The near future (non-mechanical)

[Andyrdj]

Folks, would appreciate some input from both doctors and people who have had surgery using newer techniques.

I'm 31, have a bicuspid Aortic Valve, have had an operation in the past where they weren't sure at the time whether to replace or widen the valve, they went with widending.

Am I glad they did - I've had 14 years out of this so far and predicted around 5 years until it will need to be replaced. A split bicuspid valve still doesn't perform as well as a fully functional one, but during all my 20s I was able to enjoy a medication free existence and let loose as much as the next man.

So, I'm left looking at the options for in 5 years time, and one thing I'm 100% sure of is that I'm not having a mechanical valve. No way . It's a very personal decision, but the complications of having to thin my blood
daily, rely on medication, and being careful (how I loathe that word!) mean it just isn't for me.

I know plenty of you live full lives with mechanical valves, and enjoy the odd drink or so, but I'm the sort who likes a good party, to go for it and enjoy an all nighter. Not every often, just now and then.

I'm also very clumsy by nature and tend to bump into things and/or cut myself extremely regularly, but that's ok because I'm very rugged and heal easily.

So here you have me - someone used to living life to the full, and for whom a careful existence would be maddening. To the point where I'm taking a "rescue me or bury me" attitude to future surgery.

My doctor is aware of my preference, and has been willing to talk over alternatives. I would like to know of anyone with experience or information to offer on these options.

These include:

- next generation porcine/bovine bioprosthesis: I've been fairly impressed with the 20 year follow up on the Hancock 2, and I believe there has been 8+ years very impressive follow up on the Mosaic from Medtronic. Might be optimistic, but might be reasonable to expect 15 years from one of these.

- Ross procedure. Potentially very long term unless there is calcification of the pulmonary replacement, which is a pig to re-operate! But I have seen trials done using tissue cultured replacement pulmonary valves which shouldn't have this problem - I believe that there is around 5 years follow up at present?

- Percutaneous valve replacement. Designed to sit over the existing valve, and potentially be replaced on multiple occasions. Early stages yet. Would like to know if anyone has considered how to remove traditionally implanted valves and replace them, all using the percutaneous method?

I'm the sort of person who would volunteer for something more risky in order to gain more. Sure, life is precious, but only if you personally feel it's living. I'm not gung ho about this, I do intend to research these ideas thoroughly. And I'm willing to undergo multiple further operations if I have to - "better a day as a lion than a lifetime as a lamb".

To the point where I would sign a "do not resuccitate" order if my doctor was in mid operation and found he had no option but to install a mechanical valve.

So anyone with information of the above methods, or information on how I might enrol myself in trials for something new and promising I haven't thought oif, please let me know.

I should stress that I am not trying to put others off having a mechanical valve - I know some people are ok with it. As I said, it's a very personal thing - either offer me a life I'm willing to lead, or offer me nothing at all.

 

[Lynlw]

I understand

I understand

how you feel, I don't have heart problems, but my 17 year old son does there were a few reasons, why his cardiologists (4 centers) and surgeons thought tissue (bovine) was the way to go for Justin, the main one being he has a conduit that the valve is in will need replaced anyway, but our concerns, were not even the actually side effects SOME have w/ coumaden or doing risky things. but there other aspects, like taking the meds everyday (he's had 4 OHS and is on no meds now) getting bloodwork done, and one of his friends really hates the ticking and Justin htought that might drive him nuts. I read what someone wrote once that kind of summed it up for us, w/ coumaden, it is just a daily thing of always feeling like a patient, where as w/ his bovine, he just has his 6 month/yearly check up and really doesn't have to think of his heart for the most part. he rather have surgery again in 10-15 years then deal w/ it on a daily basis, and honestly as mom, and him going off to college, I won't have to stress as much w/ he taking the meds, getting the tests, or even picking up his perscription. he also loves the outdoors and camping in the middle of nowhere or sailing for a few days w/ scouts.
Justin had a pacemaker for about 6 years and even tho he only had to think of it for the monthly phone checks and protect the area, he hated it. I didn't even realize how much he hated it, until it broke last year and he didn't need a new one when they took it out. I think alot of the issue fo Justin really have to do w/ just making him feel "different" than his friends.
IF I were you since you are talking about 5 years from now, I would contact Boston Childrens' hospital and find out about the conduits and Valves, Dr Mayer is growing from the kids own cells. so far the program is going well and they (the 4 centers we have talked to)really think it will be pretty routine in 5 years. but there are using them now on some kids.
I know some people don't like to plan on what ifs, but I know a few centers are already doing valve replacement by caths now too.that probably will never be an option for Justin, since he will need a conduit also Lyn www.caringbridge.org/nj/justinw

