Update on my research re finding cardio ?team?

[sonavogel]

Thanks to everyone who was so kind and supportive yesterday, when I posted my intro about receiving an echo DX of ?mild aortic insufficiency.?

Since then?and largely thanks to using the search function at this forum?I spent a lot of time researching, although the more research I conducted, the more out of my depth I felt!

I had decided that since I was starting from square one, I could begin in a ?back door? way, so to speak. That is, I decided to focus on NY Presbyterian Hospital, and then with the Cornell/Weill unit, after reading (here) so many encouraging posts about Drs. Karl Krieger, Len Girardi, and Craig Smith. Dr. Krieger is about ten years older than Dr. Girardi, and without knowing when surgery would be for me I thought perhaps I should focus on the younger surgeon?but I certainly am hoping that when the time comes I can opt for a minimally invasive procedure, and it seems Dr. Krieger (the older surgeon) does this while Dr. Girardi does not. Talk about trying to think of everything!

But, of course, I can?t know anything about my condition without first developing a relationship with a good cardiologist. So I called the offices of both Dr. Krieger and Dr. Girardi, and got names of referring cardios. Names, names, names.

In the end, I made an appointment in two weeks?I still haven?t spoken with my own primary care physician, and I figure I can wait two weeks?with Dr. Robert Campagna, who left NYU Presbyterian in January, where he was Director of the Acute Coronary Syndrome Program and Associate Professor of Medicine, for private practice. He refers patients to Dr. Krieger. I will have to see what happens from that point.

I?m concerned on a few levels, but I don?t have enough information about my own condition to justify my concerns, and that?s maddening. I have been reading here that aortic valve ?repair? is not common; replacement is more likely (mitral valve repair is more common). That dashed one of my hopes. Alternatively, I was also soothed by several posts about not worrying?that it may take years before surgery is needed for me. On the other hand, I have also read other posts about the advisability of replacing a valve before other complications or deterioration develops to cause a more problematic surgery?sort of a proactive approach. That?s scary, but it also makes a kind of sense.

Anyway, I?ve spent a large portion of my workday one way or another on this site and related links, and I?ve learned a lot. Most of all, I am aware of how caring and helpful people on this forum try to be, and I can see how much it means to others. I am very glad I found you.

Best, Sona

 

[Phyllis]

Sona, it sounds like you are doing the best you can to educate yourself and be as well prepared as you can for this journey you have started. There is nothing more important that an informed patient- well maybe a better informed surgeon! Best wishes for your appointment with Dr. Campagna and be sure to come back often with any questions that arise.

 

[Nancy]

Go to the Reference Sources Forum, then go to the "Sticky" at the top Must Have References. Check out the guidelines for Management of Patients with Valvular Heart Disease 2006. Read all of that.

Go down to the display options and where it says"From the" choose Beginning from the list.

When you have read through everything there, you will have "your degree".

You must educate yourself about your condition, no matter how difficult it is to read at first. It's nice to have doctors to rely on for final decisions, but you are the one who REALLY cares about YOU. Always remember that. Your doctors see many people every day, you are your only patient.

And if you don't educate yourself about what is going on with you, it will come back to haunt you later on. I guarantee. I am speaking from many, many years of experience taking care of my husband who lived a long time with his problems.

 

[ALCapshaw2]

Welcome Sona,

Do as Nancy says. She is "Mother Superior" on VR.com and probably has more knowledge and experience than most of the rest of us!

After that, finding a compatible cardiologist and having REGULAR Evaluations (echocardiograms mostly), you should do well. When your heart reaches the well known 'trigger point(s)', your cardiologist will likely recommend surgery.

Interview surgeons as soon as you 'approach the trigger points' so that you will "Be Prepared". Aortic Valves can deteriorate rapidly towards the end of their useful life. One of our favorite expressions is
" The Worse it Gets, the Faster it gets Worse ".

I'm glad you are becoming informed during the "early stage".

'AL Capshaw'

 

[Nancy]

Thank you Al, I offered up a prayer for you

 

[sonavogel]

Nancy, thank you so much for the suggestion about the reference section! I'm there now, reading the guidelines, but I'm confused about the second part of your post:

"Go down to the display options and where it says"From the" choose Beginning from the list."

Where do I find the display options? I take you're not talking about the list Ross provides, of all the links...? I'm already reading the Guidelines for Management" from that list of links. You mean something else? Or did you just mean that when I've read the guidelines, I should go back to Ross's list of links and work my way down it...?

Best, Sona

 

[Nancy]

Go back to the Reference Souorces page and THEN scroll down to Display Options.

 

[sonavogel]

Got it! thank you very much, Nancy~

Looks like I'm going to be devouring information for the next twenty years!

And Al--thank you so much for the encouragement. It's much appreciated.

Best, Sona

 

[sonavogel]

I'm still reading the Guidelines pamphlet, but I just took one hour to watch the aortic valve replacement video done at St. Luke's Episcopal in Texas (with Dr. Cooley narrating).

I was riveted--I've never seen anything like this. And that the surgeon could chat on and answer questions put to him while he was working...! It was amazingly informative, with the varying discussions on type of valve and life expectancy and so on.

