Frustrated and angry

[ottagal]

It is not necessarily true that IF you choose a tissue valve you WILL be on coumadin anyway in the beginning. Justin has never been on coumadin and a few times this came up asking if other tissue valve patients took coumadin right after surgery and many did NOT. (I used to be able to find the links, but can't the way the search is set up now)

I would like to add a warm welcome to this fantastic site, Howard. As you can see you will get tremendous support here. This is a very scary time for us when we get this type of news.

I too felt a tremendous sense of pressure and was paralysed with fear when I had to decide about valve choice. I think others have provided you with another way at looking at your choice so I really don't have anything to add to what others have shared and recommended.

I can tell you how I arrived at my decision. After reading voraciously on the subject, being glued to VR.org, consulting on many occasions with my family and close friends (who know me well), and of course consulting twice with my surgeon (who leaned towards tissue for me even though I am in my 40's for reasons I won't go into at this time) , I finally after MANY sleepless nights, made peace with my decision of a tissue valve ( and it was not an easy one for me).

Re: Lyn's post: I was one of those who was NOT on coumadin after my AVR with a tissues valve, but 325 enteric coated aspirin 3 months post op.
It sounds like different surgeons have different protocols for their patients.
I did have several post-op complications, but did not end up with atrial fibrillation; hence no need for coumadin.


Good luck with your decision (it is a very personal choice). We are here for you.

 

[Johan]

At my first session with the surgeon, he suggested an ATS mechanical, in fact pulled a demo model from his drawer for me to look at. So we were all set on a mechanical and warfarin.

I then started to be interested in the ON-X and my surgeon said he was not comfortable with that valve but referred me to another surgeon at a different hospital who had a lot of experience with the ON-X. I discussed it with both surgeons and we got to the stage where I was going to switch hospitals and surgeons to get the ON-X.

My original surgeon then called me in and said he discussed my case with the ON-X surgeon and they both wish to suggest that I consider a tissue valve (bovine pericardial) at my age of 66. All the pro's and cons were then discussed at length. They left it with me and I venture to say that I then made a very informed decision based on the input from 2 surgeons, 2 cardiologists and my own reseach, to go for the bovine pericardial. I was never on warfarin, only 81 mg aspirin.

I hope to get 15 or more years out of the valve, putting me in my eighties. And then ??????...well what ever will be will be....I must admit a redo operation at that age scares me but hopefully all this conjecture about tissue valves lasting longer in older people is correct and my valve may just outlive me. As my GP so delicately puts it "something else might get you"!

At my age this was the right decision for me. We just went to Greece and Egypt for a month's holiday and I never even thought of my valve let alone worry where to get my INR tested in these strange locations, if I had a mechanical valve. The main thing is that we all now have choices and the best choice I made was to submit to the surgery. I now have the mental and physical stamina to tackle things I would never have considered even 20 years ago. This surgery is not only a life saver but a life changer!

Don't despair!!

 

[Jkm7]

Another thing you may wish to consider is managing of ACT when needing procedures/tests/treatments that might involve bleeding. It can sometimes be confusing and difficult when all the professionals involved in your treatment are not knoweldgable about Coumadin therapy. Some are not as educated re: Coumadin as they should be.

 

[Lily]

...This is a terrible feeling and I am trapped.

I feel for how you're feeling. I knew for a long time that valve replacement surgery was eventually going to have to happen and I'd had another related heart surgery when I was 17, so it wasn't new to me. I did think the valve replacement surgery recovery was a bit rough, but I was AMAZED at how much better I felt overall with my new properly working heart valve, even with a lot of little things that I hadn't realized were related to not getting proper blood flow. It's only my opinion but I don't think either choice is necessarily a bad choice, depending on certain criteria, and I'm happy with mine.

 

[Luana]

For me it boiled down to this: did I want to have this surgery again? My answer was no. At first I was leaning towards a tissue valve; however, my surgeon advised me if I had a tissue valve I would most likely have 2 or 3 more surgeries, and I am close to you in age.