 

[Andyrdj]

Thanks

Thanks

Thank you so much, you've summed it all up in a few words - I do not want to have to behave like a patient 24/7..

I already have problems with my hearing (this one's self inflicted-tinnitus from too much loud music) and I have to plan if going to a nightclub to make sure I take my music safe earplugs with me.

But if I mess up with that, I suffer a ringing in my ears for a few days. Mess up the Coudamin, and it's much more serious.

Thanks for the Boston Children's link - I'll get in contact. I'm based in England, but my local hospital (sheffield) is very much a heart specialist centre. Hopefully they'll be interested in something new. Otherwise, could always try saving up the cash and paying someone in the States - what price health, after all?

 

[Randy & Robyn]

To each their own.

I am looking at a surgery in January and will likely be receiving a homograft due to a very stubborn form of endocarditis. I wish I had the option of a nice durable mechanical and taking a pill a day rather than have to live my life facing another surgery in ten or fifteen years, maybe even less time than that.

Randy

 

[rbl1999]

Hi, Andy, I am older than you (59), and had aorta valve replacement in July, I went with the carpentier edwards bovine valve, so far so good!!!! I was at the age where it was a tough call, but I also did not want to deal with coumadin , so it was a pretty easy decision for me, and the info that I have received is very positive for this valve lasting about 20 years. I am fortunate in that I only take 81 mg of aspirin daily, no other meds. This is a good place for you to get info.. All the best Rose

 

[Andyrdj]

Sorry to hear that...

Sorry to hear that...

To Randy..
..oddly enough, I'll be signing up by choice to have the same or similar to what you're forced into by circumstance. Hopefully you'll enjoy the benefits of the homograft, as well as the downside.

I've been through it before, it's a pain in the arse but bearable. Is this your first op?

It's not too bad, just remember a couple of tips

(1) Get them to give you painkillers before removing the urinary catheter and then make them be slow and gentle.

(2) If they offer you something to drink to get you "regular" in the form of syrupy sweet oil, don't drink it - it'll put you off your food. Opt for 15 minutes of suppository instead!

There may be a silver lining to this. If in another 10 years or so there's a reliable tissue cultured valve that's got every chance of lasting a lifetime, would you keep the mechanical one just to avoid another operation?

If like me, you'd go for the tissue valve, then you've spared yourself years of being careful, acting like a patient, potential internal bleeding and the infernal clicking.

I hope it goes well for you anyway.

 

[Curtsmum]

Hi Andy, just wanted to wish you luck, i'm glad that you are able to make a choice to suit you, we don't have a choice and when the time comes, my 8 year old son will be having a mechanical mitral valve, i can relate to your fears, best of luck hope you find what your looking for Paula x

 

[Randy & Robyn]

To Randy..
..oddly enough, I'll be signing up by choice to have the same or similar to what you're forced into by circumstance. Hopefully you'll enjoy the benefits of the homograft, as well as the downside.

I've been through it before, it's a pain in the arse but bearable. Is this your first op?

It's not too bad, just remember a couple of tips

(1) Get them to give you painkillers before removing the urinary catheter and then make them be slow and gentle.

