Another Surgery?!!

[Eric]

On September 12th I had ascending aortic resection surgery for an aneurysm that was caused (probably) by my BAV. The plan was for my surgeon to make a game-day decision when he got in there as to whether to replace my BAV valve as well. The pre op test results showed the valve to be in good condition and the thought was that if it could last me another 8, 10, 12+ years, he would leave it in. As it turned out, the valve looked perfect to my surgeon and he made the decision not to replace it. I now have a dacron tube in place of my ascending aorta.

Last week I went to see my cardio because I was not feeling well (I thought it was from the meds) and to talk about my meds. The surgeon put me on a very high doses of meds post op and has been monitoring me ever since the surgery - 75mg of atenolol, 15mg norvasc and 240mg diovan. After taking my bp, which was 120 with my HR at 54, the cardio last week decided I was overmedicated and recommended I reduce the dosages. He then decided to do another echo after hearing a murmur. The results of that echo show a new finding - moderately sever aortic regurgitation! This surprised everyone as just 6 months earlier it looked so good.

I'm going for more tests next week and after reviewing this latest echo study, the surgeon wants to put me on even higher doses of meds to try to curtail the progression. I'll have to see what my cardio thinks of the higher doses, but another surgery in the short term looks inevitable. I can't believe it! I'm angry, really pissed and also scared of another surgery. Anybody ever hear of something like this?

 

[Phyllis]

Eric,
I am so sorry to read this and I don't blame your for beiing "pissed". Hopefully, the moderate regurgitation will remain moderate and you will get the 8 to 10 years you expected to get out of the bav. All our best wishes are coming your way.

 

[geebee]

Eric,
If your lifestyle tolerates the meds, increased doses might be in order and slow the progress of the regurge.
A number of us have had to go through a second surgery within a couple of years of the first for various reasons. It is never a good thing to hear other than better to know there is a problem and get it fixed than to not know and end up worse.
I do understand your emotions and please allow yourself all of them. In the end, you will do what is needed to stay alive.
I will pray that the meds are something all the doctors agree on and that they make a huge difference in the surgery outlook.
Take care.

 

[rbl1999]

Hi, Eric, I am so sorry you have to deal with this, I remember when you had the surgery in September and you had such a good attitude.. All you can do at this point is to keep on top of everything and try to keep as positive as you can. We are all here for you... Rose

 

[Marguerite53]

Hi Eric. Of course you are angry and frustrated! Who wouldn't' be!! Don't overdo that, though, it's counterproductive to all the meds you are on!! I think there are several people here who have gone through similar short term re-operations. Hopefully they will catch your post and chime in.

It is a difficult time for you and probably the best you can do is stay optimistic and research all of your possiblities, get some new opinions, perhaps. Reaffirm to yourself that this is just a rocky time you are travelling through but there will certainly be a promising future for someone as strong and determined as yourself.

Good luck. Keep posting as we are all here for you in any way we can be.

Best wishes. Marguerite

 

[PJmomrunner]

Awww, Eric, this makes me feel sick. I can only imagine what you're feeling. I hope an adjustment of your meds can buy you some time. Wishing you all the best with fingers crossed.

 

[Ross]

Eric not exactly like you had, but almost. When my aneurysm blew it took part of the valve with it. Instead of replacing the valve, they gave me the conduit and fashioned a temp repair of my aortic valve. I left the operating room with moderate regurg. It took 6 years to hit severe, but believe me, I did not look forward to another surgery whatsoever. Unfortunately, we know what we must do. My second time around was no easier then the first, so I have a great idea of how you feel. Sorry to hear it.

 

[OldManEmu]

Eric sorry to hear that the valve is leaking so soon after surgery. The repair was thought to be good for 10+ years and unfortunately this hasn't been the case. I am of the view that if you have to be that heavily medicated that you feel bad all the time, the inevitable redo is better done sooner than later. It's no fun having surgery; however neither is feeling bad all the time. I look forward to your update after further tests.

 

[Der Biermeister]

I agree with OldManEmu -- getting my drugs reduced is a PRIMARY GOAL of my surgery -- only two days away now.

Get it fixed and hopefully you can cut way back on the meds.

 

[Karlynn]

Eric, so sorry to hear your news. I am also leaning towards Emu's mindset. You are a very active person and I'm wondering what the increased medication is going to do to your lifestyle. If it were me, I'd want to know when the doctors feel my body would tollerate another surgery well (since you just had yours 6 mo. ago) and then I'd aim for that. There's distance from surgery to be weighed against what regurgitation is doing to your heart as you wait.

There's moderate regurge and then there's moderately severe regurge, which is a rating in the 'severe' range. I would also want to know if this mod'ly severe regurge is placing any undo strain on your graft.

 

[Randy & Robyn]

You're not alone, Eric. Although I didn't have the aneurysm I did have an aortic valve repair go bad last October. I was back to severe regurgitation two weeks after my surgery. Along with that, because they wrongly suspected endocarditis, I was forced to endure eight weeks of some very nasty antibiotics.

I had another surgery nearly eight weeks ago, got the valve replaced, and I am already jogging and feeling 99% recovered. Don't give up hope. This is a disappointing setback for you but, judging from your posts, you are in great shape and will bounce back from a 2nd surgery quickly and completely.

Good luck,
Randy

 

[Superbob]

Eric,

I haven't had a resurgery (no need detected --yet) but I just wanted to say that's some powerful personal testimony you've gotten from Randy. Being in great shape should work to your advantage. We'll all be sending you our prayers and best wishes here.

Cheers,

Bob

 

[braveheartlad_1967]

Hi Rob

I'm so sorry to hear of your experience. I'd be jolly angry if I were in your boots. My experience is different, but I still ended up feeling the same way as you feel right now.

