Tissue versus Mechanical

[Penny]

Hi, I am 44 years old and facing heart valve replacement (they tell me within a month).
Of course for all of you that have gone through this procedure you will understand the stress in making the decision of which valve type. I realize that logical choice would be mechanical due to my age yet I have this nagging doubt about choosing mechanical due to my other health issue. I have Celiac Disease. For those who may not know this is a disease where my intestines become damaged when I ingest gluten. This creates a absorption issue which is typically invisible and shows no signs of it happening until I start to experience fatige due to vitamin deficiency. At that point, my intestines are so damaged that it takes at least 6 months for my intestines to repair themselves and for my body to start absorbing normally. My fear is the risk involved if I am unable to absorb the coumadin. I know they are currently able to perform valve replacement without opening the chest but it is not yet an common procedure done here. So my thoughts are.. in 10 yrs what will they have to ability to do
Any thoughts?

 

[Ross]

If you have Celiac, your best to go with a tissue valve. I'm not the expert on tissue choices here, so I'll let those that are talk to you about what kind, whether pig or bovine. Yes, your really too young for tissue, but given the problems you have, Coumadin would not be something to mess with in that state.

 

[ARGreenMN]

I know they are currently able to perform valve replacement without opening the chest but it is not yet an common procedure done here. So my thoughts are.. in 10 yrs what will they have to ability to do
Any thoughts?

I was wondering the same thing when I first started researching a couple months ago and was initially leaning towards tissue. Sounds like there's a chance tissue may end up being best for you. And if so, I personally think it's ok to have "hope" (maybe even be encouraged) that someday the procedure you're mentioning might be more common-place. Others will likely say you don't want to "count on it", and I'd agree, but I think it's ok to have a glimmer of hope. I was able to have an extended conversation with my surgeon a few weeks before the surgery to get all my questions answered (pros and cons of tissue vs. mechanical, different surgical procedures, etc.). I'd encourage you to try to set up the same thing. And - to also try the same with your cardiologist - it's always good to get a couple different viewpoints. Lastly - there were a couple recent threads (wish I could remember which ones) that talked about this procedure you're talking about. I'd scan through some of the recently modified threads to see if you can find it. Or, if you know how to do an advanced search on here, and know the name of that procedure, search for that.

 

[Adrienne]

Hi Penny. You didn't mention which valve has to be replaced. They have been doing certain high-risk aortic valve replacements by way of a catheter, and they seem to think that in 10 or 15 years, it will become the norm. However, for the mitral valve, this is not the case.

 

[Jkm7]

Many of our surgeons have told many of us from all different states/countries that percutaneous valve replacement will become extremely common in the near future. Can they all be wrong?

I know the wisdom of people saying do not count on future medical advancements and make your valve choice predicated upon current possibilities.
Each of us has to make our own choice but I would at least consider that literally dozens of posts here re: multiple cardiologists and surgeons have stated it is their informed opinion catheter valve placement is not just a far off dream.

Best wishes while you make your choice.
There are some very knowledgeable people here who are so generous sharing their knowledge. Ask all questions. Someone is sure to be able to help.

 

[Ross]

Many of our surgeons have told many of us from all different states/countries that percutaneous valve replacement will become extremely common in the near future. Can they all be wrong?

Yes they can. Until the day that it's true, they shouldn't even bother bringing it up. Just like a replacement for Coumadin. For everything I've heard in the last 9 years, there should already be a replacement, yet there is not. Sure, one looks promising, but what people don't realize is that valve patients aren't included in the testing.

 

[Penny]

thank you for all of your replys and advice
Adrienne, it is my aortic valve which is getting replaced. They are currently doing tissue replacement with a catheter here but it is more so for those who are at risk for opening the chest. I guess I am hoping that will change in 10 yrs and it will be an option for everyone.
I am not sure why but my surgeon isn't very helpful in suggesting one way or the other. She said "all I can say is this is what is involved, these are the risks, it is a individual choice". In no way would she make a suggestion of what her thoughts would be on which valve is better suited for my situation. Needless to say I am a little discouraged. This is why I am here on this site
You are right Andy, I need to call my cardiologist and ask to see him prior to the surgery..
Once again, thank you so much for your input.

