Diagnosed with AVR

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EclipseDS

Member
Joined
Apr 27, 2011
Messages
19
Location
Fremon, CA
Hi all,

This is my first post in here. I can't thank my friend enough for referring me to this site.

My story is probably about the same as everybody else's. Back in the days, I used to be pretty active. I started feeling SOB about 18 yrs ago, which I thought was due to my being lazy and smoking. I smoked for about 2 years, nothing drastic, just half pack a day, stopped mid way thru college. High BP is what always stood up everytime I went to see a doctor, so I decided to get fit. Of course, that was a lot easier said than done as I manage to only lose 12 pounds in 3 years and some of those pounds came and went. I'm 5'9" and weighs about 183 now, used to be 194 lbs.

4 months ago, I started running on the thread mill and noticed I had an unsually hard time -SOB after 10~15 minutes. However, it gradually gotten better and I was able to stay on it for 45 minutes, at the end of it, I was gasping for air. I thought I was getting better and fitter -or so I thought.

My wife forced me to go see my doctor for a routine checkup. I didn't have one in the previous 2 years as I don't really have any complain. This was on 3/16 and the doctor heard a murmur plus an unsually high BP -154/71. EKG didn't show anything significant but scheduled me for an echocardiogram on 3/29. She called me on 4/8 and told me I need to see a cardiologist, after stating briefly the possibilities. I went to see Dr Louie on 4/15 and that's when he told me I have a severe Aortic valve regurgitation. I was crushed, this is not something I thought would even be remotely possible. I asked for a second opinion and got it on 4/26 from Dr Keane Lee -who confirmed the first findings. 4/28, I went to meet the surgeon, Dr. Mario Pompili. He wants it done within a month's time but I have to make sure everything is ready, so I asked to get operated on 6/29/2011. This is going to be in kaiser Santa Clara, CA, BTW.

Everything was happening so fast, I hardly had time to catch my breath. I came from not feeling any symptoms (aside from SOB) to going under the knife. I was crushed, shocked and in denial. But I slowly started accepting it. And thank God, I found this community. This is the single most important thing I discovered ever since I came to know about my condition. The recollections, advices and insights prove to be quite valueable. And finding out that quite a few have walked the path I'm taking now, somewhat lessens my burden. Thank you all.

-Eli
 
Welcome

Welcome

Indeed welcome, you are at the right place. Wow, what short notice!! I too had not many symptoms but they picked it up on a murmur also quite a few years ago. You will feel so much better in a few months post-op, trust me.:biggrin2:
 
Welcome to the community! I agree, this is a great place to learn about your situation and what to expect, and I am glad you found it. I didn't find it until after my surgery, which was also short notice. In my case, I had been diagnosed with BAV for most of my life, but the most recent echo turned up an aortic anuerysm that required surgery soon! I went from not knowing I needed surgery to having surgery in about a month! I wish you well, and will be pulling for you.
 
Eli, I think many of us have felt much the same way. It is a shock, even if it is not a surprise, to learn that the time for surgery has come. One goes through a period of grief. The good news is that most of us come to feel better about what is happening and then get down to dealing with the details of preparing and then on to dealing with recovery. I, too, found the experiences and discussions here in VR so very helpful. It is wonderful to discover that one is not alone.

Larry
 
It's a common story.
Many of us knew for a length of time we had valve issues but didn't expect surgery soon and suddenly were told the time was 'now'.

Others, like you, had no knowledge of valve problem until told it's time for surgery.
Many of us will agree the wait is truly the worst part of this whole experience.
I had about a month between being told 'surgery now' (it was my second OHS) and when I had the surgery. That was a very long month.

Happy you found us and hope we can help you through it all.

Best wishes.
 
Hey Eli,
I found it like hitting a wall in life, everything must slow down and nothing else becomes as important even though others around you do not understand. You sound like a strong individual who has come to grips with the reality of the situation and are on the path to a "reset in life".

I agree, this site really helps being able to discuss freely your fears and personal situation. I was made to feel like part of a family and the knowledge base is exceptional and non judgmental.

Welcome to The VR.org portal and I wish you the best in your journey.
May the gods be kind!
 
You hit it on the head, nobody understand how uppermost this is on your mind and nothing is as important at the time. I had googy symptoms (thank God) on Feb 11 and I had surgery March 11. I had my AV replaced and an aneruysm repaired. I am a fairly new widow, I am 52, work full time, have 2 teens, 2 dogs, am fighting with the mortgage company and now I was going to have open heart surgery! I felt like I fell into a rabbit hole or someone else's life. However it does turn out okay, they do this everyday and all you have to do is show up and turn it over. I am 7 weeks post and this forum has helped me find the information and support I have needed. NO ONE really understands this journey as well as fellow valve replacememt club members.
 
Hi Eli

I just rejoined yesterday too. I am glad you found this site when you did. It is a daunting prospect but as you can see here lots of us have gone through it and come out the other end all the better. I hope you find information and friends here
 
Thanks a lot for the warm welcome, and I wish, more people who are undergoing the same ordeal find their way in here. It does help a lot, just getting some of that burden off of my chest. Prior to my finding this site, I resigned to the idea that my chance of surviving is 50%, and when it's your own life at stake, it's hard to settle for anything less than 1000%. At 37, I shouldn't be worrying about this, but I am. Anyway, I feel so much better now, and I look forward to feeling a lot better still, as most of you stated, after going thru the surgery.

Just an update, I went this morning for my CT Angiography. It wasn't so bad as the pain is minimal and it's non-invassive, but I'm wondering if there's anything they might have missed by not going cardiac cath. I don't have any blocked coronary arteries but my aortic vein is mildly dilated, something they need to study if it requires fixing. Cardiologist said it's imperative to keep my BP at normal level until the big day.

Thank you and I wish the very best to all of us.

-Eli
 
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