Seems there are no good choices at 34yo

[rmn]

Hi all,
I just found this site and am getting good information from all your posts. I'm 34 yo and scheduled for AVR next month. I had a bout of endocarditis last spring during which the doctor discovered I had a bicuspid aortic valve - first I'd hear d of it! My cardiologist thought I might be able to postpone surgery for a number of years with monitoring every 6 mos, but my first 6 month follow up showed reduced EF and greater aortic insufficiency (I think I got my terms right), so although it's still my choice, they recommend that I get the surgery done sooner rather than later.

My cardiac surgeon recommends the mechanical valve for my age. I am certainly not excited about the anticoagulation therapy or the ticking with mechanical valves, but the idea of automatically having to do another surgery in 10 or 15 years isn't appealing either, as would be the case with a tissue valve. Then again, who knows if the mechanical valve will last a lifetime since I'm still relatively young? As I said, seems there's no good choices. As one who generally hates going to doctors, the thing I'm having the most trouble with is the idea of becoming a lifelong 'patient'.

So far my decision is to go with what gives me the best chance for avoiding repeat surgery and with what my surgeon knows best (he's done lots of AVRs using mechanical valves), and just take whatever comes. I'm generally pretty optimistic about things, but as the date gets closer the nervousness starts creeping in. I look forward to reading everyone's stories for advice and inspiration.

Thanks for reading.

 

[hensylee]

welcome, r to VR. We are happy to have you aboard. All of your answers will be answered by members. They will be along before night is done to give you their experiences. I can't because I didn't have valve replacement, but that's what the site is all about. You have come to the right place where you will get more than your doctor gives you.

 

[geebee]

Welcome RMN.
There ARE good choices, it's just a matter of deciding what's right for you. The only BAD choice is not having surgery because, well, you know the alternatives.
As you mentioned, a biological valve will require resurgery at some point. How long it lasts really varies. Obviously the good side of a biological is that coumadin is usually not needed. However, I have heard of folks who had biological valves implanted and still required anti-coagulation therapy due to other problems so there are never guarantees.
A mechanical valve DOES require coumdin therapy. You may or may not require a second surgery down the road because the sewing ring CAN leak after many years. Again, every person is different.
I have been on coumadin for 24 years. My life has NEVER been altered because of coumadin. There are some things to watch out for and you will bruise more easily or bleed a little longer from cuts but, all in all, it's really no big deal. As long as you test regularly (whether at a lab or home test) and adjust your coumdin accordingly, you will be fine.
Good luck with your research and welcome once again.
Smiles,
Gina

 

[rmn]

Thanks for the replies and kind words already!

Pam, no I had no diagnosis of a heart murmur ever. Seems strange to me that I'd go 33 years without knowing it, but the doctors said it's not uncommon. Even when they knew it was there, it was difficult for them to hear (only after exhaling and holding my breath). Of course the echo and TEE's confirmed the bicuspid AV.

If I might ask, where did your husband get his procedure done and by whom? I live in the Denver area. Sounds like he has had a great experience thus far and that's what I'm looking to.

Great site, thanks!

 

[Karlynn]

Welcome! I had my mitral valve replaced at 32 with a mechanical valve. That was 13 years ago. If I find out tomorrow that it has to be replaced again for some reason, I would not regret the initial choice of a mechanical valve. With a tissue valve I would have been facing surgery at a time in my life when 24 hours weren't enough time in the day. I would not have been happy about having to readjust to surgery and recouperation time when I was so busy with my family.

Coumadin is something that can be managed easily. What we have found here is that many doctors just don't have a clear enough picture of what if means for the patient and thus, tend to scare the daylights out of them. However, if your surgeon primarily uses mechanical, he must have a good idea of what it will mean for his patients.

There's lots of information here. We know that most of us are "valve loyal". If we have a mechanical, we swear by it, and if we have a tissue, same goes. The bottom line is that this site is filled with people living happy, healthy, successful lives after valve replacement and that is the tie that binds us.

Best wishes!

 

[bvdr]

Welcome, RMN. I think Gina has it right that the only bad choice is not having the surgery ....or waiting until so much heart damage is done that you don't get optimum results when you finally have your valve replaced.

I understand your feelings about becoming a life-long patient. I dealt with those same emotions and remember the first few times I mentioned to people that I had heart problems. It felt so unreal. You will never like it but you will and must adjust to it. We benefit from living in a time where there have been so many advances in the very area (hearts) we have our problems. Even though it is still very difficult at times we still, for the majority, have conditions that can be corrected or at least treated. You will grow as a person as you go through this.

