Questions for Ross

[PJmomrunner]

Hi Ross.

I notice you had an aortic dissection repair in '95 and an AVR in '02. I am looking at an ascending aortic aneurysm repair and AVR...timing as yet undetermined. I was diagnosed in December '04 and am having another CT tomorrow. I have been told my aneurysm is close to the arch and at about 4.5cm (I have also been told it's 4.8cm, but I'm going with the estimation given by the surgeon I have chosen). I have been told by 2 cardiologists and 2 surgeons to have the aneurysm re-imaged every 6 months and operate when it hits 5cm. The surgeon I trust most also added, "don't lift, push or pull using more than 30 lbs. of pressure, keep a log of shortness of breath and heart symptoms, take BP 2x a day and keep a log, don't shovel, don't do anything that makes you go "unh!". If you can't live with those restrictions schedule surgery." I scheduled. Then my cardiologist said, "What! Don't have surgery yet! It's too soon! You're trading one set of problems for another! Your aneurysm could be stable for 10 years or more!" So I said, "Well, we have no idea how long it has taken to get the size it is. Let's do another CT at 3 months (that's tomorrow) and see if there's been any change." He said okay. In the meantime, I have not spoken to the surgeon and my surgery is still scheduled.

My questions: You've been where I DO NOT WANT TO GO...namely, you've dissected. Did you know you had an aneurysm? Did you do the "watch and wait method?" You also had a subsequent AVR. Was your native valve bicuspid? (I understand there is a high correlation between BAV's and aortic aneurysms, particularly ascending.) I am 42 years old. How old are you? Any advice for me, since you have the benefit of hindsight?

Thanks in advance for any info you might offer.

P. J.

 

[Ross]

Your faster then I. I answered this in the other thread:

http://www.valvereplacement.com/forums/showthread.php?p=118259#post118259

Any further reponses to this, just post back in this thread so we don't screw the other one up too bad.

 

[PJmomrunner]

Hi Ross:

I copied your response below for continuity's sake. I shouldn't have hijacked that other thread--that's why I reposted.

I know that your case is the exception, not the rule, but I can't help but worry. You were very lucky. Your lung thing probably saved your life. I'm guessing your aneurysm was also ascending since it "blew" your valve. McCarthy is now at Northwestern in charge of cardiothoracic surgery--I believe was brought in to develop a valve replacement clinic/program.

I am going to G. Michael Deeb, MD at the University of Michigan. I also consulted with a surgeon at U of Chicago. Deeb does all aortas--5 or 6 a week.

I do feel very much like a time bomb. I have not been keeping a log. My only "symptom" (I use the " " because I'm not sure it IS a symptom) is that after a long day on my feet (all-day shopping trip or Disneyworld from 9 to 6 or just laundry and housework followed by volunteering at the spaghetti dinner) my chest aches in the area beneath my sternum between my breasts. When I say "aches" I mean similar to the ache of a swollen ankle or other swollen injured part minus the throb. It aches the same way when my blood pressure is up (this doesn't happen as much now that I'm on a beta blocker). I do monitor my blood pressure, but I get mixed messages on that from my cardiologist--he basically feels all the "keep a log" stuff is a bunch of ass-covering...I don't know...I'm just not much of a log keeper.

What kind of limitations do you have?

Hi P.J.

I have a lung disease that has landed me in the hospital with chest pains many times. At first, I thought it might be a lung pain, but it was sudden onset and when my lungs do their thing, I usually have a small fever before pain and fluid build up. At any rate, this was in November of 1994. I was 33 then. At that time, my Cardiologist did an echo and catscan and saw the aneursym. It was about your size now. I was told that we would wait and watch. I never made it to my next check up. It blew in March of 95. I'm more then lucky to be typing this to you. Most people do not survive, but a few of us here have.

Do to the time I was on the heart lung machine, my surgeon opted to try and repair what was left of my Aortic Valve and resuspend it. The best he could get still left me with moderate regurgitation, but he had no more time to do anything. It was decided to see how long it would last as was. It made it until late 2001 and then I had the mechanical put in in July of 2002.

Your Doctor is on the ball with yours. Keep a close tab on it. Mine never did make it to 5cm before it blew, so your definately in the neighborhood now.
As far as I know, before all of this transpired, my Aortic valve was normal.

Keep a log and don't be afraid to call him if you think you need too. If it ruptures, I can tell you that the pain is like that of a heart attack. Never want to go through anything like that again. You don't either, I'm sure!
You've got to be feeling like a time bomb. I know I did. All I can tell you is to follow those instructions to a T. Where were you going to have this done at?
__________________

 

[Ross]

I'm completely disabled now. They did some things to my lungs during the valve replacement and rather then coming out better, I came out worse. It's the lungs, not the heart or the Aortic root or tree, it's fine and dandy.

As far as heart limitations, none really, except no heavy lifting. Sounds like you've been doing some studying. I hated to see Pat leave Cleveland. If it weren't for him, I would not be here, well, God and him.