Newbie Freaking Out in S. Louisiana

[OldmrWilson]

Hello Everyone. I found this place yesterday. My name is Wilson and got my first Cath Wednesday. I have 2 arteries 90% blocked and a bad aortic valve. Valve size has decreased down to .5 cm squared. They've closely watched it for years. It really started shrinking to 1cm in 2014. Oddly, I have no symptoms other than being tired after activity. Next week I need to schedule an appt. with a surgeon. Oh Lord am I freaked! I am a white male 63 years old. Have had High Blood Pressure for probably 25 years or so.
I am 5'8" and some change and weigh 162-165 on most days and am in reasonably good health. I went into A-Fib last December and it scared the hell out of me.
They put me on blood thinners at the ER and after seeing my Cardio Dr., he took me off and on 2 baby asprin a day in addition to the beta blocker I've been taking for about 25 years. BP and pulse have been fairly normal since.
I have so many questions racing thru my head but the one that really stands out is which valve? At first I thought about a mech. valve but after thinking more and reading, I've decided that I do NOT want to be tied to blood thinners and having to go to the hospital every month to get blood work. I like the way bovine is described but I see that improved pig valves have a fairly good longevity as well. AND.............how much does all this generally (in the ballpark) cost???
Also, I am a widower and will have "some" help at home but worried about recovery time. In fact I'm worried and jittery about everything! Ha!
Thank you all for any and all replies and for having a place like this to come to. Sincerely, Wilson

 

[pellicle]

Hi Mr Wilson and welcome

...Oh Lord am I freaked! I am a white male 63 years old. Have had High Blood Pressure for probably 25 years or so. I am 5'8" and some change and weigh 162-165 on most days and am in reasonably good health. I went into A-Fib last December and it scared the hell out of me.

I wish I could flip a switch or something to help you deal with the being freaked, but perhaps its all part of whats needed anyway ... the human mind indeed works in weird ways.

But its all good and as you'll find here many of us have even been through this a few times ... so I'm pretty confident you'll be fine.

They put me on blood thinners at the ER and after seeing my Cardio Dr., he took me off and on 2 baby asprin a day in addition to the beta blocker I've been taking for about 25 years. BP and pulse have been fairly normal since.

that's actually pretty wise as you don't want to get a stroke while awaiting surgery ... which from what you've described of your condition is a possibility. So points there.

I have so many questions racing thru my head but the one that really stands out is which valve? At first I thought about a mech. valve but after thinking more and reading, I've decided that I do NOT want to be tied to blood thinners and having to go to the hospital every month to get blood work.

well that's fine, but just keep in mind that you don't need to go to the hospiital and be tested every month. Many of us (me included) test ourselves at home. Indeed I drag my tester around the world with me as I travel (I'm in finland now, be back in Australia in 2 weeks)

However there is also nothing wrong with the choice of a boivine valve and indeed depending on what other medications you're on that may simplify things (like getting your dose right).

Myself I honestly believe that its a pretty tight market out there and that all the major valves are within "cooee of each other" (meaning all the same really).

So really the choice is down to if you want a tissue or a mechanical.

I like the way bovine is described but I see that improved pig valves have a fairly good longevity as well.

well I'm sure the company wants you to believe that, howeve every decade we see "vastly improved" and what that amounts to is about 10 or 15% over the "old model"

I believe seeing things this way takes a lot of the pressure off you and you can make a basic call as to which direction you want to go first (mech or tissue) and from there pick whichever happens to be the personal favourite of the surgeon you like and trust the most. Surgeons all have their views on which valve they like.

Why not go with that?

As to help around the house, I think that's a good idea , having been back from surgery to an empty house (I'm also a widower) sucks. I knew (from past experience) that I'd be worn out and ... well I hate being right all the time ;-)

So I'd say try to get something organised where someone can drop off stuff for you for the first couple of weeks. I did my 2nd OHS alone and as you have plenty of time during the day, you can just get things done in your own pace.

Follow strictly the guidelines that they give you (and read a few threads here, where guys like LondonAndy have made good suggestions)

Keep the attitude positive and know that you can do it

Best Wishes

 

[Eva]

Welcome aboard, Wilson.

Its normal to to freak out. I knew I’d need a surgery since I was in my early twenties, and still I freaked out when I was told it was time..I was 57.

Pros of and cons of tissue valves: you do not need to be on blood thinner (coagulants). But, in some cases, some end up being put on it for medical reasons!! Also, tissue valves life spam could be sometimes 5 years or 20 years. The replacement may be easier than nowadays and can be done intravenously!

I personally chose mechanical valves valves as I worried about needing another surgery before replacements are done intravenously for everyone! I still uptoday feel bad about AC, but I’m managing it well.
I have a machine at home and I check weekly. Though 48 strips cost about $212, but worth it.

its a debilitating choice, but if you trust your cardiologist and your surgeon, they may give you an honest opinion of which one is best for you as they know your health better! I was going between the two choices until one day before surgery!

good luck and keep us informed.