That was the total deal-breaker for me. VR surgery is a lot to go through. I've had surgery before and it was like a romp in the park compared to this. I don't want to go through it again. I know I have no guarantee even with a mechanical valve that I'll never have another surgery; however, with a tissue valve, more surgery is a given, not just a very remote chance.

I'm very grateful my surgeon strongly suggested I get a mechanical valve. I don't know why more surgeons don't offer such suggestions. I felt like I was in no place to fully make the decision on my own without some type of professional insight. I'm starting to feel leery of the surgeons who tell their patients to make the decision on their own.

 

[Lily]

...so nice to read the answers above with people being so positive about either choice,long may it continue...

Yes, nice and positive

Thanks Neal. I am leaning heavily toward tissue too and hope my experience through this is as much of a relief as yours.

Howard, best wishes

...Here is a link to a CIGNA insurance site that provides a decision chart to help with valve selection.
http://www.cigna.com/healthinfo/uf4587.html#uf4587-Intro...

I found some of the stats in this link very interesting and well-worth the read; thanks for posting it

 

[Jkm7]

<snip>


I'm very grateful my surgeon strongly suggested I get a mechanical valve. I don't know why more surgeons don't offer such suggestions. I felt like I was in no place to fully make the decision on my own without some type of professional insight. I'm starting to feel leery of the surgeons who tell their patients to make the decision on their own.

Another reason it is so important we pick the surgeon that is right for us. One must have total faith and trust in their heart surgeon. The style and bedside manner that works for one patient may be totally wrong for another. My cardio and surgeon were open and available and willing to help in all possible ways. Neither told me which valve to choose but they were patient in discussing the pros and cons of each. This was a decision I needed to make, not them. I had to live with that decision, not them.

IMO.......

 

[ks1490]

Sounds like you've done alot of research but I have two suggestions - i) go to the Cleveland Clinic website and find the transcripts from the online webinars that they have on this topic - this will give you a sense of their current thinking on the current use of percutaneous/valve-in-valve replacement of tissue valves and their outlook going forward; ii) look up research on the stock of Edwards Lifesciences - for example, if your online brokerage gives you access to equity research, look up Edwards under the ticker EW. This will give you a sense of others' objective opinions of the status and prognosis of Edwards' PARTNER and (newly-announced) PARTNER II trials and their impact on the future of tissue valve replacement.

Have to say I am a pretty decisive guy and at age 43 had to make the call in April - it came down to the wire and I made the decision the night before the surgery. It's a bear of a decision but whatever you do don't look back - once you wake up from the surgery and realize that you're fine (which you will be), don't even think about the decision again, just live your life, that's what the surgery is giving you.

 

[Philip B]

Trapped?

Trapped?

Yeah, when one gets the news that it's time for a replacement part or two, it's hard to avoid feeling trapped. As others have noted, there really aren't any bad choices if the choice one makes prolongs life.

Personally, that trapped feeling eventually gave way to the realization that I was being given an opportunity rather than some kind of sentence. It's been a great opportunity. My life has moved along with little change since my AVR surgery. I've not been inconvenienced by the valve I chose.

=Philip

 

[RI Mom]

I can certainly understand your anger and frustration.....facing a surgery like this is no walk in the park. I just wanted to comment on the issue of your choices and tell you our experience. My son has both a tissue and mechanical valve and in our case, the tissue has been much more trouble than the ACT associated with the mechanical valve. Now I should caution that kids issues with valves are different than adults but I just wanted to chime in as someone who has both.

 

[Newbie]

I had a different experience. I had about 2 weeks from the realization that I needed a replacement to surgery. First time (and only) time I met the surgeon, he simply said to me, at your age (49), I would not recommend tissue, mechanical is the way to go.
Good luck

 

[scott.eitman]

I have had both: Homograft for 12 years and an On-x for 9 weeks. The ability to get to choose this is awesome. Voluntarily walking into a surgery is the difficult part. Good luck with the whole process.

