Newbie and just wanted to introduce myself

[BuddyLove]

Hi all. My name is Buddy and I stumbled upon this site a few weeks ago after discovering I have a biscupid aortic valve. I'm 53 years old and didn't know I had this until about a month ago. I had been experiencing the effects of it for the past several months but wrote it off to smoking (yes stupid habit I know). I had also been told on a couple of occasions over the years I had a heart murmur but apparently no one thought it serious enough to pursue. I guess the straw that broke the camel's back was when I was pulling my trash can to the street and had to stop half-way there because of the pain and shortness of breath got so bad. My wife has been seeing a cardiologist due to cardiomyopathy, so I gave them a call. They wanted me in their office the next day after telling them my symptoms, which was October 23.

So I went the next day (Friday). The doc had his tech do an echocardiogram before I left that day. I got the call the following Monday from his nurse who told me I had narrowing of the aortic valve. The following Thursday AM I did the stress plus echo test in their office. After the test the doc sat me down and told me I had aortic stenosis and that he wanted me to have a cardiac catheterization as soon as possible. That happened the following Tuesday. Good news was there were no blockages (YAY!) and my heart is very strong. But the valve has to be replaced. His nurse would take care of scheduling an appointment with the surgeon.

Next day the appointment was scheduled, and I went to meet with the surgeon on November 12. He basically told me if I didn't have the valve replaced I have about year, possibly two, left. That hit me like a brick wall, as well as my wife who was sitting there at the time. So, my surgery is scheduled for this coming Monday November 30. I'll have to be completely honest and say I am scared to death, however the alternative doesn't leave much choice. The speed at which all of this has happened has left my head spinning.

I've did quite a bit of reading here the past few weeks and have learned so much from you guys! It's been a blessing to find this site. I know the surgery and recovery won't be a piece of cake, but I will get through it. The valve I chose was the Edwards Magna Ease tissue valve over a mechanical one (On-X). The whole thought of blood thinners the rest of my life freaks me out. I know this valve will need to be replaced at some point in the not so distant future, but the surgeon said that the replacement could be done via TAVR.

Thanks for letting me post and to all a Happy Thanksgiving, with many more to come. And thanks too for the information on this site. It has helped to answer a lot of questions in my mind.

 

[pellicle]

Hey Buddy

welcome aboard.

Just wanted to add that you should really consider the (gosh I hate that term) Blood Thinners issue carefully. They may indeed not be what you scareMonster them up to being. Who knows, you may end up being on more and more diabolical medications as a result of other issues. If you have no other health issues (not diabetic for instance) then you may find that warfarin and anticoagulation therapy isn't as boogey man as you imagine.

This site has plenty of "Well it just wasn't the problem I expected" from those who were worried about it. People who aren't on it regularly go on about "food and diet" being a problem yet those who are here and on warfarin all seem to say "its not a problem". Strangely enough the personal experiences for all of us on Anti Coagulation (warfarin) suggest that reality is not like conjecture - yet the uninitiated simply won't believe us.

We are all told when choosing to "make an informed decision" ... yet it seems that few people really inform themselves so much as pick exactly what information they wish to believe to support the decision they wish to make.


Best Wishes.

 

[MrsBray]

I have a mechanical valve (I'm 44 now). Yes, I can hear it ticking - it's a part of life, undeniable. Yes, I'm on anti-coagulant therapy (warfarin). It's just another pill. I haven't changed my lifestyle, I haven't changed my diet (no more brussels sprouts and spinach for breakfast? DARN!). I have an On-X valve, made of carbonfiber. Earlier this year, the FDA approved a diminished level of anti-coagulation for my valve. Matter of fact, in Europe I think several patients are using only aspirin (don't quote me, I'm not a doctor, do your own research!)

Fact is, I was more scared of definitely having future surgeries (TAVR is not guaranteed yet for healthy patients!) than of taking a pill for the rest of my life.

Whichever you choose, your lifestyle will change. Your fingers and toes will be warm. You'll get through a whole day of work with a commute both ways without needing a nap. You'll be able to handle a hike on the mountains. Ride roller coasters without blacking out at the bottom of the first hill. Really see the beauty of the world around you.

