I'm only 24!

[Natanni]

A point that was emphasized when my husband had his BAV valve replaced (At 34 years old ) was lifestyle. He was told that repetative heavy lifting ( he lifts 75-100lbs multiple times per day for work )would burn out a tissue valve faster than the average person. He was told by 2 docs @ the Mayo he could expect 7 years and hope for 10 year valve life with a bovine valve. On the flip side, people talk alot about the risk head/body injury motorcycling, bicycling, and ATVing anticoagulated. Also keep in mind normal acitivies of daily living need to be discussed with your heart surgeon and cardiologist.

Due to my husband's anatomy, the homograft was not option. Like Brad,
Nathan was also told that the Ross was not preffered by any of the Mayo surgeons.

Wishing you all the best,

Ann (the Wife)_

 

[Gnusgal]

Just thought I'd throw my 2 cents in. I was 25 when I got my mechanical valve. I was not given a choice in which valve to use (didn't even know other people got a choice until I found this site a month later). I've been on coumadin for almost 5 years now. I HAVE had some bleeding issues, but only because there was another issue that exacerbated it. It's not like I was standing around and BAM I started bleeding. No, I had an ovarian cyst burst and because of the coumadin it didn't stop bleeding, as it would in "normal" women.

I'm not sure whether to tell you coumadin is no big deal or not. On a daily basis, it isn't. But it CAN create issues that wouldn't be there otherwise.

As for the cumulative risk, I don't think so. I believe it's 3% every year. I just happen to be one of the "lucky" ones who has "hit the jackpot" three out of five of my years.

 

[boomersooner]

One of the problems I am having about making a valve choice is that there is not a lot of statistical information regarding people my age that have underwent AVR. Does anyone know a good site with stats that would be helpful to me?

 

[andrewbarone]

Hi...your situation sounds very similar to mine (bi.aortic valve since birth, reguritation. Fortunately, it wasn't until 2000 (age of 32) that I needed surgery. The decision was to go forward with the Ross Procedure...things were fine until Sept.2005 when a virus started attacking the aortic valve (my original pulmonary) and it created a problem because my heart was so enlarged due to accomodating the regur. all those years. After congestive heart failure in Jan.2006 (considered for transplant) but then treated with meds and defib in April - ef started to climb dramatically (eventually higher than pre-surgery of valve replacement. Now the plan is go with another valve replacement - this time mechanical (I have dealt with the coumadin this past year and don't relish repeat surgeries in the future if this could eliminate the need for a future transplant). I would reccomend at least bringing up the notion with your cardiologist (or go get a second opinion from another one), the worse that could happen is that they both agree you might not be a candidate for the procedure or you decide not to pursue it!

 

[tdrother]

Six weeks ago I underwent surgery to replace my BAV and remove a 5.0cm ascending aortic aneurysm. I am only 27. First of all you need to consider your activity level and what you want to do as you get older. If you want to remain active and do adventurous activities I would recommend tissue. I chose tissue because I didn't want to mess with blood thinners all-day everyday, I wanted to enjoy life and do things. I figure that I can go through another surgery again, because it would be easier than monitoring my blood thinners. Remember, there is no guarantee that a mechanical valve will last a lifetime either. You also run a higher chance of having a stroke with a mechanical valve than you do with a tissue valve. If you have anymore questions please feel free to contact me.

For reference material go to the Bicuspid Aortic Foundation, www.bicuspidfoundation.com. They have a lot of great information.

Best of luck,
Todd

 

[Karlynn]

You also run a higher chance of having a stroke with a mechanical valve than you do with a tissue valve.

My intention isn't to be critical of your post, but this is not correct depending on how it is interpreted. A properly anticoagulated mechanical valve has the same stroke risk as a tissue valve. If you were meaning a mechanical valve without anticoagulation, then you are correct. Many of us that take Coumadin would not agree with most of your assessment about what taking the drug means to our lives. I wish you well with your valve and many years of use out of it. There are good reasons to get a tissue valve. Please don't take my post as being critical of you. We just end up spending a great deal of time here having to debunk myth and old information that many in the medical community don't bother to bring themselves up to speed on and then pass on to their patients.

Anyone considering a mechancial but that has worries about activity level. I recommend taking a read in our Active Lifestyles forum.

