Anyone here had surgery for Aortic Aneurysms?

[braveheartlad_1967]

Hi friends,

I'm looking to hear from others who've had surgery to resect aortic aneurysms, in particular aneurysm to the proximal descending aorta.

I have had 3 OHS for complex congenital heart defects. I had a Coarctation of Aorta repair in 1985 (age 17), then the second surgery in 1998 for an aortic root aneurysm and bicuspid aortic valve (27mm CarboMedics CarboSeal prosthesis) and two months later in 1999 a resection of aortic aneurysm at the site of my Coarctation Repair.

It's now 7 years since my last surgery and I am thankful that I am alive. The surgeons found my last aneurysm measured 6cm and was "paper thin". They told my parents after surgery that it would have blown within a 2 weeks.

I see my cardiologist every 12months and have echo and MRI scans. I'm also taking Atenolol, Lisinopril, Coumadin, Atorvastatin and Persantin Retard (for TIAs).

This may sound silly, but I sometimes think about my life expectancy. I've not been able to find out much on long-term prognosis. I live my life to the fall, but feel like I'm living in a shadow sometimes. I fear the future. Does that make sense? Can anyone relate?

Look forward to hearing from you.

Jonathan
Sussex, England, UK

 

[RobThatsMe]

Hi Johnathan,

Sure sounds like you have been put through some challenges in the past. I wanted to share a site that I visit. It is for folks that have had dissections or aneurysms. It is more of a bulletin board forum, and not as interactive as here. However, you can write to Bill Maples and he will share your letter with the community and I am sure you will have some of the participating members write you back.

I had an ascending aortic dissection rupture 6 years ago, and found that site, and also this wonderful site.

The link to the site I mentioned is,

http://www.westga.edu/~wmaples/aneurysm.html

I think many of us think at times of the future and perhaps also feel the fear. This probably is a normal thing because we have already had first hand experience of the fragility of life. That is; As long as the fear is only used to keep you in check from time to time, and not used as deterrent to experiencing life. It sounds like you have a good balance, and are truly enjoying your life.
Since no one in this world has any assurances of when their life will end, then who knows... Perhaps your odds are better than someone who today appears to be in top health and has never seen the inside of a hospital.

Cheers!

Rob

 

[Ross]

I, like Rob, had an ascending rupture 11 years ago and subsequent valve replacement nearly 4 years ago.

 

[Creed3]

Hi Jonathan!

Hi Jonathan!

In September of 2002 I had a mechanical aortic valve put in as well as replacing my ascending aorta due to dissection/anuerysm. Mine occurred due to pregnancy. I probably would have had problems when I was much older but my pregnancies sped up the process. I actually feel like in a strange way my having this experience now was much better than if it would have happened to me when I was much older. Now I see my cardio once a year. My first cardio told me that I didn't need to have annual echos but I have had to choose a new cardio and he feels that I should periodically have a chest ct scan to keep an eye on things and make sure everything stays A-OK.
I agree with Rob that we have all had experiences that make us think about our mortality more often than the average person. It is scarey sometimes but you are here today to enjoy life and everything it has to offer. Nobody knows when their time will be. I am a worrier by nature and have periods where I worry quite a bit about that but then I am able to realize that being seen by a cardio on a regular basis as well as by my internist every six months is a good thing and if anything is ever found at least it would be found earlier than it would have been if I wasn't being checked out on a regular basis. Who knows, all in all we valvers may be here longer than people think because we keep such a close eye on our health.

Take Care!
Gail

 

[BDMc]

Aortic Aneurysms

Aortic Aneurysms

Hi Jonathan, I had an ascending aortic aneurysm. My Surgeon said he thought the pull of the aortic walls from the aneurysm, was what kept my valve from working(held it open). Never got a diagnosis as to what caused it. Mine was so thin the surgeon said he could see the blood through the wall of my aorta. I got a valve that was recalled just a few months after my surgery. When I asked aboout getting it replaced, I was told they didn't want to try that!= wait til it goes, and that's it! It's been over 21 years now, and from what I've been able to find on the net, my valves average life is 13 years. I've been waking up at night hearing the valve, and wondering how long I have... I am considering trying to get a second oinion, though I sure don't relish the idea of another operation. I also am very grateful for the years I've had, but as you said the shadow/cloud is always there. This site has been a wonderful haven for me. I hope it will be for you too. Best of luck, Brian

 

[MrP]

Jonathan,
I can definitely relate...life is short. Since my valve and aneurysm surgery, not a day goes by that I don't think about this and how lucky we are to be here. Seems like we have been given an extension to life for a reason. You are not alone!
MrP