Anyone ever regret the type of valve they chose?

[ddarsch]

Porcine for 11 years

Porcine for 11 years

Allan:

I had a porcine valve put in in Nov 1991. I have had the 11 most wonderful years of my life. I am now faced with making the decision again, as the valve is beginning to show some deterioration. I am leaning towards another biological, but will have to make the decision concretely within the next month.

So, no regrets what so ever - although I am scared to go through the surgery again

 

[Beverly]

Reply to Allan's question about regretting valve choice

Reply to Allan's question about regretting valve choice

Allan,

I have been trying to post a response to your question but have been having a problem doing so. In 1990 at the age of 39 I faced the question of what type of valve to select and I asked my surgeon what valve he would recommend if I were his sister. He recommendd the human valve but also advised me that if at the time of surgery the valve was not a perfect fit he would implant a St. Jude's mechanical valve. I recall when I regained consciousness while still on the ventilator I heard the clicking and I knew that I had gotten the mechanical valve. I was disappointed. Since that time I must say that I can not complain. I had what I guess is the usual time of adjustment getting my coumadin dose right and usually I go about once a month to have it checked now. I don't mind. As for my health I can not say that I have suffered any unusual amount of illnesses. As a matter of fact, this year I didn't even have one cold. This is a record for me even before I had my aortic valve replaced. The clicking while a little bit of a concern to me at first is no longer noticed unless I am in a very quite room and particularly trying to pay attention to it. I hope this response is helpful to you.

Bev

 

[Peachy]

Hi Allan

I got my aortic valve replaced on 7th January this year. I went for the pig valve. Choosing which type of valve to go for wasn't an easy decision to make. I decided on the pig valve as I didn't want to have to take coumadin for the rest of my life and I felt that my active lifestyle would be affected by the fear of falling and injuring myself. The surgeon recommended the mechanical valve but when I said I wanted to go for the pig one he was quite happy as long as I knew it would only last 10 to 15 years. I'm hoping that by the time I need a replacement there will be something new on the market which will last a lifetime and not require medication. Anyway I feel great now and have so much more energy. I have had the flu *** for the past couple of years and find that this has stopped me from even getting bad colds. I'm sorry that you have regrets with your choice and hope that you can resolve your problems and enjoy life.

 

[Bob Gleason]

Tough Question, Alan.......

Tough Question, Alan.......

Since I had my valve replaced (aortic) Nov, 1999, I have struggled with how loud and how strong it is. Every day, I know it is present, but everyday I also know that without it I probably would not be here. I had a St Jude valve implanted, and my cardio says its the loudest and strongest he has ever heard. People near me can hear it and sometimes it is actually painful for me.

But, I believe this is because of my physiology and nothing else. Others have mechanical valves and do not hear or feel it as I do.

Deciding which valve or procedure is difficult, for sure, but I have no regrets for the choice that I made.

And I don't mind the coumadin.............or the blood testing. Its LIFE we are deciding upon here and there are choices one can make.

 

[Rain]

More susceptible to flu/viruses?

More susceptible to flu/viruses?

Allan,

Do you really think it?s the coumadin causing you to be sick all the time?

I don?t think I?m !"more susceptible to flu/viruses because of the mechanical vavle". [

COLOR=blue]Cool!! I found color! lol[/COLOR]

Since my heart surgery 4-6-00 I?ve only been sick one time... strep throat. Wait... I did also have a cold. I?ve never had a flu shot in my life, but I don?t even remember the last time I had the flu... well, I was constantly sick with colds, etc. the last couple of years before the heart surgery. But that don't count... I now know that was because I was in chronic heart failure. I?ve always had a great immune system, I?ve always been healthy... well except for cervical cancer and heart failure. LOL

Do you mechanical people out there think you are more susceptible to flu/viruses?? THAT would make consider a different valve way more than coumadin. I just don?t believe it?s true. If it is, I wanna know before Ryan has to make this decision.

I've probably been one of the biggest complainers about coumadin, I have to say..... It's not all that bad! You know, it can be as simple as eating three meals a day?! Hilarious! I?ve made eating a little more of a priority. I still do all the stuff I did before taking coumadin. I?m even thinking I would rather Ry have a mechanical valve. Although he?s thinking tissue. It?s nearly impossible to convince a young, strong 18 year old that he will one day be an older, weaker man.

Rain
P.S. I think it should be standard procedure to issue a pro-time machine with every mechanical valve

 

[Zipper]

Hi Rain,

In my experience with the mechanical valve and taking coumadin...4 yrs today!..I have not had any additonal illnesses. I do have the 'flu shot' each year as it is recommended for those wit heart disease and also because I work in ER admitting and am exposed to EVERYTHING! This last year I have not had a cold even!