Best wishes.

 

[MrP]

Geeeee....I have a mechanical AND am active, adventurous, enjoy life to the fullest and "do things"....lots of things, don't mess with blood thinners all-day, everyday, drink margaritas, beer, wine, sex-yes,yes...gets better with age, don't sleep all day, have great friends, and don't worry about stroke because of my mechanical valve. The drawback of mechanical (like coumadin management and ticking in some of us) are acceptable tradeoffs vs. definite surgeries down the road. And at such a young age, a tissue valve will calcify faster and not last as long as one in an older person.

 

[mntbiker]

One of the problems I am having about making a valve choice is that there is not a lot of statistical information regarding people my age that have underwent AVR. Does anyone know a good site with stats that would be helpful to me?

You are correct, there are not many statistics available and even less for us younger people. I am currently part of a study being done to determine among other things longevity of the specific tissue valve in younger patients. Unfortunately we have to make a difficult decision with less information then we would like.

I went tissue for many reasons, among those reasons was my surgeons suggestion. I did go into surgery convinced I would be waking up with a mechanical valve and was surprised when I woke up with tissue. (don't get me wrong it was my second choice - first choice was not needing surgery )

Find a surgeon you trust and get his opinion, they do this a lot more often then we do. As far as the surgeon, I was not overly impressed by mine at first, he was a typical surgeon, unemotional, detached but he had a good history and was well regarded. The turning point for me was when he saw my wife getting upset at the consultation and took the time to sit down right in front of her and directly address her concerns and tell her it would be all right. His comment of "I am the one you want" really cracked me up.

Good luck with your decision.

 

[LUVMyBirman]

"Geeeee....I have a mechanical AND am active, adventurous, enjoy life to the fullest and "do things"....lots of things, don't mess with blood thinners all-day, everyday, drink margaritas, beer, wine, sex-yes,yes"

_________________
Isn't that the truth, lol Tick on Mr. P! I agree...taking Coumadin "all day long" would present an issue. Bleeding issues Taking it once as day a prescribed for almost 8 years has not been a problem. No stroke either.

 

[Susan BAV]

Well, I may be sorry that I'm posting this, because I've had a rough week here on VR.COM and I had a couple of my posts completely taken out of context and thoroughly bashed, but I guess I'll jump into the fray again.

It seems to me (and that means it is my opinion) that a tissue valve person cannot post their experience and/or opinion here without being [call it whatever you want: criticized, corrected, heckled, insulted, etc.] by someone with a [different] valve; and the tendency seems to be to gang up.

If your experience is different, or your opinion is different, can you just post it without attacking and dismembering another member's post?

There are different options and opinions about valve replacement because there are so many variables and there are no guarantees; and valve surgery is not an exact science.

Remember, people come on this site to be soothed and supported.

(edit some months later - this is odd because the words and original tone of some threads have been altered.)

 

[LUVMyBirman]

Mechanical valver here. I fully repsect ones choice of valve. Depending upon my age at the time of a redo....would consider a tissue. If I make it 40 years with my current valve. Age 70 with a tissue valve may suit me just fine.

Just don't understand the constant revelations surrounding Coumadin, "bashing" that occurs here. Most of us are well aware it is medication that requires monitoring. Like with anything you do....it becomes a way of life. We all brush our teeth three times a day. Hopefully. It's just one more task added to my daily routine. Once a day. My lifestyle has not been altered in the least. It may make me think twice before skydiving...or doing something crazy along that line. As any responsible adult with obligations would.

I experienced first hand what it felt like to lose a 35 year old friend to Mitral Valve disease. He never had a chance to make it to surgery. Went from a full functioning adult with a family and children one day. Gone the next. This is a very serious disease. Once you are fixed...it does not free you from the DAILY risks. Either way. So whatever valve type you may have assisting your heart to beat inside...feel blessed you had the opportunity

 

[Karlynn]

Susan, your post won't be taken out of context. I knew when I posted what I did that someone would read it as chastizing someone for their tissue valve choice. I hesitate posting for that exact reason. But I also felt it would be irresponsible of me for letting that type of view of Coumadin go unanswered. I'm not criticizing you for feeling that way. What I ask of all our tissue valvers is to understand that we that take Coumadin are continually, on a daily basis, reading myth and incorrect facts presented about Coumadin posted here. 99% of these posts are by people who have had no personal experience with the drug. They are just going off of the error that they've been told. I ask that people who read these last posts and feel they are attacks on tissue valvers to go back and reread them. All they are is responses to a post that presented a view of Coumadin that simply is not true for the vast majority of people that take the drug - for whatever reason- a mechanical valve is only one reason a person may need to take Coumadin. No one was attacking the person for choosing tissue nor told him/her he was wrong for that choice. The post was wrong, however, on what life on Coumadin is like for most people.

