Glad I found this forum! Been lurking awhile…

[Critter]

40 days ago I underwent AVR and ligature of my left atrial appendage and it has been an amazing recovery. The first week wasn’t a lot of fun, but was hospitalized 5 days. 2 days were spent in icu and 3 days on surgical floor of our heart hospital. Since then I have been walking about 2.5 miles a day now and will start some weight training no more than 20 pounds for the next month.
I just purchased an INR machine and I am looking forward till next week when it arrives. I am 63 y/o and I already feel 5 years younger and I wish I would have done this a long time ago. My valve area was done to .7mm but also had a large gradient of pressure across the valve. It was time. I was not given a choice by my cardiologist when he called me on a Sunday afternoon while he was reading echos.
I was told that I had a 50% chance of being dead in one year and was told to have it done urgently.
Glad I did it with the Onyx valve, the coumadin is not a big deal and easy to manage IMHO.
Hopefully will be able to contribute to forum.


Tony

 

[pellicle]

Hi and welcome aboard

. I am 63 y/o and I already feel 5 years younger and I wish I would have done this a long time ago

yet another vote for "do it early" ... maybe one day the surgeons will catch up on this a bit more than they have.

I was told that I had a 50% chance of being dead in one year and was told to have it done urgently.

yep, so get in early ... so you dont suffer the effects of valve degradation and mean that post surgical recovery is better.

I just purchased an INR machine and I am looking forward till next week when it arrives. ... the coumadin is not a big deal and easy to manage IMHO.

funny thing is no matter how many times you tell this to the anxious ones they just don't believe it. Its like you and me and everyone else here are part of a giant Cosmic Conspiracy on the part of Club of Rome (Mech Valve division)

Best Wishes

 

[dick0236]

I was told that I had a 50% chance of being dead in one year and was told to have it done urgently.

It does make it real when your docs give you those kinds of odds. They gave me similar odds.......25% chance of "dropping dead" and little chance of reaching age 40 (I was 30 at the time). My decision to "git 'er dun" has worked out well and I hope you have the same success.

BTW, welcome to this forum. As a medical doctor, I think you will find very little BS and some good practical insight into our common problem.

 

[Critter]

It’s pretty amazing how my chest pain right where my valve was is gone now. I can go up stairs without being winded. I can almost feel my heart remodeling as I do my walkabouts. Seriously, I had some mild cardiomegaly by chest X-ray. Cardiologist stated that should improve. Going to get a baseline echo to have something to follow. I don’t feel like I suffered from pump head thank god. I am back to work 1/2 time to make sure I do my rehab on my own with my Apple Watch and phone.

I am so thankful to be alive and so much more energetic and it should improve over next 4 months.

 

[Luckyguy17]

Welcome to the forum Critter and thank for your story.

As you, **** and Pellicle have written, if heart work is needed get it done before the symptoms, it is so much easier.
I have lived the symptoms of a failing valve and may have been in last days of life preceding my 2nd ohs. Am now only 5 days post surgery and i already feel so much better than i did presurgery.

 

[Critter]

Wow Lucky , you’re 5 days postop? Good luck to you. That first week was rough, hardest thing I have ever done. I always thought that I may be getting mental with the gradual deterioration of my BAV. It’s real for sure. My Inr is rock stable at 2.5. Told to keep it between 2 and 3 for next 3 months and then can go lower between 1.5 to 2. Told to use 81mg aspirin as it increases effects by 40% less thrombotic events. I haven’t checked for notch1 gene but my dad had abdominal aneurysm. Getting my brothers to get cardiac echo since it can be autosomal dominant.

 

[Luckyguy17]

Wow Lucky , you’re 5 days postop? Good luck to you. That first week was rough, hardest thing I have ever done. I always thought that I may be getting mental with the gradual deterioration of my BAV. It’s real for sure. My Inr is rock stable at 2.5. Told to keep it between 2 and 3 for next 3 months and then can go lower between 1.5 to 2. Told to use 81mg aspirin as it increases effects by 40% less thrombotic events. I haven’t checked for notch1 gene but my dad had abdominal aneurysm. Getting my brothers to get cardiac echo since it can be autosomal dominant.