We have several other young men who have gone through the same decision process with which you are now dealing. I'm sure you will get some feed back from them very soon.

I'm glad you found this site and welcome you to the family. You have a lot of reading on this site and if you run into any problems or have a question then please ask and someone will help you.

 

[PapaHappyStar]

Hi -- I was not diagnosed with a congenital bicuspid AV until last may ( at 32 ), and my murmur was very pronounced when a physician first heard it. I had aortic valve stenosis initially mismeasured as moderate and then found to be severe. Last month I had the Ross procedure done which involved switching the diseased aortic valve with my pulmonary valve, the pulmonary valve was replaced with a donated valve from a deceased person. In younger patients the Ross procedure seems to provide a longer reoperation free valve life than tissue valves and is non-thrombogenic and does not need anti-coagulation ( Coumadin ). There is a debate whether patients with regurgitation and/or aortic dilatation may have higher rates of failure of the Ross but some surgeons have developed techniques to reduce the risk.

Its a tough decision to make at any age, but at ours we have an additional choice and more time to adjust to life with valve replacement.

Burair

 

[Bionic Valve Tim]

Welcome to the site. I was a few days shy of 31 when I found out I needed surgery, though I knew about my bicuspid valve for many years prior. I can sympathize with your apprehension at being a patient for the rest of your life and not liking the idea of frequent doctor's appointments--my "yearly" echograms became "bi-annual" and then last year I went in for one because my PCP noticed I hadn't gotten one in four years! I just don't go to any doctor often, and I let it slip through the cracks. My cardio said my condition was pretty severe and just yesterday I had my first post-op echo that will hopefully show things returning to normal (in terms of heart enlargement, etc.). I've been very upset at myself for waiting so long, and I'm hoping I didn't do any more damage to my heart in the process...

As for advice, I'd suggest spending some time in the coumadin forum to learn more about anticoagulation before you make your choice one way or the other. As Karlynn said, we tend to be very loyal in the mech vs bio debate, but that's because each is right for some people--so in that regard, whichever you choose is the right decision for you.

Good luck and keep us posted,
Tim <-- a former Coloradoan feeling more than a little envious of the current Coloradoans

 

[Abbanabba]

Hi RMN, I guess given the choice, none of us would need to be here if we could avoid it (..sorry guys, but I think you know how I mean that ..), but here we all are. I've been a heart patient since the day I was born, but it was only recently that I found out my heart wasn't "fixed" after all, and that I'd be facing a pulmonary valve replacement sometime down the track.

Unfortunately (?) I don't get a choice between bio or mechanical as they don't make mechanical PV's (..or at least that seems to be what all the research says (if anyone can tell me any different I'd love to know)..). I sometimes wonder if not having that choice makes it easier for me...... the thought of future surgeries scares the h*ll out of me, but then I think I'd go insane if I had to listen to my heart "clicking and ticking" all the time.

It's definitely a hard call, but whichever way you go, it's got to be better than the alternative!! I think Karlynn is right when she says that most people seem pretty happy with whatever valve they've got. For most of those here with "new" valves, it's also given them a new lease of life, so that's got to be worth something.

I hope you can reach the right decision for YOU. Good luck!

Anna : )

 

[Raverlaw]

RMN,

I got a St. Jude's mechanical at age 49. I wouldn't change a thing - the ticking is barely noticeable and often I can't hear it at all. When I can hear it, it is very comforting and reminds me how lucky I am to be alive.

My life is 100% better since the surgery. Coumadin is no big deal. Sure, there are minor complications, but nothing compared to falling over dead! And while younger guys like you will probably recover quickly from the surgery, you sure don't want to sign up for a second one unless you have to - we all know there aren't any guarantees in life, but absent a big problem, my little bionic valve will outlast the rest of me!

Get informed; there's a ton of information on this site and elsewhere. Then make the decision you feel most comfortable with.

Good luck-

 

[jbrown413]

hey RMN, your life is just beginning...

hey RMN, your life is just beginning...

Hi all,

{hi rmn -- i'll be in these {] things thru-out your message...]

I just found this site and am getting good information from all your posts.

{like here...]

I'm 34 yo and scheduled for AVR next month. I had a bout of endocarditis last spring during which the doctor discovered I had a bicuspid aortic valve - first I'd hear d of it!

{never had the endocarditis myself, but also had the bicuspid aorta. had a heart murmur as a kid -- never caused me a problem, and they always said they'd just pop a new one in there if it went bad. figured that would be around 70. turns out it was at late-40. i turn 50 this weekend.]