I agree about the Protime unit....I've only had mine a short time and my insurance refused to pay...but I would advise anyone to get one. As even going to the dentist requires antibiotic.. like to be able to test before and after. Protime allows this and makes me feel more secure knowing my level.

I know valve choice is difficult..it seems especially for a young person..Best of luck to Ry in making the best decision for him !

Zipper

 

[RobThatsMe]

Hi Rain,

I have had a very similar experience since I received my mechanical heart valve. I do not seem to catch as many colds as I used to prior to my surgery. In fact, it is rare that I catch cold, and have not had the flu since my surgery over 2 years ago.

Coumadin hasn't been a problem, and yes it wuld be nice if everyone was able to get a home testing unit when they receive a mechanical heart valve, or for any reason that requires having to take blood thinners.

Good to see you posting!

Rob

 

[ILoVeNY25]

Dear Allan,

I must say I understand and sympathize with you greatly, I am almost 6 weeks post op from AVR/MVR with St. Judes, and question myself everyday if I made the right desicion going with the mechanicals. My INR has been hard to control and I've been running to the lab, sometimes 3 times a week. Being only 19, I had the decision to make if I wanted to go through this surgery again. I don't want to but I don't even know if the valves will last, I hear the span of the valve is 30+ years but I'll still only be in my fifties. I also made this decision knowing I may never be able to carry a child, Even though I have some regrets, I think I would probably make the same choice again if I had to and just thank God everyday that I'm alive because of these St. Jude valves. I hope you find peace with your decision.

 

[Rain]

Hey Nicole

Hey Nicole

Nicole,

Choosing a heart valve is a very tough decision, especially when you?re so young. Try not to second guess yourself.

I wanted to tell you... I had the hardest time getting my INR stable. It seemed EVERYTHING caused it to swing one way or the other. I finally started keeping a diary of everything I put in my mouth and the time of day. I also kept track of when I missed my exercise class and anything else I could think of that was unusual to my daily activities. It was very helpful! Amazing how missing a meal or an exercise class can mess with your body!! I got to where I felt like wringing my cardios neck when he said the word ?consistent? to me!!

I don?t eat meat.. But I DO eat a lot of vegetables, rice and beans. I found that what I was eating didn?t make as much difference to my body as simply making sure I did eat.. consistently. lol Even with eating all the salads and whatever else I eat.. I still only take 3 ½ mgs a day.

Each of our bodies are unique. But never the less, a diary can be very beneficial. You?ll be okay.

Rain

 

[Dan O'Brien]

I am now 15 months post AVR surgery and I went with a homograph. I am 38 years old with two young children. I have been quite fortunate so far to have had no difficulties following my surgery. I have felt pretty good for the last year. I take a baby aspirin and a multivitamin a day, and that's it. Otherwise, I feel back to normal or better.

I know there will be another surgery for me. I found the initial surgery to be less traumatic than I expected, although still no picnic. I am not worried about doing it again right now. I am happy with my decision so far. Just my two cents worth.

 

[MarkU]

I'm almost 18 months post AVR and have absolutely no regrets about my decision to have a St. Jude valve.
I was 47 at the time of my surgery and didn't want to face the prospect of additional multiple surgeries in the future. Even though surgical techniques will surely improve dramatically in the next twenty to thirty years, I worried about the accumulation of scar tissue and the prolonged recovery time as I age.
I would also worry about the accumulated effects of by-pass time. A good friend of mine is a perfusionist and we have had many long discussions about this. While the procedure is as safe as they can make it, there is still a lot they just don't now about long-term effects. Definitely more in-depth study is needed in this area. I have seen where they are doing beating heart coronary by-pass surgeries now, but I don't see how they're going to manage that when doing a valve job.
The Coumadin has been no big deal at all. I lead a pretty active lifestyle, but haven't experienced any bleeding problems with minor cuts and scrapes. A head injury would be my biggest worry, but I'm not really into any high-risk activities like riding motorcycles, etc.
All-in-all, I'm happy and content with my decision.

 

[joy]

Hi Allan, I had my MVR on 8/27/01, and I had a Bovine put in. I also get not just headaches, but migraines. My cardiologist put me on metoprolol which controls my PVC's as well. He also told me to take 2 aspirins a day, instead of 1. I also unlike a lot of you have to take 2 penicillin pills every day. They are NASTY! But I am allergic to eggs and can't have to Bicillin shot. That also means that I cannot have the flu shot. I have fewer colds, and I get over them sooner. It used to take me about 3 months to get over a cold, but now it takes me like 2 days and I feel better. I know i have a least 2 more surgeries in my life, and yes, the next one will be a mechanical, but I was willing to take the risk because I am sure that medical science will come up with something new that will out live our bodies. Myself, I am forgetfull, and have a habit of forgeting to take my meds on time without my husband's reminder. I couldn't do that with coumadin. That was the main reason I chose the tissue valve.

