Tissue? What are the implications?

[Steve B]

Hi - let's start with a brief history. I'm new here - I'm 46, am (otherwise) fit, healthy and active, and have a young family. Through all of this I have unknowingly been 'carrying' a bicuspid aortic valve. In the last couple of months I've had some significant breathless episodes (one whilst swimming hard and others when I was out running or cycling) and, since this year started, I've generally noticed a lack of kick when I've been exercising.

Anyway - a visit to the doctor to get my lungs checked out showed (on a chest x-ray) an enlarged heart. A subsequent referral to a consultant cardiologist (ECG & mini-echo, followed up with a trans-oesophageal echo and a coronary angiogram) showed stage 4 regurgitation on my aortic valve. So, on to visit my surgeon (last week) who answered a lot of my initial questions and calmed my nerves but left me with the inevitable 'tissue or mechanical' question.

I'm now looking at surgery (hopefully by October) and think I am content with a decision to run with a tissue valve. Given what I like to think of as an active lifestyle I was not overly comfortable with the notion of ACT, and the potential noise issues with a mech valve didn't impress my wife either! I understand just how personal the whole choice thing is and I appreciate that for every advocate for tissue there will be an advocate for mechanical. I guess it's a good thing we have the choice!

One thing that I am wondering though is whether or not a tissue valve will obviate the need for continuing drug therapy. If (and I appreciate that it really is an 'if') everything else with my heart is sound can I look forward to 10 years (or whatever) of hassle-free living or will I still find myself needing to medicate? Just what's the deal here?

I'm already finding lots of interesting threads - thanks for making it all so informative and supportive! Thanks too for any and all of the words of advice you may have ...

Cheers - Steve

 

[Paleowoman]

Hi Steve - welcome to the forum from a fellow Brit I'm too in the waiting room for valve replacement due to bicuspid aortic valve, first heard when I was 25 and now I'm in the last year or two before surgery. I'm in my late 50's and very active and opting for a tissue valve because of the noise issue and because life would be very difficult on warfarin as I have other medical issues. I understand there's no need for medication with a tissue valve...unless of course other problems crop up, a few people seem to need beta blockers after surgery or a pace maker.

all the best,
Anne

 

[epstns]

Steve - Unfortunately, you could run into just about anything after surgery. I'm a bit older than you (now 63), but there are some similarities in our history. I, too, had a bicuspid aortic valve. Mine turned stenotic (calcified, didn't open fully), starting when I was in my 50's and getting really bad about last year. For over 30 years I ran, rode a bike, raised a family, and all the activities that went with that. When the valve slowed me down too much, we opted for surgery. At my "ripe old age" I chose the tissue valve. Prior to surgery, I had one prescription drug - for high blood pressure.

My surgery went well, as far as the surgeon could tell. But (of course, there's always a "but.") after surgery I ran into a raft of complications. The most troubling had to do with my heart rhythm. I'll make the long story short (I am NOT trying to scare you, just explaining that for me, things took a wild turn.), I now have 3 heart-related meds. One is for blood pressure, one for cholesteral management and one for "help" managing my heart rhythm. I also have a "temporary" prescription for warfarin that, hopefully, will end in a month or so. It sounds like a big list, but truth be told, it really is no big deal with all of them.

My whole point here, Steve, is to say that the meds should be the least of your worries. You have a family. Having the surgery is as much for them as it is for you. You will feel so much better after surgery that you will conclude that any inconvenience caused by the meds becomes insignificant. If, on the other hand, you opt not to have the surgery. . . the picture is not at all good.

As for the projected life span of the current generation of tissue valves, I would say that they are expected to last longer than their predecessors. I can't answer for your age group or for you in particular, but I will say that tissue valves are expected to have shorter lives when implanted into younger patients. At 46, you are considered younger -- they usually speak of older patients starting at age 60 or so. When I was first diagnosed at around age 52, I would have gone with a mechanical valve. Once I passed 60, I changed my mind. We have both younger and older patients here who have chosen both types of valves - each for their own reasons. The only drawback I would see for a patient your age is that the likelihood of needing another replacement valve in your lifetime is high. If that is less burdensome to you than the thought of anticoatulation meds and clicking sounds, then tissue may be a good choice for you. If, on the other hand, you want to avoid a re-operation at all costs (or at least minimize the potential for one), then mechanical may be your choice. Unfortunately you will not know how the surgery affects you until after you have committed to a valve type and had it implanted.

I could go on and on, but I think you get the picture. These decisions are intensely personal to the patient. You have to consider what is important to you, and discuss it with your surgeon. The surgeon will be able to tell you if you're on a badly wrong track, and will be able to fill in some of the blanks about what usually happens. Unfortunately, the surgeons rarely have been through heart surgery, so much of their wisdom is learned from books and classes. The people here will speak from experience - and I'm sure many of them will be responding to this thread once they wake up. . .

Steve - Welcome to The Waiting Room, the virtual room where many of us await their own turns at valve surgery. Make yourself at home, visit often. Read a lot and ask questions. The people here are among the most knowledgeable about valve surgery and are some of the most caring and sharing folks I've ever met.

