coarctation and bicuspid valve

[greatandwell]

hello, i want to know what average life expentancy is for some one who has coarctation of the aorta, repaired as young child, age 5, with bicuspid valve, will probably need replacing in 10 yrs time, am currently 35. On internet it states tha coarctation can reduce life expextancy, can any one be more specific ?? any info relating to above would be great. I have had mri mra for head too, what is that all about ??  thanks , great and well x also want does it mean if left ventricular dimensions at the upper range of normal ?

[greatandwell]

Hello Cindy, I hope your return to work goes well, I wish you lots of luck. It sounds like u have been through a fair bit and you sound so much braver than me ! I live in the UK. I am regularly monitored by a cardiologsit annually who does echo and ecg every year. I have 3 children , all by ceasaeran section.
I feel that every time I see my cardiologist more information seems to come to light and that makes me feel even more anxious. They ask me about being short of breath and palpatations etc. I find I am so scared they will  say i need surgery I end up quickly saying I am fine, leave the room and then worry !!
Silly me really.I may try and get hold of this book you have mentioned.They told me that my recent mri mra was to check for re narrowing due to the coarctation , to evaluate the bicuspid valve and check the wall of aorta. I have my fingers crossed it all come s back ok, i am sure it will.What do u do work wise ? Will you be monitored now ? I am still wondering about life expectancy for peolple with our condition, I am sure it less than unaffected peers. I really have enjoyed talking to you, hope you have a good return to work place, have you met other people with coarctation/ bicuspid ? take care and very best wishes great and well

[cindy46]

The doctor said that a ct scan would give him the best picture of how the repair looked now.  After valve replacement, I can no longer have an MRI done on anything. They tell me that the magnet used in the MRI would not be good for my mechanical valve. It could cause it to malfunction.  I was 46 when I had to have mine replaced.  The doctor originally told me that I would have to have it replaced at around 50 yrs old.  I was not monitored too closely prior to replacement.  They just kept telling me that if I had a problem to let them know and come in then.  I had an echo done in Dec. 2005 and that was when they told me that I would have to have it replaced at around 50 yrs old.  Then earlier this year, I started to not feel all that great.  I was tired all the time, would get short of breath and one day I had an experience that made me call the doctor.  That day I just felt weird in my head, kind of like some sort of pressure that wasn't right and then I was sitting down and bent over to pick something up off the floor and got a terrible pounding feeling in my head and started to have real bad heartburn.  I called the doctor and couldn't get into see him until the next day.  So I left work early and went home and laid down and took a nap, felt a little better when I got up.  I would not recommend anyone do that, it was probably the stupidest thing that I could have done.  I should have gone to the emergency room and had them check me out.  When I did see my regular doctor the next day, he scheduled a nuclear stress test for me.  When I finished the second part of it (it took 2 days to do it all), I was barely home for 2 hours when the doctor's office called me and told me to go see the cardiologist and tell them that the test was abnormal.  Then the cardiologist said that he wanted me to get an angiogram done and they would probably have to put a stent in somewhere.  He thought it was an artery clogged.  I asked about the valve and he said that the stress test doesn't look at that and that we could check on that when they were doing the angiogram.  So I went to get the angio done and while on the table for that is when they discovered how bad my valve really was.  Good news, my arteries are clear as a bell and have no problems.  The valve was another story.  They triple checked the measurements and still came up with a 0.6 when a normal one will measure 4.  So they contacted the surgeon right away and had him look at things and come to my room to talk to me.  He told me that we would have to replace the valve within the month.  He told my husband not to let me drive and to really watch me if I bent over and stood back up because I could pass out.  That was when I got scared.  I started to check into everything I could on the computer and that was when I ordered the book I told you about.  I went through the ct scan and x-rays and blood test and a whole lot of stress filled days and nights for the next few weeks until the surgery.  The surgeon told me that I had an anerisym of the ascending aorta and that he would decide when he was doing the surgery if it needed to be fixed now or not.  He did fix it during surgery, told me there was no sense in waiting and watching it for the next year or so.  It had to be fixed and could not fix itself, so he did it at the same time as valve replacement.  I agree that it is alot to get your head around.  I really didn't want to have to do this now, but guess I didn't really get a say in things.  I do not live in the uk, I live in USA.  Where do you live?  Tomorrow is my big day for going back to work for 4 hours/day.  Kind of scary, not sure how that will go.  Guess I better get things ready here for that.  Cindy

[greatandwell]

thank you for response . This is first time i have communicated with some one with same condtion so i am very pleased to communicate ! did you feel differently after having the valve replaced, have you had an mri / mra, what is difference with ct scan . i do not smoke... I think i have 10 years possibly longer b4 valve replacement and different approaches have been mentioned. I personally find prospect of surgery totally terrifying. I think doctors are fantastic but forget us patients can be terrified. do you live in uk ? how regularly was your valve monitored prior to its replacement ? are you aware of the anersym link with coarctation ? Mentally, i think it is all a fair bit to get your head around thanks great and well, ps glad to hear you are better , wish u well

[cindy46]

With the valve replacement I was in the hospital for 4 days, it was no picnic, but it was not unbearable.  My worse pain came from the fact that I was a smoker (didn't quit until I walked into the hospital), I coughed terrible afterwards.  They tell me that it was my lungs clearing out and healing from all the years of smoking.  Thankfully, I had my husband to take care of me when I came home, was very weak.  The best thing is to be well informed beforehand so that you know what to expect.  I bought a book from a website that was very informative and very reassuring.  It tells you that the fear comes from not knowing what to expect.  The website for the book helps too.  It is www.heart-valve-surgery.com  The author of the book is Adam Pick and he went through valve replacement surgery too.

[greatandwell]

thanks for your message. Graet to haer from someone else about similar medical situation. Was the valve replacement horrendous ? Tell me more !! great and well

[cindy46]

I too had a coarctation of the descending aorta repair when I was 9 and then lived with a bicuspid aortic valve until just this past Sept.  At the age of 46 I had to finally have the valve replaced, they used a mechanical valve to replace it and then also repaired my ascending aorta (the wall had thinned out from the force of the blood coming through the aortic valve).  Prior to the surgery, my surgeon had me get a CT scan of the heart and descending aorta.  He wanted to check out the repair that was done, make sure that it was still ok.  He figured that if it needed anything done, he could take care of that at the same time he was in there for the aortic valve.  I have been told that the mechanical valve should last me from 20 to 40 years.  I have to take coumadin every day to prevent blood clots from forming.  
I was always told that the coarctation would have been a problem if I hadn't had it fix.  The doctors said that I would have ended up in a wheel chair by the time I was a teenager.  As far as life expectancy now, it is no different that anyone else since it was repaired.
Good luck.