unsure of valve type

[youppi69]

Hello, My name is Karen and I am 39 years old, I am new to this site and am awaiting valve replacement surgery on May 3/07 at the Ottawa Heart Institute and very scared.
I'm not sure of the type of valve I want, I am leaning towards Tissue or Pig valve, what are your thoughts

 

[Karlynn]

Welcome! If you weren't scared, you wouldn't be normal. But it's a highly successful surgery that will give you a new lease on life.

Valve choice can be based on many factors and is a highly personal decision. Each of us can tell you what we have and why, but first it would probably be more helpful for you to tell us about yourself, your life style and what your expectations are with a new valve. And it would probably be helpful if you tell us why you are leaning a certain way. There's lots of strange information floating around in the medical community about the different valve types and we'd like to make sure you are operating off correct information on each type before you make your final decision. I found that most often the valve that one is leaning towards when they join VR is the one that they end up with. But we have had a few change their mind when they see other opinions and information.

Here's a good place to get started:
http://valvereplacement.com/forums/showthread.php?t=14330

Glad to have you with us!

 

[youppi69]

not quite sure

not quite sure

hi
in answer to your questions, im married for 17 years, no kids, have a semi active lifestyle and dont take any medications at all, not great with swallowing pills.Also i dont like what coumadin does to people , bleeding easily, bruising and i dont take pills

I am having a ct angiogram of the heart and ct scan of the head on friday april 13/07 , also nervous about that

 

[Phyllis]

Welcome to the forum, Karen. I put you on the calendar for May 3rd so we can support you all the way over the mountain and back. Read all you can here on valve choice, pre-surgery and post-surgery and I am sure you will be much calmer as your surgery approaches. Best wishes to you.
Phyllis

 

[aussiemember]

Karen, welcome to the site. I'm 38 and due to have a valve replacement in the next couple of years. I am yet to make a decision on which type of valve I want - I would say this however - there is so much information on this site and really relevant stories posted by many people explaining why they chose their particular valve. You will also notice that most people are very passionate about their choice and the reasons for it. My advice to you would be to read, read and read much of the valuable information on here - it will certainly give you a much better picture of the choices available and the positives and negatives of each choice

 

[Susan BAV]

Being scared is normal

Being scared is normal

Hi Karen and welcome to the site; glad you found it before your surgery! Be sure and read the "sticky" thread at the top of this "Valve Selection" forum; you will no doubt find it helpful.

What kind of valve do you need, mitral or aortic or other? Do you know why? What type of valve does your cardiologist recommend? What kind does your surgeon recomend?

I'm glad I got a tissue valve at age 42, however, sometimes a person with a tissue valve has to take Coumadin anyway, sometimes because of post-op rhythm problems such as A-fib -- sometimes taking it only briefly but sometimes for long-term -- so there are no guarantees you can completely avoid Coumadin. Also, I am on daily aspirin therapy and I think I do bruise a little easier than when I wasn't on it but there's no doubt that dealing with taking daily aspirin for me is easier than dealing with daily Coumadin.

Regarding swallowing pills, I was a pill-swallowing machine for a few weeks before the surgery and three months afterward. I had to swallow all kinds of pills for my heart all day long and it was even complicated to schedule all those pills out! That's pretty much the nature of the open heart surgery beast, for most of us anyway. I only have to take a couple of things now.

Being scared is normal. There is a lot of information to absorb from this site and it may seem overwhelming at first also. Just take in bits at a time as you can and suddenly you will be surprised at how much you have learned.

Ask all of your questions and utilize the Search capabilities of the site also. Take care and post again.

 

[temp69]

coumadin myths and other thoughts

coumadin myths and other thoughts

Karen: I got a new valve at age 56 and chose an On-x. The coumadin took a little getting used to but now I don't even notice it, it's like taking a small vitamin or something, no big deal, really. Others may have other experiences.

The point is to read up and make your decision. If you want kids, then go tissue, but know you'll have to reop.

As for the surgery itself, YOU WILL BE JUST FINE! It's not a walk in the park, but they put you out, you wake up groggy, in some pain, and get better. At your age you should do really well.

any questions, feel free to ask

research the on-x, we who have it might not to have to take coumadin at all in a few years if the trials pan out.

 

[briansmom]

Welcome

Welcome

Welcome to the forum. I've said it before...these people are the best. We can help you through this process. Read some of the valve posts on this site and you will come up with more specific questions for us. My son just had OHS and got AVR. We chose an on-x valve because he was not a candidate for a tissue valve. He has many complications but hopes to return to driving an off-road car soon.

