Aortic valve replacement

[Margaret A Biddle]

My brother is 34 years old.  We have known for approx. 10 years that he will require aortic valve replacement.  I had him return to his cardiologist earlier than his regular appt. because of lower extremity edema in his ankles and feet.  Also he had be complaining of increasing fatique.  He will be scheduled for a TEE next week because the initial test taken showed significant change, increased leakage.  It appears that surgery may be very soon.  It is a major concern about the safety because of a recent family tragedy.  In April my granddaughter was born.  We knew that she had Tretrology of Fallot prior to birth and was assured by physicians at A.I dupont Hospital for Children that the surgery was very successful and that percentages were very good for her.  Needless to say, she died three days after surgery.  I really don't know if it was her condition or the fact that they had to change the heart/lung unit the day before her death.  No one from the hospital has contacted us even to see how my daughter has handled the death.  So you should be able to understand our concerns about the upcoming probable surgery at our cardiac unit at Christiana Care.  My question is should my brother have another opinion from another facility?  Should he go to a Philadelphia Hospital? Or even out to your facility?  I am going to ask Christiana Care the questions that you suggested on the info site, but since he is only 34 years old will I get accurate mortality percentages? My parents and siblings are very concerned it is just seems so soon after Paige's death to have to face his situation which was not suppose to occur for at least ten more years. He took Paige's death very hard and is very scared even though I am trying to reassure him that it is totally a different situation. We seem to have lost alot of our confidence in our local facilities after the lack of compassion we felt from our Children's Hospital.  Am I just still too much in morning to look at the situation logically?  Please give a few suggestion if you are able.  Thank-you in advance.  MAB

[CCF CARDIO MD - DLB]

It is a great tragedy that your granddaughter died. I am sure, however, that the doctors and nurses caring for her were also quite sad; nothing is as upsetting as having a young patient die. Nevertheless, if your brother's condition appears to be deteriorating and if surgery is recommended, it would not be a good idea to postpone this for too long. I do not think your granddaughter's death should influence your choice of hospital, but if you do feel uncomfortable going back to the same hospital so soon, it would be reasonable to go to Philadelphia. Your brother would also be welcome to come here. We do a lot of valve surgery.

[Todd W]

Sorry for your recent loss.  I was 33 when I had aortic valve surgery (aneurysm and valve repair). I went in with good health with very mild symptoms. There is certainly some risk with this major surgery, but it should be minimal with  his age.  Life after surgery will be much better, especially if he is feeling symptoms, but also because it will be over (less stress).  Recovery will likely be quite fast.  After a couple of months recovery, he'll feel years younger.  Good Luck, try to keep a positive attitude - I think it helps.

[Ben, Ohio]

First of all I am very sorry to hear about your loss, I lost a nephew who was premature and it is very difficult.
I am a 27 year old male, in what I thought was outstanding physical condition. I am 6' 5" 245lb. and an avid bodybuilder. I was born with what I was always told was just a minor murmur. I had gone the last 10 years without doing my annual check-up with a cardiologist.
I was talked into going back to have my valve looked at by a local cardiologist. He did numerous tests and left me with the feeling that there were no immediate problems, until he got the results back from the MRI. At that point he sent me to CCF. (I am currently waiting to here from my dr. at CCF on his reccomendation of a surgical date) I have been diagnosed similar, aortic regurtitation (bad) and aortic arch aneurysm.
I am scarred just as he is, you wouldn't be human if you weren't. But, my point to this whole thing is to let your brother know that there are alot of us out here going through very similar situations, and as near as I can teel there are two ways to deal with this;
One: worry yourself to even higher Blood pressure and upset your family even more     or
Two: Be as possitive as possible and continue with your life taking care of yourself and reassuring your family and self that everything will be OK.
The anxiety that your brother is going through is not easy to deal with, but if he is interested in a pen pal I can be reached at [e-mail] or ***@****.
If anyone reading this has any information to help MAB's brother or myself, please contact me.
Staying positive,
Ben

[Shannon to Peter]

Guys, I know what you're going through.  I went my whole life thinking I had a minor murmur ("functional, no problems associated") until Oct. '98.  Hadn't been seen by a cardiologist for at least five years mostly because I couldn't be bothered.  Then started having some tachycardias and went to get it checked out.  First visit prognosis:  you might need surgery at some point.  Second visit (6 weeks later, after going on beta blockers and digoxin): you'll definitely need surgery, maybe within a year or two.  Third visit (following a stress test):  You need surgery immediately -- within two to four weeks.