I had my original Coarctation of Aorta repair at age 17. That was fine until I hit 30 years of age. I was very breathless, chestpain and generally very unwell. The cardio did a cardiac catheter and found my bicuspid aoric valve was severe moderate regurgitant and that I had a 5.5cm ascending aortic aneurysm. Furthermore I had a 6cm aneurysm in my thoracic descending aorta at the site of my original repair. They decided to operate. So I had open-heart surgery, during which they replaced my aortic valve and ascending aorta with a 27mm CarboMedics aortic valve and dacron tube graft. The surgeon hadn't dealt with the second aneurysm and more threatening aneurysm. I was told I didn't need to worry about it and that they would monitor once a year.

A month after the operation I became so concerned about the other aneurysm as I had this gut feeling they were lying to me. I stumbled across a Canadian website (www.cachnet.org) and found some information. I emailed the webmaster, who is an international cardiologist. He told me I urgently needed a second opinion with a Congenital Heart Cardiologist and recommended someone here in London. I was seen and an MRI scan performed. I had to have emergency open-heart surgery. Had I not got that second opinion and had the surgery I was told I wouldn't be here today.

I can't describe my anger and upset towards my previous cardiologist and cardiac surgeon. I was raging and it's taken me years to get over it, well I'm not really over it. The legal system here in the UK is an ass and they told me outright that I would never beat them.

I'm telling you all this to let you know that I understand how you must be feeling.

I'll be keeing you in my prayers and thoughts.

Jon
Sussex, UK

1985 - Repair Coarctation of Aorta (Dacron Patch Technique)
1998 - Aortic Valve+Root Replacement
1999 - Resection Thoracic Aortic Aneurysm (site of first repair)

 

[Eric]

Eric,
If your lifestyle tolerates the meds, increased doses might be in order and slow the progress of the regurge.
A number of us have had to go through a second surgery within a couple of years of the first for various reasons. It is never a good thing to hear other than better to know there is a problem and get it fixed than to not know and end up worse.
I do understand your emotions and please allow yourself all of them. In the end, you will do what is needed to stay alive.
I will pray that the meds are something all the doctors agree on and that they make a huge difference in the surgery outlook.
Take care.

Thanks, Gina. I agree that I would rather increase my meds rather than have another surgery but I'm knocked out as it is - always dizzy, spacey and lightheaded. I'll have to see what my cardio says tomorrow and then Dr. Raissi and Wednesday, but I'm not ready for another surgery. Ultimately I'll do what I have to do.

 

[Eric]

Eric not exactly like you had, but almost. When my aneurysm blew it took part of the valve with it. Instead of replacing the valve, they gave me the conduit and fashioned a temp repair of my aortic valve. I left the operating room with moderate regurg. It took 6 years to hit severe, but believe me, I did not look forward to another surgery whatsoever. Unfortunately, we know what we must do. My second time around was no easier then the first, so I have a great idea of how you feel. Sorry to hear it.

Thanks for your perspective, Ross. If I have to do this soon, I hope it's no harder, but I'll do what I have to do to stay alive and happy.

 

[Eric]

Eric sorry to hear that the valve is leaking so soon after surgery. The repair was thought to be good for 10+ years and unfortunately this hasn't been the case. I am of the view that if you have to be that heavily medicated that you feel bad all the time, the inevitable redo is better done sooner than later. It's no fun having surgery; however neither is feeling bad all the time. I look forward to your update after further tests.

Hey OldManEmu. I agree with yuo on the meds. I'm a total spacecase on my current dosage and Dr. Raissi still wants to increase it, but I'm meeting with him in a couple of days for another examination and some more tests.

I'll keep you posted.

 

[Eric]

I agree with OldManEmu -- getting my drugs reduced is a PRIMARY GOAL of my surgery -- only two days away now.

Get it fixed and hopefully you can cut way back on the meds.

Good luck, buddy. I'll be thinking of you.

 

[Eric]

Eric, so sorry to hear your news. I am also leaning towards Emu's mindset. You are a very active person and I'm wondering what the increased medication is going to do to your lifestyle. If it were me, I'd want to know when the doctors feel my body would tollerate another surgery well (since you just had yours 6 mo. ago) and then I'd aim for that. There's distance from surgery to be weighed against what regurgitation is doing to your heart as you wait.

There's moderate regurge and then there's moderately severe regurge, which is a rating in the 'severe' range. I would also want to know if this mod'ly severe regurge is placing any undo strain on your graft.

Karlynn, I agree. I have no energy to go out and play volleyball or even go out at night. I'm not ready for another surgery, but "ready" is subjective. I'll be ready when I have to be, but I hope I can put it off until I'm stronger. I'll have to ask Raissi about the strain on my heart. Thanks for that!

 

[Eric]

You're not alone, Eric. Although I didn't have the aneurysm I did have an aortic valve repair go bad last October. I was back to severe regurgitation two weeks after my surgery. Along with that, because they wrongly suspected endocarditis, I was forced to endure eight weeks of some very nasty antibiotics.

I had another surgery nearly eight weeks ago, got the valve replaced, and I am already jogging and feeling 99% recovered. Don't give up hope. This is a disappointing setback for you but, judging from your posts, you are in great shape and will bounce back from a 2nd surgery quickly and completely.

Good luck,
Randy

Randy, How was that second surgery for you? What kind of drugs are you on (the legal ones? Thanks for the encouragement, buddy.

 

[Eric]

Eric,

I haven't had a resurgery (no need detected --yet) but I just wanted to say that's some powerful personal testimony you've gotten from Randy. Being in great shape should work to your advantage. We'll all be sending you our prayers and best wishes here.

Cheers,

Bob

Thanks, Bob.