Bicuspid Aortic Valve Replacement - Tissue vs. Mechanical for a young guy

[edjspi]

Thanks again for your replies.... I absolutely know that everyone's decisions are their own, and that means it may not apply to ME personally. but this is all about getting the MOST information I can, like you said, and then make my own decision!

THe doc and I did discuss the possibility of A-fib resulting from the surgery, and thus meaning I would be on coumadin anyway. but my siuation is that I had A-fib starting at Age 19, and I've had it under control with several meds for the last 10 years. no coumadin needed, other than the first month that I had the a-fib. So, my doc thinks that even if I were to have a-fib post-surgery, that it would still be able to be controlled by the medication I've been on for years. So I am hopeful that this will be the case... actually, BEST case is that this new valve CURES me of the a-fib problem!!

SJJ: can you describe a little more (if possible) what exactly what was 'uncomfortable' during the first 48 hours? how are you doing 3 weeks post op in general? and about the fear of the slow deterioration before the valve replacement - did you experience that THIS time with your valve replacement? I'm asking because I have never had any symptoms whatsoever, so I'm *hoping* that when my next surgery comes along, again it will not be that bad... in terms of physical deteriorization.

thanks again for the input!
Eddie

 

[Samuel]

Hi Eddie

I had an ATSmedical - mechanical AVR on 14 Jan 2004 - The only clicking audible is occassionaly in bed when lying in a particular
position and I have got to listen caerefully to hear it! It cannot be heard by me or others at any other time.
After the operation I asked the surgeon if he had really fitted me with a new valve as I was expecting clicking. He cannot hear it withour a stethoscope.
With self testing Coumadin is really no problem.
This is a relatively new valve now getting excellent reports.
You can find out more at www.atsmedical.com
Hope this helps

Samuel

 

[SJJ]

Eddie,
In answer to your questions:
1)describe specifically the umcomfortable part of the hospital experience

Ok, now I have not heard of anyone else having this procedure so I can only assume it was specific to my hospital, or maybe even my surgeon. The afternoon before my surgery, I had a cath-like procedure where a small balloon was threaded up through my groin and placed behind my heart. This was to provide extra oxygen to my heart overnight and to make the surgery safer and would be removed during surgery. The insertion itself was no big deal, but like a cath, I had to lie flat. As my surgery wasn't scheduled until 7:00 the next morning, this left me on my back for 15 hours. My back was so sore I thought I'd go nuts and it also felt claustrophobic to not be able to move. After the first 4 hours or so the back pain became so bad that I couldn't really sleep, even with meds. I couldn't wait to be taken to surgery just so I could be knocked out. This also made my post-op back pain ( an expected discomfort for everyone) much more pronounced than most folks would have. Again, I haven't heard of anyone else having this done so it's unlikely that you would have it.
I also experienced nausea off and on for about 48 hours after I awoke. Although they were able to control this with meds, it would come and go and I did get violently sick to my stomach twice while in CICU-not fun with the incision (sorry, you asked)
While the breathing tube was do-able, it was certainly one of the most unpleasant aspects of that 48 hr period. It didn't hurt exactly, but felt like a big plastic spoon was shoved down my throat and I wanted it OUT! Although UAB doesn't usually tie the patient's hands down, I apparently became quite intent on wanting that thing out of my throat and my thrashings caused them to restrain my hands. I was in and out for a couple of hours and my husband told me I had tears slowly running from the corners of my eyes until they finally removed the tube. The suctioning they did while the tube was in was also kinda "gaggy. So, that's the worst of it and I was only that specific because you wanted me to be so. There were some very uncomfortable segments to the 48 hr post-op experience for me. I was decidely not in any pain (the meds were great and I haven't used them since discharge except once for back pain.) I hasten to add that despite my complaints, the discomfort was time limited and, especially in retrospect, not anywhere near as bad as I'd expected. It's no picnic, but definitely something you can handle.

2) 3 week post op experience

Other than a couple of weeks of being in and out of afib every few hours (the first requiring an overnight hospital stay just to monitor, test and check things out), my home recovery time has been pretty easy. Even the afib was really only a problem because the longer I continued to have it, the more likely it became that it would become chronic and I just wanted to know NOW that that would not be the case. I just had another 2 hour bout yesterday, but hope this was just a blip and things won't start up again. I was pretty tired the first week but have felt steadily better and fairly "normal" in energy level the last 3 days or so even after walking 4 miles a day, doing light chores, cooking, etc.

