Right and left heart angiogram scheduled for 2/17/12, before scheuling avr

[Yvonne5349]

59yo female with bicuspid aortic valve stenosis, currently residing in the Puget Sound area of WA state.
I've known this day was coming since my early 20's (about 1973) when I had rheumatic fever and a heart murmur was diagnosed. I found out about having a bicuspid valve during my first echocardiogram in 2006, but it didn't really mean much to me at that time since I was still in the mild/moderate range. I was always told that I might have to have surgery once I hit middle age but that it was anticipated that great strides would have been made in open heart surgery by then. (I know, I know... most of you are thinking "What? She's 59 for christsake, and still waiting for middle age?") I've already asked myself what the heck I was thinking, but I have always been a "powerhouse" with an unlimited amount of energy and stamina. I landscape, paint my own house, ride my own Harley.... how could I be middle age? The answer to that question has been driven home for me recently when I realized that I've been symtomatic for almost 9mo, with slow and subtle declining energy for over a year.
At a recent check up with my PCP, he decided to send me for my 2nd echocardiogram, which was done 1/5/12, and clearly indicated it was time to move toward surgery.
Coincidently, while discussing the results of my recent echo in a "phone appointment" with my PCP, it became quite apparent that he did not "catch" 3 rather important details in the report saying it was very difficult study; the aortic valve was not well visualized but confirmed it was thickened and calcified; and that my transaortic velocity had entered the severe range. The doctor assured me that he didn't see any major problems and we'd follow up in another couple of years ~ yeah, I would have been dead by then. I'm more than a little ticked off and btw, I meet with my new PCP next week. I am so glad that I had insisted a copy of the echo report be sent to me so I could review the summary before our phone appointment...otherwise, I would have accepted the PCP's proclamation that all was well. :mad2:
Fortunately, I have been referred to a good cardiologist who ordered a CT angiogram which showed no aneurisyms. I'm having a right and left heart catheterization on 2/17 and I'm told the results from all tests will be sent to the cardiac surgeon who will schedule me for consultation prior to scheduling avr.
The thought of surgery scares the poo out of me, but not quite as much as any of my options (none). I'm leaning toward a tissue valve since I think the mechaical valve would be somewhat limiting for my lifestyle, although terribly seductive with the knowledge that it will last forever. But monthly (or more frequent) testing, strict diet omitting the foods I live on to keep my weight in check, rationing of alcohol consuption, plus knowing that no one can predict how much anti-couagulant will be required for a specific patient to keep them within the required range..... maybe the tissue valve may be MY best choice with the hope that by the time it needs to be replaced, it will not require a circular saw, vice grips and a hydraulic jack.
Sorry for the rambling first submission of a new member, but I just needed to unload and share my story.

 

[Luana]

The thought of surgery scares the poo out of me, but not quite as much as any of my options (none). I'm leaning toward a tissue valve since I think the mechaical valve would be somewhat limiting for my lifestyle, although terribly seductive with the knowledge that it will last forever. But monthly (or more frequent) testing, strict diet omitting the foods I live on to keep my weight in check, rationing of alcohol consuption, plus knowing that no one can predict how much anti-couagulant will be required for a specific patient to keep them within the required range..... maybe the tissue valve may be MY best choice with the hope that by the time it needs to be replaced, it will not require a circular saw, vice grips and a hydraulic jack.

The thought of surgery has scared the poo out of just about all of us who've had it.

I was not too much younger than you when I had my AVR and surgeon told me if I had a tissue valve I would face 2 or 3 additional surgeries. Even without ever having had OHS before, somehow I knew I would not want additional surgeries. I'm very glad I have a mechanical valve.

I don't know what it is about your lifestyle that you think will need to changed by taking anticoagulants, but I doubt if it's anything. A monthly blood draw is no big deal. There is no need to have a strict diet omitting vegetables or greens. I freely eat whatever I want of those, and I am a good vegetable eater. I've never limited them and have had a stable INR. As far as the alcohol, as long as you don't get falling-down drunk, you're fine to drink.

