Bicuspid Aortic Valve

[PhilCraun]

I just found this site via the newsgoups. You are exactly what I have been looking for to give me some information on what I can be expecting in the near future. Let me give you some background on my heart situation.

38 years ago (when I was 16) I was diagnosed with aortic stenosis. About 5 years ago it was narrowed (no pun intended) down to a congenital bicuspid valve. I began having symptoms a couple years ago but within the last 6 months, they began getting worse. I had an echocardiogram 7 months ago and again last month. My cardiologist has just scheduled me for a cardiac catheterization. It appears I will be having an aortic valve replacement fairly soon (the results of the cath will probably determine when.)

My cardiologist has said I do not qualify for the minimally invasive procedure and that the Ross procedure hasn't proven to be as successfull as they had hoped. He said I should get a mechanical valve and be on coumadin for life.

Firstly, can someone give me an idea what I can expect with the cardiac catheterization? I go in the Thursday (7/5/01). I was told I should be in the hospital 23 hours.

Secondly, I am a little apprehensive about the valve replacement surgery. I have heard the heart/lung machine leaves alarming long term effects on the brain and memory. I am also concerned about how long I will be out of work.

Thank you for your help.

 

[Charles]

Do not worry about heart cat. I had one this past Thursday and the worst part was the fear before the procedure. Prior to the procedure they hook you up to a monitor, shave part of your groin, put an iv in your arm and take blood samples. The blood samples are to check for any possible side effects of dye. They asked me a hundred times if I was allergic to shell fish since shell fish and the dye both contain iodine. I had to wait about hour for lab to process blood work. Once lab work looked ok they took me into room with six or seven people all doing various tasks and three folks in what looked like control room. There was rock in roll music, shots for three pointers into garbage cans all while me and doctor talked about interest rates and other financial mattters. There was a small prick in my groin when they deadend the area for insertion of the cath. tube. This was the only pain.I could see most of procedure on large screen monitor (joy juice in iv made me very calm). When the dye was enjected I got a warm feeling from my ears to toe...not painful..really sort of interesting sensation.When procedure was over (maybe 15 minutes) I went back to recovery where the nurses sealed my wounds with a new procedure (cotton swabs with super glue) instead of 15 minutes of pressurer. After laying flat for 3-4 hours they let me sit up and then walk around..making sure wounds healed. Then I headed home. Worst part was missing lunch and trying to eat supper flat on my back.Thank goodness for a loving wife who spoon feed me. Heart cat for me was piece of cake. I wish someone had told me details before hand because I was scared out of my mind prior to procedure. Good luck.

 

[martha]

Hi Phil, I had my AVR on 12-15-00. My cath was done the day before. They did it from my wrist. The only trouble I had was afterwards. I kept coughing, and it got worse. There was fluid in my lungs. They said that my valve was so narrowed and they added more fluid. Already had an IV in me. so they gave me a mega dose of lasix. (a water pill) I elimanated two and a half gallons. Going in I was so scared. But everyone was so wonderful. It was a snap, they gave me some happy pills and I was awake, but really relaxed.

As a result of the fluid problem. I got to stay overnight in the hospital. My surgery was very early in the morning. Was half asleep. Before I new it I was in the presurgery room. Felt a prick, and the next thing I new it was all over and I was in ICU. The wait is the worst. The most important thing is to have faith in your surgeon and doctors. These cardiac proffesionals are a special breed. Know you will be given wonderful care. We are here to answer all your questions. And understand all your fears. After all we have gone before you. Keep posting and welcome to valvereplacement.com....[/SIZE][/SIZE]

 

[martha]

Ps Phil, forgot to answer two of your questions. I was 49 at the time of my operation. And I choose to have a homograph. Didn't want to deal with the coumadin and the ticking. There are plenty on this sight that have a machanical valve and can tell you what it is like. The only thing I have to do is take a baby asprin a day. I don't have to worry about anything. Also am free to take part in any sports that I want to.

There are also those on this site that have had the ross procedure. In fact there are many different valve types in this group. I'm sure they will come along soon.

You asked about the heart lung machine. Yes, it has been known to cause some problems. Many in this group find that they have a problem remembering things. I would not worry about this. Talk to your surgeon, and let him/ her know of your fears.

 

[Charles]

What is the Ross procedure?

 

[DickV]

Phil, if you can get into the old forum, read the personal stories.

I took off 3 months because both my Cargo and cutter wanted me to. As I tend to push, it was good that I did because the body does need time to heal. Some have only been out half of that time.

When I did return, I hit it at 100% and have never looked back. Because I travel internationally I wanted to make sure I could keep up with the schedule.

Take off as long as you can and let Mother Nature do her magic.

I had a bi-cuspic aortic and went with a mechanical.