 

[neil]

firstly welcome aboard,its a tough choice but with your other issues i guess tissue is best, medicine is coming along in leaps and bounds but we never know for sure how quick these ops are going to be done by catheter, but if my first op is anything to go by i didnt find it as bad as i thought,maybe i was lucky? but im pleased i choose tissue as i still dont fancy being on anti coags, whichever you go with remember its gonna save your life ok,

 

[kfay]

Penny, There are plenty of young people who get tissue valves for a variety of reasons. I got one two years ago when I was 45. For most people making this decision, it really comes down to two things, can you stand the thought of more surgery down the road or taking coumadin everyday and the problems that can go with both of those things. However, for people like you, other issues come into play that make the decision a little different. It sounds to me like you already know which way you should go. Why don't you have a talk with your GP or your GI Dr. if you have one and see what their opinion is about any problems you might encounter with coumadin and celiac disease. Good luck.


Kim

 

[Ross]

Yes, do talk it over, but I cannot see you on Coumadin with the problems that your disease presents. You'd have a terrible time I would think.

 

[bkdamon]

If you decide to go tissue I read an encouraging statement/report (can't remember where but maybe I can retrace my steps and find it) that said that a certain type of bovine valve was actually proving to have a substancially longer life than anticipated. I'm watching that option carefully as I would prefer a tissue valve if the replacement window were far enough in the future when catheter valve replacement would likely be acommon procedure. It's a big question mark for me, really it's a going to be a roll of the dice.

EDIT: Here's the link for the discussion on these forums from last year. http://www.valvereplacement.org/forums/showthread.php?28813-Life-of-the-Carpentier-Edwards-Perimount-Valve&p=356971#post356971

 

[Luckyguy17]

Hi Penny,

Welcome to the forum and yes your situation does seem to add a little complexity to the valve choice.

BKDamon referred to a new bovine valve that has some longevity promise in early trials...believe he may be referring to the C-E Magna Ease bovine valve for aortic replacement. This was my 1st choice for aortic valve a few weeks ago, but for some reason the gameplan changed at surgery and i seem to have received a st.Jude Epic for aortic valve instead...am very much looking forward to discussion with surgeon in a few weeks as to why that change was made? but i have to trust his judment call and did give him the lattitude once I stated my preference, as there were last minute judgment calls made at surgery for mitral valave as well.

Sounds like your discussion with surgeon and medical professionals will be the key for best choice and do make sure to outline the conditions all that may influence choices.

Do keep us in the loop and all the best

Gil

 

[malibu82]

Hi there

I had a hard time choosing which type of valve to go with. Initially, I was going to get a mechanical valve 100% because I didn't want to go through another surgery. Then one day I was reading the pro's and con's of both, and to my knowledge, at my age, the risks of each basically balance each other out. The risk of mechanical valve is the coumadin, the risk of tissue valve was the reoperation. I decided to get a cow valve (bovine) and I am very happy with my decision. I just had surgery 2 weeks ago yesterday. I chose the tissue valve because I have two young children and I just wanted to live life and get back on track without thinking about anything else. I felt that for me, mechanical valve would keep me worrying about other things. I also found that nobody professional would tell me either way which valve I should get before surgery. However, after surgery, I can't tell you how many medical professionals told me what a good choice I made after finding out I chose a bovine valve. I am only 28 so I know that means another surgery, and when it comes time I will get the mechanical, but I hope this valve lasts me at least 15 years before that would happen. And yes maybe, just maybe by that time I can get that new trans catheter procedure done!

 

[Penny]

You guys are great! I was advised by my surgeon to stay off the internet. Trust me I don't want to see what they are going to do to me in videos but I know I was meant to find this site. All of your input is helping me find the choice which is right for me. I truly appreciate all of your kind words
Thanks

 

[Ross]

You guys are great! I was advised by my surgeon to stay off the internet. Trust me I don't want to see what they are going to do to me in videos but I know I was meant to find this site. All of your input is helping me find the choice which is right for me. I truly appreciate all of your kind words
Thanks

There is a lot of bad information on the internet but. Who better to talk to then those that have been through it, and some of us, several times? We understand everything from a patients prospective and will give it to you in plain english.

