Introducing Myself...

[sonavogel]

Hello, everyone~

I was fortunate enough to find this forum today, after some eye-opening news received yesterday.

I am a 56-year-old female residing in NYC, and I'm in what I've always thought was pretty good health--4X/week exercise, jogging and weight lifting, 5 feet 2 inches, 103 pounds, no particularly problematic health problems other than some mild thyroid hormone resistance that is treated with Armour thyroid and a small dose of Cytomel.

My endocrinologist asked me to have an echocardiogram, which my PCP authorized. I took it (my first) last month, and the results--faxed to me yesterday--indicate that I have "mild aortic insufficiency." (LV ejection fraction is 65%). My blood pressure is consistently perfect (around 110-120/70ish). No meds for that. No statin meds, etc.

This was a blow. I can't say that I'm asymptomatic--I have always required at least 9 hours of sleep/night; I certainly am not a ball of fire 18 hours a day. But I have no problems with my jogging or lifting or climbing stairs. I am not finding my lifestyle restricted, although yesterday--after I read the fax--I certainly suffered from every single one of the potential symptoms, I can say that! But I suspect that I'm not as strong as I used to be, nor do I have the endurance I used to have. I always thought that was to be expected, but now I wonder if it's the onset of symptoms.

Anyway, my PCP is away this week, so we haven't discussed this finding. I expect that she will want to, however. And in advance of her discussion, I have been doing some research, which is how I came by this forum.

I have already reviewed the US News report about the Cleveland Clinic, and noticed that NY Presybterian is the only NYC hospital rated up there for cardiology and thoracic/cardio surgery.

I figure that I will have to begin a relationship with a cardiologist to monitor my condition until such time as a valve repair or replacement will be called for, and I might as well find a team rated among the best. I don't think traveling to Cleveland would be the smartest thing to do.

This is my introduction to everyone--but it's also a plea for any referral information to professionals in the NYC area who might be best bets for me. NY Presbyterian Columbia has been helpful to me already; this morning, I was given the name of Dr. Christopher Irobunda as a cardiologist, with his associate Dr. Steven Wolff as the imaging cardiologist; they are part of Dr. Moses' thoracic/cardio surgery group.

Has any ever heard of these men? I cannot get ratings on them, although since they're part of the hospital, I can hope that they are well qualified for my purposes. If anyone has any NYC recommendations, I would value advice and input now, while I have time to review, research, and explore options.

Thank you in advance for you concern and attention to a newcomer who is not yet overwhelmed, but has an awful lot to learn.

Best, sona

 

[Ross]

Sona welcome to the club. Mild may stay that way for years, so don't get too uptight about it. Monitoring with echos every year would be a good plan of action. Yes, eventually it will have to be dealt with, but lets hope that isn't for a long time down the road.

I cannot say that I've heard those names before, but I'm sure someone will be along with some ideas for you.

 

[WayneGM]

Welcome to the VR Community, Sonia. Sorry for the circumstances but glad you found us. I was over 50 and was in what I thought was good health when I was given the news I needed OHS, so can relate to how eye opening that can be.

I can't help you with professionals in the NYC area but hopefully others will come by shortly with suggestions.

Best wishes to you.

 

[Bina]

Hi sona,
Welcome to the group, it's a wealth of information and good people
I would imagine that you are years away from surgery, all I can recommend is to stick with a cardio who you are comfortable with and have regular checkups and testing.

 

[Cooker]

Hi Sona,

Welcome to vr.com!! This is a great place to gather information and support. A great goup of people.

Again, welcome

Cooker

 

[Phyllis]

Welcome, Sona. Mild is the opertive word and hopefully you have a long time in the waiting room and lots of time to do all your research. I did a search for NY Presbyterian and there is a member who was recently operated on there: http://valvereplacement.com/forums/showthread.php?t=21505&highlight=York+Presbyterian
If you put in New York Presbyterian, you will come up with many more threads to search. There are also many members who have been operated on in New York and I am sure they will chime in soon.
Best wishes,
Phyllis

 

[Tom F.]

Mild aortic insufficiency is not a big deal. I have been told that as we age most of us develop some degree of it. But the reason why you have it may be a big deal. If you have any degree of aortic aneurysm, or if you have a bicuspid valve, then there is an increased risk of surgery in your future. Do you know whether either condition is present?

