23YO male confused about the valve

[AmyR]

Hello People,

Now i am in my valve selection process. I am 23 YO and confused on the tissue and the mechanical. I am studying and will be travelling between the US and india a little often. I prefer the mechanical as it lasts long but bending towards the tissue cause i am worried about warfin with travelling and plus school life where i would have to make my own food and stuff. Would love your valuable suggestions and comments.

 

[sood]

Hello,

I just had my surgery 9 days ago. I'm still getting used to warfarin as we are trying to settle my inr between 2 - 3. I'm older than you and barely even thought about tissue valves. The only reason I even gave it consideration was the fact that I could have a endovascular (catheter based replacement) down the road. But there is no data at all to support that they will be able to pop these valves on each other.

I don't think I will have any issues with warfarin. And I was told to eat what I want but eat consistently.
IMO you owe it to yourself to have the least many surgeries and give yourself the ability to live the longest. The only,option that currently supports that is mechanical valves. With a tissue you are guaranteed to have repeat surgeries, with a mechanical it could and should last your life. Also if you use an on-x mechanical valve like most of us here are getting, you will hopefully be able to take advantage of reduced anti-coagulation down the road with plavix and aspirin which is currently in the FDA approval process. The same maybe true with other mech valves too, but I don't known enough about them to weigh in. They had already told me that if I wasn't using an on-x valve that my target inr would be 2.5 - 3.5 instead of 2.0 - 3.0.

Good luck.

 

[Ola Thoresen]

Re: 23YO male confused about the valve

Unless you have a serious problem with taking two-three little pills every day (ok, it's for the rest of your life, but anyway) warfarin (or marevan as it is called here) is really no problem.
You get them in any drugstore, and if you travel a lot, get a prescription for the countries you stay for a long time or visit often. I doubt it will be a big issue to get a prescription in India if you need to.

And should you forget to take them one day, it's not the end of the world.

Make sure you get a home testing device @protimenow has a lot of experience with different devices. I only have a Coaguchek XS and is very happy with it.

 

[missaviator]

I am female, 29 now, but at 19 I had two tissue valves implanted. This is the best choice for me as I am planning on having children. However, I go in Tuesday for my 2nd OHS. Like sood, if you choose tissue valves, you will have to have repeat surgeries. I did love being on only an asprin a day, I did not feel well when I was taking the coumadin for 6 months post-op, I just felt dizzy etc..but It could have also been normal recovery hurdles.

I am a flight attendant too, so I travel all of the time, asprin is easy

For my 3rd OHS, I hope technology will have a mechanical type/on x which will allow us VR peeps to have 0 anticoags
Hey, a girl can dream right?!?

 

[sood]

I must add if I was a woman that wanted to have children, obviously there is no way I would get mechanical. God bless you women.

 

[missaviator]

the things we do for our men...haha :wink2:

 

[AZ Don]

In looking at this myself, I found this chart interesting: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1768482/figure/f3/
as it shows that there are risks of hemorrhage and stroke even with a biological valve, though not as high as with a mechanical valve. Basically you have to weigh the risk of lifetime blood thinners vs. the risk of replacing a biological valve multiple times given your life expectancy. Neither risk should be minimized as these are both significant risks. The general guidance is for those less than 60-65 to go with mechanical to avoid the risk of multiple surgeries (you are young so you might need several).

In my case, I have a "normal" BAV so am having a valve sparing operation, but mechanical is my backup choice. If you do go with mechanical I suggest that you learn from the experience of others on this site so that you are able to manage your INR levels and to know better when uneducated Dr's or dentists make suggestions that are inappropriate. My step father's brother had a significant stroke because his dentist took him off his blood thinners. I've since read (from a reference on this site) that in this situation the risk of stroke from stopping blood thinners far outweighs the risk of bleeding had he stayed on his meds.

 

[Gail in Ca]

Wow, I can't believe people are saying "For my 3rd surgery..." like it's nothing!!!!!! Yikes!

 

[pellicle]

Hi

I prefer the mechanical as it lasts long but bending towards the tissue cause i am worried about warfin with travelling and plus school life where i would have to make my own food and stuff. Would love your valuable suggestions and comments.

ok, up front I know nothing about your condition, so take my comments in light of that.

Next, I strongly believe that any path that limits your exposure to surgery is quite a compelling path. So unless you have some other factor which selects against a mechanical I favor mechanical and warfarin over tissue.

