tissue vs. mechanical

[bml121900]

Hello my names brodie I am 22 and i am need a aortic valve replacement, itys options are mechanical valve, tissue valve, and a tavr, obviously i like the idea of the mechanical valve and it lasting the remainder of my life, but what’s concerning me in the blood thinners, like I said I’m 22, I work construction, I ride dirt bikes, motorcycles, place trucks, and all kinds of stuff that makes me nervous to be on blood thinners, i do not wish to have open heart surgery every 7-10 years from the tissue valve, I hear the tavr is unpredictable and have higher probabilities of blood clots, but im scared being as young as I am and not ready to slow my life down to where I feel I’m not living for the mechanical valve, so I’m hoping this page can help me answer some question as such how much being on blood thinners really affects your life and anything else that would be helpful. Thank you

 

[nobog]

Hello bml... and welcome. This is a very old post (started in 2002) and you might want to start a new thread... however.... at your age don't even think about a tissue valve. If someone recommends a tissue valve (your dr or whoever) they are doing you a disservice. A mechanical valve is no hinderance to a great life.

JK

 

[dick0236]

Hello my names brodie I am 22 and i am need a aortic valve replacement, itys options are mechanical valve, tissue valve, and a tavr, obviously i like the idea of the mechanical valve and it lasting the remainder of my life, but what’s concerning me in the blood thinners, like I said I’m 22, I work construction, I ride dirt bikes, motorcycles, place trucks, and all kinds of stuff that makes me nervous to be on blood thinners, i do not wish to have open heart surgery every 7-10 years from the tissue valve, I hear the tavr is unpredictable and have higher probabilities of blood clots, but im scared being as young as I am and not ready to slow my life down to where I feel I’m not living for the mechanical valve, so I’m hoping this page can help me answer some question as such how much being on blood thinners really affects your life and anything else that would be helpful. Thank you

Hi Brodie and welcome to this forum. I doubt any surgeon would suggest TAVR at your age. A tissue valve, as you say, may last a decade or so before being replaced........and then you will go thru this decision-making process all over again. A mechanical valve has a good chance of lasting a lifetime......mine has. Being in construction might pose some additional bruising issues but should cause no significant issues. I have known several men who had similar occupations after being on warfarin. You should have no serious bleeds unless you try to cut your leg off with a circular saw (I saw a guy do that when I was a young construction worker).

Keep reading and educating yourself....... then make the decision you are comfortable with.

 

[Rebecca]

My little friend had her mitral valve replace with a mechanical valve as a infant. Last year at the age of 12 she had it replaced with another mechanical valve because she out grew her other mechanical valve. At your age definitely go with a mechanical. The bad part is as you age and might need other surgery's you will have to bridge to a different blood thinner to have surgery. This might make you have a day in the hospital to bridge you over to different blood thinner to have minor surgery.

 

[Protimenow]

The others already advised you about your choice of valves. I won't inject my opinion into this thread.

What **** didn't say is that he's had his mechanical valve for more than 50 years.

I'm only on 31 years with my mechanical valve. This isn't to say that everyone who gets a mechanical valve doesn't have complications or need replacement -- some have.

I've been on Warfarin (previously called Coumadin) for almost 32 years. Warfarin is an anticoagulant -- it doesn't thin blood.

I haven't had problems with warfarin (except for a time when a now discontinued meter resulted in a stroke), but this risk is gone.

When you take Warfarin your bruises may be bigger than if you weren't on it. you won't bleed to death when you get a cut. For minor procedures, you probably won't need to 'bridge' (injections of heparin).

There are many here that haven't let warfarin change their lives or their activities. Maybe they'll provide some of their activities.

I got my mechanical valve when I was 41 -- my thinking, and the doctor's advice was that I was too young for a mechanical valve. In my case, I'm sure they were right. At that time TAVR wasn't an option -- but I wouldn't have risked it even if it was --- they fail after a number of years and the 'repair' involves putting a smaller valve inside the old TAVR, eventually necessitating the use of a mechanical or tissue valve.

Your ultimate choice is up to you (and family and whoever else you include in the decision). You should get a lot to think about when you go through this thread.

 

[Superman]

Greetings Brodie, and welcome.