I would not choose a tissue valve thinking when it needs to be replaced it can be done via catheter. These procedures may not be approved for many years and not everyone will be a candidate for it. Currently they're only in use for those who would not survive traditional surgery. Some do base their choice on that, but, to me, that's just not using good sense. If you don't mind having 2 more valve surgeries after this one, then select a tissue valve. You may get 15 years from your first valve; you may get 5. It's pretty much a crap shoot.

 

[Mentu]

Yvonne, welcome to VR. As Luana just told you, hearing the "S" word is a shock even if the possiblity has been dangling out there for years. Your reaction is quite reasonable. We are most fortunate, however, that we have a problem that can be corrected in such a way that we can return to our normal lives. As for the question of valve type, I think much of the concern about anti-coagulant therapy is over blown. Although I have a tissue valve, I have several friends that have found that ACT has made little change in their lives other than the need for more frequent monitoring. Now with the advent of home testing, even that is less troublesome. I would suggest you discuss with your surgeon whether there are any specific medical reasons one type of valve would be preferable. Beyond that, which ever choice you make will be a vast improvement over the one that is failing.

I definately agree that getting copies of one's test results is very important. With our health care systems as fractured as it is, we cannot count on things being caught in time. To get the best care, you must be conversant with the issues and follow up when it seems that your doctors are not sufficiently concerned. You are your own best advocate.

I had the same right/left heart cath just before my AVR when I was 59 and found it very interesting. During a previous heart cath, I was barely conscious. For the second one, I was given something for anxiety but was quite alert. The surgeon who performed the heart cath gave a running commentary about what he was seeing and what it ment for me. I left feeling much more confident that surgery was necessary and that the results would be excellent. When moving towards heart surgery, such reassurance is very welcome.

Larry

 

[Duffey]

I think you'll find that the heart cath is pretty smooth going. Have you decided on your surgeon and the hospital? Hopefully you'll have time to make arrangements and become accustomed to the thought of valve replacement. For what it's worth, most of us will admit that the thought of surgery scared the poo out of us too. We know what you're experiencing, and we're here to support and answer questions you may have.
Glad you joined the group, but sorry for the circumstances.
Mary

 

[Yvonne5349]

Thank you all for your input.
I am hoping that Group Health will continue to work with me and approve my cardiologist's referral to a specific surgeon at Harrison Hospital in Bremerton, WA, which is about 8 miles from my home. Harrison has been recognized nationwide for several years for their cardiac surgery center. I am also only a short distance from UW, Swedish and Virginia Mason Hospitals in Seattle also, however, these facilities would require a ferry ride and commuting through very dense traffic areas in downtown Seattle. Total commute time to any of the last 3 locations would be at least 2-3 hours each direction - minimum, and would create a real hardship in regards to leave time from work - a whole day instead of a lunch hour, ferry and travel expense and wear and tear on me and family.

As I have researched the "what type of valve" issue, I've fluctuated back and forth. So far, this is what I've determined the impact would be for me personally:
1) Mechanical - I don't want to be tethered to monthly blood tests and lifetime medication. Would I deal with it ok if a mechanical valve was medically indicated or my only option? Yes, of course. However, although Luana says she doesn't have to monitor or limit her high vitamin K leafy greens at all, I don't know if that is true for everyone. I wonder if that is because Luana responds really well to her anti-couagulant? I also wonder about the long term effects if a larger dose of Coumadin is needed? I've talked to a local avr patient who has the On-x mechanical valve and he loves it. Says he bleeds, but not unmanagable. The limitation of alcohol intake might cramp my style... I don't drink every day ana an acurate estimate would be maybe a couple drinks a week, but I also socialize a lot, go to bbq's, hang out with girlfriends, ride my motorcycle and attend biker events. There may be a "more than minimal amount of alcohol consumption" at Spring Opener or the Rememberance Run! Sturgis is still in my bucket list!
2) Tissue - No, I'm not looking forward to having this surgery every 10 years, but I almost think it would be worth it if I had a minimal amount of restrictions for the next 10. Of course, that is coming from someone who is Pre-op. I do know that if I choose a mechanical valve and have "issues" with coumadin and/or keeping stable INR, I'm going to be locked into it. If I have a tissue valve and end up needing a 2nd surgery down the road, I will have the option of going mechanical then, if I so choose - thus never having to have it done a 3rd time.