That you choose a mechanical however does not mean that you will not require further surgery in the future. I for instance had a tissue valve at 28 and needed another open heart surgery at 48 due to the formation of an aneurysm in my Aorta. Perhaps if I had a mechanical valve they may have had other alternatives, but I don't know.

Warfarin is not the evil monster it is often played up to be. Certainly there are individuals who have difficulty with it (for a variety of reasons) but in general it is a drug with a very long history and well known compared to other new drugs.

A discussion with a pharmacist mate of mine on the weekend on this topic was interesting. He mentioned one of his patients on Pradaxa (iirc) who needed to have clotting re-established because he'd broken his nose. This took some days on dialysis to achieve because there is no instant antidote for pradaxa. Had he been on warfarin (and it can be called by product trade names of Coumadin, Jantoven, Marevan, Lawarin, Waran, and Warfant just for the record, so I'll stay with calling it Warfarin) then a simple injection of Vitamin K would have restored his bodies coagulation.

As to travel, I have been into India and even out in the boonies you can get a drug store. Probably buy it cheaper there than in developed countries. Learn how to self test (lots written on that here for you, or PM me for my opinions should you wish) and then you are set. Just get a device and some strips and you can pretty much be on your own. Being a diabetic is much worse with intensive testing needed more than daily. Side effects of being a diabetic are far worse than having a mechanical valve and needing warfarin.

The tests I have seen suggest that a ATS/Medtronics or an On-X valve provide the best results in not causing clotting (from opening and closing pressures) but any of the pryolytic carbon valves are all in the ballpark.

Had I had a mechanical on my 2nd surgery (when I was 28) I would not be sitting here now with this post surgical infection and attempting to recover my health as I approach 50. Anyone who reckons you recover as well from these sorts of surgery when you're over 40 as well as when you were under 30 is telling you porkie pies.

Lastly, make your decisions in counsell with your surgeon and your cardiologist. Few on this forum are as educated or experienced as they will be.

I wish you all the best in your decision making process.

 

[Heart Of The Sunrise]

I am day 55 post-op. I am having no trouble adjusting to Coumadin , I chose brand specific based on conversations with my surgeon.My INR is 3.2 which has been reasonably stable. I was testing once a week. Now it is every 2 to 3 weeks. My next test is on May 24th. I chose a mechanical valve because of longevity in my family. My mother turns 90 on her next birthday. I did not want to have to go through several more operations as I got older. In the last week or so I got several minor cuts. I did not bleed to death. The bleeding stopped fairly quickly.

 

[AmyR]

Oh god people you all are such a blessing.

Sood- Thanks, I would talk to my surgeon about the ON-X valve cause he told me that they would be putting in a St Judes valve.

Ola- thanks for the reply, actually i hate the pills but yeah i guess i need to grow up and accept a few things in life. i actually had it behind my head about will missing a day of pills kill me. thanks for that reply

missaviator- Women can surely dream and yeah i guess your choice of tissue valve is valid cause you plan to have kids but for me being a male i guess i would have to still give the mech valve a thought. Oh i liked that statement "the things we do for our men...haha ". I bow down in respect to you.

AZ Don- oh yeah the battlefield of Warfin Vs multiple surgeries is like the most happening thing in my head at the moment.

pellicle- thanks a lot. one question to you. Is it that aneurysm happen only on the tissue valve and not on the mechanical? cause if thats the case i would prefer the mech valve.

Heart of the sunrise- thanks for that reply. I am actually a active guy who likes playing basketball and also loves the gym. the bleeding is always a worry in my head. Is the bleeding an issue only in case of serious accidents? also is it okay to play basketball and also life with the mech valve?

 

[pellicle]

pellicle- thanks a lot. one question to you. Is it that aneurysm happen only on the tissue valve and not on the mechanical? cause if thats the case i would prefer the mech valve.

http://en.wikipedia.org/wiki/Aorta

The aorta is the artery leaving the heart. See above.
I am uncertain what may have been the cause for my aneurysm but it could quite easily have been the multiple surgeries taking their toll

http://en.wikipedia.org/wiki/Aortic_aneurysm

 

[Jkm7]

Most people do not have warfarin problems to a great degree from testing and dosing IF, IF, IF they have good coumadin manager or become very capable of testing and dosing themselves. Both are most assuredly possible but we read all the time about incompetent medical professionals when it comes to warfarin. Far too many know far too little about this medication and spout some ridiculous instructions.