3)slow deterioration before surgery

I really didn't experience pronounced everyday symptoms prior to surgery. I have, however, always been very active and every year did at least one, 2 week whitewater wilderness trip with strenuous hiking. I had to give those up 3 years ago because I just couldn't do the vertical hikes anymore (so much a part of the experience) and I knew there was some risk of stressing my heart if I got dumped in a rapid and ran into difficulty. This year, I was told I had to give up downhill skiing-another yearly activity out the window. Before I was informed that my surgery needed to be now, not later, I had planned a month in Italy with my husband and knew I would not be able to do some of the walking tours I wanted to do due to the hilliness of the area. These were not everyday limitations but the deterioration really did start to impact on my quality of life. My husband and I both retired quite early to be able to pursue a variety of different travel adventures that require reasonably good stamina. Now that I'm "fixed", while I may not choose to run the Zambeezi in Africa since I'm now on Coumadin, I can still consider hiking, biking tours and not worry about high altitude destinations like the Himalayans. Let's just say that I don't want to miss any more opportunities to have active, challenging and exciting adventures. I'm 54 now and can't afford to waste any more time being a patient, (if I'm lucky) it's as simple as that!
Hope this helps-you now know more that you probably wanted to but you know the saying, "be careful what you ask for."
Really, Eddie, you're going to make the right choice for you. I know this, because you're putting so much effort into it. Good luck!
Sue

 

[Peachy]

Hi Eddie

The decision is yours and yours alone. I too went through exactly the same as you 2 years ago at the age of 41. In the end I went for a tissue valve even though the surgeon recommended a mechanical valve. I felt that I was too young to have to take coumadin for the rest of my life and have to monitor my INR regularly. I just wanted to have my op and carry on as normal. I do a lot of sports, cycling, walking, ski-ing etc and wanted to carry on without worrying about having a fall and the effect of this combined with taking coumadin. I feel great now and do not regret my decision. Yes I will need another op in around 8 to 10 years or whenever but I will worry about that when the time comes and who knows there might be something new which will last a lifetime and not require coumadin. If not then I will be older and will have slowed down anyway and will accept a mechanical valve and coumadin. Best of luck reaching a decision.

 

[ar bee]

that makes two of us

that makes two of us

dear edjspi

i am a co-winner of your award..

the more i read about it the more i am inclined towards a mech, because:

(1) OHS still has a 1-4% mortality, so better reduce the occurrence
(2) home testing seems to be getting quite easy
(3) it is NOT the case that every little cut makes you loose 2l of blood, that is simply an exageration


gd luck with yourdecision
well2all
ar bee

ps admittedly the prospects of "tic-tac" disturb me a fair bit, but maybe with a layer of muscle (or fat) that can be reduced??

 

[Raverlaw]

Eddie,

The others and I have posted on the various considerations. Here's a couple more things to think about:

1. Although the surgery experience was "not that bad" in retrospect, I wouldn't relish the thought of doing it again, particularly in 10 or 20 years when I will be 59 or 69. Physical considerations aside, the stress on my wife and family was probably the worst part- they worried about me and the surgery and I wouldn't want to put them through that again.

2. Financial- although I have insurance (luckily!) the cost of the surgery and doctors was in excess of $160,000.00!! And I haven't even seen all the bills yet... My share is limited, thanks to the insurance, but it still adds up to thousands of dollars, which takes a chunk out of the family budget this year. The insurance market is very tight right now and doesn't seem to be likely to improve any time soon. So, how sure are you that you will have insurance or even be insurable 10, 15 or 20 years from now? I don't know the answer to this question, but if you have a tissue valve that WILL fail in time, would an insurance carrier refuse to cover you, or exclude that condition from coverage?

These are all reasons, in my humble opinion, to go with the *one time* fix - sure, nothing is guaranteed, but why not do everything to eliminate as much risk of a second surgery as possible?

Hope this helps.