1st bicycle ride yesterday: 16 miles!

 

[jcmm]

I had my AVR on June 24th and went with a mechanical valve, b/c I did not want to go through this surgery every 10-15 years. I am 39 years old and live a very active lifestyle and since the surgery I can say that I have had no issues with ACT and my INR level is managed well and the meds do not appear to have any affect on me that I can tell. I can hear my valve "ticking" when my heart beats, but a few weeks after surgery this becomes a nonissue as well.

 

[Protimenow]

Howard:

You said that either decision is a terrible one. Others have said that NO decision (deciding that it's better to die than it is to have to choose) is the terrible one.

For me, it was pretty much a no-brainer -- I had known since my 20s that I'd be needing an AVR when I was somewhere in my 40s. At that age, the only real choice was mechanical -- I didn't want to have to get that valve replaced EVER - and the tissue valves simply did not give me enough time to go without repeat surgery. If I was 51 again, I'd probably still go with mechanical -- expecting to live another 40 or 60 years (I'm not entirely joking - my father's in his 90s). I wouldn't want to go through repeat surgery - even if it was 10 or 15 years down the road. (And the possibility of doing a percutaneous replacement of a failing tissue valve by the time your current tissue valve starts to fail is still not a sure thing).

Your fears of lifetime ACT is really a non-issue for many of us. (It is for me). Now that meters are available, and most insurances cover the meters and testing (and, if not, you may be able to buy a meter and supplies and run your own tests), managing your anticoagulation - or just reporting the results to a doctor who may POSSIBLY know enough about ACT to help you with dosing, the issue of maintaining your INR within a target range is almost a non-issue. I'm not a diabetic, but I suspect that managing blood sugar levels, with daily testing, dosing with insulin or other medications, etc., etc., is probably much more of a pain than testing your INR every week or two or three, and making slight adjustments to your dosage if you slip out of range.

(I occasionally think of Bobby Darin, and consider how, if he had hung on for another 15 or 20 years, or had known Dick's doctor, he may still be singing today).

Of course, the decision is yours to make - but please don't consider it to be terrible. Either should give you a good outcome - your decision may be based on how long you expect to live with the valve you choose - and whether or not you want to risk going through replacing a tissue valve probably once or twice more in your lifetime (even if it's done without opening your chest), or living with a ticking valve and managing your ACT.

Good luck.

 

[joanie]

Hi Howard!

I'm 57 and had my aortic valve replaced this past May with a tissue valve. For me the choice was pretty easy. Having watched friends and relatives on coumadin, there was no way I wanted to do that unless I didn't have a choice. Luckily, there was a choice! Others have come to a different conclusion and you have to find the best answer for yourself. (by the way, I'm one of those who never was on coumadin, even after surgery. A 81mg aspirin a day is all I have to take.)

Yes, it is most likely that I'll need another valve at some point (current tissue valves have a life expectancy of 15-20 years; I'm planning to live far longer than that!) For me the surgery wasn't that bad - no real pain or complications. The recovery has had its ups and downs but overall has been uneventful. I might not be so lucky the second time but I'm an optimist . . ..

And as an optimist . . . when I learned I needed AVR surgery I was scared - the only surgery I'd ever had was my tonsils when I was 4! I was expecting horrible pain, was afraid of anesthesia and being intubated . . . heck, I was even dreading being catheterized! BUT I was also very HAPPY - because I had something they could fix! It's not like so many other things that friends and family have suffered through, this is MECHANICAL. There is an unbelievably high success rate for this surgery. We are, in fact, the lucky ones.

It sounds like you have done your research . . . you will make the decision that's best for you. Once you have, relax. Put yourself in your surgeon's hands and concentrate on how much better you will feel once this is all over.