The problems also arise when someone on coumadin/warfarin needs medical/dental procedures which can cause bleeding and the instructions about stopping ACT for far too long in advance of the procedure and not starting again soon enough after to protect the patient from clots. Many dentists are terrified of warfarin patients and give such cautious hold instructions it can be dangerous. Then there are the MD's who won't do a colonoscopy without hold for days ...... After holding, some people have a hard time getting back into their usual range.

ACT is not quite as simple as take a pill or two each day.
That is over simplification IMO and does not give the 'whole story'.
I had a hard time with ACT for the short course I needed after having my tissue valve implanted. I am so happy I chose a tissue valve as my surgeon could tell me to stop at 2 1/2 months when he was not happy with the dosage warfarin I was taking. It could have been a real problem for me had I gotten a mechanical valve.

That being said, each must make their own choice but the more information you have the more educated a decision you are making.

 

[sood]

I asked my surgeon if I can play basketball on Coumadin and with a mechanical valve and he said no problem.
Now does that mean I will go play on an outdoor court? I probably won't even though he didn't tell me I couldn't.

 

[Superman]

pellicle- thanks a lot. one question to you. Is it that aneurysm happen only on the tissue valve and not on the mechanical? cause if thats the case i would prefer the mech valve.

AmyR,

Aortic aneurysm occurs at a higher level in BAV patients than in the general population. It appears that for some BAV patients, there is a connective tissue disorder that exists along with the rest of the congenital heart defect. Further, according to some research, it doesn't matter if the valve is replaced at all. The study in the link asked the question if dilation took place at a lower rate in post AVR BAV patients than in pre-AVR BAV patients. It also compared patients with normal tricuspid aortic valves that requried AVR for other reasons. These patients did not show the same level of fragility in the aortic wall as BAV patients did.

http://circ.ahajournals.org/content/108/10_suppl_1/II-291.full.pdf+html

The patients with bicuspid aortic valve showed progressive dilation of the proximal ascending aorta even after AVR. Thus, AVR could not prevent progressive aortic dilation in those patients. Since the aorta did not dilate in patients with tricuspid aortic valve undergoing AVR, aortic dilation in patients with bicuspid aortic valve seems mainly due to the fragility of the aortic wall rather than hemodynamic factors caused by aortic stenosis or aortic regurgitation.

Call it anecdotal, but I had a mechanical valve put in just before I turned 18. At 36 I had to have a re-op due to an ascending aortic aneurysm. While they were in there, they replaced my old valve as well so they could give me a one piece conduit graft, but it wasn't necessary. My original mechanical valve was doing just fine.

I'm interested in pellicle's experience though. Did I read that right? 20 years on a tissue valve received in your late 20's? Wow.

 

[Derek L. Shenefelt]

I had my first aortic replacement when I was 20 years old. I chose an Edwards tissue valve and it lasted 7 years. A little over a year ago, I had to have the tissue valve replace and I chose the OnX mechanical valve. I made this decision primarily to avoid additional surgeries every 7-10 years if I had chose another tissue valve. Secondly, the Onx valve has the potential for a lower Warfarin dose than other mechanical valves. This OnX is currently in clinical trials for reduced warfarin dosage and is doing quite well..

Overall, I am very happy with my OnX valve. I haven't had any complications and my warfarin dosage has remained steady over the past year. I highly recommend you consider OnX (http://www.onxlti.com/). Good luck in you decision!

 

[neil]

at your age i would lean towards mech, nobody knows how long any given valve lasts but mech should last a long time, warfarin is the down side to a mech but most people seem to manage ok, remember none of us on here are medical advisers so have a good talk to your cardio and surgeon,they are the experts,

 

[AmyR]

Thank you so much guys. I think i will go ahead with the Mech valve cause i really dont want to go through this trauma in the next 7 years again. I guess my share of this amazing trauma should be given a good long gap . will keep you guys updated and i sure will talk to my surgeon about the on-x Derek thanks.

 

[kimcdougc]

Thank you so much guys. I think i will go ahead with the Mech valve cause i really dont want to go through this trauma in the next 7 years again. I guess my share of this amazing trauma should be given a good long gap . will keep you guys updated and i sure will talk to my surgeon about the on-x Derek thanks.

Amy,

I am having my AVR on this Thursday, May 23rd. I to have chosen the On-x valve in lieu of the St. Judes. Do your research on the on-x valve. The trials are almost over (I believe a year or so) to just use aspirin instead of Coumadin. In Europe they already just use aspirin. So, I will let you know how it feels to be over the mountain in 4 days! Everyone that posts on this website has been a godsend to me. - Kim

 

[Mike59]

Good luck for the operation from the UK