 

[LondonAndy]

Welcome Mr Wilson, to the place none of us particularly want to be but, once through the other side, I think you will find less of an issue than you currently fear.

There are plenty of threads discussing valve choice here, which hopefully you will find useful. I just wanted to add to Pellicle's comment about his self-testing of his INR for a mechanical valve, in case you might have got an incorrect impression - the meter for testing is hand held, battery operated, and uses a finger-prick drop of blood to do a test within a couple of minutes. It is therefore quick and convenient, and I test weekly, so take mine on holiday in my hand luggage when travelling. Use of these meters leads to a very significant improvement in managing your blood thickness, which is more important with mechanical valves but can also apply to tissue valves, particularly given your A-Fib, so worth checking with your Cardiologist whether you will need blood thinner even with a bio-valve. More information here if wanted.

Good luck.

 

[dick0236]

Hi Wilson. It's OK to "freak out".....but keep it in perspective. This is major surgery and it's being performed in the USA almost 1 million times each year. If it helps.....I am a visiting volunteer at one of the two hospitals in Louisville, KY that routinely do Open Heart Surgeries. I normally visit once each week and usually see six to eight folks who are either pre-op or post-op OHS. The majority have coronary bypass and/or valve replacement and are mostly aged 50s to 70s. Within 4 to 6 days almost all go home.

You are at that "flip of the coin" age when it comes to valve choice. I had my surgery when I was 31 and have been on warfarin since that time (over 50 years)......and it is not the bogey man that some make it out to be......especially now that many of us do our INR(blood test) in the convenience of our home. The plus side of a mechanical valve is that it usually is a "one and done" surgery. That to me is a big deal. I am now 82 and certainly would not want to go thru that surgery at my current age.

Do your homework, make your decision......and "git 'er done"........you'll feel a lot better afterwords.

 

[pellicle]

Hey Mr Wilson
I see that Andy has given greater clarification on the blood testing tool. I'm glad he did as you can see its really no more than what a diabetic does to monitor blood sugar. The advantage INR monitoring has over Blood Sugar monitoring is "we do it once a week" not "a cople of times a day"

Here is a video I did for showing users of the Coagucheck XS (which I of course have) how to ensure they get a decent sized drop of blood from the pinprick. From that you can see the machine and its size



Anyway, as I mentioned and **** seems to agree with, valve choice is really a coin flip at your age, so just pick which one you think will be what you like. As **** also says I wouldn't want to be going in for my next operation in my late 70's either.

Lastly I have a bunch of thoughts on my perosnal blog if you wish to read that. Its quite exhaustive and follows a rigorous style of examining the facts as written in Medical Journals (not medicine advertising sites).

http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html

 

[Cooker]

Welcome!! This place was a lifesaver for me 12 years ago. I was two months away from 50 and went mechanical. Everyone is different and you will get a wide range of opinions here. Remember to listen to you doctors and your heart.

I have had no problem with warfarin. I've had two surgery's and several procedures that required me to bridge off of warfarin... again no issues. OHS will freak you out no doubt, it did me. Again, everyone is different but if you are in reasonably good health it should go very smoothly. I was back at work in a month and the pain was not NEAR what I expected.....

You got this!
Tom

 

[knotguilty]

Hi Wilson,

You asked the million dollar question, what type of valve? We've all asked ourselves that same question. It comes down to what you are comfortable with. I would recommend you specifically ask your primary, your cardiologist, and your surgeon what they would do if in your shoes. And what they recommend. I would say that you are on the lucky side to have to go through this in your 60's because what ever you choose, you probably will never have to go through it again. The good thing is you are in good health which is great for recovery. If you don't have anybody at home to help, I recommend you get yourself a nice comfy recliner chair for the first week, some easy to prepare foods and plan on getting yourself up and moving as much as possible. You got this, you will be surprised at how much better you feel a couple months down the road. If just for peace of mind. What helped me through was thinking about my future and the great health I was going to be in. I will say I was a regular in the gym and the surgery was just a couple months off. Let us know what you decide.

 

[Nocturne]

Hey Mr. Wilson, welcome to the forum. Unlike many of the others here, I have not yet had my AVR surgery, having only found out about my aortic valve stenosis three years ago at the age of 41. I was extremely freaked out too, especially given my young age, the fact that I appear to have been born with a normal valve (probably), and the fact that a CT scan revealed arterial calcification typical of a 75 year old man.

I notice you are from Louisiana. Any chance that you are of Cajun descent? I'm thinking about those 90% blockages of yours and the fact that French Canadians (including Acadians/Cajuns like myself) tend towards familial hypercholesterolemia. How is your cholesterol?

Have you had a doctor check your Lp(a) levels? I'd strongly recommend it. There is medication being tested right now that can lower Lp(a) by 90%, and if you have an issue with Lp(a), it would be good to know so you can make an informed choice about medication when it becomes available. High Lp(a) can be causal for AVS, as it almost certainly was in my case (Lp(a) 390 nmol/L, more than triple the "extreme high risk" level).