 

[FredH]

Welcome to the Site

Welcome to the Site

Hi Phil,
I had the same problem as you did but managed to last until I was 57 and then I got surgery. In my case I got a homograph but it was a tough decision. At your age you may want to stay with the mechinical. Listen to your doc and don't put things off. I had the minimal surgery at Cleveland Clinic. Like everytone else said the cath is not problem. I was back to work in three weeks part time so at your age you should be able to return in about 3 to 4 weeks. It also depends on the type of work. No heavy lifting for at least 3 months. Good to see you at the site and let us know how your cath goes.

 

[Christina]

Hi Phil.. Gladly help you out here. I was scared out of my mind before the Cardiac Cath, but it was nothing. I wish they would have told me. I actually had two cath's within 11 days as I had to have the valve replacement redone at that time because of a blood clot. Too low INR. I chose a mechanical and am on Coumadin. So far no side effects. I chose the mechanical as I do not want another surgery any time soon. These two are enough for me.
If I can help anymore, please let me know.
Good luck!

What is cardiac catheterization?

In this procedure a doctor guides a thin plastic tube or catheter through an artery or vein in the arm or leg and into the heart and the coronary arteries in the heart. This test can measure blood pressure and how much oxygen is in the blood, and provide other information about the pumping ability of the heart muscle or for treatment. When a catheter is used to inject dye into the coronary arteries, this is termed coronary angiography or coronary arteriography . If a catheter has a balloon on the tip, the procedure known as percutaneous transluminal coronary angioplasty (P.T.C.A.) can be done. Catheterization can also be performed on infants and children to examine or treat congenital cardiac defects.

Christina

 

[ALCapshaw]

Hello Phil,

Good thing you found us. There's nothing like EDUCATION to help calm the nerves and give you hope / encouragement.

First, like you, I was scared out of my find before my first (of many) cardiac catheterizations. Fortunately, the hospital had a training video which I viewed 3 times before the procedure. Afterwards, I said, "Is that all there is" to it? Piece of cake. They will probably use Versed to calm you. With a higher dose, you can be relaxed to where you are not aware of what is going on. Personally, I rather enjoy watching the wire guide being threaded through the various arteries during the test. They will deaden your groin with something similar to what your dentist uses. I have never felt anything beyond a slight
pressure as they insert the catheter. Closing systems have varied continuously over the past decade, taking less and less time to recover. You WILL want to take it easy for a few days to prevent a hemotama (blood leaking under the skin). I had one following a new closing procedure where I suspect the nurse did not get the clamp placed properly. I've NEVER had a problem with good old fashioned hand pressure, or the newer clamping procedures. Yes, I've been down this road MANY times .

Second, yes, there can be some short term memory problems following surgery due to the heart-lung machine. Doctors don't like to talk much about this. For 'younger' patients (50's, 60's?) it's typically not severe. I had triple bypass at age 55. Mostly, I notice that I have to concentrate a little harder but that I do remember thing when I make a point of it. Things "in passing" may escape me.

I'm facing the same valve type decision as you. I'm not keen on adding yet anotherl "bowling pin" to my medical juggling routine so am leaning towards the Carpentier-Edwards Bovine Pericardial valve which is made from the pericardium of a cow's heart but shaped like a human valve. Durability is 90% at 12 years and counting but NO coumadin is required after the first few months. The downside is that it WILL likely need to be replaced in X years (15?, 20? maybe?). The older you are at replacement, the better the longevity of tissue valves. I don't know exactly why. Mechanical valves should last 'forever' but DO require a lifetime of Coumadin therapy with increasing risk of 'bleeding events' that can range anywhere from bleeding gums if you brush your teeth too vigorously to strokes. It comes down to which set of undesirable side effects you can best live with.
I will list some reference material in a separate post.
See the HEART LINKS also. 'AL'

 

[ALCapshaw]

Phil,

Regarding recovery, it can range anywhere from 4 to 12 weeks. Most people I know who have had Bypass Surgery, are out 6 to 8 weeks. It takes 6 weeks for your sternum to heal (mostly). For the
month you should not lift more than 5 lbs. and should not drive. For the second month, you should not lift more 10 or 20 lbs (your surgeon will give you a number).

There are a couple of excellent reference books on Heart Surgery.
The HEART BOOK published by the Cleveland Clinic (#1 rated Heart Center in the world) and "Coping With Heart Surgery and Bypassing Depression" by J. Jude, et.al. This book was previously published as The Heart Surgery Handbook. There is a chapter that details what to expect during recovery on a week by week basis for the first 6 weeks.

Useful WEB SITES include

www.AmericanHeart.com American Heart Association
www.ClevelandClinic.com/HeartCenter
www.HeartSurgeons.com NJ group statistics plus procedure descriptions

This should keep you busy and ease your mind. Remember, a POSITIVE ATTITUDE goes a long way toward a good recovery. Heart Surgery has evolved to a highly successful procedure when performed by a surgeon and staff who do this routinely. There are
many thousands of us heart surgery survivors living enhanced lives through this miracle of modern medicine. Best wishes for yours.