What other questions?
Meredith

 

[BuddyLove]

Hi Pellicle, thanks for the reply. I think one of the biggest issues with blood thinners is the testing every x weeks and taking it everyday for the rest of my life. And yes I have read where other people have not found it to be an issue, however either one is a major decision - mechanical vs tissue valve. Surgeon also said it is a possibility he may have to use a mechanical valve once he gets in there, although not likely. Yes I'm healthy other than the valve. No diabetes or other issues.

Hi MrsBray. Thanks for your reply also. I believe I did read something about the On-X in other countries using less warfarin or aspirin instead. And I do look forward to lifestyle changing! That's exciting in itself. My toes and fingers freeze in cold weather. Didn't use to be so bad 10 years ago, but I have noticed that it gets worse and never really connected that with anything other than "getting older" until recently. I'll have to pass on the roller coasters though

 

[almost_hectic]

Fact is, I was more scared of definitely having future surgeries (TAVR is not guaranteed yet for healthy patients!) than of taking a pill for the rest of my life.

Whichever you choose, your lifestyle will change

One and done for me! I'll take a couple of pills every day over going through another surgery any time, no question. Different strokes I guess.

So I can't decide if it's really a tick, tick, tick.... Or a click, click, click sound?

 

[pellicle]

Hey Buddy

Hi Pellicle, thanks for the reply. I think one of the biggest issues with blood thinners is the testing every x weeks and taking it everyday for the rest of my life. And yes I have read where other people have not found it to be an issue, however either one is a major decision - mechanical vs tissue valve. Surgeon also said it is a possibility he may have to use a mechanical valve once he gets in there, although not likely. Yes I'm healthy other than the valve. No diabetes or other issues.

firstly I just want to say that I am replying in a disussive manner, not to try to sway you. I believe I can say I have experience in the "repent at leisure" phrase.

the testing is made much easier by home testing, which (if you didn't know) takes about 5 min and you're done. Its actually more accurate than labs would have you believe (and its no coincidence that they will lose money if you home test).

For me I was initially a bit "down" about the idea of needing to take medication for the rest of my life and that itself (no matter what it was) was some sort of indicator of 'aging' which I somehow didn't like. I didn't even know about testing at the time. I found testing at a lab was annoying, but when I got a coaguchek it really turned it around from a "passive drag" to me feeling that I'm making active steps to monitor my health. I'd already been taking my heart rate and BP as part of my personal fitness training, so somehow this just "keyed in" to that mentality.

So for me its helped me to have one more point of focus on more actively living healthy, something which I hope will mean that from 50 to 70 will stand me in good stead.

Lastly with a mechanical valve I now feel more "out" of the waiting room than I did with my previous tissue (homograft) prosthetic where I knew always that it would need to be replaced eventually: only when was the question. Now with a mechanical I feel better and relieved because I know it will not be a certain future of another valve replacement.

Of course we all have different priorities, I only hope that by sharing this it gives you some other slants to view this from and assists you in considering all the angles.

Best Wishes

 

[harrietW]

Wow that all happening so quickly .. welcome Buddy ! Yes this site is kind of a life line. Well it curtainly is for me.
I will follow your posts best of luck to you and will be watching for updates !

 

[BuddyLove]

firstly I just want to say that I am replying in a disussive manner, not to try to sway you. I believe I can say I have experience in the "repent at leisure" phrase.

the testing is made much easier by home testing, which (if you didn't know) takes about 5 min and you're done. Its actually more accurate than labs would have you believe (and its no coincidence that they will lose money if you home test).

For me I was initially a bit "down" about the idea of needing to take medication for the rest of my life and that itself (no matter what it was) was some sort of indicator of 'aging' which I somehow didn't like. I didn't even know about testing at the time. I found testing at a lab was annoying, but when I got a coaguchek it really turned it around from a "passive drag" to me feeling that I'm making active steps to monitor my health. I'd already been taking my heart rate and BP as part of my personal fitness training, so somehow this just "keyed in" to that mentality.

So for me its helped me to have one more point of focus on more actively living healthy, something which I hope will mean that from 50 to 70 will stand me in good stead.

Lastly with a mechanical valve I now feel more "out" of the waiting room than I did with my previous tissue (homograft) prosthetic where I knew always that it would need to be replaced eventually: only when was the question. Now with a mechanical I feel better and relieved because I know it will not be a certain future of another valve replacement.

Of course we all have different priorities, I only hope that by sharing this it gives you some other slants to view this from and assists you in considering all the angles.

Best Wishes

Understood Pellicle and I appreciate your input. It's what I'm here for after all!