Needless to say, I was freaked out. I have two young kids and a great husband and life.  No way I was ready to face the fear.  

However...many people on this board and another in Canada (www.cachenet.org/) helped me get through it. I had a million questions as well as a string of fears.  So many people helped me to deal with all of it, gave me answers and reminded me to stay in touch with them...I can't tell you how much it helped.

All this to say -- I've been through open heart (with a surprise in the middle -- they found I had an atrial septal defect that also needed repair!).  Any questions I can answer, from a patient's point of view, please feel free to ask.  My email is ***@****.

Meantime, try to think of all of the things you want to do after your surgery, and how much you want to get to the other side.

best regards

shannon

[andrea]

I too am sorry for your loss.  My husband was born with a bicuspid aortic valve and was told that he'd probably have to have it replaced in his 50's or 60's, but it pooped out when he was 36 (he is now 52).  He chose Stanford Hospital (we live in California) and they only used Pig valves or homographs at the time (now?). He didn't want to have to take coumadin (anticoagulants), because he thought he wouldn't be able to do all the things he routinly did in his life. (this we later realize was an unfounded concern). He knew he would some day have to have it replaced again, but he was more concerned about the coumadin at the time.  He had a homograph put in in 1986. He was very scared before the surgery and felt like he life was shot(terrified infact), but he did just fine. He has since said he is amased at how wrong he was.  Someone else mentioned he much better they felt afterward.  After the recouperation period, my husband was so happy that he had so much more energy.  He never realized how his faulty valve had compromised his life.  He hadn't had anything to compare it to before. The valve that they put in was not perfect and from the begining he had some regurgetation (back floW into the heart).  since it was from someone else, I supose it is hard to tell before hand if is working OK.? In 1992, he had some microscopic clots lodge in his left eye, so he HAD to be put on coumadin. He has since found that the coumadin is not a problem at all and is easy to regulate. In 1993 he acquired asystemic infection that destroyed the human valve.  My husband was firm on the decision to now put in a St. Jude valve, so he would not have to go through the surgery again. This was done at Summit Hospital. California.  The recovery time was much shorter than the first. My husband has these things to say to you that he thinks are of importance. After surgery,DO YOUR COUGH/BREATHING EXERCISES! Although it will be uncomfortable (all surgeries are) it will get you going and out of the hospital quickly. The coumadin didn't stop him from doing anything he wanted to do. If he had it to do over, he would have had the St. Jude put in from the begining.  You can hear the St. Jude valve and when it is first put in you will notice it a LOT.  But YOU DO get use to it and it won't bother you at all. After cardiac surgery it is common to have temporary depression. After the first surgery he had no depression, but after the second he did. He started going for walks which eventually progressed into running (he's been in races!).  He said this helped get rid of the depression. In this case, it might be a good idea to discuss with your doctor the option of antidepressents for a short time, to help with the physical as well a emotional healing process. We both hope this is of help in your decisions.

[Ben Smith]

Andrea;
I really appreciate your thoughts and inspiring story of your husband. Running races or things of that nature are the big reasons I am leaning away from the mechanical valves. I have read about the Ross Procedure, it seems very interesting.
When I speak with my surgeon I will be asking his advice on the best valve to put in if mine is not repairable.
It has been fifteen days since I first found this site, and with the encouragement from people like you and support groups, via the internet, I am past the "scared shaking" point and to a feeling of "I will come through this and be better than ever when I am recovered."
I want to thank you and everyone else I have met through this site and many others, especially robthatsme. You guys have been an inspiration and helped to a point of acceptance and back to a positive attitude.
God Bless.