 

[kfay]

Steve, At the age of 45, I got a tissue valve as well. Presently, I don't take any meds for my heart. That is not to say that at some point I may. Once you have had surgery, you are at more of a risk of developing some rhythm issues, some of which may require you to go on warfarin. That may be a temporary thing or, it may become a permanent thing. I've also noticed that people with bicuspid valves have a tendency to take more meds to keep their blood pressure in check.

Bottom line is, you may come out of it without any drug therapy necessary, or you may not. There really is no way to know. Having to take a pill or two a day is a small price to pay for your health and being able to be around to watch your young family grow up.

 

[ken taylor]

Im 62 , one months ago had onx mec. valve . Why it was my 2nd ohs and I do not want a third. As far as the meds to many folks talk about taking the warfarin. To me its no big deal and once you get regulated your prety much take the same amount . I think that many young folks that go with a tissue valve might wake up after there surgery and say just maybe I should have gone with a mec. valve. OHS surgery is no fun and for me I wanted do do this one time. Just my openion and my life stile is diffrent than others

 

[Steve B]

Thanks ... with ref to Steve Epstein's post and the need for re-ops, my surgeon was telling me that he hopes to do most of his work 'keyhole' so I should be looking at a 4 to 5" entry just left of midline (to be fair, he did say it was very large key!). He needs to shift a couple of ribs to make enough space to rootle around but (if I recall his words correctly) he reckons the reduced pericaridal trauma reduces problems with adhesions etc post-op and the fact that the whole sternum area remains intact sounds like a nice plus. The other benefit of this entry method is that subsequent re-ops are easier as there is far less scar tissue to be concerned with (does this make sense?). The other re-op issue is that - given general surgery advances - there may be the possibility of other 'delivery' options (catheter). All in all this has lessened the worry of the re-op and has helped tilt the balance away from the mechanical valve option.
I fully appreciate and agree with what many others have said - this is a big problem but I know it can be fixed. I also know that whatever my state post-surgery the renovation works will give me a better quality of life and will keep me around for considerably longer than would otherwise be the case.
Thanks again ...

 

[Steve B]

Im 62 , one months ago had onx mec. valve . Why it was my 2nd ohs and I do not want a third. As far as the meds to many folks talk about taking the warfarin. To me its no big deal and once you get regulated your prety much take the same amount . I think that many young folks that go with a tissue valve might wake up after there surgery and say just maybe I should have gone with a mec. valve. OHS surgery is no fun and for me I wanted do do this one time. Just my openion and my life stile is diffrent than others

Fair point Ken. I hope I don't regret things that quickly but I'd be amazed if, as the symptoms return and the time for a re-op is looming, I don't think back to this initial decision. Whatever, right now I accept I'll be doing this at least one more time - when the time comes to decide again the call may go the other way.

I appreciate that many thousands of folks are just fine with their meds - for me though, living my life to the full for another ten years or so without the need for additional meds is an attractive option.

The purpose of my original posting was firstly to jump into this new community I've found myself part of and then to try to get a feel for just how many tissue valve recipients end up on additional meds anyway. I know there are a many reasons for ending up needing meds but some understanding around just how fuzzy or clear-cut the 'mech valve = meds; tissue valve = no meds' picture is would be useful.

Cheers - Steve

 

[Paleowoman]

my surgeon was telling me that he hopes to do most of his work 'keyhole' so I should be looking at a 4 to 5" entry just left of midline (to be fair, he did say it was very large key!).

Oh that's interesting ! I was asking about that kind of surgery here on forum and of my cardiologist. Do you know what made your surgeon decide on that type of surgery as opposed to cutting through the sternum ? What's the name of your surgeon btw ? I like to look on this website which has details of cardiothoracic surgeons in the UK: http://heartsurgery.cqc.org.uk/Survival.aspx

The other re-op issue is that - given general surgery advances - there may be the possibility of other 'delivery' options (catheter).

That's what my cardiologist said too.

bw's
Anne

 

[ottagal]

Welcome to the forum and sorry for the circumstances. I have a tissue valve and am 'heart medication' free (touch wood).

Initially, I was on a number of medications post-op and was weaned from most of them 6 months out. Every situation is different so it can be difficult to predict who will be medication free and who will not.

There was a thread posted not too long ago asking members who is medication free after surgery. You may be interested in looking it up.

Wishing you all the very best,

 

[Lynlw]

Hi Steve, It's sounds like you've put alot of thought into this, that's good. FWIW My son is 23, has pretty complex Congenital heart problems and has had 5 OHS (the 1st at 10 days) part/some of his surgeries were valve related, but his is on the right side of his heart, pulmonary so pretty much everyone recs tissue valves, because the risks of clots are to high even with coumadin and tissue valves usually last longer on the right side.. For the most part after he recovers from the last surgery, he is not on any meds at all.

The valve replacements by cath that you are talking about are usually called percutaneous valves, if you want to do a search for them, there are quite a few companies working on percutaneous valves, but the most common ones right now, are either the Sapien or Corevalve Aortic valves, that are still in trials in the uS, but I believe approved in the UK and some European Countries or the Melody pulmonary valve that already is approved for use in most all countries.