But to be sure, you had a prosthetic valve then replaced with a mechanical one? How were the procedures, i.e. the conventional method of "opening you up" or another method? Just curious on that. Also, I wasn't aware of the 'home testing' either. I will admit that the ONLY reason I initially chose to not go the mechanical route was because of the anticoagulant involved. You've definitely given me something to ponder over the next couple of days.

 

[BuddyLove]

Wow that all happening so quickly .. welcome Buddy ! Yes this site is kind of a life line. Well it curtainly is for me.
I will follow your posts best of luck to you and will be watching for updates !

Thanks Harriet for the kind words. Lifeline is a good word for this site indeed!

 

[AZ Don]

I went from my first diagnosis to surgery in under 2 months. It certainly is a lot to take in. Though my wait was rather short I actually think that the waiting is the worst part. It's good to get the surgery over with and get on with life. Good Luck and welcome to the forum.

 

[pellicle]

Hi

But to be sure, you had a prosthetic valve then replaced with a mechanical one?

I had 3 OHS's over time (about every 20 years it has turned out). First as a kid to "repair" the bicuspid valve, second which was a homograft (meaning from another human, and it was a cryopreserved one) and finally the mechanical.

How were the procedures, i.e. the conventional method of "opening you up" or another method?

all 'conventional' sternotomy ... I actually don't mind any questions because my earliest operations were done by the public health in Australia (at no cost to me or my family) So I feel some sort of gratitude for that. Every Dr I go to has always asked questions, often they want to listen to my chest (even if I went there for my foot).

Also, I wasn't aware of the 'home testing' either. I will admit that the ONLY reason I initially chose to not go the mechanical route was because of the anticoagulant involved. You've definitely given me something to ponder over the next couple of days.

well then I'm glad I spoke ..

depending on where you live on the planet (I live mostly in Australia, sometimes in Finland) home testing (and indeed the extension is full self testing and regulation, which is what I do) gives great convenience and confidence. I just couldn't be comfortable with a weekly or bi-weekly vein draw (for a start I only have one elbow that works now after some of the procedures which were pre-cursors to the modern angiogram).

As much as this may seem odd, I always struggle with suggesting mechanical to people (even though I wish I'd been able to avoid my third operation) because I see so many posts here from people with levels of angst and paranoia about valve sounds and ticking.

When I had this surgery (my 3rd) the surgeon was quite honest to me about the risks for me of (what would be a 3rd) redo surgery. He offered tissue if I wished to chose it. I was initally a bit apprehensive about warfarin (being totally clueless except for harbouring some idea of it being a dark thing), but I picked Mech because I just could not bear to put my wife through this again and I wanted to be strong and healthy for her as a good husband and not as a cripple.

Being totally frank if I had had the opportunity to have a mechanical back when I was 28, with todays simple home testing (even phone software to help) I'd have taken a mechanical in a blink ... if I actually understood it as I understand it after some years of learning about it. You know, one of those "if you could time travel and talk to yourself" sorts of things.

I hope that Dick eventually posts, but you can search him out as a user and read his bio, he's been on AC therapy for over 40 years with no issues (well there was that once).

http://www.valvereplacement.org/foru...dick0236/about

Perhaps its too early for you to read and grok, but you can pop over to my blog and have a read of my post on "AC Therapy". I often make the point that once upon a time diabetics needed to get blood draws done at a lab and the management of insulin was very patchy. Now they test multiple times during the day with ease and simplicity. For us on Warfarin its so much easier, we test once a week and the dose accuracy of our warfarin therapy is much more lenient and tolerant of failure.

Anyway no matter what you pick its a good, remember that you are the one who has to live with it.

PS: lastly I'll say that for me being aware and in possession of knowledge is crucial to me being comfortable and feeling confident. If I'm in the dark and not in control of things in any way it is a recipe for feeling anxious. I like that I can manage my INR myself, and understand that process. I also like that being on a mechanical valve gives me a strong chance of never needing a reoperation. If I had a tissue valve (I was 48 at implant) then it would be a certainty that I'd need another operation eventually (well unless I died before that). It would also mean that for the last few years of that valves life it would be reducing in its capacity and reducing my fitness. I've already had to fight my health and fitness back twice. I didn't look forward to doing that at 70.