(2) If they offer you something to drink to get you "regular" in the form of syrupy sweet oil, don't drink it - it'll put you off your food. Opt for 15 minutes of suppository instead!

There may be a silver lining to this. If in another 10 years or so there's a reliable tissue cultured valve that's got every chance of lasting a lifetime, would you keep the mechanical one just to avoid another operation?

If like me, you'd go for the tissue valve, then you've spared yourself years of being careful, acting like a patient, potential internal bleeding and the infernal clicking.

I hope it goes well for you anyway.

Second op for me too, Andy. Been there, done that. Just two months ago, actually. Tried for an aortic valve repair. Contracted endocarditis and am back to square one with a severely leaky valve.

I assume you had a smooth, uneventful recovery from your first surgery. So did I. My strongest aversions to surgery are: 1. Thinking of all the potentially disastrous things that can happen to you; and 2. The total lack of control you feel when you hand your life over to a bunch of strangers.

To be honest, the catheter wasn't nearly as bad as when they removed the chest tubes for me.

You mention a point that would make for a very interesting poll to start. How many mechanical valvers would risk another op if there was a new "foolproof" valve that needed no anticoagulation, did not click and would last a lifetime. Purely hypothetical, of course, because I doubt they will ever quite reach that mark. I would hazard a guess that most would keep their mechanical.

Randy

 

[Ross]

I understand that you want the tissue, so I won't push it, but I'm wondering what sort of horror stories you've been told about Coumadin? I don't want to mislead you, but I've done pretty much everything your saying that you'd have to avoid while on Coumadin. Moo will testify to being able to put alcohol away by the gallons. We think he's nuts, but that's his choice.

I'm asking only because this is what we hear from everyone. It's like a broken record being played over and over again. Don't hit me, I'm just wondering what you've been told besides the obvious scare tactics and to say that most of what you've heard is probably untrue about Coumadin.

 

[RCB]

You beat me to it Ross

You beat me to it Ross

I understand that you want the tissue, so I won't push it, but I'm wondering what sort of horror stories you've been told about Coumadin? I don't want to mislead you, but I've done pretty much everything your saying that you'd have to avoid while on Coumadin. Moo will testify to being able to put alcohol away by the gallons. We think he's nuts, but that's his choice.

I'm asking only because this is what we hear from everyone. It's like a broken record being played over and over again. Don't hit me, I'm just wondering what you've been told besides the obvious scare tactics and to say that most of what you've heard is probably untrue about Coumadin.

I doubt Andyrdj would listen to our knowledge- he seems to have it all
figured out. Good luck pal!

 

[Mike C]

I can see choosing tissue over mechanical but choosing death over mechanical, you may want to reconsider that one.

 

[Gemma]

You mention a point that would make for a very interesting poll to start. How many mechanical valvers would risk another op if there was a new "foolproof" valve that needed no anticoagulation, did not click and would last a lifetime. Purely hypothetical, of course, because I doubt they will ever quite reach that mark. I would hazard a guess that most would keep their mechanical.

Randy

Randy, I can answer on Jim's behalf - you're right, he'd keep the mechanical. Having to get his INR level checked regularly is a minor annoyance, as is the ticking and the remembering to take his warfarin every day (easily solved by my buying him a weekly pill box) but compare that to the idea of another open heart surgery - no way he'd do it - unless maybe they threw in £1 million and a guarantee of no pain or complications post-op!

Andy - I've got to say I think your opinion of warfarin is a little off to say the least. My boyfriend Jim's 28 now and like you has his fair share of bumps and scrapes, rides motorbikes, walks up mountains occasionally, mountain bikes like a complete nutcase and works as a precision engineer. I don't think "careful" is really in his vocabulary! Also bear in mind that it isn't uncommon for people to need warfarin after valve replacement even with a tissue valve, as the heart sometimes develops arrhythmias which necessitate anticoagulation.