Put yourselves in our place. Someone comes on and posts: I chose a mechanical because a tissue valve will only last 2 or 3 years. I will most likely have to take Coumadin anyway because of A-fib and I have a good chance of dying in my next surgery because reoperations are so much more risky.

For a tissue valve member to respond to the errors in that post is not critical of the person's choice of a mechanical valve. It is just setting straight the errors that someone else may come on and read and take for a fact. Fortunately for tissue valve members, these type of posts don't happen very often. But posts by people who haven't lived with Coumadin telling of how vastly restricted their life would be if they had to take it, happen all the time here. They may be a full post such as the one I and others responded to, or they may be brief comments within a post such as "and besides, I like to have a glass of wine occasionally." That is also not a restriction of Coumadin, but I choose to not respond to that error. However, I do feel badly that someone may be reading that, who is looking for information on Coumadin in order to make their choice, and think they can't ever have wine if they take Coumadin.

I ask all of our tissue valve members here to please understand when we have to correct bad information posted on Coumadin. It is not an attack on tissue valves. It isn't an advertisement for the superiority of mechanical valves. It is simply not letting myth and error be read as correct information by those who are ernestly seeking correct information.

Best wishes.

 

[geebee]

This is a site for information on valve replacement. Yes, a vast majority of the posts contain personal opinions along with information. The opinions and a great deal of the information available here cannot be found anywhere else because of the vast experience all of us have.

Due to the fact that people come here for help and information, it is also our responsbility to point out inaccuracies about the information found here. It is one thing for me to say, "I would not want a tissue valve because I do not want to go through another surgery", and something entirely different if I were to say, "I would not want a tissue valve because I would need to have it replaced every five years". I could call both my "opinion" but one statement would be within reason and the other based on false information.

The same applies to coumadin. It is fine for someone to come on and say, "I do not want to take coumadin because I fear for bleeding due to my lifestyle, etc." and something entirely different to imply that coumadin is a daily hassle and struggle. I am sorry, but it is simply not accurate for someone, who has never been on coumadin, to make such a statement.

Even if a person who is on coumadin came on and shared that they experience a daily hassle and constant struggle, it would still be our place to point out the fact that said person is in the minority. It could be their "opinion" that everyone has the same experience with coumadin but it would not be a true statement.

In addition, if someone were to join and say they have had tissue replacement surgeries every five years for the past 20 years, we would need to point out that, again, this is the exception. I am a prime example of someone with a mechanical valve that has not avoided additional surgeries. Again, it is my responsibility to point out that the reason exists in my system and is not a common occurance.

Unless we do point out inaccuracies, whether it be about tissue valves, Ross procedures, or coumadin/mechanical valves, this website is useless for one of the reasons it was created.

 

[starfish11040]

Karlynn and Gina, well said.

I've been reading the posts here for a while. One striking thing that I've noticed is that the mech valvers almost all agree with you about life on coumadin. They should know because they are living with coumadin.
And that the woeful description of life on coumadin comes mainly from people who have never popped a coumadin pill!
Strange.
I'm guessing that the reason for the misinformation is in some cases just a false impression and in other cases it is a need by some people to validate a certain choice of valve. Just an observation.

 

[Susan BAV]

99 and 44/100ths

99 and 44/100ths

Hello all -

Please note that this is not a direct reply or comment to anyone; I see there are more posts since I posted last night but I haven't read them yet.

I remembered another specific thing, however, that seems to come up related to what I wrote about people posting [negatively] about tissue valves and how I feel about the frequent trend of followup (and ganging up) posting that I believe is common -- and that thing is that: fairly frequently there are negative comments about why doctors would even use tissue valves, and then sometimes more tissue valve doctor bashing, and there seems also to be fairly frequent assertions in the form of, "why would tissue valvers want more OHS."