My cardiologist thought I might be able to postpone surgery for a number of years with monitoring every 6 mos, but my first 6 month follow up showed reduced EF and greater aortic insufficiency (I think I got my terms right),

{you got it right!!!]

so although it's still my choice, they recommend that I get the surgery done sooner rather than later.

{i agree. waiting too long might run the risk of irreversible enlargement of the left ventricle]


My cardiac surgeon recommends the mechanical valve for my age. I am certainly not excited about the anticoagulation therapy or the ticking with mechanical valves, but the idea of automatically having to do another surgery in 10 or 15 years isn't appealing either, as would be the case with a tissue valve.

{actually, its not automatic in 10-15 years. some have lasted 20 years or longer from what ive heard, but even at that your still only 54. as for the anti-coagulation therapy, have been doing it for just over 9 years, and its been no problem. i do every thing i used to do, and luckily, i am very stable. i havent altered my menu a bit, still drink like a fish, although i must admit -- i do avoid seaweed usually ((although not sushi, which may contain it) as it is extremely high in vitamin k). as for the ticking, only bothered me at the beginning, when it would wake me from a sound sleep. i got a small fish tank, with an air filter and put it by the bed. just so it didnt go to waste, i put in 5 goldfish. a year and a half later only one was still living (named him jude, after my st jude valve). i released him in a local pond on the 4th of july -- independence day, and dumped the tank. i rarely even hear the valve now, and when i do my mind just seems to filter it out. i swear i can tell how my INR is (a measure of coagulation) based upon the sound.]

Then again, who knows if the mechanical valve will last a lifetime since I'm still relatively young?

{they told me mine would last forever, which is a lot longer than i think the rest of me will last. at this point, i dont even have a cardiologist, as they told me i didnt need one anymore. may get another soon, just because other things can go wrong with a heart.]

As I said, seems there's no good choices. As one who generally hates going to doctors, the thing I'm having the most trouble with is the idea of becoming a lifelong 'patient'.

{yea, i can appreciate that. especially at 34. at 50, youll be used to it. i myself manage my meds and inr on my own. i must admit that i have been bad about doing inr testing regularly. i average every 2-3 months instead of every 1. got fired by 1 doc for that. just got a protime home tester this month as i expect to have to do some other med tests (50ish stuff, like coloscopy), which will require warfarin discontinuation, so the tester will come in handy.]


So far my decision is to go with what gives me the best chance for avoiding repeat surgery and with what my surgeon knows best (he's done lots of AVRs using mechanical valves), and just take whatever comes. I'm generally pretty optimistic about things, but as the date gets closer the nervousness starts creeping in.

{yea, i know what you mean. i have talked to a number of people about the surgery since having it. i have told them all - "its a piece of cake". i was only wrong once, and even she survived. still go golfing with her sometimes. dont know if your married, have a partner, have kids. my wife and i spent the weekend before surgery at a nice vacation spot. i always think back on it very fondly. and since she thought i was dying, we had lots of s**, (altho i know im not supposed to talk about that here). its scary, but the recovery is great. at first you wake up, have breakfast, take a nap, wake up, have lunch, take a nap, wake up, have dinner, and go to bed. it really does feel good, as long as you dont try to turn over in bed, and never, EVER sneeze right after surgery. after the first sneeze, when i thought my chest had exploded, at the slightest sign of a sniffle i would be blowing my nose. to this day, now, i just love letting go with a good sneeze, since i couldnt do it without pain for a few months.after just a couple of weeks you have more energy. i spent the days playing a great computer game -- ascendency, where i conquered the universe. it no time at all, about 6 weeks it was time to go back to work. luckily my employer told me to come back slowly, and i appreciated that, as the first week back was tough. now, on rainy, snowy days, i sometimes wish i was still in that recovery period. i look back upon it very fondly.]

I look forward to reading everyone's stories for advice and inspiration.

{would love to talk more if you wish. let me know when your surgery is scheduled for. "its a piece of cake" -- joe
Thanks for reading.

..........

 

[ALCapshaw2]

Welcome RMN,

There are a couple of third generation mechanical valves that have improved flow and turbulence characteristics which claim to require lower anti-coagulation levels. Ask your surgeon (or find one knowledgable in these valves).
Do a VR.com search under ON-X and St. Jude Regent or go to their websites for more information.

While the Bovine Pericardial (tissue) Valves have shown good longevity, approaching 20 years, that is typically in older patients. Younger patients seem to 'wear out' tissue valves more rapidly than patients in their late 50's or 60's.