 

[LeakyUK]

Mine was a simple AVR but I did not get the keyhole option. I went mech at 58, largely because I knew I would spend the next few years worrying about the re-op.

1) ACT - Already taking Blood Pressure Meds. Warfarin managed by GP - twice weekly tests at present but expected to be every 4 to 6 weeks once it settles (Currently taking 4mg - no side effects)
I do not take part in 'contact' sport (or any other sport) and am incompetent at DIY, so ACT is a great excuse to give up.

2) The noise - yes it ticks, I can hear it and so can the family at times. Does not keep me awake because I know its keeping me alive

3) Medication - you may need drugs to help your heart remodel (go back to its normal size) and you may need something to moderate heart rate, it is not uncommon for heart rate to go a bit out of control after surgery.

I asked my GP about ACT before making my choice and was re-assured by the discussion.

The tissue argument is that it can be a very sensible choice for the young and active if the re-op does not scare you - I am almost 4 weeks out & would not want to be doing this again approaching 70.

 

[normofthenorth]

+1 to everything above! 'Pem' started another recent thread that got lots of responses, entitled "For reops: are you glad you started with tissue?" Sounds pretty relevant to your decision. He's going for an ATS mech valve (so far), any day now.

The On-X mech-valve people claim that HALF of all of us tissue-valvers end up on ACT/Warfarin, though mostly not as constantly as the mech-valve people. Arrhythmias like A-fib are responsible for lots of ACT in patients without mech valves, and they're unfortunately common in post-HVR patients. Like Ottawagal, I'm currently med-free with a nice durable "old-fashioned" Hancock II pig valve, Aortic position. I'm guessing the median durability of that "Gold Standard" valve (according to the 2010 article at ats.ctsnetjournals.org/cgi/content/abstract/90/3/775? ) at 46 y.o. is maybe just under 15 years. YMMV, of course.

 

[mainframe]

Steve,

When I got my tissue valve at 45 I was relatively med free after. My primary care doc ended prescribing a blood pressure med a few years after the AVR but no other drugs.

Best of luck with your decision and as you jump through all the pre surgery hoops.

 

[Jkm7]

I have bovine mitral replacement and am very happy I made that choice. My surgeon was of the thinking he wanted his patients on a three months course of coumadin just until their own tissue grew over the seating of the valve. In my case, I did as instructed and required a huge amount of coumadin which increased each week as I recovered and yet never reached therapeutic range. My surgeon told me to stop the coumadin at 2 1/2 months as he did not like me being on so much.

This was not something I could have known in advance. Had I opted for a mechanical valve and required ACT the rest of my life, I would have been extremely uneasy on such a high dose. Yes..... I 'get it' about the correct dose is that which keeps each of us in the proper range but I was taking too much for comfort.

You're doing wonderful research and seem to have an excellent grasp.
Wishing you all the best.

 

[Steve B]

Re post from Paleogirl "Do you know what made your surgeon decide on that type of surgery as opposed to cutting through the sternum ? What's the name of your surgeon btw?"

Hi Anne - no, I don't know why he suggested the keyhole approach but it sounds good to me ... fyi my surgeon's name is Steven Griffin - his NHS base is at Castle Hill Hospital just outside of Hull, East Yorkshire.

 

[Paleowoman]

fyi my surgeon's name is Steven Griffin - his NHS base is at Castle Hill Hospital just outside of Hull, East Yorkshire.

Ah, look here, on Dr Foster's Consultant Guide: http://www.drfosterhealth.co.uk/con...px?p=1&s=c4d47782_8d81_4f23_bc47_29f842876681

Mr Griffin has a special interest in minimally invasive surgery Sounds good

Anne

 

[Greg a]

Welcome to our OHS FAMILY gld you found us and keep us posted as you progress along

 

[Steve B]

Ah, look here, on Dr Foster's Consultant Guide: http://www.drfosterhealth.co.uk/con...px?p=1&s=c4d47782_8d81_4f23_bc47_29f842876681

Mr Griffin has a special interest in minimally invasive surgery Sounds good

Anne

Just the luck of the draw I guess. Of course I'll keep you all up to speed on how it all pans out.

 

[Steve B]

Thanks Greg!

 

[Mentu]

Hi, Steve. Almost two years ago I went with my surgeon's recommendation that he implant a tissue valve after he learned that I have an uncle who had a mechanical valve that had to be replaced due to tissue growth. Other than taking aspirin, I take nothing for my valve. That said, there is also the issue of bacterial infections. When you receive a tissue valve, it is necessary to begin treating infections immediately since some bacteria can damage the valve. My regular doctor of many years is well aware of the problem and has helped insure that I have antibiotics quickly when I need them. This kind of damage doesn't happen often but one must take care to avoid the possibility. One of the things we must all live with is that there are no certainties in life. Many people who have never had a life threatening illness live as though this is not true. We do not. Valve choice is the same, Steve, there are probabilities but no certainties.

Larry