'AL'

 

[Marty]

How bad is it?

How bad is it?

Phil, I don't want to be a Pollyanna but I was apprehensive expecting the worst that could happen prior to my valve replacement 9/17/98. The cardiac cath was nothing but interesting. The dye gives you a nice warm feeling. The incision in the groin is plugged with collagen and is not uncomfortable. The post op pain at least in my case was minimal handled easily with Percocet. I was home the AM of the fourth post op day. Walking daily and driving in two weeks.
Back to work in eight weeks though I could have gone back sooner. No memory problems or depression. I enjoyed rehab which is exercise club with nurses. Now do it on my own three days a week. Coumadin is a minor inconvenience/ I self test with a little finger stick monitor.I feel so much better, my only regret is that I didn't have the surgery a year or two sooner. You will do well. Feel free to contact me personally if you have other questions.

 

[Nancy]

Hi Phil-

Just wanted to let you know that my husband Joe, has had 2 open heart surgeries and is facing a third on July 18. He's had somewhere in the neighborhood of 4 caths, possibly more, it's hard to remember because he's had one of his valves for 24 years.

He doesn't mind them at all. They've improved them so much over the years that you hardly have any discomfort at all. With the collagen plug it's a snap.

You'll be fine.

Good luck.

Nancy

 

[Tammy]

Hi Phil And Welcome.

It you will find a lot of support here. Where are you having the procedure done? I see your in SC.
The Cath will provide the Doctors with valuable info and help determine if surgery is necessary. Are you currently at Severe Stenosis or Moderate?
Good luck and let us know how it goes.

Tammy
Live each moment while you can for you may never get the chance again.
Each moment is the last of not the future but the past.

 

[Dan O'Brien]

Phil,

Why are you not a candidate for minimally invasive surgery? My surgeon at Duke, Dr. Glower, performs minimally invasive aortic valve replacement by port access (through the ribs, no split sternum), if you are interested in a mechanical valve or animal tissue valve. I went with a homograft, so I didn't have the port access surgery. I hope your cardiologist has at least discussed all of your options with you, rather than simply saying you must have a mechanical and you cannot consider minimally invasive surgery. A good site to look into port access surgery is at NYU Medical Center or Heartport. If your surgery is more complex, this procedure probably can't be used. Otherwise, check it out if you have some interest in this possibility, as I did. NYU is #1 with port access surgery, Dr. Glower has done the most next to NYU.

Good luck with your decision. Also, many on this site recommend getting a second opinion prior to making such an important decision as heart surgery. I would highly recommend this and trying to educate yourself as much as possible on your options.

 

[MikeM]

You might want to get a second opinion as to the Ross Procedure. I think the facts prove it to be successfull.
Also check out the sight http://www.myrossprocedure.com/ and learn what you can about the Ross. I was conviced, and had the ross done 6-4-98. No problems, and no drugs for life.
I'm new in this forum and hope this reply works properly.
Mike

 

[Bunny]

I had my AVR this last Feb. I am 47. I also had a bicuspid aortic valve. The darn thing all of a sudden reduced it's opening size to a half a centimeter. I had to "do or die" surgery. Cardio cath is nothing to worry about. So don't fret. It's kind of fun to watch, especially when they give you some really nice "juice" in your IV.

I choose to have a mechanical valve. The doctor decided to use a St. Jude. Both of us decided that at my age, we should not have to worry about "when" the valve will fail. I did 10 years of waiting for this surgery, lots of research, and most of all soul searching. I realized, even though I am a very "outdoorsy" person, Coumadin really does not get in the way of my active lifestyle. Yep, still cut myself out in the back 20 clearing brush and stuff, but my blood is not overly thin. I live 45 minutes from a hospital, in a tiny community, but they come in once a week for the folks to get their INR checked.

It's still, in the end, all a matter of personal choice. Oh, by the way, the clicking? yep, hear it ALL the time, but I live in the woods, with no other noise, but critters, and the breeze blowing through the tree's. But! everytime I hear it, or my other half hear' it. It just reminds us how thankful that I DO CLICK. I am alive!

Good luck with your venture into a whole new world. Whatever your choices will be, they will be the right ones for you.
Bunny

 

[Herb M]

I have had I have had 4 catherizations, some with baloon angioplasty, roto rooter and stents. None of them were painful. Make sure you ask for some sedation if you are a bit apprehensive. The worst part is laying on your back without noh movement for a few hours after the procedure. I stayed in the hospital overnight because of my heart disease. I believe other are released on the same day.