 

[youppi69]

in answer to your questions, i have an aortic valve (bicuspid) that I was born with and I am leaning towards the pig valve because of not wanting to take coumadin.The cardiologist suggested tissue valve and the surgeon suggested
mechanical.
Has anyone had a CT angiogram done before?What is it like?They said we have to set aside 3 hours to stay at the hospital this Friday April 13/07.I've never had an IV before so I'm scared of that (I'm a wimp, never been sick before like this)
Also, we are leaving on Sunday for St Lucia for 1 week, both cardiologist and surgeon said it was ok but not to overdo it, the humidity will be whats not so good they said.

KAREN

 

[Superbob]

Karen,

Welcome to the forum. Since your surgery is in May, you fortunately have some time to read about the valve choices and decide what is best for you. Karlynn set the stage very well and referred you to a great thread on the factors that go into this difficult decision. Once you have looked at the pros and cons of the various options and have questions, feel free to fire away. You will get plenty of thoughtful responses from a variety of perspectives.

All best wishes to you,

 

[Bill Hall]

Karen - I am facing a resurgery and am a bit scared myself. I had my first surgery in 2001 and I found that learning the process and recovery helped with the fear. So, here is some information you can use. First of all, the surgery is normally very successful and you can return to normal life within several weeks (6 weeks away from work for me). I had no apparent tiredness or fatigue when I returned (I was age 47). The pain was much less than I expected and they have methods to combat pain. You are in the ICU for maybe a day or two (I was there for three days). You are out of the hospital in a week (mine was 10 days). As far as the valve type, I let the doctors help me out and they told me a mitral valve repair and aortic homograft was my best choice. I also wanted to avoid the coumadin. Most on this site don't have problems with coumadin, but they can tell you.
Bill

 

[dick0236]

To: unshure

To: unshure

This is a very good thread with lots of good info. Especially read the Sticky: Famous Tobagotwa.....on valve selection. Your important decision is have the corrective surgery, the choice of valve is somewhat secondary. Either will work and each have their pros and cons. Work with the medical professionals you trust and "go for it". Your choice of valve type will be the right one! Don't be too scared. In 1967 my surgeon gave me 93% assurance that I would survive the surgery and the odds are much, much better today. And, like the vast majority of valve reciprients, I continue to enjoy a very active, healthy life.

 

[Karlynn]

In case you haven't run across this thread yet, I recommend you give it a read. http://valvereplacement.com/forums/showthread.php?t=17116 Those of us who take Coumadin find that many in the medical community have an exaggerated fear of the drug. Some of the reasoning may be that some only see those who have problems with it and it skews their perception. It's kind of like our Anti-coagulation forum here. If you read it, you'll see lots of post with questions or issues with high INR or low INR, but the reality is most of us don't have a problem with it. People don't post just to say "I'm in range yet again! woo hoo!"

Please understand that when those of us with mechanical valves post information or debunk misinformation, it's not done to try and talk the originator of the thread into something else. It's done more so for those who may be lurking and reading and we don't want myth and error to be taken as fact and protocol by those who don't join and ask questions. We also don't like to see anyone become so terrified of having to take the drug, and only find out that fate has caused something to occur that they end up on it. It's probably one of the most misunderstood drugs around. It's a drug that allows you to live a full life, it doesn't take your life.

I've been on Coumadin for over 15 years. We have two members who have been on it for over 40 years. I don't bleed easily, nor do I bruise any more easily than I did prior to my VR. (I've always been somewhat of a banana! If anything, I seem to have less bruises now than I did in my younger adult years. Maybe that's because my children are grown!) Many in the medical community will lead you to believe you become a hot house flower once you start taking the drug. Nothing could be farther from the truth.

Do your research on the valves. I recommend forming a Plan A and Plan B with your surgeon. There are very sophisticated tests that can give doctors a pretty good idea of what they will face once they open you up. But the reality is that they won't know for certain what they face until they get in there and what they once thought would be an appropriate plan of action may need to be adjusted in the OR.

Since you have a bicuspid valve, I would recommend reading posts by Arlyss. She has many many helpful suggestions and information for all the possible nuances that seem to differentiate bicuspid valvers from other valve issues. I know that one of the things she recommends is that you have your aorta assessed because some bicuspid patients can have aorta issues that may need to be dealt with at the time of surgery.

And most importantly - during this whole education process, remember this is all information that you are taking in to improve your life and save it. For doing nothing is the worst choice someone in our situations could make.
Best wishes.

 

[ALCapshaw2]

Welcome Karen,

Before you decide on a valve, you need to REALLY understand the differences between the options and the consequences. ALL valves have both positive and negative aspects.

The down side to Tissue Valves is that they WEAR OUT and need to be replaced. The younger you are, the faster they wear out. Untreated Porcine Valves tend to wear out in 8 to 12 years. More modern Porcine Valves will hopefully last a bit longer. Bovine Pericardial Valves 'may' last 20 years of so IF you are over 60 years old at the time of surgery. If you are younger, they will wear out sooner. How many times are you willing to go through Open Heart Surgery and incur the increasing Risks?

