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Rick W

Hi all you folks. I have read many of your posts and find them very informative. I decided join in and share about my situation today.I have a moderate to severe aortic stenosis. My repeat echo today revealed that I am getting ever closer to surgery and I hate how its affecting my life. I am sure my Card. will want more tests after I see him on Oct 3. I don't know for sure what will happen but in light of my slight dizziness and shortness of breath sometimes, I anticipate how I will deal with surgery because I know it is coming. I excercise and maintain a good diet in hopes of fending off the progression of stenosis. I will try to participate in this forum in hopes of finding support and comfort. Best wishes to all of you who are on this board. Bye for now.
Rick
 
Hi Rick,

Welcome to the forum. I am 13 months post-op and had Aortic Stenosis just like you. I did not know it as I had few symptoms. I had gotten used to feeling the way I was feeling. I remember being tired all the time, but my life was very stressful for some time already and I thought it had a lot to do with menopause. It was only by accident I found out what the real problem was.
But as soon as I knew I was told by the cardio to refrain from all strenuous exercise and no more heavy lifting. I was told the surgery had to be done soon because I was only a few months away from heart failure. I found out July 13th and surgery was performed the 7th of August 2000. Within eleven days I had a redo because of a blood clot that had lodged itself underneath the new mechanical valve. In both surgeries I did fine.
It takes about a year to heal completely, and I had several setbacks over the past year because I did too much too soon.
But I must say that surgery itself is not that bad. Really not that much pain. They have pain pills for that. You'll have mostly discomfort in the chest and will feel totally wiped out for a while.
The waiting period is the worst, but we are all here to carry you through this.
If we can be of any help to you, just ask, and everyone here will be more than happy to answer any questions you may have.

Christina
Aortic Stenosis
AVR 8/7/00 & 8/18/00
St.Jude's Mechanical
Coumadin 19 mg a day.
 
Thanks Christina,
I just wanted to add, that the hassel and expense of it all is what I think about most. I am having difficulty with acceptance. I dont trust hospitals, doctors or insurance companies, and rightly so after reading so many horror stories. They make mistakes and I am scared of that. Does anyone else ever feel this way?
Rick
 
Hi Rick

Hi Rick

Welcome to this site. You'll get very good answers to all your questions here. Everyone here understands your feelings.

If surgery is recommended for you, please think of it as a life saving procedure. It will prolong your life and you will also have a much better quality of life. The surgeons who do this are very experienced and dedicated. They do so many of these operations that they become routine. The valves available these days are wonderful marvels of engineering and there are many to choose from.

I am the wife of Joe, who has had 3 valve surgeries. He has an aortic valve and a mitral valve, both mechanical. He just had a repair on his mitral on July 18. He also has a pacemaker and has had 2 lung surgeries.

He had rheumatic fever as a teen.

So stick with us, we'll give you the truth as we know it, and we're a very opinionated bunch :p

Let us know how you do.
 
Welcome Rick

Welcome Rick

Hey, Rick:

Nancy is right. We have all been there and done that. I understand your frustration with insurance, etc. but you really must put your trust in surgeons and doctors, otherwise your recovery will be even more miserable.

There's some great tips and ideas in this string on what some people do to prepare, mentally, things at home, etc.

Insurance is a whole other issue. I was burned by my health insurance for $4,000! They paid everything except they had a problem with what was "reasonable and customary" for an experienced surgeon to bill more for doing two valves at once. Get a load of this: the insurance would have paid 100% if I were to have two separate surgery's! All because of semantics and the way the benefit plan was written. A very true, but utterly ridiculous notion from the world of healthcare providers. My HR did a pretty lousy job in the beginning in helping me prepare for the surgery. We thought all the ducks were lined up and there would be no problems, however the jerk insurance people found a loop-hole that got them out of the $4K. I'm now sending the surgeon $50 a month, and they don't seem to have a problem with that.

If you get denied for anything, there are insurance appeal processes on a state and national level. Just do a search for "insurance appeals" and you'll be surprised how much info. is available. I threatened to take it to this level, but I eventually just gave in.

I would advise thoroughly reviewing your health benefit plan with your company HR or insurance provider PAGE BY PAGE and underline ANYTHING that seems suspicious or is not quite clear. Don't let them gloss over anything. You have to have pre-certification anyway, so you might as well start off on the right foot by getting familiar with the necessary paperwork. Then start an expandable file. Also, make sure you have a witness with you, spouse, relative, etc.

So anyway Rick, get a few ducks lined up and try to feel good about it. You'll feel so much better about it afterwards.

Best regards,

PerryA
 
Medical trust

Medical trust

Hi Rick --

My take: you SHOULDN'T "trust" medical personnel (other than basic human respect and courtesy) nor should they expect it (which seems to be the harder part sometimes, for deep-seated sociological reasons, not technical or medical ones). Nor would I mistrust them. I would simply go pro-active: that is, do your own research, ask questions, familiarize yourself with the vocabularly, get second opinions.*

You won't learn enough to become a medical practitioner yourself or to replace their critical decision processes (unless you decide afterwards to go for a second career! -- which a tiny fraction actually do.) But that isn't the point. The point is to become part of the information loop and a part of the decision process. You have every right to do that (who has got a bigger stake in your health than you, anyway?), and your doing so has the effect of keeping the other "stakeholders" honest and faithful to their own roles. They are your advisors and your executive staff (not to speak of your employees!), though they have to be granted a good deal of discretion because of circumstances and technical considerations. But they also doggone well have to report to you. At times, you will simply accept their information and recommendations. At times, you request and choose among options. At times you suggest some yourself or ask your medical person to check out something that s/he hasn't presented. And, on rare occasions (only made slightly more common in these transitional times by medical "hubris," I think), the medical practitioner is so resistent that you have to terminate the relationship (amicably).

The advantage of this modus operandi, I find, is that it really does help to make people more responsible to their roles, including and especially our medical staff. So I tend to take the reactions of cardiologists and surgeons to this sort of scenario as a criterion for continuing to retain their services or, on the contrary, politely thanking them for their assistance and exiting stage left. The best respond very well, I think -- and rise to the challenge of working with a patient who is a colleage, rather than ruling the roost and giving papal pronouncements.

It's a skill we all have to learn bit by bit, since we've been mostly socialized to the simple supremacy of physicians in matters regarding health -- a sort of monarchial model of governance. Believe me (as you probably know), nurses are chafing a lot under the regime as well!

When being treated for amoebic dysentery and other tropical infections in France some twenty-five years ago, I found that nation a bit ahead of us on the medical consumer "spunkiness" front. There was (perhaps still is?) a wonderful national organization of medical consumers called ... "Impatients"!

Peter

* Should note that this attitude is endemic (maybe exaggerated) among adult educators like myself. WE sometimes joke that the motto of our profession should be "Last year I couldn't even spell 'agronomist' and now I ARE one!"
 
Welcome Rick

Welcome Rick

I am glad you found us. I wish I had this kind of support 12 years ago when I had MVR.
I know it is a stressfull time for you. I also have moderate Aortic Stenosis. The thought of a second surgery is quite overwhelming at times.
If you are having symptoms that effect your daily life, you are probably very close to a surgery date. The good news is you will feel so much better when the surgery is sucessfully completed.
Take Care of yourself and try to get as much info as you can so that you will be prepared.

Tammy
 
Rick,
I just read your post and I hope that everything goes well for you. Please don't be afraid of the surgery... you will be amazed at how much better you will feel!

Take care and keep us posted.

Zazzy
 

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