I am a 29 year old female. I was born with a heart murmur and at the age of 15 had changed to aortic valve insufficency. By 2007 it had became full blown aortic valve stenosis. My gradient then was 72. Now with my latest echo it is 102. I was told yesterday that in the next 6-8 weeks I will have to have surgery to replace my heart valve. I have researched enough to know that I want the mechanical valve. However, I am scared to death about the procedure itself.
I live in Knoxville TN and I have one of the best teams of cardiologists. I will be seeing more of them in the next couple of weeks, but that is not mentally preparing me now.
What happens in surgery?
How large is the scar?
What machines are you put on?
How long are you in ICU?
Is it painful?
Are there restrictions?
Do you feel better after the surgery?
Can you get on disablity for this conditon?
Thank you so much, I am just so scared. I have two small children that depend on me for everything.
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Aortic Valve Replacement Surgery....Need all the info I can get!
- By vhmoriarty
- Posted October 7, 2009 at 12:13 am · 8 replies
- In My heart disease - diagnosis and symptoms
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- By scholastic
- Posted October 7, 2009 at 8:22 am
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HI , This is going to be ok. i had this done in June of 06, I am 54 yrs now but was 50 at the time of surgery. I also had several other health conditions ,which put me at a very high risk. I was told I had a 50/ 50 chance of survival , but if I did not have the surgery I would Die within a few days. I know how scary this can be, but you are young and have that in your favor. I have a bovine valve (cow) was not given a choice on this, because it became a emergency for me.
You have time to research all this so that is good.
My scar is about 6 inches, and it is low enough that i can still wear some V neck shirts without noticing the scar.
The surgery was about 6 hrs. for me, you are put on the heart/lung by-pass machine for less than 2 hours. You will have the ventilator still in (more than likely) when you are in the ICU , but will be weaned off soon and it taken out. ( I was on it for 2 days but I have COPD) you will come off sooner. Honestly this was the worst part for me, that ventilator sucks. ICU is usually 24 to 48 hours. Then to a regular room for a couple more days. You will be getting out of bed for walks soon after the surgery (next day) . I had only driving restrictions, no lifting, or pulling (like trash out the can, or clothes from washer) for about 6 weeks. But your body will let you know not to do this anyway, if you want to stay pain free. You do feel better eventually(after recuperation time). The doctors have you on pain meds in the hospital (strong meds.) so i felt little pain till i was at home and then only mild pain. You will not get disability for this condition. even though it is considered to be CHF. I am 3.5 years post op, and still have what is called "pump brain" ( look this up by google). The doctors will tell you this does not happen, but just ask any open heart patient about it and they will tell you it does exist. I can live with this just as many other people here do, because I am alive and loving it. You will need help with the sm. children for a while, I hope you will have this help. I had a nurse come daily for my first week home and my insurance paid for it. Check into this as well. Good luck and keep us posted ,, Terri
- By kk_stl
- Posted October 7, 2009 at 2:04 pm
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My mother had AVR in May of this year. She is 79 and doing great!
Are you experiencing symptoms? There are different theories on when you should get it replaced depending on whether you are symptomatic or not.
I am glad you have complete trust in your cardio group but you should still get a second opinion for such a major procedure.
There are 3 types of incisions they can perform...mini sternotomy is what my mom had done, full sternotomy and mini thoracatomy. If you are electing a minimal surgery the experience of the surgeon is paramount regardless of the training they received.
They'll want to make sure you don't have blocked arteries and will do a catheterization test so that may limit your choice of surgery.
Each patient heals differently but at your young age I would expect you to be on the fast track. My mom had little pain after surgery but you might want to have someone nearby in ICU in case you need it. There are no nurse call buttons in ICU and while sometimes looking at the monitors will tell them if you are experiencing pain, it's not fullproof.
Your restrictions will be less if you can get minimally invasive surgery.
My mom hasn't noticed any improvement but at her age she is more pre-occupied with other ailments like arthritis and incontinence. We noticed she doesn't fall asleep as much during the day. Her IBS also improved probably from the improved blood circulation. At her age her decline in mobility became a way of life. But she is working out 45 minutes 3x a week in cardiac rehab so we are quite pleased with her progress.
I viewed a video of AVR I found on the internet. They cut out and remove the valve and sew the new one in place. You might want to start donating blood now if that is an option for you.
My mom did alot of worrying before the surgery too but she is glad she did it. It's a major procedure and you will need to regain your strength over time but you should do fine. You have your youth on your side! It's also very common to experience depression after such a major surgery. Don't be afraid to ask for help.
I remember reading posts from other younger patients like yourself. Hopefully, they'll see your post and reply.
Best of luck and keep us posted.
KK
- By Anne61
- Posted October 7, 2009 at 2:10 pm
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Hi VH, I had a mitral valve replacement 2 years ago
(at 60). I opted for a bovine tissue as opposed to mechanical valve.
There is a good book by a man - last name Peck who went thru the valve surgery. I'm sorry I don't have the name of the book or his full name - I'm away from my home computer and all that stored info. I found it useful before my surgery.
Bear in mind that everyone is different. You have your youth going for you and that is a definite plus. Your ultimate recovery should be shorter than for us older folks. It took me a good year before I could truly say that I was better than before the replacement. My scar is about 8 inches and the top portion has almost faded into non-existence.
Take cardiac-rehab if at all possible. It will do wonders for you physically and mentally.
One of the most important bits of information I can give you is to listen to your body. You will have good days and bad days. Don't let the bad days get you down. The good days will prevail.
Let us know how you're doing. Together we're stronger!
- By vhmoriarty
- Posted October 7, 2009 at 3:22 pm
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I have been expierencing symptons for about a year now. When I was pregnant they were so bad they had to admit me in 2007. The symptons supisided and now are coming back and my gradient is much worse. I have been followed since I was 15 by about 6 different doctors, so I pretty much have a strong group of doctors.
- By Anne61
- Posted October 8, 2009 at 4:57 am
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The author of that book is Adam Pick - still can't remember the name of the book. There's also a website - valvereplacement.com that has a wealth of information for young and old, male and female.
- By vhmoriarty
- Posted October 8, 2009 at 4:32 pm
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The doctor called today and wants to talk to me about a Procedure....called the Ross Procedure. It tends to be leaning towards younger patients. Does anyone know anything about this type of procedure?
- By kk_stl
- Posted October 9, 2009 at 7:45 am
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I first learned about the Ross procedure when I came across the book and blog by Adam Pick as somebody noted above. I believe it involves using one of your other valves. It gives you the freedom of not having to take the coumadin with the mechanical valve. The thought is that a cadaver or human valve holds up longer than a synthetic valve made from an animal.
Those who don't care for the procedure argue why endanger two valves instead of just one.
As with any procedure, you want someone who has done alot of these surgeries with success.
I was going to mention the Ross procedure to you in my earlier post. I'm glad your doctor is presenting you with all of your options. That is the sign of a good doctor so that you can make an informed decision.
They are making advancements in valve surgery every day. Your doctors should let you know what is in the pipeline as that could influence your decision also. You can also research the clinical trials website yourself. You are lucky to have some time on your side before you have to do something.
KK
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