Thanks all for the words of support about the upcoming angiogram. I know I will find it extremely interesting and fascinating and sure my cardiologist will give play-by-play report during the procedure. Somehow, the hole punch in the femoral artery does not gross me out as much as the idea of them driving their little skewer into the vein in my wrist and weedling their way up to my heart.

 

[Lynlw]

Hi Yvonne, Welcome. It sounds like you've put alot of thought into your valve choice already, FWIW many surgeons would reccomend tissue valve for people in their 50s these days. You MIGHT need it replaced in 10 years or less, but chances are just as good for a person in their 60's it could last 15 or more years at least from the different studies, and as you said who knows what options would be available when that valve needs replaced. Percutaneous valves (valves by cath) are already approved for higher risk patients TODAY. Quite a few members chose tissue valve as their 2nd or more OHS so chose it even tho they knew what it was like having and recoverring from heart surgery.

Saying that, Coumadin probably wouldn't change what you eat and you can still drink moderately

Thanks for sharing your story. its a vrry good reminder about how you have to pay attention to your own medical tests and also why 2nd opinions can be very important.

 

[kfay]

Yvonne, If you've spent much time on here reading, you know that valve choice should be a very personal decision made by you and your surgeon (and possibly your family). You should not let anyone on here sway your opinion one way or the other. All of us have had to decide which was the lesser of two evils for us, either facing another surgery down the road, or taking and managing coumadin for the rest of your life. Which every way you go, it's better then the valve you have now!

For what its worth, I have a tissue valve (it was my second surgery), and have taken short runs of coumadin after surgery and after some ablations. I know that I am facing more surgery in my future and am ok with that. I also didn't really find those months on coumadin to be a big deal either, but knew it wasn't a life long thing. Make your choice and don't look back.


Kim

 

[Greg a]

Yvonne, testing weekly/monthly and dosing is no more that thousands of diabetics face 4-6 tme a day, it is allpart of a "new normal'

A heart felt WELCOME to our OHS family glad you found the site most of the community are OHS brothers and sisters,(read no medical professionals) there are some minimally invasive surgeries as well so ask away, there is a wealth of knowledge here for the future .....


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[Boston Tiger]

Welcome to the scared poopless club! Everyone here can relate to that shocked feeling when you first get the news that you need heart surgery, and vividly remembers what they went through while they learned to accept their fate. There is a reason that you will be reminded numerous times that the wait for the operation is the most difficult part. We are here to provide you an outlet for asking questions or just venting, because we know that it helps get through the tough times.

I was lucky enough that my mitral valve could be repaired, but had to give my surgeon my preference for a mechanical or tissue valve on the day of the surgery, just in case he couldn't repair things. I kept swinging back and forth between the two, since neither option was particularly appealing, although better than the alternative. I ended up requesting a tissue valve, but really don't know if I would make the same decision now that I know how long the recovery takes. There are a lot of people on this site who can tell you about their experiences with coumadin, which sure don't seem as bad as I had read about before my surgery.

Best of luck!