I had my aortic valve replaced in 1988. I do not recall any great pain after the procedure. The worst part was the IVs that seemed to go on forever after the procedure and the hoses in your nostril for oxygen and a few other for tubes elsewhere for draining purposes. None of this was painful, just annoying.

I recently read about techniques which use new equipment which shortens the time on the heart-long machine. In any case I have not detected any loss in ability in anyone I know that has been on a heart-lung machine.

 

[RayR]

Hi Phil - If you are considering the Ross procedure, you should know that some research has indicated that it may not last as long in people with bicuspid aortic valves. I don't have all the details, but you should discuss this with your doctor. One paper is by TE David and other authors.

 

[Susan in FL]

Hi Phil! Well, I was in your shoes about 3 years ago. My surgery ws 2-1/2 years ago. I am the proud owner of a shiny St. Judes mechanical and take coumadin daily. The heart cath is nothing to worry about, although for me it was no picnic as I was a "bleeder", making it a tad harder than most. Was outpatient basis so only in the hospital a few hours. I chose the St. Judes as the surgery is the shortest, usually, thus less time on the heart-lung machine. Passed on the Ross as that is what almost killed Arnold Swartzenegger. Although many have had no problem with it. The heart surgery itself was really not that big a deal. I was walking a mile at the end of the first week and back to work in 6 weeks. Have had only one sick day since and that was the flu. Didn't go back part time either--have a busy and stressful job with a good bit of travel. The key really is to walk, walk, walk, and breathe (using an incentive spirometer they will give you in the hospital), breathe, breathe. You will feel great in no time at all. And with your symptoms, much better. I did not have much in the way of symptoms, but LV had swelled. I too had congenital bicuspid valve that was not discovered until 3 years ago. Always had the murmur, but told nothing to worry about, would go away. Well, it DIDN'T!! As for the coumadin. Mine has been fairly regular, and I get tested at least monthly. I try to not eat too many foods that interact with it, but do not go crazy about it either. It has not been any problem really. Unless it is exceptionally quiet, I can't hear the valve ticking either. I gues what I am trying to say is to not worry too much. Make sure you have a good surgeon, take proper care of yourself, and the rest is academic. Besides--sure beats the alternative! You will find lots of great experiences and advice at this site and we will all help you through it. Best of luck and may God bless! Susan

 

[McCranky]

Lucky you.

Lucky you.

Do not worry about heart cat. I had one this past Thursday and the worst part was the fear before the procedure. Prior to the procedure they hook you up to a monitor, shave part of your groin, put an iv in your arm and take blood samples. The blood samples are to check for any possible side effects of dye. They asked me a hundred times if I was allergic to shell fish since shell fish and the dye both contain iodine. I had to wait about hour for lab to process blood work. Once lab work looked ok they took me into room with six or seven people all doing various tasks and three folks in what looked like control room. There was rock in roll music, shots for three pointers into garbage cans all while me and doctor talked about interest rates and other financial mattters. There was a small prick in my groin when they deadend the area for insertion of the cath. tube. This was the only pain.I could see most of procedure on large screen monitor (joy juice in iv made me very calm). When the dye was enjected I got a warm feeling from my ears to toe...not painful..really sort of interesting sensation.When procedure was over (maybe 15 minutes) I went back to recovery where the nurses sealed my wounds with a new procedure (cotton swabs with super glue) instead of 15 minutes of pressurer. After laying flat for 3-4 hours they let me sit up and then walk around..making sure wounds healed. Then I headed home. Worst part was missing lunch and trying to eat supper flat on my back.Thank goodness for a loving wife who spoon feed me. Heart cat for me was piece of cake. I wish someone had told me details before hand because I was scared out of my mind prior to procedure. Good luck.

I had my angiogram on Valentine's day. It was scheduled for 12.30pm so I breakfasted at 6.00am and turned up at the appointed time. There were 2 emergencies which meant that I wasn't on the slab until 4.45pm, near the end of their working day. Everything happened in a bit of a rush and as they went into my groin I started to pass out. My pulse dropped to 20 and my BP to around 60 over 30. I was given atropine and oxygen which enabled them to complete the procedure. What had happened was that they pierced the artery and at least 2 pints of blood leaked into my leg. A lot of pressure and deep massage was applied to disperse the blood and I went back to the ward. Later, at 9.00pm, a Doctor came to check on me and applied more deep massage and pressure as the blood could not have dispersed. My pulse and BP dropped and I was put on oxygen and a saline drip.
What shuld have been a simple procedure turned into something quite scary and gave me a 'black leg' from groin to knee. 2 wees later I am still anaemic but the bruising is going and the good news is that my arteries are as wide as the M1 ( Freeway to you Yanks). My aorta is thickened though so I will need a new valve and it will be fitted at the Heart Hospital,( now part of the NHS) Hopefully it won't be a problem, but after my recent experience I have made a new will and put all my affairs in order.