Newbie Looking for Advice

[pellicle]

Hi

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.

if you decide to go the INR management route feel free to send me an email to pellicle at hotmail (dot com) and I'll do what I can to assist (including set up a spreadsheet which we can work with together so you can get the feel of what's happening)

Best Wishes

 

[LondonAndy]

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.

I notice from your profile that you are an Engineer, so personally I think you would find managing your INR a piece of cake. Your own home meter (probably a CoaguChek XS from Roche) is essential, both for decent quality monitoring of your INR, and also the convenience of avoiding trips to an anti-coagulation clinic for them to do a blood draw or use their own meter. The meter works with a finger-prick of blood instead of ferreting around in your veins.

There would be an initial learning curve, where you test more frequently to understand the effect of dose changes and possible effects of diet changes (though as you will have read here, most of us find diet has little effect and adjust our Warfarin dose to suit it). Then as you get experience and are comfortable with the process it's just a case of testing weekly.

As you will see if you read many of my other posts, personally I consider home testing to be far better for managing my INR than clinics. In England, our National Institute for Clinical Excellence produced a report in 2014 saying this is best practice - you can see some key points and link to their full report here. The reduction in complications such as strokes is massive. (I prepared this document thinking I would have to persuade my doctor to allow me to self test, but I didn't need it as he was fully supportive). Here in the UK we have to buy our own meter at £300 (about $400) and then the test strips are on prescription, ie about $10 for a pack of 24, or free.

 

[dcc617]

SF Bay Area here. I had been diagnosed with Aortic valve stenosis 8 years ago. It was only after quarterly stress tests and echos that my cardiologist finally said it was time to have the replacement. Have you had enough testing to be sure it's the time? If you're concerned, get a 2nd opinion. Your insurance should cover it.

If you're wondering about porcine over mechanical, do your research and talk with the surgeon. But research reputable resources and not the comment section in Facebook. Many of us have had AVR and lived to see another day. Each person's experience is different. However, I can tell you, mine was much easier than I ever expected.

Yesterday I had a TEE and was told the valve is failing and AVR replacement is within the month. I'm not worried. Why worry? I know I'll be fine.

Best advice - step back. Take a big breath and make a list of questions for your doctor(s).

 

[amarG]

I notice from your profile that you are an Engineer, so personally I think you would find managing your INR a piece of cake. Your own home meter (probably a CoaguChek XS from Roche) is essential, both for decent quality monitoring of your INR, and also the convenience of avoiding trips to an anti-coagulation clinic for them to do a blood draw or use their own meter. The meter works with a finger-prick of blood instead of ferreting around in your veins.

There would be an initial learning curve, where you test more frequently to understand the effect of dose changes and possible effects of diet changes (though as you will have read here, most of us find diet has little effect and adjust our Warfarin dose to suit it). Then as you get experience and are comfortable with the process it's just a case of testing weekly.

.

LondonAndy, thanks for your note. I have a type 1 diabetic son and with all the realtime tools at our disposal - insulin pump, Continuous Glucose Monitor, its still a challenge keeping blood sugars in range. I note from your bio that you are on the pump as well. How would you compare BG management vs INR management. BG can go up or down within minutes. Is INR less labile? Does INR fluctuate less on an hour-to-hour basis?

thanks

 

[amarG]

SF Bay Area here. I had been diagnosed with Aortic valve stenosis 8 years ago. It was only after quarterly stress tests and echos that my cardiologist finally said it was time to have the replacement. Have you had enough testing to be sure it's the time? If you're concerned, get a 2nd opinion. Your insurance should cover it.

If you're wondering about porcine over mechanical, do your research and talk with the surgeon. But research reputable resources and not the comment section in Facebook. Many of us have had AVR and lived to see another day. Each person's experience is different. However, I can tell you, mine was much easier than I ever expected.

Yesterday I had a TEE and was told the valve is failing and AVR replacement is within the month. I'm not worried. Why worry? I know I'll be fine.

