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2legs

Member
Joined
Jan 29, 2012
Messages
21
Location
Sacred Heart Med Cntr, Spokane, WA
My cardiologist told me I could wait until Labor Day for AVR unless I have symptoms. He took me off of BP med because my bp is down to 110/50. Now is up to 130/55. Not a big change. My pulse stays right around 90 all the time even in bed. I have severe aeortic stenosis caused from a heart murmur since birth. I don't know what the numbers are but my echo 2 years ago was getting bad, then last year it supposedly got better, my PCP couldn't understand it. Then this year was pretty bad. The cardio said it was cause by bad data????? I dont understand that. I am thinking about not waiting. He said the valve is getting really tight and informed me I have a bicuspid valve which I wasn't aware of. Any suggestions? I was going to wait so I could do some RVing. I am 62 retired and in Fair health. I have decided on a tissue because I have a hard time absorbing meds. I am sure I should put in more info but not sure what.
 
Hi, 2, and welcome to The Waiting Room - the virtual room where many await their own turns at valve surgery. My situation was much like yours. I had a "probable" bicuspid valve and had years of fairly stable echo's. Your one "better" echo result is probably not a better reading, but is probably wrong due to the variability of the echo process, the technicians, the machines, etc. If that one result was a lot better, I would have asked them to repeat the test. This sort of valve condition doesn't "heal" without surgery.

I had my "very tight" bicuspid valve replaced with a tissue valve at age 63. No reason to look back, either. As for when to have your surgery, what were the measurements at your last "bad" echo? The surgeons have numerical targets set such that if your measurements are worse than these, they will do the surgery. In addition, regardless of the precise measurements, if you experience any of the "cardinal" symptoms (shortness of breath, fainting, chest pain) they usually move right to surgery as well. Absent symptoms but with measurements bad enough, the surgeon will proceed whenever you choose. The cardiologist, on the other hand, often wants to wait until it is almost too late. If you want to move ahead and the cardio isn't sure it is time, ask for a referral to a few surgeons and see what they say. Often they will proceed even though the cardio says you "could" wait another few months. The cardios seem to feel that we all want to wait as long as possible, but that is not always true.
 
Welcome, 2 legs.
Happy you found us but sorry for the reason.
Perhaps you might wish to consult a surgeon. A surgeon can give another opinion as to the best time for you to proceed with the surgery.

Let us know how you are doing.
Best wishes.
 
Welcome to our little community here at VR. If the stenosis of your valve is severe, then you very likely already have symptoms. You have just written them off to other things as many of us did. Sad though it may be, this is not a condition that improves even though a poorly executed or badly interpreted echo cardiogram may lead one to think that. For most of us, it is difficult to learn that we have a terminal illness unless it is treated and the treatment at present is a valve replacement. Three years ago, I was in your shoes. I had some seemingly minor issues which I ascribed to just growing older; I was 59. Then, over the course of just a few months, my valve became severely stenotic and I began to feel very very ill which made everything more difficult. I realize now that I hesitated to nudge my cardiologist, partially, because I was concerned about surger but mostly because I didn't want my life to change. In retrospect, that was silly because my life was changing every day and for the worst. The onset of radiating chest pains finally triggered the meeting with my surgeon.

Surgery was...well, we are not really there for surgery, are we? There is really before surgery and recovery after surgery. Before, I was ill and getting worse. As recovery began, I felt better even the first time I woke up and it got better every day. The experience of recovery proved to be a wonderful time in my life...not "awful" at all. Yes, like everyone else, I woke up astonishingly weak with absolutely no stamina but even with that I could feel the difference. On my 3rd day in the hospital, my Sister in law came into my room and looking sort of startled said "You're Pink!" Although she had said nothing at the time, two weeks before my AVR she and I had lunch which she left thinking I looked terribly ill. She didn't expect to find me sitting up and looking healthy three days after surgery and, to tell the truth, neither did I. We all have somewhat different experiences during recovery but for me it was thrilling to feel strength return and to begin once again to think about having a future. It is a different future than I had imagined for myself. I had never thought to include heart surgery in any future I imagined. Since the AVR, I have come to see myself differently, I mean, how can we not see ourselves differently after such an experience? Our surgeon's hold their patients hearts in their hand every day or so. For us, this may be the most significant health crisis we have ever confronted. That can make it look intimidating and even frightening....and so I found it. The worst period was that during the weeks leading up to surgery. Recovery turned out to be ever so much better than I had imagined.

I would encourage you not to wait longer than you must because as the valve grows worse it becomes more of a threat to you. Knowing this, we sort of put our lives on hold. Recovery will be better than you expect then you can get on with living. My life is different now. I would like to think that I appreciate it more and enjoy the small pleasures that are all around us. I also think these experiences have left me with more compassion for others. Life on this side of surgery is a lot better.

Larry
 
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I'd say go ahead and talk to surgeons, and schedule it now. I'm a victim of delay (by my internist), and just a few months made a HUGE difference to my long term heart health.
 
Hi,

Welcome to the forum! Have to say with Laurie - I would talk to surgeons and schedule it now. Of course a lot of that boils down to my personality - if I know something's wrong, I want it taken care of as quickly as possible. And as others have said, you don't want to wait until it does damage to your heart.

Best wishes as you make your decision! There's a wealth of information and great people on this site, so hope you'll keep us updated.
 

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