Second BAV surgery within the year...any helpful insight/recommendations

[Ske1973]

I had my bicuspid aortic valve repaired using the mini-sternotomy at the Clev. Clinic in April 2015. The valve has continued to worsen since the surgery and it is now to a point where it is regurgitating blood just as bad as before the sugery (graded a 4+). My left ventricle is also severely dialated once again. I have read many of the posts on this blog and there is quite a bit of helpful information. I have selected to go with a mechanical valve replacement and based on my research it sounds like the On-X valve is the way to go. Like many of the posts on this blog, my primary concern with a mechanical valve is that I will have to be blood thinners the rest of my life. I will plan to home test my INR. Here are a couple of questions that I have.

1. For those that have had multiple surgeries (such as two in one year) any helpful advice/insight/recommendations? My first recovery was not too bad, and I'd prefer that to be the case with my next one as well.
2. How soon should I plan to start home testing my INR? I'm thinking a good approach may be to home test and go to a clinic for the first 2 - 3 months so that I can get it regulated. I would then drop the clinic once it's stable.
3. Does anyone know if Aetna or Medical Mutual pay for home INR testing?
4. I'm assuming that the Cleveland Clinic uses the On_X valves...can anyone confirm? I will discuss this with my doctor, however, I don't go back for another week.

Thanks in advance for the help!

 

[Lawdog]

Ske: Sorry to read you have to go under again. I am still recovering from my first and hopefully only OHS. I received an ON-X, but my hospital, Massachusetts General Hospital, does not normally use them. I had to ask my surgeon to make an exception, which he was happy to make. Was your April, 2015 valve a tissue valve?

 

[cldlhd]

Ske: Sorry to read you have to go under again. I am still recovering from my first and hopefully only OHS. I received an ON-X, but my hospital, Massachusetts General Hospital, does not normally use them. I had to ask my surgeon to make an exception, which he was happy to make. Was your April, 2015 valve a tissue valve?

I think the original valve was repaired.

 

[almost_hectic]

Oh man, I'm so sorry to hear your repaired valve hasn't worked out. Myself I hope to never ever have to experience open heart surgery again. I've already stated it in other posts but I chose the ON-X mechanical valve for that very reason. my surgery was only 4 weeks ago so I'm still looking. To find out about self testing too. I think a positive way to look at your situation would be if you had a pretty good recovery the first time, the second time around might be even better. It will be different because you'll be on blood thinners this time, but for the most part you'll already know what to expect and can be the best advocate for your speedy recovery. Best of everything, hang tough!

 

[Tank]

I do remember that after my 1st AVR which was a bovine, I had to have my INR checked 3x a week as it was constantly changing. I am now 4 wks post-op on a mechanical valve and have had my INR checked only 4x in the last 3 wks since I have been home. I am checking at 2 wk intervals at this time and should possibly go to 1x per month here shortly. I don't know if this is common or maybe my diet is the reason I am getting checked at 2 wks now. Anywho, I know I'll need to be on it forever but if I only have to check once a month, that's not to bad, myself I'll probably use the clinic method as that is more reliable than the home detection from what I've heard. Thanx,Tank

 

[pellicle]

Hi Tank

I know I'll need to be on it forever but if I only have to check once a month, that's not to bad, myself I'll probably use the clinic method as that is more reliable than the home detection from what I've heard. Thanx,Tank

personally I'd be checking more than monthly and most places in the western world are encouraging all their peoples (who are competent) over to self monitoring because its quite reliable and more frequent checking does provide better outcomes.

Its also cheaper too, so as health care in the USA runs out of money don't be surprised to find they encourage you that way too. Personally I wouldn't want it any other way (self testing)

 

[Ske1973]

Cldlhd, correct, my valve was repaired during my first surgery. Thanks for the info. everyone.

 

[cldlhd]

Cldlhd, correct, my valve was repaired during my first surgery. Thanks for the info. everyone.

I'm sorry to hear about your situation.I'm pretty sure there are people out here who have had 2 surgeries in a year .
I had my valve repaired in Feb 2015 at the HUP ( Hospital of the University of Pennsylvania) .

 

[cldlhd]

Hi Tank



personally I'd be checking more than monthly and most places in the western world are encouraging all their peoples (who are competent) over to self monitoring because its quite reliable and more frequent checking does provide better outcomes.

Its also cheaper too, so as health care in the USA runs out of money don't be surprised to find they encourage you that way too. Personally I wouldn't want it any other way (self testing)

Well I guess it depends. The insurance companies that pay for it would probably prefer home testing but the lab would likely be against it. One person's savings is another person's loss .