Yes bicuspid may be hereditary and it may have taken my father at the age of 62, in the 1960 ´s dark ages of cardiac care. So fixable nowadays, once diagnosed.

in 2010, for the SJM porcine, i was on Coumadin for at least 30days or more. For some reason, with this new Edwards valve, no coumadin, no INR testing. Had plavix shots twice daily all week, now discontinued.
Little meds, metropolol, 4mg atacand, rosuvatatin are my only drugs, as well as the heparin twice daily hospital shots.

in my case, day 1 post surgery was rough some, 2-5 really no big deal, but i have had the advantage of doing this once before and also came in really sick for this ohs, so anything/surgery was the needed relief.

i actually feel pretty good and am planning for my escape. How to get by the nurses station withought attracting attention Is the key, then homefree.

 

[pellicle]

Hey Critter

Told to keep it between 2 and 3 for next 3 months and then can go lower between 1.5 to 2. Told to use 81mg aspirin as it increases effects by 40% less thrombotic events

the advice is reasonably sound. I would add however that in my view remain between 2 and 3, it is safer (On-X's advertising and playing on the psychological fears of ACTherapy).

I would encourage you to bring this up with your Surgeon when next you meet, but the idea is to "target" 2.5 (for an Aortic valve) so don't adjust your scope because one bullet landed towards the edges of the target, you work on the center of the grouping.

As a new player on the field On-X needed something to allow them to compete with St Jude, ATS and Carbomedics; they chose to play on the INR fears. The reality is that all the modern bileaflet pyrolytic-cabon valves are in the same ballpark and are all capable of seeing you down to even 1.5 for short times. Do not choose to sit there though because even with On-X you'll have issues (I suggest you read this post here, which shows that there are always some people for whom ACTherapy is not as cut and dried as it is at first explained to you (remember, the devil is always in the detials).

I believe that the certification for the lower INR limit of the On-X was as a result of pushing it through. Its good marketing but is it good medical ethics?

If you google this site you'll find a number of discussions about the PROACT study, a few

old
https://www.valvereplacement.org/th...oagulation-with-on-x-valve.42667/#post-777323
recent
https://www.valvereplacement.org/th...-with-lower-inr-range-for-on-x-valves.888015/

 

[Critter]

I love your target grouping analogy. I like to reload different calibers and that is a good way of getting consistent ballistics. Especially cool when you Chrono rounds to determine velocity. I just purchased a coag sense meter. When I get it I will check same sample on my office “roche” machine and will also send a sample into lab Corp to compare both machines and run accuracy comparisons between all 3 machines. I will probably aim for INR of 2.0. I only take 1 mg a day and my INR is 2.5. If taking care of myself keeps improving my physiology I think I will continue to be anal about it.

Tony

 

[Critter]

After reading the links to the thread that was eye opening for me. INR of 2.5 sounds perfect.

 

[pellicle]

After reading the links to the thread that was eye opening for me. INR of 2.5 sounds perfect.

unless you have some sort of personal phobia about INR or some misconception that there is any actual benefits to a lower dose of warfarin I'll point you to this (my favourite) diagram

which comes from this study
http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/415179
since you mention you may get into home testing I will recommend my blog page on that:
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
there is a lot in that so I expect you'll need a few passes on that when you get your INR testing machine.

I love your target grouping analogy.

thanks ... I don't often use it but I'm glad it worked for you. Myself I've done some 45-70 (maxing it out for my FIL who shoos moose with a Marlin and 3030.

Best Wishes

 

[Chuck C]

i actually feel pretty good and am planning for my escape. How to get by the nurses station withought attracting attention Is the key, then homefree.