Best Wishes

 

[Paleowoman]

Welcome to the forum Buddy ! That sounds awful finding that you have to have surgery all in a short while. I knew I had a bicispid aortic valve back when I was 25 but I never had any symptoms, not even just before surgery which was when I was 60. Lots of echocardiograms in the seven years prior to surgery though so I knew roughly when I would have the valve replaced so I had plenty of time to think and research about it. I chose a tissue valve as I didn't want to be on warfarin and I didn't want the ticking noise. I know those are not problems for some people but I wasn't taking a chance, especially on the ticking. I got an Edwards Magna Ease valve. I know I'll need a "re-do" one day but I prefer that to constant ticking and warfarin ! The surgeon and cardiologist didn't have a problem with me wanting tissue.

All the very best for Monday for a smooth and speedy recovery. Keep us posted !

 

[honeybunny]

Welcome, Buddy. Glad you found the site and the support it offers. My experience is similar to yours; SoB that I thought could be due to smoking for 44 years, but went to a cardio because my brother had a heart attack months before and two stents inserted. Thought I might need the same. Was stunned to learn May 29th that I had a BAV that after a TEE was determined to have severe stenosis. Like you, I was told it needed a o be done in a year or so and I had surgery 9 weeks ago along with a bypass. I went with tissue and though I don't believe a future surgery could be done by TAVR by the time me I'm ready for it, I was most concerned about the ticking of mechanical. I reach d out to Paleogirl and felt better about my decision after communicating with her. It's a personal, life-changing decision and I would agree that we latch onto the data that supports the one we have intuitively made.

Keep us posted

 

[MrsBray]

For what it's worth, I go to my cardiologists office about every 5 weeks for a finger-stick test. Cash price is about $30, with insurance before deductible is $17, after deductible is $3.50. I get instant feedback from the machine and the nurse. I could have it done for free at my general doctor's office, and it would be a full blood draw with results in a day or two, no contact with a nurse.

 

[Superman]

BuddyLove, welcome aboard. I'm one of the few on here who has been ticking away and on anti-coagulation therapy (blood thinners, warfarin, Coumadin, etc...) for longer than I wasn't. I was born in the waiting room and made it almost to my 18th birthday before first getting a St. Jude mechanical valve. I've been on warfarin for just over 25 years. I've only had home testing as an option that past three or so. Before that, I had to go to the lab regularly (which I wasn't very good about in my younger years).

I wasn't given the option of a tissue valve, and doubt I would have taken it if I was. However, you should know that mechanical is not a guarantee of no future re-op. I had my second OHS six years ago due to an aortic aneurysm. The mechanical valve was doing just fine, but as long as they were digging around - they went ahead and freshened it up for sizing as much as anything (went from 23 mm to 25 mm). I also wanted a 1 piece valve/graft conduit rather than stitching my fake aorta to my fake valve. It was too many stitching's to worry about in my mind otherwise. I stuck with mechanical (I was only 36 at that time).

What I can say for certain is that the 2nd OHS was harder than the 1st, and I suspect it doesn't get any easier for subsequent.

The only times I can think of when warfarin was an issue had to do with subsequent invasive medical procedures. Many in the medical profession are afraid of it, and don't seem to know how to properly bridge. When I had my gallbladder out, there was a lot of discussion on how to plan around it. One Doctor was insistent on using donated plasma after surgery to aid in clotting and acted like I was being ridiculous. I refused, and we had a stalemate pretty much until a half hour before surgery when it was too late to give my spot to somebody else. I signed a waiver and called it good. I'll take donated blood if it's a dire emergency - but try to avoid it otherwise. They only can test for blood-born illnesses that they know about. I'd rather not be the patient that they discover a new one with.

We can only give you our personal experience (well, except pellicle, who can inundate you with dozens of peer reviewed studies - because he's awesome like that), but ultimately the choice is yours. Some participants here have reacted very negatively to the ticking, and some had a very difficult time regulating their INR. The only certainty is that either option is better than what you have now. Good luck with your decision and surgery.

 

[LondonAndy]

Hi Buddy and welcome. I too had very little time between diagnosis and AVR surgery last year, at age 49. In fact I ended up as an emergency admission when I had what I thought was a heart attack but it turned out to be a "cardiac event" (!) which didn't damage my heart but certainly speeded up treatment here in the UK! As a result, if I am honest I have done most of my research AFTER surgery. Yes, not the best method I accept, but I was guided through my options by a highly experienced surgeon and all my research since has confirmed those decisions.