 

[Granbonny]

Bill

Bill

This is the first time..I've ever thought about someone wanting a tissue with a replacement in 10-15 years...IF they are around age 50..They will then be on Medicaid. and would have to have a second Insurance coverage.....and don't forget ALL the follow-up's with Cardiologist...I am still on the every 6 month follow-up and had to pay a big 20% coverage for my echo last Sept. ..and they ARE expensive. Most want you to have an echo every year. Whether you have a tissue or mech. valve....and I am with you on the family thing...I was lucky at age 61 to have a great hubby to help me out..and a room-full of relatives during my surgery...that worried and visited every few hours when they could come in to see me..Long night..for them..and daughter took a week off from work..to sleep in my room with me. Hubby stayed in motel across the street at night. NEVER..again..do I want them to worry that much. They have their own lives to live...and if you are a single person..you still need someone. Parents, sisters, brothers, ect.... I'm so glad my surgery was a ONE time deal..with only taking one PILL. (Coumadin..that is no big thing for me)Lucky...Bonnie

 

[Brian]

A BIG THANKYOU!!!!

A BIG THANKYOU!!!!

Before I begin, I really want to extend a HUGE Thankyou to Hank for setting up this website . I can tell you one thing as I am sure all of you already know. This ordeal is not an easy decision. No choice is a bad choice, you only have to sort out the best possible choice for yourself and with the help of this website, forums and most of all....everyone here, the decision is much easier, by having a little knowledge about it all.
This website, forum and the posts from you all have really put my mind at ease about most of the things that I will be facing just as you all have as well.
I am scheduled hopefully very shortly for a AVR (next couple of weeks I hope). I have been through all of the prelim stuff and came through them all just fine. I have bicuspid Aortic Stenosis. This fall after my echo, the cardiologist told me that the valve had an opening of the size of the end of a pen. That blew me away that I had enough energy to even walk across the yard, but after going through the angio a couple of weeks ago they have determined that is is open .68 cm3, still faily small, but not as bad as we thought...LOL...

The choices...Oh the choices.....I think that is the hardest part of it all. Orginally I was totally determined to have a homograft (it's human right..and I am human..so it had to be the way to go).., but after talking with the surgeon and the cardiologist, because of my age they both felt that would not be the best choice. Because of the repeat surgery and how complicated the next replacement surgery would be for me. I am 41 and would for sure have to go through more surgeries. So then after reading more and getting an email from Mark, which to this day I am totally in debt to him for helping me come to a decision. I was totally against doing the Coumadin thing, because of what I do for a living, the areas that I work in (remoteness) and plainly just the thought of having to take rat poison for the rest of my life...LOL...but I weighed out the pros and cons. A pill a day....or full well knowing that I would be starting the clock for the next surgery...hmmm....I decided to go the route for something that hopefully I could control. I know very well that I surprised my cardiologist when I told him my decision to go with a mechanical valve...he admitted that if he was I, that he would have gone the same route too.
I live an active lifestyle, have a demanding job which entails physical labour as well I occasionaly hit my head, or get cuts. LOL..I guess I am just going to have to be that much more careful.

The only part of this whole surgery that has me concerned and this might be an odd statement to say, is the cutting and recovery of the breastbone/sternum. Each day at work, I do physical things...6 weeks, 2 months....more time not lifting...??? I am very healthy and plan to stay that way, so I am hoping that I have age and health on my side for the healing process.
I am also self employed and have no disability insurance as I am sure a lot of you can relate to. The insurance companies all want your money as long as they are 2000% sure that you won't ever need to collect...
The waiting game for me..waiting for "THE" call for my surgery date, I must admit a rather unpleasant time. I just want it over so I can get on with getting "ME" back on the mend. I know ..patience...and I do know that there are a lot more people out there that need it a lot sooner than myself, so that is where I calm myself down.
I am looking forward to getting it done, and getting on with the rest of my life, strong and healthy.
The one doctor that I saw in my pre-lim told me that most likely the valve will have to be eplaced in 15 yrs...GULP....WHAT???? What was that?...a mechanical valve....15 yrs?? What the heck was he saying? I am hoping he is just being overly pesimistic..lets hope...

Anyway, I've likely bored you all to sleep with this long note. In closing I just want to tell you Eddie, just as so many other have. Get as much info as you can, roll it around in your head and really make an informed decision, I'd say both for now and for down the road, but remember to be a live is for living and living life to the fullest!!



Once again, thanks to you all, you're the best!!!!


Brian

 

[Nancy]

Hi Brian-

Welcome to the site. I just had to tell you that my husband has an aortic mechanical which has been in place for 26 years, and last time he had it checked, it was doing just fine. The newer models are slimmer, sleeker and built to last He's got one of those too in the mitral position. So count on your valve and you being friends for a very, very long time.

So pooh-pooh on the time frame you were given.

Wishing you all the best.