Luckygu17, this is my suggestion for your escape:

 

[Chuck C]

40 days ago I underwent AVR and ligature of my left atrial appendage and it has been an amazing recovery. The first week wasn’t a lot of fun, but was hospitalized 5 days. 2 days were spent in icu and 3 days on surgical floor of our heart hospital. Since then I have been walking about 2.5 miles a day now and will start some weight training no more than 20 pounds for the next month.
I just purchased an INR machine and I am looking forward till next week when it arrives. I am 63 y/o and I already feel 5 years younger and I wish I would have done this a long time ago. My valve area was done to .7mm but also had a large gradient of pressure across the valve. It was time. I was not given a choice by my cardiologist when he called me on a Sunday afternoon while he was reading echos.
I was told that I had a 50% chance of being dead in one year and was told to have it done urgently.
Glad I did it with the Onyx valve, the coumadin is not a big deal and easy to manage IMHO.
Hopefully will be able to contribute to forum.


Tony

Welcome Tony! Thank you for sharing your story. You have come to the right place for great AVR information- incredible wealth of cumulative experience here.
We had AVR surgery around the same time- mine was 6 weeks ago today.

I wanted to say that I totally agree with Pellicle in his encouragement to avoid the 1.5-2.0 INR range. In choosing my valve I did some research on the topic and it does seem to be a marketing ploy by the makers of Onyx. This was also the view of my surgeon at UCLA, who is one of the top in the country. I ultimately decided to go with St. Jude, but I believe the Onyx is probably a very good valve and will do you just fine if you avoid the lower range of the INR.

 

[Critter]

I wonder if the lower INR recommendations come in light of fact a person is asked to take 81mg ASA at the same time. Perhaps better results are present from the anti-platelet effects of asa. As I mentioned earlier I will stay in the 2.5 INR club to be sure. I have no desire to have clots form on the valve or elsewhere. The threat of having a significant bleed is remote at that level and easily reversable.

 

[dick0236]

I wonder if the lower INR recommendations come in light of fact a person is asked to take 81mg ASA at the same time.

I had an INR range of 2.5-3.5 before I began the 81mg aspirin a few years ago and am still being managed at 2.5-3.5. Actually, my target range has been 2.5-3.5 INR since the introduction of INR. Prior to INR I was managed at a pro-time 1-1/2 times normal.....about 18 seconds clotting time (+/- 1.6 INR) as I recall. If I understood correctly, that low PT/INR coupled with going without any Coumadin, while on a 4 day vacation, led to the only stroke I've had over all these years.......and I've never had a bleed because of an elevated INR....altho I doubt I've ever had and INR much over 4 or so.

 

[pellicle]

ll. If I understood correctly, that low PT/INR coupled with going without any Coumadin, while on a 4 day vacation, led to the only stroke I've had over all these years.......

I'd say your ball and cage valve had a helping hand in that too ... but I don't think that's much of a reason to upgrade to one of the newer more "sleek" models ... ;-)

 

[dick0236]

I'd say your ball and cage valve had a helping hand in that too ... but I don't think that's much of a reason to upgrade to one of the newer more "sleek" models ... ;-)

I didn't mean to imply there was any chance of replacing my valve.......it's one of my body parts (original or man-made) that is still working "faithfully". I'm glad I still look DOWN at the grass and, for that, I'm grateful.

 

[pellicle]

Hi

I didn't mean to imply there was any chance of replacing my valve.

I didn't think you did ... I was just being "funny" ... essentially poking fun at the modern world that "needs" to upgrade something which is perfectly serviceable because its not "fancy enough". I feel and see this because I'm one who has a 15 year old motorbike and a 32 year old car. Both of which I keep running because they're quite good at what they do.

I was playing also on the views that people pick a valve because it allows them to have a single INR point lower as if that's a good thing.

Essentially I was having a bit of ironic whimsey (which I do enjoy, being at heart a Wild Colonial Boy).

Best Wishes