyway I went back for the echo and received the surprise of my life when my PCP called to tell me the echo showed I had MVR that was “Moderate to Severe”.

August 12 I saw a different cardiologist for a cardiac consult. He had a very difficult time hearing any heart murmur but finally detected a small one. He immediately put me on Lisinopril and said I needed to get my BP below 120/90 (that day it was 155/95) and secheduled me for a stress echocardiogram in December. His opinion was that the leak was not there for very long and believes it may have been caused by one of the infections over the winter.

December 6 I had the stress echo which he said went well and he now thinks the leak is more Moderate than Severe. He told me that I will need to see him every 6 months but there is nothing more to do at this point.

After reading all the prior posts I decided to request copies of the two echos but I’m not sure what else to do next. I live in the suburban Boston area. Should I be seeing a specialist at one of the big hospitals in Boston? And if so a cardiologist or a cardiac surgeon? I’m also concerned because my BP is very erratic and is sometimes still high even on the lisinopril. Is that okay? I don’t think I have any symptoms of MVR but I do have asthma and am concerned that I won’t know if I’m short of breath because of the asthma or the MVR.

I’m sorry that this is so long but I thought it would be helpful to give you all the details in order for you to give me some good advice. Thank you in advance! :)

geebee
March 19th, 2005, 09:38 PM
Suzieq,

Welcome to VR.com. You will find a lot of good help and kind words here.

You were smart to request copies of your echo reports. I'm with you, I would do considerably more research on your condition. Any comment that has moderate to severe MVR in one sentence is enough to keep me looking and questioning.

Is there a chance you had rhuematic fever as a child? The description of your illness in 2004 does not necessarily sound severe enough to bring about MVR. It is not impossible you contracted endocarditis during your illness. However, if you have had undiagnosed valve damage for some time, it would make more sense in trying to understand your current problems.

You can go to see a surgeon on your own (unless you have an insurance plan that requires referrals). Seeing a surgeon make ease your mind about your cardio's plan to "wait and watch". However, you will find, from reading posts here, cardios seem to be hesitant to suggest surgery. Most of us feel that surgery should be performed long before some cardios say it should.

I would wait until you get your echo reports and go to see a surgeon. Let his appointment person know you are merely looking for a consult and that you have your echo reports. Talk to him and see what the recommendations are.

Good luck and please keep us posted.

BillCobit
March 19th, 2005, 09:48 PM
Hi Susie -

Mainstream medical opinion is leaning toward earlier intervention in cases of severe MV regurg and heart enlargement, even in absence of regurgitation. Classification of "severe:" vs. "moderate" by views from an echocardiogram are a bit subjective, and subject to difference of opinion between competent docs. In any event, the 6 month checkups sound like the right approach. You don't want to go for long periods without knowing about changes in your condition.

http://www.acc.org/clinical/guidelines/valvular/f6.gif

Yaps
March 20th, 2005, 06:42 AM
http://www.valvereplacement.com/forums/showthread.php?t=10172

susieq14
March 22nd, 2005, 09:00 PM
Thanks Gina, Bill and Yaps! It was really nice of each of you to answer me.
Gina: as far as I know I never had rheumatic fever - my Mom had it when we were kids (well I was 13) but none of us did. Fortunately she didn't have any heart damage from it. The cardio's opinion was that he didn't think it had been there very long so that is why he thought it was a result of one of the infections however, at one point he said to me it doesn't really matter how you got it - now that it is there we just have to deal with it.

Bill: thanks for including thay chart. I will use it once I receive my echo reports. hopefully I can interpret them and perhaps I will return for more expert advice if you don't mind.

Yaps: I appreciate the link to that study. I did follow it when it first appeared on the boards and I did some surfing on the net to find more stories about it. Besides this Board, this study motivated me to get a copy of my echo reports.

Unfortunately I belong to an HMO so I will need to get a referral to see a surgeon. I saw my PCP in September right after my first echo and the consult with the second cardiologist and I asked her if I could see a specialist at one of the big hospitals in Boston. (I live 40 miles west of the city.) She said that I should wait until December after I had my stress/echo with this cardio and then we could talk about it. So that's another reason I wanted to get my reports and some information under my belt. Unfortunately I had another health issue come up at the end of the year that distracted me from following up. Fortunately that was resolved with a happy ending (I had a benign lump removed from my breast) so now I'm going to concentrate on my valve problem. My next appointment is May 12 with the cardiologist although i'm not scheduled for another echo just an office visit. Should I be having an eccho every 6 months as well?

thanks again for your help!

Susie

geebee
March 22nd, 2005, 09:06 PM
The best thing to do is get your echo reports and post the measurements here. Although I have to plead ignorant on what the measurements mean (just have never taken the time to learn), there are many, many members who can give you guidance if they know the numbers.

After that you can go back to your doctors armed with the information from the most knowledgable valve folks in the world - VR.com members.

Also - gotta love those HMOs. Heaven forbid we should be able to think for ourselves.

One of the things you will learn here is how to "fight" with the doctors to get the best health care you deserve.

bvdr
March 22nd, 2005, 09:30 PM
Hi Susie and welcome to this forum. I just have a couple of thoughts to add to what has already been mentioned. There are many of us here who were diagnosed and treated for asthma before knowing about having valve problems. I sometimes had wheezing but was never diagnosed as having asthma. We have found it interesting that when the valve problem was corrected then somehow the asthma just sort of faded away. I don't know if there is any proof of correlation but it has just come up often enough around here to make one wonder.

The other thought I had was that valve disease sometimes makes itself known while a patient is fighting some other kind of acute illness such as flu, bronchitis, or other infections. Our bodies do a wonderful job of compensating for our weaknesses and everything may go along fine until suddenly subjected to a greater degree of stress and the lack of reserve and the inability to bounce back point the finger to some underlying problem.....in this case, valvular dysfunction. So, I think it is a real possibility that the valve problem was already there but undetected until you got sick. Just my thoughts.