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johnnycake23

Two-time AVR Vet
Joined
Nov 19, 2003
Messages
194
Location
Chicago
Hello,

First of all, thank you to geebee and bvdr for responding to my post and for the encouragement. There?s so much I want to say, so many questions, but I will try to be as brief as possible. OK, here goes.

In 1993 at the age of 27 I had open-heart surgery to correct aortic valve regurgitation, or insufficiency, of a bicuspid valve. The procedure was done at the Cleveland Clinic and was performed by Dr. Delos (Toby) Cosgrove (yes, the same Dr. Cosgrove who made the rounds on television last month after President Clinton had his bypass surgery). This crackerjack surgeon was able to repair the valve, as opposed to replacing the valve with a pig or mechanical valve. I understand this procedure is not very common and that would explain why there is not much in the way of articles or literature on it.

After the surgery I was told once I was fully recovered the only restrictions I would have is to not lift any heavy weights and to take antibiotics before any dental work. The only medication I take is 5 mg of Vasotec daily as well as a baby aspirin. I am active in sports and have been healthy since the surgery. It is lately that I have had concerns.

While my blood pressure is normal, my resting pulse rate is consistently in the 90?s, which is relatively high. There are times when I am lying in bed that I can feel my heart racing, beating so hard that it seems to vibrate my whole chest. This is my main concern. I don?t know why it happens and quite frankly it is scary when it does. I worry that my heart is just going to go kaput, right then and there. It may sound like paranoia but at the time it is all too real. Also, when I am overtired I get dizzy when I stand up from a sitting position.

My cardiologist said the pulse is not a concern but rather making sure the blood pressure being good is what is important. My echocardiogram shows a slight leak in the valve but nothing of great concern. I asked him about me getting operated on again and he said that is not something to be concerned about ? YET. He would not give me a time frame on that. I know I will get carved open again I just don?t know when.

Other factors to consider are that I don?t sleep well; I either have a hard time falling asleep or I awake in the middle for no reason (although not due to palpitations). I also don?t have the best diet in the world. I?m not much of a cook so most of my meals are either fast food or something that has microwave instructions.

Lately I have been reading the Dean Ornish books and how he stresses proper diet, yoga and meditation as ways to reverse heart disease. While he does not address my specific condition I figure, what the heck, it couldn?t hurt. I have looked in to registering for such classes but they are usually taken by people who take it for recreational purposes, not for therapeutic ones. I wish my hospital offered such a class but no such luck.

It?s been eleven years since my surgery. I am now 38 years old, and single, and what has prompted me to write is, well, I am not sure how to proceed with my life. When I get those palpitations I get scared. Scared of dying. It makes me think, think deeply. I am apprehensive about getting married because if I will always be a heart patient, with these or other such maladies, I would not want to saddle my wife with the job of being my caretaker. It just wouldn?t be fair.

My cardiologist says there is nothing to worry about yet and I have friends who also get dizzy spells and palpitations, and they do not have heart conditions. Is there anybody out there who has also had this surgery or knows somebody who has had it? I would love to hear any information about your aftercare, quality of life, do you have to have a re-repair, etc? Do meditation, visualization and diet really have such a powerful effect, and can it help me?

Thank you in advance for your time and your feedback. I apologize for being longwinded. It?ll be nice to hear from people who have similar experiences and concerns. I look forward to hearing your responses.
 
Hello and welcome to our humble home.

So Toby fixed ya up instead of replacing it aye? He's about the best, if not the best, at what he does. Personally, I think your heart rate problems are being caused by the Vasotec. Have you considered consulting another Cardiologist about this? Might be well worth it for your own piece of mind.

You need to live your life and stop worrying about the what if's. You'll what if yourself to death and never be happy, as well as miss out on lots of things that you should have enjoyed in life. There isn't a one of us here that hasn't felt what you do. We all have! You simply deal with the immediate threat and move on. You cannot sit and wait for something else to happen.

I think everyone of us has problems sleeping too. I know I do. I can only sleep 2 or 3 hours at a time and then I'm up for 5 or more before trying to fit in some more sleep. My diet is much like yours. I keep trying to eat healthy, but I always manage to starve myself to the point of shoving anything in my face quickly just to shut my stomach up!

There will be others around to talk with you, so sit tight and relax. Your amongst people that really do know what this is all about because many of us have been through it more then once. ;)

Again welcome to the forums
 
Hi,

I´m also 38 years old. Last year I had a new mech. valve after
an episode of endocardities. I also got a pacemaker as the infection
got to my heart real bad.

This happened march last year. A month ago, we had our second
child, yet another healthy wonderful baby-girl.

Out of different reasons, my wife had to have a caeserean section
and right after the dad gets the child as the mother is preoccupied
with getting stitched up. While I sat with our new baby in my lap,
I could not helping shedding a few tears as I thought I´d come very
far from where I was little more then a year ago, last year I was basically
like a baby when I was so ill from the endocardities and now I sat there
holding a beatuiful baby-girl in my hands. This was a very intense moment
and I thanked God for the wonderful feeling of holding our newborne child
in my arms.