 

[ARGreenMN]

Amen Ross! Any docs who say to stay off the internet needs to be reminded that "Knowledge is Power". My docs and nurses have been very supportive of this site, but I have heard stories about docs saying things like "just let me worry about it"... While there are probably some people that would rather not know all the details, I think there are also a lot of people who DO want to know as much as possible. Esp. with something like this that affects your life so much. There's so much valuable information in here, and it's been helping so many people in the short time I've been watching threads in here, it's just amazing!

Interestingly, I've always been VERY squeemish (sp?) of videos of surgery and such. But since my surgery, I've been watching some of the gory details out on youtube. It's interesting to me to know exactly what they did to me, and not scary anymore for some reason. I suppose because I've been through it now and realize it's not as bad as I feared.

 

[Jkm7]

This site is such a resource for us to get meaningful information and certainly discussions with those who have walked the walk. I only personally know 'in my real life', two people who have had valve replacement surgery. Only one who has had two OHS like me. Without all the education I have gotten here and support prior and after my surgery, it would have been far harder on me.

My cardiologist is hugely supportive and doesn't duck my questions. He helped me so much while awaiting my second surgery but he's a busy man. I couldn't call with every little question or concern. I could and did come here in addition to my conversations with cardio and the combination was immense...... for me. Here, I learned the questions to ask him.

When I started this journey, I knew just about nothing about the heart and didn't have a clue about which valve to choose. I read and asked here a lot and when he would call me or I had an appointment with him, I could get right to my pertinent questions. His answers combined with my learning here were the right forumla for me. I wouldn't have known to ask him about clicking mechanical valves? Who knows this if not impacted directly? I wouldn't have had any education re: coumadin to discuss with him. So many other valve/OHS issues.

For any doctor to say to stay away seems (s)he is suggesting something that is depriving you of garnering practical information and realisitic view of what we experience before, during and after this surgery. The most important thing to keep in mind is when they say we are all different, they really mean it. At first, I thought they were dodging some of my more general questions with an off the cuff 'everyone is different' response but they were not. It's true.

At least you get a range of views and lots of stories of how it went for others.

 

[kfay]

In my case, I have noticed a great difference in Dr.s opinions about getting on the internet based on the age of the Dr. My local cardio is a crusty little man ( and I do mean little, on a good day the man MAY be 5') who is 72 and he just wishes that the internet would completely disappear. He has said to me on more than one occasion, always while laughing, that he wished I would just stay off the internet. We have a great banter with each other so he knows I'm going to constantly be on here searching for stuff. Meanwhile, my cardio at the Mayo, who is in her late 40's, when I one time asked her if she hated it that patients like me were always on the internet looking stuff up, said she expected her patients to do that and come to her already knowledgeable about what was going on. Older Dr.'s are just used to telling their patients what to do and them doing without question.

 

[scott.eitman]

At 34, in May 1998, Dr. Cosgrove at the Cleveland Clinic gave me a homograft aortic valve. Dr. Cosgrove was not one to dicuss surgery with patients. I was a nervous wreck, but was in the hands of the "best" surgeon at the time. All I knew at the time was that a mechanical was not for me. Fast forward to 2010, I am looking to have it re-replaced again.

In the fall of 1998, I was able to begin working out with the local HS wrestling team which I did for 5 years until the rest of my body gave out. I am very active and ride my bicycle 3000+ miles a year, until this year. I rode 18 before work this morning. I am a big fan of bio products. At 46, I want something similar. My surgery consult is in 3 weeks.

 

[Penny]

I have booked an appointment with my GP to get his opinion regarding my celiac disease and what risks are involved with Coumadin. I will try to book an appointment with my cardiologist but he is 2hrs from me in another city and it is extremely busy clinic. I will keep my faith that everything shall happen as it should. Thanks ladies and gents for all the words of wisdom you have shared with me so far