Best advice - step back. Take a big breath and make a list of questions for your doctor(s).

I'm in Sacramento. Glad to meet a fellow Northern Californian, Would love to talk w you to get your feedback on your surgeon and valve choice.

Well, after the initial shock wore off, I delved thru my old medical records. It shows an echo in 2008 with the bucuspid finding but otherwise normal heart and valve function. Other than tell me all was ok, the cardiologist didnt inform me of the bicuspid diagnosis nor schedule any annual follow ups Here I am 9 years later with severe regurgitation and reduced LVEF.

Went to Stanford and second opinion at Cedars Sinai. Stanford's final decision is pending but Cedars Sinai feels I should get AVR before christmas.

Havent made a decision on surgeon yet. Dr Woo at Stanford perhaps...

 

[pellicle]

Yesterday I had a TEE and was told the valve is failing and AVR replacement is within the month. I'm not worried. Why worry? I know I'll be fine.

Best advice - step back. Take a big breath and make a list of questions for your doctor(s).

excellent, and excellent!! Love your approach!

:Face-Laugh:

 

[pellicle]

How would you compare BG management vs INR management. BG can go up or down within minutes. Is INR less labile? Does INR fluctuate less on an hour-to-hour basis?

pardon me answering (when you've asked this of Andy, but I'm sure he'll answer to)
BG management is far more complex than INR management because BG changes when you eat something , and it changes fast. INR does not change over a course of a day unless some medical intervention (such as an injection of Vitamin K at the ER of a hospital).

INR does not fluctuate within hour to hour indeed (unlike insulin) the half life of warfarin is about 2 days, so you may see quite minor INR variations day to day. Even if you completely miss a days dose you're likely to see an INR of this: [IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c1.staticflickr.com\/9\/8104\/8580330029_eebef88a58_o.jpg"}[/IMG2]


indeed my own measurements (when I have exactly missed a dose) correspond to somewhere between the blue line (simple model predicted) and black line (simple 3 period average of the model).

In the past (when I was relatively new to this) I did daily samples of INR and then dropped back to half weekly because I could see so little variations between daily samples. Weekly is plenty to catch variances and do something about it.

See this thread excellent discussion thread:
http://www.valvereplacement.org/foru...3179-novembinr

Best Wishes

 

[amarG]

Thanks Pellicle. Thats extremely helpful and reassuring! Saw your two year INR trend graphs on another post and all this data is really helpful!

 

[pellicle]

Hi

Thanks Pellicle. Thats extremely helpful and reassuring! Saw your two year INR trend graphs on another post and all this data is really helpful!

Happy to help

Some more reading from my blog

http://cjeastwd.blogspot.com/search/label/INR

Best Wishes

 

[neil]

dcc 617 has good advice , check with the experts on this, yes get opinions from people but do remember nobody on these sites are medically qualified or trained,its only there personnel thoughts, good luck with whatever you choose

 

[LondonAndy]

pardon me answering (when you've asked this of Andy, but I'm sure he'll answer to)
BG management is far more complex than INR management because BG changes when you eat something , and it changes fast. INR does not change over a course of a day unless some medical intervention (such as an injection of Vitamin K at the ER of a hospital).

As a member of the Pellicle fan club I agree with all of what he said, and would have said much the same but without the graphs!

I am not actually on an insulin pump - although a type 1, in the UK they tend to prefer the injection route, but treatment methodology won't make any difference to comparing stability between the two conditions.

 

[amarG]

Had a long discussion with the surgeon at Stanford and he offered an interesting option....aortic valve repair. I guess its an option for regurgitant valves (as opposed to stenotic). Sounds like a much bigger surgery - he will have to replace the aortic root even though its not dilated. This technique is still very new & not much data out there on the outcomes of aortic valve repair (I believe it is common for mitral valve). Wondering if any in this forum chose the repair route or have any thoughts on this option? Thanks.