This forum has an amazing amount of information to digest! My thanks to all the members who have taken such trouble to share what they have learned and offer other venues for study.

 

[sonavogel]

Rachel...oh, I don't even know what I want to say. I think I'm crying now because you word your posts so well--I mean, making sure to say "if and when" about surgery instead of "when," and sounding so measured and calm.

I guess I am turning this into a "freshman racing to the finish line" issue--that may be part of my nature. So what you write--and all the suggestions I'm getting here--will help to keep me grounded, I think. And I do need that. This is one of the first times in my life when I have learned that there is something broken/breaking inside me that can't be fixed just by knowing now that I have it--like by stopping a food (allergies), writing a check (pay off a debt), penning a letter (soothing away a friend's hurt feelings).

So it's not as though I can turn against myself; I can't root this out. It's a new phenomenon, something I must come to terms with, make peace with. Somehow.

I have made a second cardio appt.--I now have two to meet, one from the Cornell/Weill unit at NY Presbyterian (mentioned in my first post): Campagna, with the Karl Krieger unit; and the second is with the Columbia branch of NY Presbyterian--Christopher Irobunda, who works with the Dr. Naka, Craig Smith (and Mehmet Oz, although from what I've read here, I wouldn't be much interested in him) unit. I may look for a cardio with Len Girardi's unit, as well.

As you suggest, I will make sure to ask these cardios if they specialize in aortic valve issues or if they can recommend someone who does (and thus also refers to a specialized aortic valve heart surgeon). And I will keep looking to find someone who won't be 70 in 10 or 15 years who does specialize, or at least has a great deal of experience and interest in this area.

I have a lot of research yet to do on valves, on coumadin therapy, and more.

Thank you again, Rachel, for the balanced post. I need it.

Best, Sona

 

[Nancy]

If and when you need surgery, please keep remembering that these things have a fix, like fixing plumbing. Many chronic diseases do not have a fix and can only be managed.

 

[sonavogel]

TEE completed; cardiologist interpreted...

TEE completed; cardiologist interpreted...

Well, I apparently have taken this process as far as it can be taken, for the time being. And the results seem to indicate that I am in no immediate need of intervention in any form (meds or surgery).

I had my TEE at NY Presbyterian Hospital on Wednesday. I got down on my knees to beg the doc and the technicians to be gentle with my throat and to knock me out completely before having me swallow the tube. They were a bit taken aback, explaining that they really needed me to help swallow--but they agreed to add some Demerol to the Versed to help me out. (I already knew they had only one size tube for the procedure; I had called a week earlier to check on this, and they confirmed that only one size is used, except for children.)

Well, the Versed/Demerol cocktail did the trick. It really IS an amnesia drug, isn't it. Apparently, I kissed the technician thank you on my way out, something I have no memory of at all. I also do not remember the procedure at all. So the stuff is like gold!

I actually was left all day wondering if they'd really done it or just pretended to. Finally, around 8 PM, my throat began to feel...not sore, not inflamed, just as though someone had been reaching down with both hands and manhandling me. So I knew then that the TEE had been performed.

My cardio called to have me come in today to go over the results. I have just come from him, and I have copies of the echo his office had done three weeks ago and Wednesday's TEE.

Well, the TEE indicates every measurement within normal parameters, and gives the aortic insufficiency as "trace" rather than "mild" with tray central and eccentric components. Aortic valve is trileaflet. No enlargement, normal, normal, etc. No evidence of thrombus anywhere.

My cardio indicated that what the TEE shows I have, many many people--unbeknownst to them--have, and will continue to have, for their lives. His DX was to keep living, to see him no earlier than a year from now (unless I begin to suffer from symptoms), and to know that nothing more at this point is indicated to be done.

May I say that I want to believe him? I mean, I DO believe him, I just mean I'm HAPPY to believe him. With the TEE, I feel that I have the information I needed to understand my situation. I don't feel an MRI is needed at this point.

Whew! Thank you, everyone, for the support and the information and the reassurances. I think I would have gone off the deep end without you.

 

[sonavogel]

Not so fast. I don't think you have adequately investigated the recovery room protocols for removing the breathing tube. You need to make sure you have this nailed down before you stop worrying and "live your life." There are probably many, many more esoteric aspects of AVR that you can familiarize yourself with, before you let this go. Come on, girl, don't be a wimp! Don't tell us you're quitting now!

Oh, I'm not finished--I've got a ton of research ahead of me! I'm just going to cut back on the number of AVR videos I watch each week~ And I may actually turn out to have to research a whole new crop of AVR surgeons before it's my time--the ones I've grown to have such confidence in now may not be around by the time I'm ready.

One thing I am actively pursuing now that I've learned more about the contributors to breathing difficulties at night: a sleep study clinic. I have definite blockage lying down--Nasonex and saline solution, thanks to a deviated septum--and who knows how much of the fatigue I wake up with is the result of obstructed breathing in my sleep? I want to see about this--if my oxygen sat rates are down overnight, that's not good.

Thanks to info on this forum, I've come to realize that this, too, may be part of the equation!