Ultimately, as everyone says, it’s your decision. We can only share our experiences and if they have an impact on your decision, either way, I hope you find them helpful.

I had my valve replaced when I was 17 with a St Jude Mechanical. I’ve been on warfarin since that time and I’m 50 now. Lived my entire adult life on warfarin I suppose. There isn’t anything that I can think of that I didn’t do specifically because of warfarin. I have some threads in here referencing a couple recent rim-to-rim hikes through the Grand Canyon. Here I are working my way back up…

I’ve run a 25k. I have a 100 mile bike ride planned this fall. I don’t work in construction, but I’ve finished a couple basements and built a deck. I’ve done my own work on cars. Just stuff people do over time.

For the first 20 years home testing wasn’t an option so I had to get to the lab for blood work. For the last 13 I’ve been home testing, which is far easier. I don’t watch my diet at all really. I’m just a calories in/calories out type of person. I enjoy food and try to keep moving. I test every week or two and change my dose if needed.

All that said, mechanical did not save me from a second open heart surgery when I was 36. Ascending aortic aneurysm prompted them to go back in 19 years after my first surgery. That’s already been nearly 14 years ago and I’ve stayed with St Jude. Still ticking.

 

[pellicle]

Good morning

Hello my names brodie I am 22 and i am need a aortic valve replacement,

sorry to hear that, but as I had mine first replaced when I was about 10 (and I'm now about 60) I think I can say welcome to "Club Valver".

Firstly let me say (as you'll find in my bio) that I've had a total of 3 OHS in my life. I believe that this has actually strengthened me and led me to become who I am. There is much to learn here (for you) in this condition and the opportunities at your feet in overcoming this obstacle. To be frank you can either stand on top of the problem and see the world better or you can be defeated by it and your life will seem worse for it.

This outcome set is entirely up to what you do.

itys options are mechanical valve, tissue valve, and a tavr, obviously i like the idea of the mechanical valve and it lasting the remainder of my life,

excellent news. I fully support your decision. Next I'd like to introduce you to some ideas which you'll need to take on board and maybe even make changes in your life. These changes will be for the better.

but what’s concerning me in the blood thinners, like I said I’m 22, I work construction, I ride dirt bikes, motorcycles, place trucks, and all kinds of stuff that makes me nervous to be on blood thinners,

So, this is exactly the topic. I too have ridden motorcycles since I was a kid (currently have a small stable of one MTB, two electric scooters and two motorcycles as well as a 4WD and I happen to like hiking and camping).

This video on my youtube should indicate a little about me:

i do not wish to have open heart surgery every 7-10 years from the tissue valve,

wise

I hear the tavr is unpredictable and have higher probabilities of blood clots,

sort of ... but not really. Basically its this:

• its not intended for young people (young means anyone less than 50) so the durability is lower (think half or less)
• the risk of stroke during insertion is higher
• when you put a valve inside a valve it makes the inside valve smaller (obviously) and this is designed to help people in their later years to survive just that bit longer. Its madness for a younger person
• blood clots aren't really the main issue for tissue (bioprosthesis) valves.

but im scared being as young as I am and not ready to slow my life down to where I feel I’m not living for the mechanical valve,

there is no need to slow your life down, but there is need to educate yourself on how to manage "blood thinners" (which from here on in I'll refer to by the proper name of Anti Coagulation Therapy or ACT). Since my surgery (nearly 12 years back) to give me my mechanical valve (and a repair to my aortic aneurysm, I'll circle back to that) I have travelled back to Finland a few times (I was born and now live in Australia, but my wife is from Finland), I've always taken my Roche Coaguchek with me and have tested my INR weekly (or more).

There are many many posts here about this topic so let me start with one made when I was in Finland
https://www.valvereplacement.org/threads/video-demo-how-i-get-enough-blood-regularly.43797/
I've a lot to say on this topic so perhaps have a look at my blog

https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
the "theories" part of that has formed up into a solid and reliable practice.

so I’m hoping this page can help me answer some question as such how much being on blood thinners really affects your life and anything else that would be helpful.

I think the above is a good start. Now don't be daunted by what is to be learned because as you see from the dates in my blog posts I've been learning about this since 2012 and by 2014 learned enough to write those posts (and more).

