Newbie Looking for Advice

[Guest]

I am sure my question has been asked several times before, but I am new to this and would appreciate your advice.....

I am 52 years old and was happily unaware that I had BAV till it showed up as a coincidental finding on an echo last month. Subsequent MRIs showed significant regurgitation and some drop in LV ejection ratio. But I am asymptomatic and would have never know were it not for all these diagnostic tests. Very worried and trying to figure out next steps and I would appreciate your advice on a few questions:

* My Cardiologist thinks I should go for AVR "within the next 6 months". Is there value to waiting further since I am asymptomatic? How do you determine the best time to get the surgery?

* I understand the rule of thumb is a mechanical valve for younger folks. But I am worried about living with the chance of a clot or intracranial bleeding while on Warfarin. I read some papers that give the probability of lifetime risk of major bleeding as quite high. So wondering if a bioprosthetic & dealing with a second surgery later is an option. Has anyone considered this and if so, would appreciate your thoughts.

* I am originally from India and our diet has all kinds of spices that impact clotting - garlic, vegetables, fish etc. Wondering how hard it is to control INR with a diet like this.

* I live in Northern California and have been in to see the team at Stanford. Any Californians on this blog and who would you recommend? I am open to going down to Cedar Sinai in LA if that is a better option.

Thanks in advance for your help and if there is any other information or advice you can give this newbie, I would be grateful.

Thanks!

 

[pellicle]

Hi

I am sure my question has been asked several times before, but I am new to this and would appreciate your advice.....

I am 52 years old and ...

* My Cardiologist thinks I should go for AVR "within the next 6 months". Is there value to waiting further since I am asymptomatic? How do you determine the best time to get the surgery?

you listen to your expert medical advice , not ask a bunch of patients who can only give their personal experiences ...

* I understand the rule of thumb is a mechanical valve for younger folks. But I am worried about living with the chance of a clot or intracranial bleeding while on Warfarin. I read some papers that give the probability of lifetime risk of major bleeding as quite high. So wondering if a bioprosthetic & dealing with a second surgery later is an option. Has anyone considered this and if so, would appreciate your thoughts.

you have read mostly rubbish, the probability of lifetime risk is about that of the probability of the general age related population as long as you keep your INR in bounds. Its like stats ... the probablity of rolling a 6 on a dice is 1:6 ... each and every time you roll it. Same goes with the chances of a bleed or clot issue ... so no, quite low really

* I am originally from India and our diet has all kinds of spices that impact clotting - garlic, vegetables, fish etc. Wondering how hard it is to control INR with a diet like this.

no different ... unless you intend to eat an entire 4kg bag of Spinach occasionally in one sitting


My view is that at your age its a moot point picking a mechanical over a tissue. I know nothing about your other state of health but generally you'll get 15 or 20 years out of a tissue prosthetic. So you may just as likely get the rest of life with the tissue valve anyway. But if you do need a reoperation you'll be older and weaker ... probably 70 ... so a lot depends.

Best Wishes with the decision

 

[Seeker]

NorCal here. My BAV was discovered at 40 years old in much the same way. I was also asymptomatic. Because of regurgitation/leakage my heart compensated for this which in turn caused my heart to enlarge. At 46 I received my 27mm St. Jude mechanical valve. The ticking is ever present but I don't really notice it anymore unless I think about it. I was originally set on a tissue valve, but for various reasons I ended up choosing a mechanical because it was right for me and my current circumstances. There is no "right" choice. Choose what you feel is best for you.

Warfarin has been a non-issue for me. It took me 3 months for my INR level to stabilize but once it did I've remained on a consistent dosage for the last year and a half. I highly recommend a home PT/INR meter to anyone taking warfarin long term.

I was concerned about having to change my diet. But I learned, from many of those on this forum, that you adjust your dosage to your diet, not the other way around. I have no food restrictions.

My surgeon is Dr. Zhu, Kaiser Sacramento.

I hope this helps.

 

[Paleowoman]

Hi Newbie - please do take advice from your cardiologist. Has he referred you to a cardiac surgeon ? That would be the next step in seeing someone who would be able to advise you at this stage on whether surgery should be done now or whether you should have close monitoring. I was asymptomatic when I had my surgery. When it comes to mechanical or tissue valve that is something for you to look into and discuss with your surgeon and cardiologist - there's no hard and fast rule, and, as well, things are changing all the time - just this week it's been posted on the forum info about a new tissue valve that is meant to last much longer than the current ones - it's called Inspiris Resilia and made by Edwards Lifescinces - apparently it's being used in Europe and will start being used in the US from next year, here's a post about it: http://www.valvereplacement.org/foru...451#post878451

 

[honeybunny]

Like the others said, listen to your cardiologist. You can also get a secon opinion. I did. The doctor who diagnosed me by an echo was ready to book me for surgery. A friend recommended her cardio for a second option. He did more testing, including a TEE, and determined it was not critical but that I'd need surgery within a year. I had it done 3 months later. It was inevitable and I wanted to get it over with. Having that second opinion took the edge off the shock of the diagnosis.