A piece of good news that should relax your mind -- I have read extensively about lifespan expectations after AVR surgery. What I've found in more than one study is that after age 65-67, there is no appreciable difference in lifespan expectation between people who have had aortic valve replacements and people who never needed aortic valve replacements. At 63 you are so close to this threshold that you might as well be there. Congratulations!

As for the blockages -- it's an anecdotal story, but an uncle of mine needed triple bypass surgery for 90% blockages when he was 65, and he is still alive and kicking at 81. He just took a trip to Budapest to visit one of his sons, who works there as a theoretical physicist.

I generally agree with Pellicle and the others about valve choice. For most people, I think there is nothing wrong with a mechanical valve, and getting a bioprosthetic does not necessarily mean you will never need Warfarin (I know one woman personally - the sister of a friend - who had her aortic valve replaced with a bovine bioprosthetic and then needed Warfarin anyway). The only case where I would worry about a mechanical valve is if a person had an inordinate amount of calcification in their coronary arteries, because there is some evidence that Warfarin can accelerate the progression of calcification in body tissue (Pellicle will disagree with me on this, but I'd encourage you to do your own research). Then again, there is no proof that people with high levels of calcified plaque do better with bioprosthetic valves (it's never been studied AFAIK). It COULD be that factors like high Lp(a), which lead to extreme levels of calcification, also deteriorate bioprosthetic valves more quickly; we just don't know.

Best of luck! I understand you have been aware of your AVS for years, correct? How long have you known?

 

[pellicle]

Hi Noct

...Pellicle will disagree with me on this, but I'd encourage you to do your own research

no, actually I disagreed that there was essentially ample evidence to make it a "done deal" (which you implied) ... I asserted that it was weakly associated with it in the literature.

to be specific:

Agian, there IS ample evidence that warfarin causes calcification in humans.

so your new phrasing

because there is some evidence that Warfarin can accelerate the progression of calcification in body

is much more acceptable
I do agree totally to "do your own literature review" (none of us do research on this topic)

 

[OldmrWilson]

I want to thank you all for so much useful information! I am waiting at the moment for a Dr. callback to schedule with a Dr. for surgery. All prayer is much appreciated! Thank you all, Wilson

 

[Superbob]

Welcome, Mr. Wilson. You are not "old" at 63. But I am a tad biased, for that was the age at which I had my combined aortic root and valve replacement. My choice after much reflection was a porcine device, the Medtronic Freestyle. I am 76 now and cardio and echo tech continue to say all's well. I continue to be physically active. We are all different with different needs and priorities and takes on the multifarious research. You will make the choice best for you, and it will be. (It is only natural to be "freaked out" at this point, but the more you learn and experience, the more reassured and confident you will become.)

 

[Superman]

OldmrWilson - welcome to the forum. I hope you find the advice you're seeking. Note that we all bring our own experiences and biases to the table - so consider that when making your own decision.

I'm currently 45 years old and was 17 when I had my native valve replaced. I went mechanical that time. Going on 28 years since then, married with five kids, traveling, hiking, biking, skiing, and running. Not all at once, and not everyday - but I haven't shied away from those activities when the opportunities presented. I've been on warfarin that whole time, and also fall among the ranks of the home testers. Just got back from a Spring Break trip and packed my tester with my, just like others have said. Took a couple minutes one morning while getting ready to run a test. Assuming you floss your teeth, it's not much more time then that. Then we headed out to the amusement park. I can email or update my result on my services website. I'm not saying mechanical is for everyone, just echoing others in saying that warfarin isn't that big of a downside.

At 63, though, your decision is much different than mine. You'll likely get more time out of a bio valve than a younger patient, and best case scenario, you have one repeat. If you don't have any, I hope it's because the valve lasts longer than 20 years. If you have one, I hope it's because you're doing so well, you can tolerate the procedure and have many more quality years ahead..

For the record, I still had a repeat even though I went mechanical. Mine was for an aortic aneurysm, which is more likely in individuals with BAV. That was almost nine years ago. Fingers crossed that I'm done. Considering your level of blockage, I would wonder if another procedure for bypass may be in the cards down the road regardless of valve type? Maybe tissue makes sense if the primary reason one would choose mechanical really doesn't help you.

 

[honeybunny]

Welcome to the forum. You've gotten plenty of feedback already but I'll add my personal story. Diagnosed at 61 (May 2015) with moderate to severe stenosis in my bicuspid aortic valve, which I did not know I had. I came here and got wonderful advice. Paleowoman was especially a big help because we are close in age and had the same concerns about a mechanical valve, medication and the potential for ticking. After deciding on bio, I was asked toparticipate in a study for the Edwards Intuity valve and agreed. My last cardio visit in February shows that everything is fine and my heart is getting stronger.

I suggest looking through the post surgery forum to get an idea of what folks had to deal with after surgery. I had pleural effusion, which set my recovery back about two weeks. But all that is forgotten now

Good luck with your decision. You'll make the right one for you.

 

[OldmrWilson]

Consultation will be on 4-19.