New member /Decision Time

shop deals on amazon
Advertise with us
Shop deals on ebay
Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
G

Gero

Hi everyone, I have been reading advice and information within this forum for the last three weeks and have found it so informative. I am a 40 year old father of 4 boys (Six and under) and found out only 18 months ago that I was born with a bicuspid valve that has gradually deteriorated. It was found by mistake or should I say by luck! I had absolutely no symptoms although I was feeling very tired which I just put down to the lack of quality sleep and the 4 boys! I was first advised that the valve was leaky and in all reality I would require surgery within 10 years. Twelve months later, the time frame has changed! In January 2002, I was advised that surgery will be required in a six to twelve month period if the rate of decline continues. I am struggling with the type of valve to get and like many of the members, the Coumadin(warfarin) factor. I have only seen a cardioligist at this stage and am I right in assuming that a lot of the decision making will be taken out of your hands after all the pre surgery tests have been performed? Secondly, where did everyone get info about the post op diet assuming warfarin becomes an issue? I am very glad that I stumbled across this site as the experiences of all members is very heartening(no pun intended).
 
Welcome, Gero, to a wonderful site full of answers! I only have three sons (and one daughter), but they were surely a handful when they were younger.

I asked my surgeon one weak question about pig valves, and went with his recommendation of a St. Jude mechanical.

Coumadin is no big problem; I've seen no side effects from the medicine, except that Red Cross won't let me donate blood any more. Instruction is given in the hospital regarding diet, which seems rather simple. Avoid the dark green leafy vegetables like spinach (which I never liked anyway), green tea and a good number of other things I've never heard of. I found a seventeen-page listing somewhere of all kinds of foods and their vitamin K (the thickening factor) content, which was more helpful than the listing in the little Coumadin booklet I was furnished.

I would encourage you not to delay, but to get the answers you need and make the necessary decisions. My heart was declining for some time before I was correctly diagnosed (no, I did not have bronchitis or pneumonia, as the doctor diagnosed). According to my surgeon, I was cutting it pretty close, even though I had surgery less than two weeks after I was correctly diagnosed with congestive heart failure.

Welcome again, and feel free to ask lots of questions.
 
Hi Gero-

Welcome to the site. It's a terrific, caring place to come and everyone here "gets it" as far as this surgery. There is so much information here from patients who have many different types of valves and who are in various stages of pre-op and post-op, plus some wonderful professionals some of whom are patients and significant others who've gone the long mile with their partners.

My husband is the patient, he's had 3 valve surgeries and has 2 mechanical valves (aortic and mitral). He's been on Coumadin for 25 years.

He doesn't have any problems with Coumadin, he eats pretty much what he wants, he doesn't like spinach either and hates broccoli, so in his case I guess the diet gives him a good excuse not to eat those detested things, LOL.

Mechanicals give the longest valve life and that's a good thing because multiple valve surgeries have a whole other set of problems, i.e. scar tissue, adhesions, etc.

Some people don't want the "ticking" sound the mechanicals make, but after a while you won't notice it any more.

We hope to see you here often with questions.You'll get fast and honest answers from people who've experienced a lot.

Good luck with your choice.
 
Hi Gero,

Welcome to the site. I had my surgery at the age of 49. No children to worry about though. Well two cats, they were on my mind. I choose a homograph, that means I only have to take a baby asperin a day. No food restrictions, and I can do any sport I want to. There is allot to think about in trying to decide. Good luck with decission. martha
 
Hey Gero - welcome to our place. You have found the best place to be for help in your coming decisions. So many answers and help here. So hang around with us - we are a great bunch of friends. God bless:)
 
Hi Gero,
I understand fully. Since I started a thread called My Selection, I have come to understand the comments about coumiden, no big deal, at least yet. We'll see as our summer comes and I can feel well enough to become active. I always seem to scrape my finger or walk into a wall!
For me, I chose mechanical because I did not want to have another surgery when I was 65.
Yes the clicking was annoying, but you know what, I only notice it now when I think about it.
Whatever you choose, have confidence in your decision, stay positive, and avoid negative influences.
People on this site will pray and pull for you.
carbo
 
Hi Gero,

Welcome to the site. Hope you get a wealth of information here to help you make your decision.

I have been on Coumadin for 2 years now, and have not had to make and serious diet changes. The only major thing that effected me, is that I do not eat salads anymore, and avoid green leafy veggies, like spinich, and brocilli. Other than that, I eat and drink what I like.

My INR levels have been extremely stable. It is rare that I go out of my target range.

Looking forward to your participation on the site,

Rob
 
Welcome

Welcome

Hello Gero,

Welcome to this site. As you already know from reading our posts over the last 3 weeks or so, this is a very helpful and supportive group. You can get a lot of information hear that may help you make the decisions ahead, or at least raise questions that you will want the professionals to answer.

My aortic valve situation was about the same as yours (congenital bicuspid, discovered 5 years ago in a routine physical, asymptomatic, followed by echo cardiograms every 6 months, and told in November after a TEE to schedule surgery within the next 6 months to 1 year.)

I opted for sooner rather than later and had a bovine tissue aortic valve replacement 5 weeks ago.