Circling back to the Aneurysm what caused your valve problem? If you have Bicuspid Aortic Valve (BAV) then you are statistically at risk of aneurysm (which can kill you if not treated) and that may require a subsequent surgery.

Thank you

You're welcome.

I would urge you to reach out to me via a PM here and we can arrange a phone call. I can call the USA for no charge to me (because Australia has that sort of phone plans).

Best Wishes

 

[Unicusp]

Hey Brodie- as others have stated, it makes the most sense to go mechanical (via SAVR) in the first go round. I got my On-X mechanical almost 2.5 years ago. It has not changed my lifestyle one bit. I still do: construction projects, electrical work, auto mechanics, motorcycle mechanics, ATV & Dirt bike riding, street bike riding, e bike trail riding, hiking, snow skiing, snow shoe, camping, kayaking, stand-up paddle board, exercise, weight lifting (lighter and high reps), elliptical etc...Not an exhaustive list but trying to emphasize that you can basically do anything you want. Just be careful and safe. I've also been up to about 14k ft elevation with no issues. I have no side effects from the Warfarin but you do bruise a little more than before. Hence the be careful comment! Take care and good luck!

 

[TGM]

Hi Brodie,

My son is just a few years younger than you and has had a mechanical valve since aged 4. While he doesn’t ride motorcycles or play contact sports, he is able to do most activities. I would very much like for him to wear a medical ID; however I haven’t been successful in convincing him of that. I wish you the best with your surgery!

 

[pellicle]

I would very much like for him to wear a medical ID;

not sure if it helps you, but any first responder (who you'd even want to allow them to touch your son) will observe pretty fast that they have a mechanical valve and be on warfarin.

So its not really an issue unless he's in Africa, Thailand or something like that

 

[carolinemc]

Hi Brodie, welcome to the forum. I have a Mechanical, St. Jude's leaflet, installed in 2001 and still ticking. You will be in great company and tons of sound advice here. Welcome to the club.

 

[carolinemc]

not sure if it helps you, but any first responder (who you'd even want to allow them to touch your son) will observe pretty fast that they have a mechanical valve and be on warfarin.

So its not really an issue unless he's in Africa, Thailand or something like that

A Medical Alert lets first responders know what meds you are on and medical conditions. They cannot tell by sight if you are a heart patient and on blood thinner if you are unconscious.

 

[pellicle]

They cannot tell by sight if you are a heart patient and on blood thinner if you are unconscious.

and yet everyone complains about the ticking ... the scar on the chest may be a give away too.

 

[treichert0312]

Hi there Brodie -just a year into the mechanical valve experiment and I’m a satisfied customer. I had my first open heart surgery OHS at 11 for fibers in my ventricle, then got pig valve in 2014. I led an active life until pig valve broke last May. Went through 3rd OHS last June and figured I was done with active living.
Not true!! Found this website and got a lot of good information.
I have a test kit for at home INR testing - basically a clotting test to minimize stroke / bleed incident. INR too low, clots form on mechanical valve, break off, and wind up someplace bad to cause a stroke. INR too high, then no clots form at all and bruises can take forever to heal. Weekly testing and daily medication keeps INR in check.
Very simplistic but enough for me to kind of get it.
So now I bike everyday, run 5k - half marathon distances, and ski when weather permits.
Bruises do take longer and no one really notices the clicking. They figure it’s my watch. ️
Good luck to you! Ultimately it is your decision. I should have gone mechanical earlier but I am lucky 3 times now.

 

[carolinemc]

and yet everyone complains about the ticking ... the scar on the chest may be a give away too.

I love the scar, for I have two, one on top of the other, and the ticking, I no longer notice.

 

[Protimenow]

The scar shouldn't be a giveaway -- other heart surgeries probably leave a similar scar.

If I was part of a big accident, I would be surprised if EMTs would hear my valve click -- of course, a stethoscope would make it clear that there's a prosthetic valve clicking inside the chest -- IF the care provider knows what the ticking means.

I have a MedicAlert tag on a neckchain -- it says that I'm on Warfarin. It also has my wife's phone number. I don't think there will be any doubt that I have a pacemaker.