(Now many of us have had at least one experience with a doctor who didn't meet our expectations. But I don't think it's supportive or helpful to inclusively or even selectively bash an educated medical authority, or their patient, because of not personally agreeing with what they recommend.)

Who wants more OHS anyhow? Who wants complications related to any valve choice? I would venture to say that probably 99 and 44/100ths percent of the people posting here wish they'd never had a heart problem. But we do have a personal and responsible choice to make about a valve, based on many variables and not necessarily just the anti-coagulation issues -- and yes there can be issues there, like it or not.

Remember, choices are often based on the personal definition of "quality of life" for each individual.

Again, I'm expressing my opinion here in connection to another post I made a few posts further up here.

In summary, I think the valve replacement choice posts could be more positive and supportive by: basing them on our personal experience; and avoiding selective attacks on things or people that conflict with our opinions.

I have glanced back and I see there are more followup posts which I have not yet read and I hope they are not ganging up or personally attacking.

 

[Ross]

sex-yes,yes"

For the love of God, WHERE? I want to participate NOW.

 

[Lynlw]

One of the problems I am having about making a valve choice is that there is not a lot of statistical information regarding people my age that have underwent AVR. Does anyone know a good site with stats that would be helpful to me?

Boomer, This wont help find actually statistics, but in addition to VR>com, you might want to check the forums at the adult chd site http://www.achaheart.org/
there are many members in their 20s and 30s that have been going thru heart surgeries snce they were babies

 

[afraidofsurgery]

Statistics

Statistics

Boomer,
Actually there are lots of statistics 'out there', but often they are in the form of a published clinical study or review of clinical studies. See www.pubmed.com for the best and most accurate medical information, since you will be searching for published medical studies that contain original data that is not 'watered down' for a magazine article or website report in say WebMD. These articles are fairly intense but I think they're well worth the effort.

In general, your age goes strongly in your favor for surgical outcomes, which are already amazingly high for OHS for valve replacement. As you have discovered, mechanical valves have a much higher predicted life w/o repeat surgery than tissue valves - for tissue valves, your age goes against you since your body will 'attack' a tissue valve more vigorously than an older person. But, as you have discovered, anticoagulation therapy adds a new dimension in maintaining health and well-being that should not be taken lightly, although I've found it to be a minor issue.

There aren't a lot of statistics for long-term outcomes of the ROSS procedure, but some studies suggest that the rate of repeat surgery is high - see http://www.ncbi.nlm.nih.gov/entrez/..._uids=17303586&query_hl=1&itool=pubmed_docsum

and

http://www.ncbi.nlm.nih.gov/entrez/...Retrieve&dopt=abstractplus&list_uids=15336990

And remember, statistics are calculated for a group of patients and does not mean you will (or won't) experience any catastrophic results or complications - this just means that a certain percentage of people in the study have. I also think the risk of complications needs to be put in perspective of other risks in your life and lifestyle, including the risk of doing nothing.

GOod luck with your choice, I"m sure you'll do just fine.

 

[BDMc]

Welcome

Welcome

Jared, I just want to add my "welcome", and thank you for a very interesting and I hope, helpful thread.From where I sit, I'd also like to commend Bradley, and Karlynn for clear bashing free posts that are filled with helpful facts rather than opinions. In regards to the choice, it is personal. I am very interested in what Mary said about what she would suggest for her own son. I have the utmost respect for her, and it might serve you well to ask her more about it. Kate hasn't piped in, but she has made some wonderful posts about valve choice. She is a tissue valver. Do check out the Active Lifestyles Forum. Sorry you are faced with these questions, but glad you are here! Brian

 

[Ross]

One of the problems I am having about making a valve choice is that there is not a lot of statistical information regarding people my age that have underwent AVR. Does anyone know a good site with stats that would be helpful to me?

boomersooner Let me say this about statistics. You can search the web and find stats that you like. You can also keep searching and find more that argue against what you just looked up. I wouldn't be betting the farm on statistics at all. Fact of the matter is, you should be going on to live a very long, active life afterwards.