Enlarged Ascending Aorta

[sam]

Hello All. I was wondering if anyone had any of the same CHD's as I. My CHD is found in One out of Ten Thousland, man why can't I have those odd's when it comes to the lottery. Anyway, in 1986 it was discovered that I had a Coarctation Of The Aorta, I will discribe that as my Decending Aorta looking like an hour glass. My blood was not going into my leg's as it should have been, my blood was staying mostly in the upper part of my body. So at age 25 I had Coarctation Repair, a part of my Decending Aorta was replaced with Dacro. Now 16 years later my graft is narrowed at each end, and my Ascendinf Aorta is dialated to 4.8. Because I have a BAV also the DR said that they would replace the BAV at the same time even though the BAV is fine. The have been finding that in CHD"S like mine that have had the Aorta replaced usually end up haveing to have the BAV replaced after the Aorta is replaced. For some reason after the Aorta is replaced the BAV starts going crazy and within 1 year more surgery is needed to relace the BAV. So as it stands now when my Aorta reaches 5.0 , or if I have any problems I will have my Ascending and Decending Aorta replaced and my BAV all at once. I feel like that song "Should I stay or should I go now, if I stay there will be trouble, if I go it will be double" My Cardi told me that if I could not live like this to give him a call and we would talk. Sure living like this and wondering if my Aorta will burst befour I have a chance to have it fixed is a scary fealing. And knowing the risk of surgery and the pain associated with it is scary. I don't have to have another MRI untill June. It is going to be a very long Winter. Thanks for listening. I am sorry this is so long, I am also sorry for the spelling , life would be great if there was a spell check on all the sites as this.

 

[Ross]

Don't be sorry for anything!

It's a choice you'll have to make and I think you already know the answer. If nothing is done, the end is near. If something is done, you have more chances of life left. It's always hard to make these decisions. On my first surgery, I had no choice. It was do or die. The second time, I had a choice, but the choices were much like yours. I chose to do. I had a very rough time, but I made it and I'm here to talk to you about it. I have the feeling it will be the same for you.

If you want to talk, I'm more then sure everyone here will add a little something to help you along the way.

Welcome to the family of those who have been there, done that, and know what your thinking and feeling.

 

[Gnusgal]

Sam,

I do not have the same CHD as you, but I do have multiple complex CHDs and know the feeling you are going through. I was told 5 years ago that the surgery I had to repair my ASD and VSD would probably mean I wouldn't need the transplant other doctors had predicted for me down the road. At the time I felt great, but got steadily worse in the following years. I found out that I will never be able to be "fixed" and all the surgeries from now on are just an attempt to put off transplant a little longer so technology can get better. When I talked to the surgeon it was his opinion that the surgery I had 5 years ago actually quickened the need for transplant, rather than putting it off. He had talked about taking down the repair and putting me back the way I had been, but decided that there was too much damage to the ventrical and it wouldn't help me after all. So instead we replaced my tricuspid valve with a St. Jude's mechanical. It is difficult being the "pioneers" when it comes to ACHD. There isn't a precident set on how to treat us, and no one knows what the long term effects are of these surgeries on us. I say trust in your doctor and your gut. All you can do is go with the best information you have at the time. Unfortunately, we don't have crystal balls we can look into and tell the future. You'll be in my thoughts and prayers. Just let me know if you need a virtual shoulder to lean on.

 

[Nancy]

Hi Sam-

My husband is the patient here and he doesn't have the same problems as you do, but he sure has had his share of some pretty terrible things.

He had rheumatic fever as a teen and is 71 years old now. He's had 3 valve surgeries, 2 lung surgeries, serum sickness when he was critically ill and almost passed away, a gallbladder surgery gone bad which required a second surgery and then was followed by a total bleedout. That time he came about as close to dying as I ever want to see. He has CHF, Cardiac Cirrhosis, Pulmonary Hypertension and Afib and has a pacemaker. And like so many others here, he's a real warrior and has managed to dodge all those bullets. When he's had to face surgery to correct something or to save his life, he never hesitates because the surgeries he's had were to save his life. Sure, he knows it'll be tough and maybe a little painful (although the pain is well controlled) and he'll have to go through recovery and wait for his body to heal, but he wouldn't be here if he hadn't gone through with it. I've asked him many times if he was ever fearful when faced with surgery, and he said no, that he didn't want to live the way he was and wanted to have a chance at feeling better and he knew that surgery was the only way to do that. Some of his friends who weren't as ill as he's been have passed on because they didn't want to face surgery. Life gives us some pretty serious challenges, but you know what? Surgeons know how to fix you up. They can really take care of your problems. And the best part is that your body can heal itself after surgery.

If you have an opportunity to have your body fixed up, why not "go for it". Your life will be so much better and you won't be sitting around waiting for something to happen. The sooner you can get it over with, the sooner you can start to enjoy your life again.

I wish you well, and hope to see you here often.

take care,

 

[EVELYN]

Hello Sam, and welcome!!

I guess Nancy and I share the same philosophy, and I certainly couldn't say it as eloquently as she put it, but basically, YOU'RE worth being the best you can be for the longest you can be that way. My husband had AVR in June and he, too, questioned whether he should have the surgery or wait a bit longer---we're both so very glad he had it. It seems as though we have so much life ahead of us now. Yes, it was quite a challenge, yes, it was a big decision, and yes, there were a few bumps in the road, but he feels better than he's felt in quite a long time.

I wish you the very best in coming to your decision, Sam. If we can be of any help, please don't hesitate to let us know. That's the best part about this forum, we are here to share, listen, and support. There is such a wide variety of expertise on this site that you will get an answer to any question you ask.....

Good Luck with your decision, I know it will be the right one for you.

Evelyn and Tyce