 

[Tom Berning]

Welcome Yvonne,
Just as everyone else has mentioned, the initial shock of finding out that the time is finally here for surgery and then waiting for it is the hardest part. The second hardest is valve choice, but whatever you choose don't look back and be happy with it. I'm only a few years younger than you, (the 50's are a real gray area for valve selection advice) I chose a mechanical valve, mostly because of the angst over having surgery, this was my first time in the hospital and I only wanted to do it once, but I would have been happy either way. Now I'm 8 weeks post-op and starting to do pretty well, while recovery hasn't been great fun it's doable and I could do it again if I had to. You sound like you've already done some research so keep going. This forum is the best resource that I have found. There are a couple of books out there that are worth reading but with the exception of Adam Pick's book they're are more geared towards people having bypass surgery. I found my angiogram to be a non-event. So keep a positive attitude and try to relax(easy for me to say now).

Tom

 

[Superman]

Welcome aboard!

I'm not inclined to sway your opinion one way or the other tissue vs. mechanical. But I do think it's important to clear up some misconceptions about anti-coagulation therapy for people that may just be browsing.

In terms of impact on your day to day living, warfarin is very minimal. If you have leafy green vegetables as part of your diet, then you dose the diet. You do not need to cut them out completely. Now, if you are a person who eats a couple plates of spinach on Monday, then downs a gallon of cranberry juice (has the opposite effect on me and raises my INR) on Friday, but doesn't touch either the rest of the week - you'll likely have issues. But if you have a consistent amount throughout the week - your dosing should be able to handle that.

In terms of drinking - this shouldn't be an issue either. If anything, it's a benefit! That five drink buzz will only take two or three. I've never noticed having drinks once in a while having an impact on my INR. I don't drink much at all sometimes going six months to a year w/o - then going to a party and having a few. I also had quite a bit more during college w/o issue.

Regarding lifetime medication - don't be surprised if even with tissue, you end up on something. Whether it be a beta-blocker or aspirin. Even if you take a daily vitamin, it's not much different. Just a pill you take with breakfast or dinner (as long as your consistent with your choice). Testing is becoming easier then ever. I test at home and it takes less time than brushing my teeth in the morning and I only do it once a week. Some people even less.

I've been on warfarin for 21 years and all my other bloodwork always comes back normal (aside from INR - which comes back in therapeutic range). As I started pretty much on my 18th birthday (valve replaced two days before), I hope to be on warfarin for another 30 or 40 years! (Is 50 too much to ask?)

Having had OHS twice already, once for valve and once for aneurysm - I'm all for minimizing repeats. I don't read anything in your posts that I wouldn't be open to doing with my existing mechanical valve.

Of course none of this addresses the all important "sleep at night" test. A person needs to be comfortable with their decision and sleep an night or it's just not right for them. As others have mentioned, either choice is better than your native valve at this point.

Best of luck on your journey and keep us all posted.

 

[Duffey]

Superman's post also illustrates that receiving a mechanical valve doesn't guarantee a lifetime free of further cardiothoracic surgery. There are many variables to consider when choosing your valve, but as others have mentioned, the choice will be better than what you now have.
Best wishes

 

[Luana]

1) Mechanical - I don't want to be tethered to monthly blood tests and lifetime medication.

The lab I use is 5 minutes from home, total time for driving and getting the test is about 20 minutes out of my life in one month. You may be able to get a home unit through your insurnace and not even go to a lab. Medication? I take a pill. No big deal. You don't take any pills now? You probably will after surgery. There is no guaranty with a tissue valve that you will not need to take Coumadin, if you develop a-fib, you must take an anticoagulant.

However, although Luana says she doesn't have to monitor or limit her high vitamin K leafy greens at all, I don't know if that is true for everyone. I wonder if that is because Luana responds really well to her anti-couagulant? I also wonder about the long term effects if a larger dose of Coumadin is needed?

I freely eat green vegetables and salads. I eat cranberries at Thanksgiving. The dose is tailored to the diet; there's no need to tailor diet to the dose. I doubt I respond any better than anyone else. This is really not difficult stuff. Your dose will change from time to time. Mine has been adjusted a few times in the last two-and-a-half years. That's just how it is, again, no big deal. If you need a larger dose, than that's what you take. Mine is not particularly low or high. I don't care what the dose is; I do care that I'm adequately anticoagulated.