As Burair mentioned, the ROSS Procedure is another option that favors younger patients. There is a website devoted to ROSS patients as well as a lot of previous discussion on this site. Just do a search for Ross Procedure.

Good luck with your search and decision.

'AL'

 

[tobagotwo]

Valve Choice Considerations for a 34-year-old

Valve Choice Considerations for a 34-year-old

Some thoughts...

While, as Al pointed out, xenografts sometimes do go quite long in younger patients, it is not common at all. And the newer xenografts don't have a meaningful record in your age group that would allow someone to say, "Oh, you'll get 20 years out of that, easy." The answer to that is, we just don't know. My personal guess is that the newest bovine valve will probably average 15+ years in 40-year-olds. But there is no science to back that up, just supposition.

If you were to go with a xenograft, you would have to have at least two more after this one. (Barring, of course, a jump in the technology - but that's a sucker's bet.) Or you could go with a xenograft now, and opt for a mechanical next time (yes, you can generally switch - in either direction - if you're being reoperated anyway).

If you go with a mechanical, and you have no other issues, you can reasonably expect about 30-35 years of service from one valve. While the valve should theoretically well outlast your lifetime, it doesn't seem to go that way yet, inthat some other issue with the heart seems to intervene by then. I'm not sure we have anyone who has quite made 30 years on a single valve of either type at this point, although some are close. Will the newer mechanical valves available now be able to remain implanted for 50 years in an actual human? The answer is (again) we do not know. So, you may or may not live reoperation-free even with mechanical/ACT, based on your age.

And if you have reason to believe you will require resurgery later for other reasons, such as expansion of the aortic root or the aorta itself, then you may want to consider things in light of that: you will not gain freedom from reoperation by going mechanical/ACT, but you must consider whether the tissue that holds the valve can withstand reoperations if you were to go tissue. Nothing here is easy: heart valves are an advanced course in "da__ed if you do, da__ed if you don't."

The Ross Procedure is another option. When it goes flawlessly, it offers the possibility of a lifetime without reoperations and without stroke/ACT risks. For children, it offers a valve that can continue to grow with them.

But even the RP is not always a permanent answer. If you have tissue syndrome issues that involve the aortic root or the aorta itself, and the root is not replaced initially, the valve, though native, may be rendered incompetent over time by deformation from expansion of the aortic root ? or you could need an operation to replace part of your aorta, even if the valve remains stable.

As well, in some percentage of Ross Procedures, stenosis develops in the homograft pulmonary valve, or even the autograft aortic valve, requiring surgical replacement. Although it is considered less serious surgery than AVR, pulmonary valve replacement certainly wouldn?t feel that way to someone who is undergoing it.

Living proof of long-term RP success? I don?t know that we have any successful, unreoperated, 30-year veterans of the RP, either. Still, it is an equally valid option to explore.

Some studies that highlight the Ross Procedure: http://www.shvd.org/file/Ross_2.htm
The Ross Registry (with charted data): http://www.rossregistry.com/fcMain.asp

You?re right. There are no really good options for younger people so far. But the options that you do have are much improved, even over the last few years. I hope that whatever you do decide serves you well for many years.

Best wishes,

 

[tobagotwo]

Bicuspid Info & Links

Bicuspid Info & Links

Very true about the possiblity of other aspects of bicuspid disorder going along with the valve. And that is why I brought up tissue syndrome issues in the discussion.

For balance, it should be noted that not all bicuspid valve owners have one of the associated tissue syndromes. Bicuspid valve owners make up about 2% of the population, but most bicuspid valve owners live their entire lives without ever having to do anything about it.

It has been estimated that about 1/3 of bicuspid valve owners wind up with serious complications, such as aortic valve disease requiring AVR. Perhaps 40% of those that do require AVR also end up displaying some form of problematic connective tissue symptoms to some degree, notably including aortic aneurisms or myxomatous (weakened) tissue.

If you have a bicuspid valve, the real difficulty is in determining which one of these people you are, and choosing your own course accordingly.

It is important to understand this issue as well as you can, as some cardiologists are not strong in the area of current valve information overall, and may be even less aware of potential BAV issues. You need to understand enough about the subject to make sure that he knows what he's talking about.

Some resources, including as mentioned by Rachel:

http://www.bicuspidfoundation.com/
http://www.csmc.edu/3866.html
http://www.csmc.edu/pf_5594.html
http://circ.ahajournals.org/cgi/content/full/106/8/900
http://www.medhelp.org/HealthTopics/Congenital_Heart.html (look alphabetically under "B")
http://atvb.ahajournals.org/cgi/content/full/23/2/351
http://circ.ahajournals.org/cgi/content/full/104/suppl_1/I-21 (regards Ross Procedures and BAV)

Best wishes,

 

[MomOfThree]

RMN, welcome to our little family. It's hard finding out that you have valve problems, but, it gets easier as you learn more and adjust. I had my aortic valve replaced just about a month ago. I'm 43.

