Hello

I am a 45 year old fit and active man and just been told I will have to have a replacement aortic valve so I am obviously very concerned. Can anyone give me any tips or advice?
I dont relish the idea of having my chest ripped to pieces, some valves last longer than others,comadin will have to be taken but it is very bad for you apparently !!!
There are so many questions and it would be good to hear from someone who is going through (or has been through ) the same dilemma.

Thanks for taking the time to read this

chriso4905

Hi Chriso,

I have been on the board since I found out last Nov that I needed a Mitral Valve replacement. I don't think you will find a lot of people who have gone through this, I havent. Do you know when they are going to do your replacement? Have you decided on a mechanical valve for sure? I was wondering if they would even consider a pig valve in someone our age (I am 43). My cardio says I have maybe 5 years before I have to have to replacement. Are you having any symptoms now, or are you just waiting like me? The hardest part for me is waiting. In a way I wish I was going ahead and doing the surgery now, but I am so worried about it. I am sure you are as well. I wish we both had someone who could tell us that it isnt as bad as we might be worried it is....lol. Did your cardio say anything about repair, or is replacement your only option?
Mileena

my son had an aortic valve replacement at 3 1/2. he had the ross konno procedure where his aortic valve and subaortic region were removed and his own pulmonary valve was put in the aortic position. then a cadaver valve is put in the place of the pulmonary valve. i wonder if your doctor would consider that option. nick's cadaver valve has lasted 10 years so far and is just now starting to leak and become calcified. so he'll need it replaced soon.

the reason they do that instead of just putting the cadaver valve in the aortic place is because the aortic side has higher pressure and the cadaver valve couldn't tolerate that.

i hope everything goes well with your surgery.

Hi Chriso:
I understand your anxiety as I was there on November 22/05. I am now 60 years old and because of my age I had to make the decision as to type of valve, mechanical or biological. I chose the pig valve due to the fact I was not comfortable with the realization that I would have to be on an anti-coagulant for the rest of my life if I chose the mechanical valve. I am still happy with that decision even though I know it means I may have to have it replaced again at some point in the future. I recently had an echocardiogram and the valve work's perfectly!!
I guess a part of my thinking at decision time was that by the time the valve needed to be replaced medicine would have advanced to the point where they could put a new one in by using a less invasive type of surgery at that point in the future. We'll see if I was right but I'm not going to lose any sleep over it as I'm prepared for the current method as well if it has to be. It really wasn't as bad as I thought it would be, I had myself worked up to quite a state by surgery time and I, like you, looked all over for advice and comforting words. After you get home from Hospital you need help with things we take for granted such as getting your clothes on and sweaters over your head because of course you have to be careful you don't lift you hands/arms too high.The pain was never very bad at all and you have to be sure to do the exercising they want you to do as well as keep your arms close to your body for the first few weeks so the sternum can mesh together as it is supposed to.
Try to relax as it will make it much easier for you. I know it's easy to say but, I can say it because I was there just 15 months ago.
Good luck.

Hi Mohel,

I am so glad you responded to this post. I know you werent talking to me, but I have been looking for someone who had this surgery done. Like I said....I don't want to do it...I am stressing about it (which my cardio said NOT to do). Which valve did you have replaced? Was repair not an option? WHY did you have it replaced....what caused it to need replacing? MY cardio says within the next 5 years I will need my mitral valve replaced. I have rhumatic heart disease, and my valve is now 1.6cm. It should be from 4 to 6. He says this is still considered MILD to MODERATE. They want to wait until it is worse. That worries me too. I dont see him again until NOV, and he says he will know more about how fast my degeneration is progressing then.

Anyway, thanks for the encouraging words. I have read on here of little children and babies having open heart and feel like a baby myself because of the horrible fear I have!!!
Mileena

Hi Mileena:
I'm sorry to hear about what you are going through too, I can understand your feelings as well, but as I said earlier, listen to your Doctor and try to relax, relax, relax, especially because you have so long to think and worry about it, did you say up to five years?
During a routine checkup my Doctor detected a murmur so he sent me for an Echocardiogram which confirmed severe arotic stenosis most likely from a defect I was born with which they call a "genetic heart defect", He then referred me to the Cardiologist where I was told that the valve was in such bad condition that it would have to be replaced as repairing was not an option. You don't think I was in shock?? I didn't have any symtoms whatsoever as I was a regular walker of about 4 to 5 miles a day. The Cardio then sent me to the Surgeon who after much discussion sent me for a battery of testing such as CT Scan, angiogram and blood work for further confirmation to see what he was going to encounter when I was opened up. During these additional tests it was also found that a portion of the ascending aorta would have to replaced as well as there was considerable enlargemen. This thing was just getting completely out of hand, it was beyond belief!!! I kept thinking they must have the wrong guy here, this can't be happening to me, these must be the results for the next guy!!
Day for surgery was decided, in about 2 months time, and I had until that day to decide on type of valve I chose and that's where my next major decision had to take place and of course that's where I indicated earlier that I chose the porcine valve over the mechanical the reason for that choice. I knew that whatever choice I made I would have to live with, and I am happily living with my decision. I can't say I felt a lot of change for the better right away but I am now beginning to feel the difference in many subtle and different ways. I guess I had the problem for so long that I felt that however I felt was the normal way to feel if that makes any sense.
I've rambled on long enough so please don't worry and please take care.