Continuing Positively;
Ben

[Christopher A. Benavidez]

Ben,

Hi my name is Chris Benavidez and I'm a Government Employee working overseas in Germany.  This is my first time on this website
and I have truly read some interesting e-mails concerning aortic valve replacement.

I had my aortic valve replaced with an artificial (ST. Jude) one the 6th of May 1997.  As with most e-mails I've read there's allot of
people who are misinformed which leads to the high anxiety involved with this complex procedure.  I had my surgery done at the
University here in Heidelberg, Germany by a German surgeon.  Like most cases I was uniformed or misinformed about my
illness.  Actually I didn't even know that I had a problem until I went to my Doctor for a physical and the only reason I did this was
to change my health insurance to another company.   Believe me when my Doctor told me that he wanted to have additional
tests done on my heart I was floored.

I was 36 years old and in the best shape of my life with no symptoms.  I played racquetball at tournament level, mountain biked,
did aerobics, and weight lifted.  I knew they had to be wrong, however, they were correct.  My mother had told me along time ago
that I was born with a heart murmur, I figured since it didn't bother me and I had no symptoms there was nothing wrong with me.
So, I continued through my life exercising like normal and even did a three year stint in the Army where the murmur was totally
undetected, how could this be.  Well my doctors told me had I not been a person who was in such good shape I probably
would've had the surgery ten years earlier.

I want to be honest, I was so scarred and I honestly thought I was going to die.  However, I came through the surgery with no
problems at all, except maybe the pain from the cut and my back hurting so much.  It seems that when they cut your chest open
it ends up pulling the muscle's in your back at least it did for me.

Believe me being positive is the way to go, like you said, "you wouldn't be human if you weren't scarred.  It's been three years now
since my surgery and my motto is "I take a licken but keep on ticken" referring to the sound that your new heart valve makes.
I think I enjoy life more now than before, I don't exercise like I used to, however, I still do my walks at lunch time.  You see I have a
16th month old daughter and she deserves all of my attention.  Yes there is life after open heart surgery!

I want to be able to help, share or explain what I went through to as many people who want to listen so that maybe somehow I can
reduce the anxiety there feeling about this surgery.  If I can be of further help please don't hesitate to contact me or if you know
others that need some advice pass my e-mail address on.  I can write for days, however, I must stop somewhere.  Remember
to keep the faith and be positive.

Young at Heart,
Christopher A. Benavidez
Email: ***@****

[Margaret B]

Thanks to all that replied.  I was a little teary eyed and getting responses like I did.  I haven't been on since I read the Dr. response and didn't think that anyone else would be writing. I came on to ask another question and see if anyone else had similar questions.  My brother will be happy to read these and know that he really isn't alone, which is how I think he feels right now. The test was completed on Wed. and the surgery needs to be in approx. 6 mos. to a yr.  He really would like it done now.  He is a worrier and it will be on his mind until it is done. The cardiologist said they usually do the surgery when the test is level 5, he is level 4.3. They will do another test in 3 mos. Ben I will give David your email address.  Thank you and good luck too.  Thanks to all the good info and tips for him.  It is very much appreciated.  MAB

[Hank Eyring]

Margaret,

We have a great support group going for valve replacement surgery patients.  We have a lot to offer in the way of person to person help for your trying situation.

Go to our website (www.valvereplacement.com) and make an entry in the guestbook and I will help you become a member.

You can learn from us and we can learn from you.

Thanks and hope to see you soon.

Hank Eyring
***@****

[Margaret B.]

Thanks for your reply Hank.  I haven't had a chance to get back to the forum.  My brother had a cardiac cath yesterday.  He has an aortic anuerism as well.  University of Penn hospital was recommended by the cardiologist.  These decisions are really difficult.  I am going to sign on to the valve web site.  Thanks