 

[tprice54]

Welcome

Welcome

I'm sure you will get lots of positive responses welcoming you...this is a great site. As others have said, you may have a ways to go, so don't get worried. You can check surgeons and hospitals for NYS at:
http://www.health.state.ny.us/diseases/cardiovascular/heart_disease/docs/cabg_2002-2004.pdf

 

[sonavogel]

Oh, my goodness, how warm you all are! Thank you so much for your caring replies--they soothe me, and they also bolster me, I think. And that means so much to me.

I will do a search under New York Presbyterian and see how many threads come up with it. And I've just reviewed the link you provided, Phyllis, and I will be following Lorraine's progress with interest--she's going in tomorrow, it seems.

The only question I see asked of me is from Tom F. Tom, since I haven't had any extensive tests done, I cannot say with certainty that I don't have an aneuryism, but I'm fairly sure I don't have a bicuspid valve. Perhaps the Cytomel (T3) over the past 18 months has had an impact...? But I cannot know that, either, especially since I have no earlier records (other than normal physical EKGs) to indicate the state of my heart valve.

Genetically, I may have some predisposition to heart issues. My father had to have a mitral valve replaced at age 80 (a murmur had been evidenced for years before, but Dad was never much of an exerciser, so being out of breath was not noticeable for him until it got really bad). My mother had a heart attack at around age 62, I believe, although she's still going strong at 92 (Dad died at 90).

Since this "condition" has been only two days in my life, I have not yet had the benefit of an experienced cardiologist helping me understand what might be the cause of the condition and what I should and should not worry about. For instance, am I doing more harm than good when I go out jogging or work to lift weights to the best of my ability? Pushing myself till I am out of breath, as people often do normally--say, when taking a cardio class or something--was a no-brainer for me; I figured I was oxygenating my blood and building stamina. But now...am I stressing my heart--or will these things work in my favor, strengthen my heart?

These sorts of questions are on my mind. It's natural, I guess. And having found this forum is, I think, a wonderful thing for me in another respect: I do not want to tell my mother about this; at 91, I don't want to worry or upset her. And my husband knows, but he is (while perfectly loving and lovely) a fearful man with things medical, and I don't think I will be able to receive the staunch, postive- and proactive-thinking MO that will help me marshal my own inner resources. And I don't really have a cadre of friends who will rally around me on this.

It may be that I can learn a lot and gain a lot from members here.

Thanks again for the ideas, the input, and the support!

Best, Sona

 

[Adrienne]

With mild insufficiency at 56 years old, it is possible you will never need surgery. Naturally, you should have everything checked out thoroughly and regularly, but I wouldn't start worrying now.

 

[starfish11040]

I think you should relax. You have plenty of time. I was diagnosed with "moderate - severe" aortic insufficiency. Well, it stayed like that for a full ten years when it became "severe". That was two years ago. I went from an annual echo to every six months. I'm still in the waiting room, have no symptoms, and walk 2 1/2 miles on the treadmill five times a week at 3.7 mph.

With mild insufficiency you probably have a long way to go or may never need surgery.

 

[sonavogel]

Starfish (3.7 on the TM is fabulous!), Adrienne, what you both write is a revelation to me, and I thank you for it--especially since I haven't yet been able to speak with my PCP and because after the echo was faxed to me yesterday, I went online by myself to research "aortic insufficiency" and got a throatful of information that was very hard to swallow without a bellyache~

Last night, after I spoke with my husband and basically forecast that he might outlive me rather than the other way around (as he has always predicted), I shut up, took half a Valium, and went blissfully to sleep. It's true; I was worried then

But I woke up resolved to take hold of the situation and arm myself with info before my PCP calls next week. So I went online, stumbled onto this forum, learned about the Cleveland Clinic, called them, learned about the US New & World Report survey, called NY Presbyterian, got some names, and then came back to this forum to read some more. Then I posted.

And tonight, I feel better! I will fight not to worry about this.

Once Lorraine comes back online--after her surgery is behind her and she's growing stronger--I will ask her about Dr. Krieger and the cardiologist who is part of his team. The doctor the intake supervisor at NY Presbyterian recommended is Dr. Irobunda, with surgeon Dr. Moses. I take it that NY Presbyterian is split into two symbiotic facilities--Columbia and Cornell/Weill. Krieger's unit is at Cornell, I believe; Moses' unit is at Columbia.

So I will keep studying this.