As you, I do not know how long my valve will last, I also feel dizzy at times,
my heart races and it´s all a very good ground for all sort of anxieties.
I also doubt how long I am going to be around, what will happen, how did
this happen, why did it happen etc, etc. But the conclusions are not leading
in any positive way and I kind of set my mind up to leave this and try to
get on with my life as far as possible. So I guess this is my advice to you,
try to go on, try to find somebody and don´t think too much, let it happen
and let it take you where it takes you, because if you don´t, this will hurt
you more then in one way and that´s making one problem into several.

And you can´t work out life in theory, one n e v e r knows what will
happen - the only thing that is sure, is that you do not know what is sure!
So try to move on and take things as they come, I try to live that way.
In fact I do more fun things now as I am not sitting thinking I´ll do this or
that later. Last week I bought a new Maserati, so if you´d been in south
Sweden this weekend, you´d seen Europes fastest valve and pacemaker
racing down the road! If I hadn´t been ill, I would have been hesitant
to spend a lot of money on such a "foolish" thing. Now I think "what the
h**l, you only live once, let´s hear that engine roar"!


Anyhow, take care and hope you come to terms with how to live
your life.

/

Martin
 
It's so easy to get caught up in fears that are made more real by real heart conditions. Life is to be lived and to be appreciated. Trying to look into the future to figure out the "what ifs" with more certainty is pretty much a waste of time and I need to remind myself of that often. If you have issues now that inhibit your life and cause you to step back too often, then hunt down the answers like a Bloodhound tracking a rabbit. Each one of us effected by a heart valve problem know that our futures are uncertain. But the only thing that helps me to keep my faith is to be certain that I have a future.

No matter what our valve stories are (repairs, tissue replacements, mechanical replacements, Ross procedures) we all live with uncertainty. When's my next surgery, is my valve forming a clot, is the repair holding? My husband, who is very bluntly practical, said to me once "Yes, you may have to deal with future problems, but you may also walk out in the street tomorrow and get hit by a bus." So I decided rather than to live a careful life to try and not cause any more heart problems, or in wait of others, I decided to live life like I knew I may get hit by a bus the next day. ;)

If you feel you are at a point where you find you are too worried about you future life, find a professional that knows how to help you sort through this. People with heart problems have a good tendency for depression - I know this first hand.

I would also ditto Ross's recommendation and seek out opinions from other cardiologists. Most of us here have been through several.

Best wishes!
 
I agree with the comments, just go live your life and do not worry. Valve repairs are becomming much more common now, I had one done in 2002. Do I think about the possibility or surgery again? Of course, but not often. I am just happy to be here.
 
You've had an EKG, I'm presuming..........

You've had an EKG, I'm presuming..........

If that showed nothing, have you worn a holter monitor? If not, ask your cardio why not. While our situation is different (My daughter had her common AV valve repaired last year, but it didn't hold up under pressure. Right now we are biding our time until hopefully March or April when she will have a mechanical valve installed.), the reason I mention that is the number one post-op side effect we were warned about prior to repair was arrythmia problems, if not immediately, at some point down the road. Fortunately for us, Katie has only had a few minor bouts with PVCs, but I am all too aware that we could have problems later on, especially after her next surgery.

Anyway, just food for thought. I hope you get some answers soon. A second opinion never hurts. Keep us posted and take care.
 
Johnny,
Thanks so much for sharing your story. If you are like me, just writing it is theraputic and, even more so, that there are folks here to listen and try and help.
I had my first mechanical valve (mitral) implanted 24 years ago (on Halloween :)). Since then I have had on and off palpitations and other electrical issues. Just a little over a month ago I found out I am in constant atrial fib due to the trauma from 3 surgeries. It is irritating but it does remind me that I am still alive.
I bring this up because I have had so many visits with the "what if" demon. This demon is so very powerful that it trys to surround your entire life with its power. DO NOT GIVE IT WHAT IT WANTS. I know there are times when, late at night, your heart feels like it is ready to jump out of your chest and you are convinced "this is it, I am dying". Providing the doctors have done all the tests to make sure you have no dangerous electrical issues, you will still be around in the morning.
I think you would greatly benefit from meditation or biofeedback. I still use biofeedback now and then to reduce my heart rate and anxiety levels (yes, I still have bad nights). It works beautifully and brings me the peace I need.
Try to focus on being alive and not on dying. Easy to say now that I have "conquered that demon" but it is possible.
Smiles, :)
Gina
 
Hello and welcome,

I am 37 years old and two weeks post op for Aortic Valve Replacement. I too had my valve repaired at the Cleveland Clinic when I was 16. I often had palpatations over the 21 years between surgerys. The Cardiologists also told me it was nothing to worry about. I worried a lot being that young about the future and marriage, but I decided not to dwell on the heart condition. I have been married for almost 10 years and have two wonderful boys. I don't regret it at all. In fact, I am so glad my wife was there for my recent surgery to help me through it. As everyone knows here she is a "Mother Hen" and thinks she needs to take care of me constantly, but I really wouldnt have it any other way!