 

[cldlhd]

Had a long discussion with the surgeon at Stanford and he offered an interesting option....aortic valve repair. I guess its an option for regurgitant valves (as opposed to stenotic). Sounds like a much bigger surgery - he will have to replace the aortic root even though its not dilated. This technique is still very new & not much data out there on the outcomes of aortic valve repair (I believe it is common for mitral valve). Wondering if any in this forum chose the repair route or have any thoughts on this option? Thanks.

I had my aortic valve repaired in February 2015. I also had the root, ascending and hemi arch replaced with a graft. First I want to say that I'm not an expert but I'll share my experience and what I do know.
Obviously each valve is different but mine wasn't leaking much and wasn't stenotic so the aneurysm was the main cause for my surgery. It was supposedly either 4.7 or 4.8 cm but after surgery I found out it was actually 4.99 cm which made me happy that I decided to get it over with. I was also happy with my choice of hospital and surgeon. I had it done at the Hospital of the University of Pennsylvania in Philly and my surgeon was Dr. Joseph Bavaria. He's pretty highly regarded with aortic valve repair and he told me of some new techniques they pioneered there a few years back so i felt comfortable (as much as you can ) having it done there. Stanford is also a great center and I'm sure they have some top shelf surgeons. Immediately post surgery he told my wife and mother that he nailed it and put me in his all time top 5 for valve repairs which of course was good to hear. He asked my permission to use my case at the 1st annual North American Symposium on Valve Repair that Penn hosted in Philadelphia. I didn't get any payment for it-lol. My post surgery TEE and my one year follow up test showed zero leakage so that's a good thing. I'm probably almost due for another check so fingers crossed.
I've come across some stats regarding repair and I'll see if I can dig them up but as ever "results will vary". Feel free to ask me whatever you want or PM me.

 

[amarG]

Hello Folks,

It's been a while since I started this original post. Thanks to all of you who provided advice. Just wanted to give you an update. I went to Cleveland clinic yesterday and meet Dr Svennson. He was offering to replace my valve through a keyhole surgery without opening the chest. The surgeons at Stanford and cedars Sinai wanted to do a full sternectomy. I'm certainly intrigued by this offer although the hospital is 2000 miles away from home.

Has anyone had experience with such a procedure?

Thanks!

 

[Cactus52]

I have an appointment next week at Emory with Dr. Miller (supposedly he developed the Keyhole procedure). I am looking forward to what others might say and I will report back!

 

[amarG]

I talked with the clinic again & its actually just a mini-sternotomy. So not a "keyhole" surgery that I thought I heard the surgeon say. Cactus52, I would love to hear what you learn at Emory.

 

[HennaD]

Hello Folks,

It's been a while since I started this original post. Thanks to all of you who provided advice. Just wanted to give you an update. I went to Cleveland clinic yesterday and meet Dr Svennson. He was offering to replace my valve through a keyhole surgery without opening the chest. The surgeons at Stanford and cedars Sinai wanted to do a full sternectomy. I'm certainly intrigued by this offer although the hospital is 2000 miles away from home.

Has anyone had experience with such a procedure?

Thanks!

I got my Mitral Valve replaced with Keyhole surgery in India about 6 months back. To my understanding it is the same surgery but with a much smaller entry route as there is no full sternotomy. Recovery time is almost halved with this technique. But do discuss with your surgeon if this is the best way to go ahead. Doctor may prefer open heart surgery over keyhole if he needs more access to perform the repair / replacement.

Just for your information, I am on a typical Indian diet (complete with garlic, turmeric, etc) with a mechanical valve. INR is not that difficult to manage once you get a hang of diet interactions with INR and adjust dosage accordingly. Pellicle and Dick0236 here have supported a great deal with this.

check if this helps

http://www.deccanchronicle.com/lifes...ays-study.html

Best wishes!

 

[Agian]

I wish I was on a typical Indian diet. We love Indian food down here.

 

[HennaD]

Would be happy to host

 

[HennaD]

Would be happy to host