Regarding mechanical or tissue, I went with the latter for several reasons and don't regret my choice. But I was 61 at the time. Pellicle is pretty much the go-to guy here regarding warfarin so make him your best friend if you go with mechanical

Glad you found us. Keep us posted as you continue this journey.

 

[Northernlights]

A problem about talking about timing of operation comes from the fact that most people here have had aortic stenosis, when the timing is based on the gradient through the narrowed valve and normally waits for the development of symptoms, though there is a trend now to slightly earlier surgery.
Aortic regurgitation is very different in its development and effect on the heart. While chronic AR develops slowly, the left ventricle can become very large without any symptoms, and if it's allowed to go on too long, recovery of heart function after surgery is considerably poorer. Therefore with AR the aim is to operate before the left ventricle becomes too large, (LV end-systolic dimension [LVESD] >50 mm or indexed LVESD >25 mm/m2) and certainly when there is a drop in ejection fraction: there's no waiting for symptoms. Since your ejection fraction has started to drop your cardiologist has followed the guidelines and recommended surgery .
Stanford is 15 in the US heart hospital rankings , Cedars-Sinai at LA is 4 , but they are both obviously very good.

Mechanical / tissue is a very personal choice and you must make your own choice with your cardiologist/ surgeon's advice. Both sorts have disadvantages, and ultimately you have to choose between reoperation or warfarin. Both are imperfect and have risks, both are better than the valve you have now, and neither choice is wrong. Some people find the choice very difficult, others know absolutely what they want, or more usually what they don't want !

I knew I didn't want a mechanical valve ( my husband had been on warfarin for 14 years), but fortunately I reached 60 before I needed intervention. I expect my choice ( a Ross - not advised in AR, and an op I was almost too old for!) means I am likely to need another operation in the future, but nevertheless I'm very happy with my choice, though I'm sure others wouldn't be - it's all very individual. At 52, if you choose a tissue valve you should definitely be prepared for a re-operation. You have to decide whether you find this an acceptable prospect, but it's certainly a valid option if you would prefer it, particularly since you have access to two excellent hospitals. Since you have AR it may be worth asking if valve repair is a possibility, bearing in mind success is very surgeon-specific. TAVR will only be an future option if you have a large enough valve - 23 mm is the minimum, 25mm better, so that is worth asking about the surgeons about as well ( though I think in AR the annulus is generally larger). Sutureless valves are helpful in reoperative scenarios too - there are lots of options.

All the best and don't worry too much - and do cardiac rehab afterwards, it's really worthwhile!

 

[Paleowoman]

Mechanical / tissue is a very personal choice and you must make your own choice with your cardiologist/ surgeon's advice. Both sorts have disadvantages, and ultimately you have to choose between reoperation or warfarin.!

Except now there is this new tissue valve which is already being used in Europe and will be available in the US in 2018 which is meant to last possibly as long as mechanical ! Here: http://www.edwards.com/ns20160929 and here: http://www.edwards.com/gb/devices/heart-valves/resilia (click OK to view)

 

[Dcano1007]

Hello
liaten to your cardio and replace it.
i was happily asymptomatic and my MAV was never diagnosed. I developed endocarditis which almost took me to my grave.
You have the opportunity to take care of this before is a bigger issue.
I believe that tumeric affects INR levels, it make the blood more viscous.

 

[pellicle]

Hi
Pardon me, but I just wanted to add to this

I believe that tumeric affects INR levels, it make the blood more viscous.

The key here is the word "may"

Tumeric may effect your INR.

From a fluff site thst interviews a doctor here

Blood thinners can interact with large doses of turmeric, as can drugs that reduce blood clotting. People may experience bleeding or bruising when combining large doses of turmeric with aspirin, warfarin, anti-platelet drugs and NSAIDs, such as ibuprofen.

One is left to imagine what large doses means ... As well, note the use of can and may. Not does and no numbers. Numbers are usually associated with factual science based evidence. For instance you are quite precise about your warfarin dose in milligrams (or I hope you are)

Myself I have seen no evidence that it effects mine, I use it with basmati rice and a bit of fenugreek too. As well as in many curries I make.

This is why I also advocate self testing to learn and know what effects you and not rely on health and wellbeing bs websites.