Ross gave some good advice (as does everyone here). Seek out a good cardio and make regular visits to monitor your heart. We will be here for you if the time has come for replacement.

Welcome Aboard,
Jeff
 
I am pre-surgery so perhaps my thoughts may not be of much use to you. But, like others with valve disease, surgery is a very real possibility for me.

I married four months ago. At the time, I knew I most likely had a bicuspid valve, but it was not clear as I had inconsistent echos, and it was only mildly stenotic so not much of a concern. Then, two months after my wedding day I found out that actually my echo last year showed pulmonary hypertension (which is far worse than a bicuspid in my view) and that this year the PH was much worse. So, I watched as my husband of all of two months struggled with whether his new wife was going to be around for very long.

It turned out that the PH diagnosis was, I hope, a mistake, or at least that's what the PH specialists are telling me.

I did feel guilty while I was going through all the testing related to PH ... like my husband got a raw deal. But, on the other hand, we are very much a team and I know in my heart, no pun, that he is better with me and I am better with him than either one of us would be with anyone else. So, I am thankful everyday for whatever time we have with each other.

You may be depriving yourself, and someone else, of a soulmate. There is someone out there who would most likely be happy for whatever time they could have with you. I think its a shame to let your physical limitations restrict you in such an important way.

We are each more than our physical selves.
 
Thanks

Thanks

Thanks to all who have replied. I have taken everything to heart (excuse the pun) and will keep trying to go on and not get down on my situation. It's comforting to know others out there who go through the same things. As I'm sure you know it can sometimes be a lonely feeling.

Thank you again and I hope I can be as helpful to others as you've been to me.

Johnny
 
Johnny,

You have received a lot of excellent advise so far so I'm only going to add an additional perspective...

I think all heart valve patients have a different outlook on life than the general population. I believe "disease" may be too strong of a word to describe a failing bicuspid valve, so I tend to prefer "condition".

I had just turned 40 when I was diagnosed with my condition - a regurgitating aortic valve. I also was born with a bicuspid and as I approached "mid-life" (Love that term - :rolleyes: ) my valve began to fail and was undoubtedly compromised from a dental procedure one year earlier.

The moral of my little story is that I prefer to focus on the positive. My father died at age 44 of a "heart attack", however it occured in 1975 a few months after my parents divorced and since he was living alone, no autopsy was performed to validate the actual cause.

Anyway, I had always carried a slight gray cloud of dispair through my life assuming that since the men on my father's side of the family died young, I was to suffer the same fate. I countered this by trying to live the healthiest lifestyle I could. However, while I did not smoke and was consistent with exercise and diet, I'm a Type-A personality working in Corporate America so I'm sure I internalized a lot of stress.

As a result of my six-week life "time-out", last fall following surgery, I had a wonderful opportunity to put life in better perspective. Believe me, it still drives my nuts when I think about how many times my "bionic" valve will open and close during the rest of my lifetime, however, I also wonder how long my failing bicuspid valve would have lasted if I hadn't had any surgery. Combined with the fact that I had no symptoms prior to my accidental diagnosis and I literally could have fallen over one day.

Like Martin, I chose to live each day to the fullest. I bought a Corvette this summer simply because I wanted one since I was 12 and I now realize life has no guarantees. I absolutely plan to be around for another 40 years and I cherish the time with my family and friends. Softball was a little more fun this past summer and the beers after the game seemed a little colder.

Live life, fall in love, get married and do what you enjoy! It's all good!
 
Hello Johnny,

One of the possible side effects of ACE inhibitors (such as you are on) is an abnormally rast heart rate.

You may want to discuss this with your cardiologist, or get a second opinion from another cardiologist, maybe even one who specializes in ElectroPhysiology (EP).

It sounds like it would be useful to wear a 24 hour (Holter) monitor or a 30 day 'event recorder' to capture those episodes of palpatations to determine the exact type you experience. MOST are relatively benign although they can be a bit disconcerting until you understand them better. Since you are still here, I assume yours are 'safe' although somewhat 'uncomfortable' at times.

Once your cardiologist knows the exact nature of your palpatations, he may be able to prescribe a treatment method. Changing (lowering or even eliminating) your dose of Vasotec may be one option. DO NOT do this on your own as BP medicines must be weaned SLOWLY to prevent dangerous side effects.

Bottom Line: Check it out. It's probably not as bad as you seem to fear.

'AL'
 
Johnnycake

Johnnycake

Here is my two cents. I had my repair at age 8 in 1973 on my aortic valve. Replacement happend at age 36 in 2001. Lots of years passed before replacement. Feel great that you have extra time and no restrictions. Keep being as active as you can for as long as you can. Live life and just keep up on the checkups on the heart. Do not worry about the leak, it is there, so what. As long as you are not having problems, don't worry. You are in for a long ride. Things are always changing in the medical field, miracles performed everyday. LIke I said before, live life. You can come here as often as you feel you need to, ask questions. Take care.
 
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