 

[Dana]

While not a perfect substitute for a MedicalAlert tag, Medical info is available to a first responded on your iPhone. I don't know about other phones but it's likely the same. Without knowing your password anyone can touch the emergency button and display the medical info you have entered there.

The problem is that first responders don't necessarily know this. I once went into my local fire department and asked if getting medical ID from phones was part of their training for EMTs. The answer was no. But when I showed him how simple it was to do, he said he would make that part of their training.

 

[Dana]

Here's a risk with mechanical valves that I didn't find out about until seven years after OHS when my two mechanical valves started shearing red blood cells resulting in hemolytic anemia. Newer valves and or fewer valves may be less susceptible to hemolytic anemia in mechanical valve recipients. It's rare, I guess but does happen. It's diagnosed when no other obvious cause of anemia is present. It may actually be more common than reported because as long as bone marrow production of RBCs keeps up with the destruction of RBCs, no anemia is observed. Anyway, had I known of his risk and made it part of the tissue vs mechanical decision I honestly don't think it would have changed the choice because the risk/benefit analysis for me still would have resulted in favoring mechanicals.

So just as an FYI, you should have a discussion with your physician so that it's part of the informed decision.

 

[pellicle]

Hi Dana

Here's a risk with mechanical valves that I didn't find out about until seven years after OHS when my two mechanical valves started shearing red blood cells resulting in hemolytic anemia. Newer valves and or fewer valves may be less susceptible to hemolytic anemia in mechanical valve recipients.

this is indeed a risk and different people suffer from it to different levels. Its usually in one of two groups

1. atheletes
2. people who may be borderline anaemic (but maybe didn't know)

As women are more likely to be in group 2 I strongly suggest being aware of the situation. As far as I know its easily treatable, but sometimes there are impediments. Eg my direct manager at my last role was anaemic, I suggested to her to have a glass of Stout or Guinness with her evening meal. She answered "that's what my Dr said", she went on to educate me that she is the sort of vegan who does not even drink brewed drinks because the yeast are killed. She's still anaemic to my knowledge. I had known she was vegan before that point. So I learned something new.

 

[Dana]

Hi Dana



this is indeed a risk and different people suffer from it to different levels. Its usually in one of two groups

1. atheletes
2. people who may be borderline anaemic (but maybe didn't know)

As women are more likely to be in group 2 I strongly suggest being aware of the situation. As far as I know its easily treatable, but sometimes there are impediments. Eg my direct manager at my last role was anaemic, I suggested to her to have a glass of Stout or Guinness with her evening meal. She answered "that's what my Dr said", she went on to educate me that she is the sort of vegan who does not even drink brewed drinks because the yeast are killed. She's still anaemic to my knowledge. I had known she was vegan before that point. So I learned something new.

As far as I know its easily treatable,

I'm having some trouble treating it. Neither my primary care physician nor my cardiologist thought I was ready for Aranesp (a synthetic erythropoietin) which stimulates RBC production in the bone marrow, even though my Hgb was 9.6 (normal for men is 13.5 - 18.0 g/dL) and symptomatic. Finally found a hematologist who agreed with me and prescribed it immediately. I've had three doses in three weeks and reached Hgb of 11.6 g/dL last week so now I'm cut off. Manufacturer doesn't recommend continuing in patients above 11.0 because of adverse events (clots) observed in chronic kidney patients when they tried to continue the drug after achieving 11.0 g/dL Hgb. The rule is indiscriminate notwithstanding that unlike me, CKD patients are are not likely to be on warfarin, so my risk would presumably be lower for clots. But rules are rules and I'm cut off even though, while slightly better, i'm still symptomatic.
I'm on iron even though my ferritin levels are right in the middle of normal. The iron supplements were started because of restless leg syndrome which makes it impossible to sleep and is one of the symptoms concurrent with, and I think caused by the anemia, as I never had RLS before.

I'm curious as to what you know about treatments, and why the Stout or Guiness. I happen to have cut out all alcohol two years ago (while in atrial flutter). My EP solved the flutter and it has not returned but neither has the alcohol; so I miss it. I have no problem killing yeast but am considering starting an organization called People for the Ethical Treatment of Vegetables.