Most of this stuff is simple fear generating and arse covering.

Test and know. Know thyself

 

[mikeccolella]

I am 64 and decided to choos a tissue valve. It was an easier choice due to my age.

 

[mikeccolella]

http://www.acc.org/latest-in-cardio...c-valves-are-better-even-in-the-young-patient

the above is an analysis comparing mechanical and tissue valves by the American College of Cardiology

 

[LondonAndy]

Warfarin has been a non-issue for me. It took me 3 months for my INR level to stabilize but once it did I've remained on a consistent dosage for the last year and a half. I highly recommend a home PT/INR meter to anyone taking warfarin long term.

I was concerned about having to change my diet. But I learned, from many of those on this forum, that you adjust your dosage to your diet, not the other way around. I have no food restrictions.

I agree with Seeker, and had severe stenosis but only for a few months before having a replacement mechanical valve, but one consequence of the stenosis going untreated was enlargement of the heart, which is a problem in itself. I am not sure what the consequences of regurgitation going untreated are, but if your Cardiologist is saying it needs to be addressed within the next six months then either get a second opinion or listen to him/her. Having symptoms is not necessarily a good thing!

 

[jcgtok17]

I had my AVR May 1, 2017 and went with St. Jude Medical GT tissue valve. At 50, I assumed mechanical would be the default but my medical team were highly supportive and recommended the tissue valve route. TAVI procedures are covered in my native Canada and will soon be covered in Japan which factored into my thought process re: future required tweaks / valve replacement. No wrong answer, but read all the reserch and determine the best route for you and yours. JCG

 

[almost_hectic]

* My Cardiologist thinks I should go for AVR "within the next 6 months". Is there value to waiting further since I am asymptomatic? How do you determine the best time to get the surgery?.

Thanks!

The best time to get the surgery is while you're still alive. My first cardiologist said I'd need surgery in a year or two. Second opinion from different cardiologist said I needed surgery in a month or two. Surgeon afterward said I was lucky I made it there when I did. Meaning if I had waited like the first guy said I'd probably be dead. As the valve narrows blood gets punched at high pressure against the aorta and stretches and thins the wall making an aneurism. If that should burst it's likely too late to even do emergency surgery. You'll die almost instantly. Long story short, why wait... if they want you to have surgery it's time.

 

[pellicle]

The best time to get the surgery is while you're still alive.
....Long story short, why wait... if they want you to have surgery it's time.

best advice I've ever read

... of course if you die first you can avoid the surgery and all those recovery problems. Perhaps then you could consult with Dr Van Helsing ...

 

[Superman]

As the valve narrows blood gets punched at high pressure against the aorta and stretches and thins the wall making an aneurism. If that should burst it's likely too late to even do emergency surgery. You'll die almost instantly. Long story short, why wait... if they want you to have surgery it's time.

While I suspect it doesn't help, that really isn't the cause of an aortic aneurysm and/or the higher occurrence rate in BAV patients. Anecdotal evidence to be sure, but I had my valve replaced when I was 17. I had no aortic dilation at that time, or for 16 years after the initial surgery. Then, between 2006 and 2009, I dilated from 2.6 cm to 4.9 cm. Years after my narrowing valve was replaced. My understanding is that some people have a connective tissue disorder component related to the BAV congenital heart defect. For those individuals, the eventual aneurysm is not avoidable. It just needs to be dealt with when it happens.

 

[carolinemc]

Had my AVR in 2001 and still here. St.Jude's leaflet valve. Been on Warfarin (generic of Coumadin). Feel just fine and dandee. Hugs for you today!

 

[mikeccolella]

Anecdotal evidence is close to worthless. I say close not totally.

 

[amarG]

Thanks all for your feedback and advice.

My primary cardiologist wanted to run some more tests before making the decision and I expect to hear back from him this week. Meanwhile, I met the team at Cedar Sinai and they recommend surgery within the next 3-6 months. I expect my primary cardiologist will be of a similar view, so I'm mentally gearing up for surgery.

Grappling with mechanical vs bioprosthetic valve choice. I think it all turns on how easy it is to manage the INR range on Warfarin... vs risk of reoperation..... Many of you seem to have mastered the art of INR management and I hope to reach out to some of you for tips in this area.

Thanks.

 

[Dodger Fan]

I think it all turns on how easy it is to manage the INR range on Warfarin... vs risk of reoperation..... Many of you seem to have mastered the art of INR management and I hope to reach out to some of you for tips in this area.

It was frustrating and annoying at first. It's easy now. I definitely recommend weekly home testing with occasional lab draws. Pellicle was very helpful. It was the first time I'd spoken to someone while they were in Australia.