I'm 59 years old, I didn't want to have to deal with coumadin unless I absolutely had to, and I wasn't too concerned about having to go through another surgery in 15 or 20 years.

I have no regrets about my selection and everything is going fine for me. However, I was prepared to deal with whatever valve I got, since the final decision as to what valve to use is made by the surgeon after he's inside your chest. Everything doesn't always go exactly according to plan.

Discuss your options with your cardiologist and with the surgeon after you have all your tests, but weight the factors that are most important to you as you go along. The test results may limit your choices, but you will still have some options left. If you have a lot of trust in your doctors, you'll consider their recommendations heavily when you make your decision.

An important thing to remember is that no matter what your decision is or what type of valve you ultimately receive, you're going to be fine and you'll be around a lot longer and a lot happier that you would be without the surgery. That's the bottom line. You can deal with ticking, diet restrictions, thoughts about future AVRs, etc. It all comes down to a series of trade-offs, but there probably isn't a bad decision in the bunch. :)

I look forward to seeing many more posts from you in the coming weeks.

Ron K
 
Hi Gero

I too had a bicuspid aortic valve. I had my surgery this year at the age of 40 though I had known about it since a child. It's still a surprise when they tell you that it is time for surgery. The only symptoms I had were fatigue and eventually I started to notice that I was becoming breathless doing any sport etc. I chose to have a pig valve as I didn't want to have to take Warfarin for the rest of my life. I know that I face another surgery in 10 to 15 years but hopefully by then there will be something new which will last a lifetime and not require Warfarin. I am now 3 months post op and feel great. I am not on any medication. Was on Warfarin for 8 weeks after my op. The surgeons will tend to sway you in one direction or another depending on what they do most but the final decision is up to you. My surgeon recommended a mechanical but when I asked for a pig valve he was quite happy to do this as long as I understood the implications of further surgery. Anyway good luck with your choice and let us know what you decide.
 
hi gero!
welcome to this wonderful site. the folks here are just fantastic and have been a lifesaver to me throughout my husband's pre, during and post surgical experience. it makes such a difference when you are talking to people who have actually "been there".

my husband had a ross procedure (there are several others here too, ben smith, mara, and a few others).
you are young and have many options open to you.
my father had a mechanical valve put in about 3 yrs ago and takes coumadin. as you will probably hear from most coumadin takers, it's not a big deal.it seems it's usually the ones who don't take the coumadin who are so wary of it.

there are so many threads on valve selection and choices (i.e. one started by peter easton last year in july or august. you can find it in either small talk or heart talk_ there are newer ones too).

ron is so very right. you cannot make a wrong choice. whatever your decision, you will end up with a new valve and a healthy "fixed" heart.
please let us know what you decide. we are here to help. glad to have you among us.
be well,
sylvia
 
valve choice

valve choice

Hi Gero,

Welcome to the best heart site around.

I had aortic valve replacement in January and chose a mechanical valve, I did not want to face another surgery (I am 47)

My Inr is a bit up and down and I am still on weekly blood tests
but it is no problem for me.

I hardly notice the ticking

Whatever your choice, you will have a better quality of life

Good luck in making your decision

Jan
 
Hi Gero,

Welcome to the greatest valvereplacement website on the net. I had two valve surgeries within 11 days in August 2000 and my surgeon choose the St.Jude's Mechanical for me because of my age. I also had NO intensions of doing this surgery ever again, but how wrong I was. Things can go wrong with any surgery and sometimes afterwards. I am on Coumadin. Coumadin is not a real problem once it is stabalized. It can be scary. The only side effect I noticed shortly afterwards was hairloss, but that subsided after a few months. I had to get another doctor who knew what he was doing regarding the monitoring of the Coumadin. Not everyone is an expert in this field, so be careful!
I eat whatever I want in moderation and don't omit green vegies. As a matter effect I eat them every day to keep my diet "stable" and to get about the same amount of vitamin K. If I do not do this my INR will go sky high, which happened the week before last when I was on vacation. I had not been watching my vitamin K intake as closely as usual and my INR went up to 6.1. That same evening I ate a large green salad and the following day had spinach omelet for breakfast. That day INR was 4.8. Still a wee bit high but I was not too worried about this as long as it stays below 5. A low INR makes me very anxious and scared.

Hopes this helps!

Christina
Congenital Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St.Jude's Mechanical

PS. My first valve was a Sultzer Carbomedics and it was loud. With my second the surgeon put a St.Jude's in. I only hear a faint ticking when I am going to sleep and when everything is quiet in the room. I think I got lucky and feel truly blessed!
 
Last edited:
I have had the pleasure( kidding) of 2 avr surgeries in 12 years.
My 1st surgeon placed the porcine valve at age 34.
My life was so normal and very wonderful.
After it began to fail 11 years later I was given a mechanical by the surgeon who, when consulted 11 years before, had recommended the mechanical.
So, I can say that I fully enjoyed those yrs without coumadin and the weekly finger sticks to test. I do feel a bit less healthly now, maybe due to 2nd surgery or the fact that I was on deaths door going into that 2nd one.
You and the surgeon must make that final difficult decision. I must admit I always thought that facing a 2nd surgery would be easier but it wasn't.I was actually more upset to find out that my porcine was leaking and sure wanted to postpone that surgery experience again.
Many things to ponder...
Good Luck.
Gail
 
Welcome!