 

[Gemma]

Hi Brian,
Nancy's right, the mechanical valves last a LONG time - Jim's has an expected lifetime of 200-300 years!!! If he's around in 2304 I guess he can tell you if they were right!! Maybe the 15 year replacement schedule was referring to a tissue valve, as you originally wanted a homograft?
Eddie - I can't print what Jim said to the idea of having open heart surgery again. Let's just say he wouldn't want to do it!! It certainly isn't a walk in the park - your choice though, seems like you're pretty certain about going the tissue route. Good luck with whatever you decide.
Gemma.

 

[johnbelloh]

Hi Eddie

I can't stress how important it is to be physically fit before surgery. If you go into your surgery in good condition, you will recover that much faster. I speak from my own experience. I have had 2 OHS in 10 years. My recovery at age 60 from my second surgery was faster than my recovery from my first surgery at age 50.

At age 50 I had 5 coronary bypasses installed and decided to make a complete lifestyle change. Unfortunately my first cardiologist never bothered to look inside my heart. He never gave me an echocardiogram and missed my stenotic bicuspid aortic valve. My life style change included a complete change in diet and daily exercise including running.

My new cardiologist monitered the progression of my aortic stenosis every 6 months with echocardiograms. As a runner I found that my running performance was just as acurate an indicator of the progression of the stenosis and maybe a better indicator.

I observed over the years the deteriorization of my aortic valve. I never gave in to it and continued to run right up to the end when I could barely maintain a slow jog. In that 10 year period I actually ran 8 marathons. The last one was the NYC Marathon on 11/2/03 about a month before my surgery. The final indicator "that it was time" was when my heart started to skip beats in aerobic class. My cardiologist gave me a Bruce Protocol stress test. My heart was skipping beats from at rest all the way to 15 minutes when he stopped me. He then scheduled me for a heart cath.

The heart cath found 2 of my old saphanous vein bypasses in perfect condition, but another 2 had blocked, the one on my circumflex was blocked 95%. My Aortic valve had calcified down to .8cm sq. and had developed a bad leak. My cardiologist looked at me and said "he could not understand why I did not die in the marathon." My response to him was "conditioning."

He wanted me to stay in the hospital and schedule surgery with a local surgeon. I had been doing my homework on valves for about 8 years and had narrowed my search of surgeons down to 3 and my choice of valves down to 2. One of my choices had retired, another was in New York and the third was here in Ohio at the Cleveland Clinic.

I contacted Dr. Pettersson at the Cleveland Clinic and related my story to him. He had me overnight my cath disk and a CAT scan to him. He scheduled me for surgery the following week on 12/17/03.

I had eliminated a mechanical valve for the following reasons:

1. poor hemodynamics ( I was looking for maximum running performance )
2. requirement for cumadin ( not compatable with my life style )
3. 2% a year chance of throwing a clot. ( valves don't fail but patients often die of stroke )

My tissue choices were homograft or bovine tissue engineered.

After meeting with Dr. Pettersson we both agreed that a homograft was the best choice for me. Either of the above are now lasting up to 20 years. For hemodynamics nothing beats mother nature with a homograft.

The make a long story short, Dr. Pettersson replaced 7 cm of my aorta and fitted me with a 25mm homograft valve. He also replaced 2 of my bypasses.

I litteraly ran from my hotel to the Hospital the morning of the surgery and walked on a treadmill 2 days after surgery.

I had an echocardiogram after surgery. It showed a pressure gradient across the valve of 5 mm hg. or to quote the doctor " that's as good as it gets." My local cardiologist gave me a cardiolite stress test at 2 months post op. It indicated an EF of 70% and no eschemia in the heart muscle. He cleared me of all activity restriction and told me to run as hard as I wished.

I am now running 3 days a week and training for the Air Force Marathon.

This was my second surgery. I will be "in condition" should I require a third surgery for another valve down the road.

John Belluardo

5 coronary bypasses 11/93 Dayton, OH
AVR homograft 12/17/03 - Dr. Pettersson, Cleveland Clinic

 

[Brian]

Thanks Gemma
Now your replies have been putting my mind at ease again..

Thnx again,
Brian

 

[xtremlee]

Eddie
I am 33 and going for a aortic valve replacement on April 1st. Not looking forward to that but I am looking forward to getting it behind me. I dont think I could sleep ast night knowing I must have a 2nd surgery. Anyway I also have afib has anyone said anything to you about a Maze while you are having valve surgery?
I think I will go with a mechanical because If I have a-fib I will need coumadin anyways.