Nicole, I know it sucks not being able to carry a child, but like you I had rhuematic fever when I was very young. After my first child i got something called sydenham's chorea. The rhuematic fever went into my central nervous system. I couldn't control muscles at all. I couldn't talk, eat, sleep, I would have seizure like things where I would black out and run into things. With the risks like that out there, I wouldn't want to get pregnant. I went into a coma during my second pregnancy, and had to drive to Seattle(a two hour drive from where i live) every week. I am glad your surgery went well, try not to second guess yourself, you are obviously very level headed for someone your age. You're more mature that I am! Take care of yourself, alright?

 

[gary]

To: Allan Mack

To: Allan Mack

I didn't have time right now to read all the responses, so if this is a repeat, my apology.

Eliminating the Coumadin concern by choosing a tissue valve will not necessarily work out that way.

After two years post-op with my bovine valve, I am now on Coumadin due to a bout with A-fib three weeks ago tomorrow.

This may be temporary, one hopes, but it may also be permanent.

In the event that you did not know that coumadin might still be necessary depending on your age, overall c-v condition, and other maladies (or absence of them).

 

[ALCapshaw]

Gary,

Why did your cardiologist decide to treat your A-fib with Coumadin?

I take a low dose of TOPROL XL (Beta Blocker) which works fine for me. Seems like a better solution than Coumadin !

'AL'

 

[Johnny Stephens]

A-fib can cause reduced blood flow or pooling in the atrium, resulting in formation of clots. The coumadin is frequently prescribed to prevent these clots from forming.

 

[gary]

Al: Not sure why since my cardiologist only

Al: Not sure why since my cardiologist only

seems to answer questions with curt or incomplete responses. I usually have to guess or interpolate the rationale.

.

Since an A-fib incident would have me headed for the hospital in about an hour at most, and I'd be on a Heparin drip a few minutes after that, AND it takes at least 20 hours for clots to even think about forming, the coumadin seems to me like a complete waste.

Since this was my first (and hopefully last) incident, and he does yet not know for sure if I'm A-fibbing WITHOUT being aware of it during the day or particularly while sleeping, he is being cautious since more than 20 hours might go by and a clot might get loose or form.

That's the only reason I can think of.

He's going to put me on Holter for 48 hours on July 19 and if there are no recorded A-fibs during that time and none since a month ago, he will likely stop the coumadin.

Conveniently I have run out of my non-refillable scrip last night and I will have an opportunity to 'test' whether a cessation of it will relieve these rashes.

The only other thing I 've done differently is switching to de-caf coffee and possibly the process or chemicals they use, my have casued an allergic reaction.

I'm checking that now for any information on the 'net.

 

[gary]

John Stephens: Good point about the

John Stephens: Good point about the

reduced flow. My resting heart rate has been in the low 50s and sometimes hits the high 40s so he may be considering that instead of the A-fib problem.

I'll talk to him Monday to relate the rash incident and get the scrip filled if he orders it.

Though I don't expect my heart rate to change between now and the 19th of July when he may cease my Coumadin altogether.....this heart thing is as close to an art form and at least as mysterious as calligraphy or haiku.

 

[Nancy]

HI Gary-

One thing we've discovered throughout all the years that Joe has been jousting with his heart problems is that the farther down the road he goes, the more complicated the situation becomes. There are sub-conditions such as afib, CHF and pulmonary hypertension, now cardiac cirrhosis, which ebb and flow. His meds sometimes have to be adjusted accordingly, and he is always getting bloodwork. To get a complete answer from his cardiologist as to just what is going on at that particular moment, we would have to schedule an all day appointment, and his cardiologist would have to assume the roll of professor, complete with charts. Then the next week, it could all be different.

We understand an awful lot about what is going on with him, at least enough to keep him relatively safe for long periods of time, but the balancing act is what we're going to the doctors for and they do it very well. It's a tough job. But we trust their judgement. If we have questions, we usually get a fairly short answer. It's too complicated. And sometimes it's like a house of cards.

You're right, cardiology and internal medicine with heart valve patients is truly an art.

 

[Stevo]

This is as wide as it is long. Pyro valves have thromboembolic prob's, porcines (such as the Wessex medical) are gluteraldehyde fixed non- allografts, hence will be avascular and require excision and re-implantation.

Depends which you would rather have- anticoag. therapy or reintervention. Porcines don't always mean no Coumadin, anyhow

 

[sylviayasgur]

hey gary!
what did the holter results show? are you in afib? is it constant? intermittent?
what did the cardio say? joey is on amiodarone for his afib, but he was successfully cardioverted several years back, after which he was put into the hospital to regulate meds to prevent the afib (again, successfully). 4 days after his surgery he went into afib and his old meds did not work, so they opted for the amio, which has been a wonderful drug for him (i know others have frightening stories to tell, but it is working well for joey).
take care and please let us know how you're doing.
be well, sylvia