It's been a rough two weeks...

[big_L]

I went to see my new cardiologist two weeks ago and he hits me hard with - your going to need your aortic valve replaced, not right now, but we need to start a 6 month echo schedule. I was floored and have been through a whole range of emotions since then.

The murmur was first heard in my early 20s, I'm 54 now. I had a few echos done 20 years ago and they were stable, not much change. So, I went on with my life and didn't even think about it. I'm in the best shape of my life, good blood lipid profile, but on Lisonopril for HBP. I have no symptoms, which is good.

Fast forward to 2007 and the first bout of A-Fib. New echo and a transesophageal echo at that time. The aortic valve is trileaflet, but calcified. I get set up with a great electrophysiologist at CVM - Davenport (IA) at that time. I love this guy. I've had two other A-fibs since then and his message to me is - "get out of here and make room for the sick people". He decides to leave to teach and the practice wants me to start with a 'plumber', not just an 'electrician'.

So, I go to the 'plumber' and let's just say bedside manner isn't his strong suit. He was quite brusque in his message and it was very upsetting for myself and my spouse. I will admit that the echo results did get worse in the last year. Here they are:

I guess I've progressed from "moderate stenosis" to "severe". How long until I'm critical?

So, I'm tied up in knots over when I'll have to do OHS. I have an appt set up with the Univ of Kansas Med Center in Kansas City in three weeks for more information and another echo. My wife is from that area and we have more support network there. I'm not thrilled about driving that far, especially if I decide to have surgery there, but it's for the best.

I've already decided that when I go back to CVM that I'll be asking for a different Dr. This is just too important.

I have a TON of questions and will start posting these as I can. Actually, this document helped a lot, especially the 'decision tree' on p. 721. Thanks for your time and support.

 

[Heart Of The Sunrise]

big_L: You are going to need surgery. Waiting really does not serve a useful purpose. Fear and denial will accomplish nothing. Do your research! Learn what your surgical options are. Make your valve choice! Get with a surgeon and hospital that are the best you can find. Get all your ducks in a row and get it done. I am day 35 post-op. I am walking four miles per day now. I am happy with my valve choice and so happy I got it done and did not wait until I was symptomatic.:thumbup:

 

[escargome]

big_L, my opinion is just that an opinion. So here are my 2 cents. Yes, you feel you have no symptoms, however, your heart can and will compensate for a less that functional heart valve, so if one cardiologist says "it's time" then get another opinion just for your mind's sake. Then if that second opinion is the same, then as Heart Of The Sunrise said, research, find the best doctor's for your team and the best hospital and get ir done. Knowledge is power, take hold of your ability to use this power. It has been almost 5 years since my husband and I were hit with this kind of news and though a lot of research and reading we together made the very best decision for use and our life together. So keep us updated and ask any question or post any fear you or your wife may have. There is someone on this forum who wll answer with advise and suggestions. :biggrin2:

 

[Pat J]

I held on to my severely aortic bicuspid valve for almost 7 years before surgery, but my heart did start to enlarge and stiffen

 

[big_L]

Ok, thanks for the replies and I hear you loud and clear. I'm really wondering if I should have it done this year before winter sets in here (Iowa).

Is is reasonable to consider having the surgery in Kansas City and then have to face a 6-7 hour drive home after I'm released? This is worrying me. It's still a better option as we have family and friends there. I know a lot of people in this area drive all the way to Mayo Clinic. I guess I'm worried that I won't be able to sit in the car for that long.

 

[Mike59]

I had my aortic valve replaced last year, and was asymptomatic at the age of 52

I would fully recommend just getting on with the operation as recovering will be easier

Good luck with your decision making

 

[Allisoninoz]

Hi, I had the Ross Procedure two years ago and am doing fine now. But I wouldn't have wanted to sit for seven hours in a car after discharge. I was nervous enough travelling 30 minutes to get home. If you do choose to do that, plan to get out of the car every hour or 90 minutes to walk and a stretch. You are VERY tired, emotionally and physically, when you get home. I think I had a bit of a cry, had a cup of tea, patted the cat, and then went to bed for a two-hour nap.
And, stupid question, but you do realise you won't be doing any driving for several weeks I assume ...
And as far as the 'when?' goes .. I recommend getting it over with, otherwise it just plays on your mind. The waiting is the worst bit. Decide who and where and book in. Then you will be on the road to recovery. Good luck.