I went for a mechanical valve, despite the anti-coagulant issues and ticking valve, something which was a concern (I don't have ticking clocks or watches in my house because they annoy me) but which has proved to be hardly noticeable and when I do notice it, I find it strangely reassuring. When I sleep with a partner they do not notice the ticking, though oddly a hospital technician doing an ECG did! The priority for me was avoiding the definite need for future surgery with a tissue valve, which of course would be at a more frail age. I accept TAVR may reduce that risk if that option is viable, though I am not convinced. I have also read with interest the risks of infection during re-surgery, which Pellicle has posted, not least here. I am fairly new to the forum, but find his posts well researched and of course he has extensive surgical experience! I have agreed with every posting I have read.

Re anticoagulation: I self-manage using a home meter weekly, emailing results to an anti-coagulation clinic to monitor and advise when needed, and six-monthly clinic visits to check my meter readings match theirs. From finger prick to sending the result is under 5 minutes. Here in England self-testing is now the recommended way for certain categories of patient to manage their condition, with greatly reduced risk of thrombosis etc. And of course it is still possible that you will need anti-coagulation with a tissue valve. My mother has a tissue valve and is on Warfarin/Coumadin long term.

I am also told that there is a risk of damaging the electrics of the heart with AVR, since the area around the aortic valve is where they particularly are. This happened to me, and so I also have a pacemaker, but have had no issues with that at all.

I am sure you will make the right decision for you, and you will soon be posting your post-surgical experiences. Best wishes

 

[pellicle]

To Buddy

Superman makes good points. In particular a mechanical is NOT a certainty that you will not need an operation. Aneurysm was also part of the picture with my reop. Discuss aneurysm with your surgeon as a strong priority. If you are suspected or have dilation already then it is possible another surgery may be needed anyway. On the subject of valve type I like to phrase it as: With a tissue prosthetic you will need another surgery if you live long enough, its deteroriation is beyond your control. With mechanical you have a good chance you will never need a replacement surgery and its management is almost entirely your control (pannus is an issue but my surgeon feels that 1) pannus growth is exacerbated by poor AC therapy and 2) most modern mech valves have anti-pannus designs.)

His other point about management of procedures (and medical fools) is quite important. Yes surgery can be well managed when on AC therapy. I've had two quite invasive debridement surgeries while on AC therapy. You need to be informed (yes, we're here to assist with that) and you may need to be assertive to your Dr about how to manage it. Be infromed and be strong willed ... don't just be "patient".

We can only give you our personal experience (well, except pellicle, who can inundate you with dozens of peer reviewed studies - because he's awesome like that),

oops ... guilty as charged, I do feel guilty sometimes but there is a mixture of feelings about that in both positive an negative. So I'm sorry for those who find it annoying. I pick peer reviewed stuff as it is more likely to be reliable than "some website" or Fox News Health.

I do also post my experiences and I do try to help.

 

[MethodAir]

Mechanical. On-X is a high performance valve. I like to be hands on with my own care, switched over to a Coaguchek. The warfarin is a non-issue.

If there is any chance of an ascending aortic aneurysm, consider a mechanical aortic prosthesis like this one http://www.onxlti.com/product-divisions/heart-valve-products/ascending-aortic-prosthesis/ . The surgeon said the valve is better seated this way (made sense to me).

 

[BuddyLove]

You guys are a wealth of information, and to each I thank you for your input. It is highly valuable to me. My surgery is tomorrow morning at 7:30 EST. Yes I'm a nervous wreck but I know that's a normal feeling. I will have the chance beforehand to talk with my surgeon and will be discussing the On-X more (yes I'm tending to lean that direction now with the info provided here and additional research). So we'll see. I'll post once I'm home and up for it. Again, THANK YOU to each of you!

Buddy

 

[almost_hectic]

You guys are a wealth of information, and to each I thank you for your input. It is highly valuable to me. My surgery is tomorrow morning at 7:30 EST. Yes I'm a nervous wreck but I know that's a normal feeling. I will have the chance beforehand to talk with my surgeon and will be discussing the On-X more (yes I'm tending to lean that direction now with the info provided here and additional research). So we'll see. I'll post once I'm home and up for it. Again, THANK YOU to each of you!

Buddy

Stay strong Buddy, being nervous is normal. But try not to worry too much, it's out of your control so just trust your surgeon. Best wishes for a smooth surgery and strong recovery!