[FONT="Times New Roman"]Hello Christo
It will be 3 years ago next week at age 59 that I had a double bypass and a Aortic valve replacement. I was in the "Glen" Bristol for just 6 days!
The operation has become practically routine.
Yes it was uncomfortable but it is amazing what relief you can get from the humble Parasetamol tablet!
It took me about 3 months to recover and another 3 to get fully fit. Then I was out walking in the woods and climbing the hills again.
I reckon the operation knocked 20 years off my life- I felt, and still do, like a 39 yr old. You should feel about 23!
I went for a mechanical valve called "St Christopher" as I did not fancy being chopped open again in 20 yrs time. I would rather keep taking the pills.
One last thing, the after care in this part of Somerset is teriffic. The rehab course I went on gave me great confidence to carry on with my life as normal.
I hope the above is helpful. If I can help further please let me know.
Regards
samsmiles

Hello Chriso
3 years ago next week at age 59 I was in the Glen in Bristol for a double bypass and a new Aortic valve.
I was there for just 6 days! The op has become practically routine.
Yes, it was uncomfortable afterwards I felt like I had been runover by a 10 ton truck. and I hoped no one would tell me any jokes. But it is amazing what relief you can get from the humble Parasetemol tablet!(Which was all the pain killers they gave me).
It took about 3 months after the op to get out and about (but some people do it in less time). I then spent another 2 months getting fit. (I will never forget the wonderful felling when I climbed up the hill, (where I used to have to pause regularly), without any effort!
I went for a mechanical valve called, wouldyou believe, St Christopher!, Because I didn't fancy been cut up again in 20 years time. I am happy to take my daily pills.
I reckon the op knocked 20 years off my life. So you should feel like a 23 year old!
I hope this has been a help to you. I can be of further help please let me know.
Best wishes,
samsmiles

sam,

Better St. Christopher than St. Jude.

Thank You SamSmiles for that reply, again even though it wasnt directed at me, I am very interested in hearing from people who have had valve replacements. The IDEA has consumed my life for the past 3 months. It took you 3 months to recover??? Gee, I guess my plans of going back to work in a week or two might be a little fast eh?

I want this to be over for me. The worry of it has got to be worse than the actual thing!! I have NO symptoms, and I feel fine! Occasional heart palps and needing a little more sleep than maybe a year ago is all I have noticed. I think I have come more "to terms" with it now.....than when I first found out, but it still bothers me.

I have had people tell me that when you go with a mechanical valve that you can hear an audible "click" at all times...is that true? I dont want a new click.....my head has enough of those. I could have asked my doctor all this, but all he says is we arent going to worry about it right now.....yea thats easy for him to say right?

Is there a major difference in replacing your aortic valve and mitral? I would think that most of the procedure from the patients point of view would be the same.

Again, thank you for replying. When people tell me how well they are doing with valve replacement it gives me hope!

Mileena

Hi Chriso,

I have been on the board since I found out last Nov that I needed a Mitral Valve replacement. I don't think you will find a lot of people who have gone through this, I havent. Do you know when they are going to do your replacement? Have you decided on a mechanical valve for sure? I was wondering if they would even consider a pig valve in someone our age (I am 43). My cardio says I have maybe 5 years before I have to have to replacement. Are you having any symptoms now, or are you just waiting like me? The hardest part for me is waiting. In a way I wish I was going ahead and doing the surgery now, but I am so worried about it. I am sure you are as well. I wish we both had someone who could tell us that it isnt as bad as we might be worried it is....lol. Did your cardio say anything about repair, or is replacement your only option?
Mileena

Hi Mileena,

Sorry for the delay in replying,my life has been fairly chaotic at the moment!!

I have recently been to london to see a surgeon privately, get a second opinion and to find out about having the replacement done in a less invasive way. He confirmed what I had already been told,and that it should be done sooner than later !! I have been advised that a tissue valve is the best option for me as I have a fairly active lifesyle,both at work and play,and not require the taking of warfarin/coumadin.Apparently it was the norm only about 5or 6 years ago to replace with mechanical valves( about 80%) but now tissue valves are much more common ,even in younger patients. He also said that he can do the procedure through a 3 inch incision,which I was much happier about !!
I have decided to go ahead with his recommendation and will be having an angiogram tomorrow and the valve replacement surgery next Monday, but i will have to pay!! Just like you i found the wait was killing me so here goes!

I will keep you informed of my progress so watch this space.

Thanks to everyone who has responded.

Chriso
He

Thanks for your reply its very comforting!!!

Wow, thats good news Chris, that you dont have to be opened up. 3 inch incision sounds great compared to the alternative. I hope by the time I have to be in your shoes that I can be done that way as well.

Good Luck and God Bless on this! Please do keep us informed because like I said I am going to be there soon.
Mileena

[FONT="Times New Roman"]Hello Christo
It will be 3 years ago next week at age 59 that I had a double bypass and a Aortic valve replacement. I was in the "Glen" Bristol for just 6 days!
The operation has become practically routine.
Yes it was uncomfortable but it is amazing what relief you can get from the humble Parasetamol tablet!
It took me about 3 months to recover and another 3 to get fully fit. Then I was out walking in the woods and climbing the hills again.
I reckon the operation knocked 20 years off my life- I felt, and still do, like a 39 yr old. You should feel about 23!
I went for a mechanical valve called "St Christopher" as I did not fancy being chopped open again in 20 yrs time. I would rather keep taking the pills.
One last thing, the after care in this part of Somerset is teriffic. The rehab course I went on gave me great confidence to carry on with my life as normal.
I hope the above is helpful. If I can help further please let me know.
Regards
samsmiles

Hi Samsmiles


Thanks for your reply! How are you getting on with the warfarin?
I understand you cant have a glass of wine and have limiting lifestyle. is that correct?

Thanks for your encouragement!!!!

Chriso

My father has been on Coumidin for 11 years and within a year he will have a valve replacement surgery.

call the office of Dr. Toby Cosgrove of The Cleveland Clinic. If your insurance will cover it, (probably out of network though) it's supposed to be by far the best facility in the world for valve surgery. Good luck