 

[Brian]

Well, Here I go...............>>>>>>

Well, Here I go...............>>>>>>

Well All,
I received my call today, my surgery is this Friday March 26 2004 at 9:00 a.m.. It was a hopefull and welcome call to receive, but never the less are we ever really prepared?

Thanks to all who have replied to my posts these past few days, it has be greatly appreciated.

Brian

 

[Raverlaw]

Brian,

Well, you certainly don't have time to sit around and worry about anything! Good luck and my thoughts and prayers are with you.

 

[Gemma]

Hi again Eddie, and anyone else wondering about mechanical valves and coumadin.
Just a quick thought -
Mike from Michigan has started a thread with very detailed questions about coumadin use. Might be worth a look if you haven't seen it already.
http://www.valvereplacement.com/forums/showthread.php?s=&threadid=6800
Gemma.

 

[Glenda]

Brian, remember you will be in my prayers. I have a feeling that you will come through with flying colors. I will look forward to your posts after the surgery.

 

[surfsparky]

Hi Eddie,
Welcome to the website. I too, found it a God-send - I just wish I had learned about it prior to my surgery! After research I decided on the Ross Procedure. I given the same info as you - that the homograft has a life expectancy of 15 - 20 years. What I wasn't expecting, was for my body to reject it (my immune system is scarring it over). I wasn't even aware that this could happen as a homograft in my understanding is not a living tissue. Funnily enough, if I had my time over again knowing what I know now, I still would opt for the Ross Procedure. But one thing I wasn't aware of, is that if the Pulmonary valve needs replacing, they don't use mechanical valves. So being only 32, I could be facing multiple surgeries in the future. (Particularly if my body continues to be unwelcoming to foreigners!) I don't think this sort of thing happens very often - I'm still yet to find someone on this website that has experienced this. This is not intended to throw you off the "Ross" course, but just something to think about so you can make an informed decision.
It's hard making a choice - as there is no easy answer... it is a very personal one and you'll just need to make the decision on what feels right for you.
All the very best,
Chris

 

[bvdr]

Hi Eddie,

Someone touched on this earlier and it really hit a chord with me. The thought of surgery again wouldn't in itself be so terrible but the thought of that period of deterioration prior to surgery would be.

I often say that the wait is the hardest part. Sometimes I wonder if it is just thinking ahead to the surgery or if it is the way many of us feel physically at that stage of illness.

Which ever way you choose, I wish the very best for you.

 

[Brian]

Chris,
You took a lot of the words right out of my mouth...yes it is too bad that you hadn't seen this website before your surgery. I can't tell everyone enough how they have helped me on everything that has to do with this whole ordeal a "God Send" is an understatement for how it has helped.
I have been realatively lucky, my side effects usually only hit me the severest after I eat and then try to do anything..,as long as I have an empty stomach I am OK...LOL..but then again...I guess I do have to eat sometime...LOL...
The Ross procedure for me at one point in time I thought would be the answer, until I too realized that the pulmonary valve would need replacing and then the homograft procedure I changed my mind because it isn't a live tissue and would have to be replaced..the original reason why I wanted to go with it..because I thought it was "Human" and would be the best. Then when I thought about it not being live tissue and would still need replacing, then I came a full 180 turn and decided on the mechanical valve, I'll manage my Rat poison and diet..at least try to.
As I sit here the time clock is ticking...22 hrs and 25 minutes my surgery starts...LOL..nothing like getting prepared..LOL... With the help and explanations of everyone here, I am going into this tomorrow 98% relaxed and content that I have made the best decision for "me". I am really looking forward to getting back to normal..LOL..as normal as I can be...LOL....which sometimes isn't all that normal...LOL...

What ever decision anyone makes please make an in formed on...ask questions and then ask some more..sometimes the docs are reluctant in order to not make you feel like they are making the decision for you. Yes I went through a time when I was hoping they would push me in the right decision, but I guess I can't really expect that..it's my decision and "me" who has to live with the decision, just like everyone else.
Same old saying..stop, look and listen....it pretty well is the best advice we can all use. (It equates into..Stop..take a breath, ask a question, then Look...read and read... and listen.. keep asking more questions).

Anyway, I have a ton of things to do today, while I can still lift more than 10 LBS...LOL..and DRIVE, so I had better get at it.

Take care and be good and Happy Health to you all.
Brian