 

[Oilman]

Big_L, welcome to the party, my experience is a little like yours, found my BAV at 18 yrs of age, started having echoes every couple years from age 30, finally 3 yrs ago at age 46 I suffered a small TIA, possibly from the start of mild Afib throwing clots, lucky I had no permanent symptoms. Then just the past sept I suffered my first big Afib attack, that needed a cardio version to slow the heart rate. The next day I had a angiogram done and was told it was time. We had a rough few weeks also, but learning and asking questions here helped to come to grips with my condition. I waited 10 long weeks for my theatre date, that was the hardest part of this whole experience.

As far as a 6 hr drive after surgery, pretty tough in the sitting position, I had a two hr drive home in the back seat of a mid size SUV and that was painful for this 6"1 frame. If I had a choice, which I didn't cause of our system up here, I would prefer recovery without snow on the ground, I was home Dec 4, and wasn't able to do much walking outdoors.

Today I am at almost 5 months out and grateful that I received this repair and new lease on life. This operation is life altering and I have a new appreciation for life and my health. My last class of cardiac rehab is Thursday and then I will jump a plane to Cancun with my family that was planned for last Xmas, but due to my valve job it had to be bumped, we are now ready, zipper and all..

I think it's your time to get it fixed, then comes recovery, you will not regret having it sooner than later. Keep us posted.

 

[Phil]

Hi big-L.
We are the same age and I'm getting my aortic valve replaced next month. I have felt fairly ordinary for the last year or so and because of this I'm looking forward to the surgery and getting back to my old self. I'm sure it will go well for me, as it will for you.
Best of luck.


Phil.

 

[kimcdougc]

Hi big-L,

All of the comments are right. I feel your fear. My AVR is May 23, 2013. Kinda surreal right now. Went for my pre-op tests yesterday. Now all I have to do is show up. You can do it big-L. What is the alternative. Sooner is better than later. I will remember you in my prayers and pray for you to set and date and go for it. Lots of support here. Kim

 

[big_L]

Thanks for the comments. I'm doing a bit better with it in the week since I first posted. I have an appt next Tuesday at the KU Medical Center in KC for a second opinion and another echo. We'll see how that goes.

 

[Guyswell]

big-L

It's probably time to get it fixed. The increase in your pressure gradient is an important indicator of how calcified your valve has become. If the doctors at KU Med tell you to proceed to surgery, they're telling you that the risk of waiting is greater than the risk of surgery. Once you reach that point, there is no advantage to putting it off another 6 months. your ejection fraction is still very good. Don't wait until permanent damage is done to your heart. KU Med is a very good place to have your surgery.

As for the long drive home.. consider staying a few days in a nearby hotel after you are discharged from the hospital. There are some nice hotels within a few miles (Country Club Plaza area). That will give you a few more days to gain strength and you'll be close to the hospital if you get nervous about anything and just want to get it checked out before the drive home. When driving home, plan on stopping every hour so you can stretch your legs and walk around a bit.

I live in the area. I've had aortic valve replacement surgery two times. I volunteer as a heart advocate a few times each week and visit heart patients at the hospital where I work. I'm happy to answer any specific questions you have. I'll even come visit you when you have your surgery if that would help.

 

[big_L]

Thanks Guyswell, I may take you up on the offer, we'll see. We had a great vacation at the CC Plaza a few years ago. We didn't know it until we got there, but the Art Festival was that weekend. What a pleasant surprise. Staying a few nights in KC after discharge is a great idea.

I'm quite concerned about the velocity/gradient increase in the last echo. I'm having another echo done next week. I did read somewhere that the Doppler measurements can be prone to error. I'm trying not to live in denial, but I want the best data.

 

[Guyswell]

Echo measurements of ejection fraction can vary from one technician to another and from one machine to another. I've been told that if an echo study shows my ejection fraction is 60%, it could be anywhere from 55 to 65. I'm not sure if the velocity or pressure gradient readings are subject to the same variances.