Welcome!

Welcome to the forum, I am in a very similar situation. I'm a 30 yr old father of 4 active boys with a congenital bicuspid aortic valve. Recently diagnosed with severe insufficiency and a small aortic aneurysm (is that an oxymoron?) Anyway just had a TEE done (echo from within my esophogas) that verified that I need surgery quite soon. I am leaning heavily towards a Ross procedure, possibly with a cryovalve SG. I have been on Coumadin for 6mos and it wasn't a problem but I am still leery of the mechanical. I am hopefull of getting 20 yrs or more out of the Ross procedure and by then who knows what will be available.

Good luck I'm sure you will make the right choice,

Brooks
 
Gail in Ca said:
I have had the pleasure( kidding) of 2 avr surgeries in 12 years.
My 1st surgeon placed the porcine valve at age 34.
My life was so normal and very wonderful.
After it began to fail 11 years later I was given a mechanical by the surgeon who, when consulted 11 years before, had recommended the mechanical.
So, I can say that I fully enjoyed those yrs without coumadin and the weekly finger sticks to test. I do feel a bit less healthly now, maybe due to 2nd surgery or the fact that I was on deaths door going into that 2nd one.
You and the surgeon must make that final difficult decision. I must admit I always thought that facing a 2nd surgery would be easier but it wasn't.I was actually more upset to find out that my porcine was leaking and sure wanted to postpone that surgery experience again.
Many things to ponder...
Good Luck.
Gail
Click to expand...
 
Welcome!

Welcome!

I am totally prejudiced in favor of the homografts of which I have one. Still it is a very personal choice that only you can make with the help of your surgeon. Study all you can and make your decision and then be at peace with it. Good luck and God bless.
 
New Member / Decision time

New Member / Decision time

To Gero,

I read your post and I had a congenital bicuspid aortic valve replaced at age 39. I received a St. Judes valve and it has been 12 years since my surgery! I take coumadin and have not had any problems with bleeding. I eat pretty much what I like and my pro-times are done generally once a month now and my dose of coumadin is basically stable. I recall initially being able to hear my valve clicking and I was concerned that others could hear it. In truth I think at first if you are in a very quiet place your valve can be heard but I do think that over time the clicking you would notice it less as I rarely notice it now. I have never had anyone standing near me ask what that noise was. I know that those who don't have a mechanical valve express a concern about this but it really is no big deal. As has been stated the decision of which valve is a very personal one but I'm sure that once you have all the information you will choose the one that is right for your lifestyle.
Good luck.
 
Gero-

I had a congential bicuspid aortic valve with aortic stenosis and insuffciency, diagnosed at about age 4. I had the Ross Procedure last summer (age 33). There was never any really serious discussion about getting another valve. My cardio suggested the Ross and I researched all I could and that was that. My cardio is my parent's neighbor and I have known him for many years, so I trusted his opinion. I figured what he suggested for me was what he would suggest if it was his kid having the surgery. I knew I did not want a mechanical, but that was for personal reasons. Coumadin seems scary to those of us who don't take it, but the Coumadiners on here have sure changed my opinion of that drug. Everyone seems to be coping just fine. Plus, they get that cool Pro-Time machine.

In this matter; valve selection, there is no right or wrong answer, only the one that best fits you and your situation. Talk with you docs and then you'll know what's best for you. Just as Ron K. said.

Good luck!
-Mara
 
Gero,

The decision is still yours to make even after all the tests are done. It?s the worst part of this whole surgery thing.

My cardio was sold on a mechanical valve for me. My heart will probably be in a-fib for the rest of my life, so I would be taking the coumadin anyway.

I didn't change my diet at all. I don?t like meat... so I eat a LOT of vegetables, I drink alcohol, my life is stressful at times, I water ski... I?m a rotten heart patient. But the point is.. I?m on coumadin... and it?s not all that bad. If I can say that... surely anyone can! lol AND.. My cardio has promised me there is a ?new and improved? drug in the near future to replace coumadin! :)

Rain
 
Redundant information

Redundant information

I'm sorry to say the same thing as the rest. I agree with the very judicious manner in which VR members approached your question. You choose and there is NO WRONG ANSWER. Nobody can play both decisions out for you. I had to go with a mechanical (Sulzer Carbomedics valve) as this was my second surgery. My aortic valve was repaired (Cleveland Clinic-Dr. Cosgrove) back in '92. I had the mechanical valve implanted 7 weeks ago. No matter how you cut it (no pun intended) you don't have an easy decision. However, anything can happen with either choice. Make your decision and go to a facility that does a lot (I mean A LOT) of what you have chosen. This way, the odds are in your favor. You need an experienced surgical team. Ask those tough questions and shop around until you are satisfied. I visited Cleveland, NYU, Mt. Sinai (NY), and finally had the surgery close to home at Mt. Sinai in Miami Beach.

Best Wishes................
 
You must log in or register to reply here.

Latest posts

Back
Top