 

[ottagal]

Ske1973,
I very sorry to hear about your situation.
A forum member who comes to mind who had 2 AVR surgeries within a year was The Thief. You may want to private message him.
All the very best,

 

[Ske1973]

Thank you ottagal.

 

[Heart Of The Sunrise]

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[Heart Of The Sunrise]

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[Heart Of The Sunrise]

Sorry to hear about your need for a second OHS. I am 30 months post-op with my ON-X valve. I was able to home test a little over a year post-op. I was fortunate that my insurance covered the cost of the Coaguchek XS meter and supplies. It was hand delivered and a RN instructed me on how to use it. My insurance also covers the cost of the test strips. This is so much better than having a blood drawl at a lab. I test every two weeks. Original desired INR range was 2.0 to 2.5. Now with the recent FDA approval for 1.5, my new range is 1.8 to 2.2. Best of luck.

 

[pellicle]

Hi

I thought I'd replied to this, but something must have gone wrong between me and there ...

I had my bicuspid aortic valve repaired using the mini-sternotomy at the Clev. Clinic in April 2015. The valve has continued to worsen since the surgery and it is now to a point where it is regurgitating blood just as bad as before the sugery (graded a 4+...valve is that I will have to be blood thinners the rest of my life. I will plan to home test my INR. Here are a couple of questions that I have.

1. For those that have had multiple surgeries (such as two in one year) any helpful advice/insight/recommendations? My first recovery was not too bad, and I'd prefer that to be the case with my next one as well.

I expect it to be about the same. I've always had more than 10 years between surgeries, but from speaking to people who have had valves taken out quickly due to endocarditis they report its about the same as the first recovery.

2. How soon should I plan to start home testing my INR? I'm thinking a good approach may be to home test and go to a clinic for the first 2 - 3 months so that I can get it regulated. I would then drop the clinic once it's stable.

it all depends on you and how you feel. Myself I was not reliable in some cogniitve processes for at least that time. I would struggle to do maths on paper without a calculator and made mistakes which I picked up only on double check. If you have a partner to work with that would be good. You need to be sure of what you are doing ; methodical ; consistent ... then you'll get good results.

have you read my blog post on managing INR? Its quite lengthy but treat it as a resource than a "quick skim".
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html

4. I'm assuming that the Cleveland Clinic uses the On_X valves...can anyone confirm? I will discuss this with my doctor, however, I don't go back for another week.

how did it go?

Best Wishes

 

[Ske1973]

Pellicle and Heart of the Sunrise, thanks for the information. I had another stress test last week and the results indicate that the function of the BAV continues to decline. I will be scheduling my AV replacement for early November. I did confirm that the Clev. Clinic uses the On_X valve, so that's what I'll be going with. Thanks again for the information and well wishes!

 

[Ske1973]

Pellicle and Heart of the Sunrise, thanks for the information. I had another stress test last week and the results indicate that the function of the BAV continues to decline. I will be scheduling my AV replacement for early November. I did confirm that the Clev. Clinic uses the On_X valve, so that's what I'll be going with. Thanks again for the information and well wishes!

 

[Ske1973]

Pellicle and Heart of the Sunrise, thanks for the information. I had another stress test last week and the results indicate that the function of the BAV continues to decline. I will be scheduling my AV replacement for early November. I did confirm that the Clev. Clinic uses the OnX valve, so that's what I'll be going with. Thanks again for the information and well wishes!

 

[harrietW]

Terrible sorry to hear about your value repair not being very successful. I see my Surgeon Tuesday tomorrow. I need both mitral and aorta vale replacement. In our discussion tomorrow if repair becomes a topic rather than replacement l think l will now have a reasonable argument against repair period. It was mentioned in conversation about a year agothat possibly on replacement one repair. It has or both valves have since worsened substantially.
Again l am very sorry and have no knowledge or experience to offer you, however you most curtainly have given me great insight. Thx you !
Best regards,
Harriet

 

[Ske1973]

harrietW, I hope my outcome alone doesn't steer you in one direction or another. Based on feedback from my cardiologist, I was told that my outcome was atypical. From what I understand, a repair is likely to last 10 years. Unfortunately, my cardiologist couldn't say how long it typically lasts, since he didn't have the long-term data to support it and everyone's health and circumstances are unique. I wish you the best of luck with your upcoming surgery!