And if you're right, Starfish and Adrienne, I may be fortunate indeed never to need surgery. <fingers crossed> On the other hand, I would think that surgery at 65 would be better than at 80...no? Just from a constitution standpoint. And either way, I will want a good cardio and surgeon combo familiar with my situation over these next years.

Thank you again!

Best, Sona

 

[Tom F.]

Well chat with your doc and explore the cause, that is about all that you can do. There may be additional tests, if your doc feels they are needed. I would continue to live your life as to wish, but also talk about that with your doc. As I mentioned, I have been told that many people develop aortic insufficiency with time, and "mild" is just that, mild.

 

[strawberry]

Hi!

I have mild aortic insufficiency too found after a GI doctor heard a murmur and I had been having a lot of palpitations. They told me I had a myxomatous mitral valve too and were more focused on that but my last echo shows my mitral valve to be normal, so I don't know what the cardio will have to say now since she told me the AI was from the "same process" (as the mitral valve." The echo showed I still have mild AI after two years which is good news I guess. It's still there but hasnt' progressed. Although mild valve regurgitation is a normal variant for the other three, I was told it's not for Aortic valve, and it's the one valve you don't want to have leaky.

Anyway,I get checkup every year with an echo every two. I asked the nurse who called with my results if I still have to be seen since every year with my normal mitral valve and she said "oh yeah, we still have to follow that. Oh well.

Welcome! PS I'm 43 so I was 41 when I found mine.

 

[Elcarim]

Hi Sona, and welcome. I am also a newbie, having only registered here yesterday.
You are best off hanging on to your own valve for as long as you are comfortable. Once you do have it replaced, whether you get a tissue or a mechanical valve, you have other problems and risks to deal with.
Both times I have been in for OHS I have been in a group with other patients who were mostly over 70yo. They seem to get along fine. But it is also very possible that you will never need surgery, as Adrienne said.
It is very daunting finding out that you are not as perfectly healthy as you think you are, and suddenly feeling all the 'symptoms' is pretty normal. Fear and anxiety are a major problem and keeping positive is so important. Being informed about your condition and trusting your health providers will help you feel more in control and alleviate your fears.

 

[dlangton]

NYC hospitals

NYC hospitals

Hello Sona. I am not an expert but I have been through the routine, with a replacement of my bicuspid aortic valve last December. My understanding is that surgery is not indicated until the ejection fraction gets down around 50%, which is where mine was found to be a year ago, but there could be other circumstances as others have pointed out.

Unlike me a year ago, you have insurance. You will do very well at Presbyterian or Cornell. They are excellent. My experience is with the NYC public hospital system, specifically Bellevue, and they were just tremendous, contrary to the old reputation that hospital used to have. If you would like more information about NYC hospitals, please email me. I did find out some very useful things.

 

[ALCapshaw2]

Greetings Sona and Congratulations on taking a pro-active interest in your Heart Health !

The only caution I would suggest is to limit your Weight Lifting which can increase your BP and possibly damage your valve. Most likely your Cardiologist will consult with you about an acceptable exercise plan after his evaluation. It is not uncommon to hear "more reps, less weight". In the early stages, aerobic exercise is usually acceptable.

'AL Capshaw'

 

[Adam 12-21-05]

Welcome to a great support group here!

Seems like you are already getting some excellent inputs above.

Cheers,

Adam

 

[EVELYN]

Hi Sona

Welcome to a wonderful support group. You absolutely have found the right place to be. I'm hoping you'll be in the waiting room for many years to come. I would ditto what Rossman said and not put the cart before the horse.....easier said than done.....and worry too much about your situation. Chat with your pcp, and start doing your research, but it may still be many years before you need surgery....if at all.

My husband, Tyce, had AVR in June of '02 after about 5 or 6 years in the waiting room. He was monitored yearly and then every 6 months the last few years. He had surgery at St. Francis in Roslyn and we certainly would recommend that hospital highly. Dr. James Taylor was fantastic. He is definitely someone I would put on my list to look into.

You will be fine, just relax and go with the flow till you know something more definitive.

Again, welcome.

Evelyn

 

[SumoRunner]

My valve problem was discovered at age 10. That was 1958. I began running seriously at 30 in 1978 and while I was never especially competitive I was able to post some decent times at various race distances (6 min mile, 20 min 5K, 43 min 10K, 67 min 15K) as late as age 41. The valve was replaced in 1991 when the insufficiency was worse than 50%. I've continued to run with the artificial valve, including doing my favorite 15K race another 12 times since.