I've talked to a local avr patient who has the On-x mechanical valve and he loves it. Says he bleeds, but not unmanagable.

What does he mean "he bleeds"? Everyone bleeds when cut. I'm diabetic and routinely do finger sticks to check blood sugar. There's no difference in the bleeding than before surgery. It stops right away. Taking ACT means it takes a bit longer for your blood to clot, not that it won't clot. Superficial cuts are not risky. The risk is more with internal bleeding than external; however, that is greatly lessened by staying within your target INR range. Before I learned about this stuff, I thought I'd be like a hemophiliac taking Coumadin. Not at true at all.

The limitation of alcohol intake might cramp my style... I don't drink every day ana an acurate estimate would be maybe a couple drinks a week, but I also socialize a lot, go to bbq's, hang out with girlfriends, ride my motorcycle and attend biker events. There may be a "more than minimal amount of alcohol consumption" at Spring Opener or the Rememberance Run! Sturgis is still in my bucket list!

Consuming alcohol is not the problem. Getting so drunk you fall and split open your head is. If you're going to get drunk and get on your motorcycle and ride recklessly and crash, that could be a problem. If you drink to the point of falling down and injuring yourself, that's a problem.

Tissue - No, I'm not looking forward to having this surgery every 10 years, but I almost think it would be worth it if I had a minimal amount of restrictions for the next 10. Of course, that is coming from someone who is Pre-op. I do know that if I choose a mechanical valve and have "issues" with coumadin and/or keeping stable INR, I'm going to be locked into it. If I have a tissue valve and end up needing a 2nd surgery down the road, I will have the option of going mechanical then, if I so choose - thus never having to have it done a 3rd time.

The older you get, the longer a tissue valve will last. There's usually no need to get a mechanical valve at age 70 or older.

 

[Superman]

Superman's post also illustrates that receiving a mechanical valve doesn't guarantee a lifetime free of further cardiothoracic surgery. There are many variables to consider when choosing your valve, but as others have mentioned, the choice will be better than what you now have.
Best wishes

Certainly true. Although I'm guessing my graft would have been my 3rd or 4th OHS if I had gone tissue. Especially with the pig valves in 1990. Lets say I get 10 years out of that or even 15. My aneurysm didn't even hint at showing up until 2009 - so it at least would have been my 3rd. Had I gone tissue again, lets say I get 15 years out of them. I'd need surgery again at 51, 66, and maybe something in my late 70's / early 80's. For me it was pretty simple. Likely two OHS's or at least five.

 

[Bill B]

So, you're a biker and drink socially and don't watch your diet, Sounds like me. I have 5 motorcycles and two high speed sports cars. I race cars, including races with top speeds over 200 MPH. I shave with a blade razor. Maybe you don't do that, but I think my lifestyle is about as active as one can get. Also, I HATED needles and dreaded the thought of monthly testing. Still, I chose the mechanical valve which my surgeon recommended based on my otherwise good health and long life expectancy and what he called my "young" age, although I was 61 at the time of surgery. Warfarin has proven to be a pill I take once a day, and I've found such good phlebotomists that my fear of needles is gone. My diet is the same as it always was. I've haven't been out of range on the blood test in over a year.

 

[Yvonne5349]

Here's the latest update...Heart cath went pretty much without a hitch. The doctors are NOT going to procede with valve replacement at this time since they were able to determine that my arteries are clear, heart is beating strong and aortic valve funtioning well enough not to warrent surgery at this time. They are estimating a year, maybe two. Ok, that's a classic good news/bad news flash. So while I am thrilled that I do not need surgery "today", it certainly extends that pre-surgery phase until my condition deteriorates enough to risk surgery. I'm grateful that I will be closely monitored, but will be more relaxed when I can put that little black cloud behind me! Getting old is not for sissies.