First surgery risks are 1% morbidity, 1% stroke.
Second surgery the risks double.
Third time starts getting more dicey with LOTS of scar tissue and is often done using alternate entry routes (typically through the side).

The down side to Mechanical Valves is being on Coumadin. As has been said, day to day living with / on Coumadin is NOT so bad (I've been on it for several years, and yes, I wanted a Tissue Valve too, but other issues precluded that option). Going OFF Coumadin for other invasive procedures and / or surgery IS a hassle (Lovenox injections before and after or in-hospital Heparin Drip before and after). Been There, Done That, twice. Came through it OK, just a lot of 'lost time'.

For my next surgery, I am asking for an On-X Mechanical Valve made by MCRI. Seems to offer several advantages over older mechanical valve designs. To my mind, the BIGGEST advantage is lower potential for clot formation which is of benefit regardless of anti-coagulation level, especially when you need to go OFF Coumadin for other procedures.

'AL Capshaw'

 

[lance]

Hello fellow Ontarioan

Hello fellow Ontarioan

Hello and welcome to the forum where you will receive the most accurate, helpful, supportive information anywhere. Try and keep in mind any valve you choose will be an improvement over the one you have.

Following your surgery your pain will be well taken care of and you will recover in what will seem like no time at all.

If you choose a mechanical make sure you educate yourself about warfarin and again this site has excellent information. You will be given inaccurate information about warfarin and you need to instantly recognize it. I have been given very bad advice by MDs and dentists. When it comes to monitoring your blood you will need the services of an anti-coagulation clinic, not your local doctor, to keep your level in range. I do my own blood test, report the level to an anti-coagulation clinic and they determine the dosage although by now I can do it myself. Home testing and dosing is not rocket science and you will get the feel for it if you decide on that route--it is the best way. Bruising and/or bleeding have never been an issue for me--being chilled to the bone most of the time is. According to Health Canada guidelines every valve patient under the age of 70 is to be offered a mechanical valve to avoid future repeat surgeries so make sure your specialists fully educate you about all the replacement valves available. In other words be an educated consumer.

Whatever valve choice you make will be the best one for you and you will have your life back.

Cheers

 

[WayneGM]

Hi Karen,

Welcome to the VR.com community. Being scared is normal, but I can honestly say my OHS was not nearly as bad as my worst fears expected. I had a valve repair so can't help you with the valve choice but there's lots of information and insights on the subject to be found on this site. Best wishes.

 

[Kathleen]

Since any OHS is a no guarantee surgery I would ask myself a different question. I can't think of anyone when asked if they want to take coumadin would reply with a resounding yes. I had to ask myself the question 22 years ago that had an easy answer. "Do I want to do this again." My two St Judes will be 22 years old in three weeks. Perhaps I can add the time together and come up with 44...
Kathleen

 

[Kate]

Hi Karen,
You and I have a lot in common! I was 38 when I had my bicuspid aortic valve replaced and, like you, I chose to go with a biological valve (bovine pericardial) to avoid the potential problems caused by Coumadin. Based on my lifestyle and health care options, I decided repeat surgeries were a better medical risk than daily like on anticoagulents, and I've been very happy with my decision so far. That said, as many described above, it is important to learn all you can about benefits and risks of each and make an informed decision based upon your own unique situation. What is right for me may very well not be right for you. For example, an important part of my decision was the awareness that I would be going to the Cleveland Clinic for my initial and follow-up surgeries - one of the best heart hospitals in the world with an impressive success rate on repeat surgeries. I might well have chosen to go mechanical if this hadn't been an option. So, read up, think about what is important in your life, and I'm sure you'll come to the right decision for you. Best, Kate

 

[Mary]

. . . Has anyone had a CT angiogram done before?What is it like?They said we have to set aside 3 hours to stay at the hospital this Friday April 13/07.I've never had an IV before so I'm scared of that (I'm a wimp, never been sick before like this)
Also, we are leaving on Sunday for St Lucia for 1 week, both cardiologist and surgeon said it was ok but not to overdo it, the humidity will be whats not so good they said.

KAREN

I'm not sure what a CT angiogram is, so I can't really answer that question. I do know about IV's, and I think if you mention your fear, the person starting it will try their best to make it as easy as possible (knock on wood! ).
I found that humidity was much harder for me to deal with than high temperatures . . . if you can stay cool, and not overdo, I think you will do fine. St. Lucia sounds lovely; I hope you enjoy your trip and try to not worry about your heart.

 

[Ross]

http://www.radiologyinfo.org/en/info.cfm?pg=angioct&bhcp=1