I decided to go with the porcine valve, but, also gave mechanical a lot of consideration. Am I 100% sure that porcine was the "perfect choice"? Not really. Would I be just as happy with the mechanical? Probably. I don't think that there are any "wrong" decisions, it's whatever you think will work best for you. There are pros and cons to whichever way you go. But as you think about it, you'll end up with whatever choice is best for you.

Rachel and Bob, I read a little of the information that you shared on bicuspid valves (biscuspid aortic foundation). Do you have information on "unicuspid valves"? Is that considered part of the "bicuspid" area or is it a separate issue? I can't seem to find much information. Thanks for your help!!
Martha

 

[McCln]

Rmn

Rmn

There is nothing wrong in taking a better chance with a mechanical valve, despite taking coumadin. I was 36 when I had mine done. I feel better and really looking foreward to reaching 40 this next Saturday, the 29. You can do either the st. Judes valve or tissue. I did not relish the thought of another surgery withing a few years either. But, with the St. Judes valve, coumadin is a fact and part of the life. It will last unless there is an infection or defect to cause another surgery. Living with the St. Judes valve has it down side side, no kids with coumadin. But, no boyfriend, no kids. So, the choice was theneasier for me to make. Wish I could have kids, but the choice was made, and now older, worsens problems with a late age pregancy anyway. You have the ultimate right to chose what you can, the surgery will do the rest when they are in there. I wish you the best of luck in no matter what is finally decided. I will pray for you. Just hang in there and things will work out for you and the valve choice.

 

[tobagotwo]

Martha,

I would think a unicuspid valve would reasonably fall into the category of bicuspid, insofar as this is concerned. It's probably worth being educated. Hopefully, you'll fall into the main group who doesn't have to deal with the greater issues that some must face.

Best wishes,

 

[rmn]

Wow, thanks for all the great responses and information. I'm still leaning heavily towards the mechanical, but am going to schedule a call with my surgeon to discuss the various types of mechanical valves.

With respect to aortic aneurysms, both my cardiologist and surgeon were concerned about this and had me take a couple of CT scans (after discharge from the hospital, and then 6 mos later) to measure the diameter of the aortic root. They wanted to know whether there was any increase in diameter that would necessitate an earlier surgery and also to give them a better picture of what to expect at the time of surgery and whether any work needed to be done in that area. I was within normal measurements on both scans, but unfortunately other indicators and tests showed a need for surgery at this time.

Now it's just a matter of preparing for surgery. One thing I've found is that it seems like it's much harder on the families than the patient.

 

[d-mac]

Hello RMN

I am just reading your string now. I am a fellow bicuspid/aortic anuerysm patient. My surgery was on 9 November last year. All is well for me so far.

Everything in the string is excellent in terms of information. Especially the fact that Bicuspid aortic valve disease (BAVD) is not really widely recognized as such and a lot of professionals are not up on that. There is a bit of talk about research commencing - more and more the connective tissue disorder side of things is being talked about amongst more academic circles.

I was interested to see Rachel mention a Bicuspid forum - seems to be becoming a regular topic.

The percentages are interesting too. 1-2% of males have them. I have read somewhere (maybe Bicuspid AV foundation website???) that in turn you then have a 20-40% chance of passing it on to male children (early call - but my Dad has one and so did I - BIG odds to only be a conicidence!). Again, about 40% of bicuspids seem to develop anuerysms or dilatations of the aorta. Bugger of a thing to get. But anyway, we are all members of this club due to something or other not going right with our tickers....

Good luck with your discussions with your specialist/surgeon and your valve choice.

 

[tnboomer1013]

Hi There

Hi There

I guess another testimonial won't hurt. I was 44 when I had AVR, two bypasses and an aortic wrap done. I had a leaking bicuspid valve and only one artery going to the heart. My problems were birth defects that finally went out on me. I too had a struggle for what type of valve to use but in the end I went with the mechanical ticker. I just could not rationalize having another surgery 10 to 15 years later. But believe me the pills are really a pain. I get frequent nose bleeds I do bruse easily and becuase of the traveling I have to do because of the work I do getting my inr checked can be a real headache. But I guess it beats the alternative. Good luck with your choice and enevatable surgery.