From the three options you listed, I'd look further into the Ross as it's the one which, if it's successful, has the greatest potential to last the longest. No doubt your cardiologist should be able to tell you who the best surgeons in the UK are for the Ross. Tissue valve longevity studies are often conducted on an older cohort of patients, and the percutaneous thing is often only used on patients who are too ill to have open heart surgery (in other words, it buys them a few more years where they'd otherwise have died sooner). The Ross has several happy customers on the site here. Hopefully they'll come along.

 

[Gemma]

I can see choosing tissue over mechanical but choosing death over mechanical, you may want to reconsider that one.

Yep, absolutely. Death over life as a vegetable I can understand, but death over taking a pill every day and ticking quietly as you go about your normal daily life???

 

[PapaHappyStar]

Pulmonary homograft replacement after the Ross is not as bad as an aortic valve re-replacement from what I understand, irregularities in pulmonary circulation are not as critical. Pulmonary valves are being replaced percutaneously now sometimes even when regular valve replacement is not contra-indicated.

I agree with Mike C though...

 

[Curtsmum]

One thing in your post that was upsetting
<<To the point where I would sign a "do not resuccitate" order if my doctor was in mid operation and found he had no option but to install a mechanical valve.>>
I'm hoping that was just put in while you were in the fervor of writing your post. Life is worth living and this site is full of people who have an appreciation for life and will fight for it.

I missed that bit first time reading, when i get upset over my son needing a mechanical valve i always think THIS LIFE OR NO LIFE, i know which one i would choose, you must think about your family, i'm sure they would rather see you still alive whatever the out come, like others have said they are all leading great lives.

 

[Ross]

To the point where I would sign a "do not resuccitate" order if my doctor was in mid operation and found he had no option but to install a mechanical valve.

This is exactly why I want to know what crock of bull they fed him about Coumadin. It also shows lack of interest in knowing the truths and being educated about them.

 

[Mary]

Ok everybody.
Looks like Andy has his own ideas about his life and health and he has asked for specific advice about options he has spelled out.
The thread is veering rapidly away from his questions.
Andy categorically stated he doesn't want a mechanical valve, so why is the anticoagulation issue being raised here?
I hate to have a controversy this close to Christmas.

 

[Ross]

Because there appears to be a total lack of undertanding being suggested to him about anticoagulation. We're simply trying to educate the man, not get into a tuft about it. Yes we can drop it, but I would really love to know what hes' been told because I'll bet anything it is total b.s., plus for the other new people walking in and reading, his quote sends a powerful message and to those that don't know any better, well...........

 

[Curtsmum]

Ok everybody.
Looks like Andy has his own ideas about his life and health and he has asked for specific advice about options he has spelled out.
The thread is veering rapidly away from his questions.
Andy categorically stated he doesn't want a mechanical valve, so why is the anticoagulation issue being raised here?
I hate to have a controversy this close to Christmas.

Since coming on here i have found that lots of valvers, have been so gratefull for having a second chance at life, i would rather my son didn't need a mechanicl valve and hey even after all the success storys on here i'am still scared s**tless. I dont dissagree with Andy's wishes but do find it hard to listen to a young man choose death before having a mechanical valve and as i wished him good luck before i'am glad that he as the option of choosing maybe a tissue valve first, i really hope everything works out and if he feels that strongly, that he will never need a mechanical valve. Paula x

 

[Dennis S]

Really?

Really?

To the point where I would sign a "do not resuccitate" order if my doctor was in mid operation and found he had no option but to install a mechanical valve.

I have a friend confined to a wheelchair. Over a period of years he got a pretty thick skin from hearing callous remarks from people quick to say they would rather be dead than live in his chair. It still bothers me more than him. Here I sit with my mechanical heart valve. Now he and I have something else in common.

I don't want to put you off. You may have the chance to learn something about how precious life really is. I hope you will take the opportumity to read how many people here fight for life, and keep getting up off the floor to fight again. Some are old, some are children. I think they are all brave and wise.