Help with my decision

[Bridgette]

Forgot to say in my earlier post - good luck with your decision and your operation Ross3.
Whichever valve you end up getting, I am sure you will do fine.

Bridgette

 

[Ross]

Ross honestly, if the medical profession were on the same page across the board and everyone actually knew how to dose properly and manage properly Coumadin, you'd see a big difference in the stats and information your hearing and reading. It is the largest problem that exists today. Al Lodwick is running around the country giving seminars and I hope every where he goes, they finally get a clue and start dosing properly.

 

[Bina]

My surgeon and I chose Mechanical.
I really liked the idea of a Tissue Valve but knew I needed to avoid re-ops as much as possible. Anesthetics almost kill me.
Coumadin is no problem for me at all and I live in a rural farm area.
We have a great town doctor who is very sensible and knowledgable about ACT. He started me off well, what a blessing.
And when I got my home tester last year he let me control my testing. I told him that VR.com had educated me.
That has made a huge difference for me. This is my life with my choices.
Best wishes going out to you Ross3.

 

[Magic8Ball]

ACT is a none issue for me, i've been in range since my discharge over 18 months ago. By range i consider anything between 2 and 3.5, usually i hover on 2.7 but on the change of season i can have a couple of weeks when i adjust to the new temperatures outside and can jump/drop to the outer part of my range until i adjust.

Usually i'm on 5mg a day during summer but now its winter i'm on 5,5,5,4,5,5,5,4 repeating.

I still drink, probably a bottle of wine on a friday and a bottle on a saturday then a couple of glasses during the week on occasion (one last night). I have gone to the level of 1 bottle a night for 6 nights and not had an INR blip.

I've given up my motorbike and doing martial arts as the risk/benefit analysis wasn't good enough for me. Still active and lift weights, go to the gym, cycle, swim...its purely contact sports and potential hard impacts i avoid.

Other than that it's fine, no issues, nada.

I've cut myself and bled no more than normal, i've dropped stuff on my feet/legs/arms and not bruised at all never mind excessively.

I'd choose mechanical again, the surgery was ok so going tissue would not scare me re the surgery but the stress for the family etc was bad so choosing mechanical has the possiblility of not having them go through that stress again.

Would probably have gone on-x if it had a factory attached dacron graft but it didn't....this st-jude is a bit noisy but i'm used to it.



Good luck with your choice.

 

[witzkeyman]

If you smoke or drink a lot get a tissue valve. Otherwise, good luck tomorrow.

 

[Marty]

Mitral repair,tissue, mechanical, ON-X???

Mitral repair,tissue, mechanical, ON-X???

Thanks for the feedback ? everyone! This forum is such a great thing in that there are so many willing and interested to share their valuable knowledge. I found every comment to be very informative and really provide a view into that ?first person perspective? I was seeking.

Besides learning quite a bit about ?life on Coumadin? I am also amazed at some of the other things that have turned up on this thread to include Ross?s amazing story and dick0236?s 41 year old valve!

AlCapshaw2, I?d never heard that pre-1990 ACT wasn?t really managed in a scientific way. One can only imagine how far out of range people must have been without any means of measurement. Seemingly this could account for some substantial amount of adverse events (clots/bleeds) which would skew the older studies. It?s a wonder that this isn?t more prominently noted in the studies since it could bear so much on the outcomes and conclusions.

Marty ? it?s interesting that your surgeon chose a mechanical valve for a 72 year old because so much of what I?ve read suggests that the ?standard? at that time was for tissue > 65. Maybe your surgeon thought that you looked more like 62!

Ross

Ross, I think he did think I might last a while and one more thing. The tissue valves being made then were touted as good for 8-10 years, but he said he had a couple that barely lasted two years. My surgeon wrote the book on mechanical valves and may have been a little biased. I think they have dramatically improved tissue valves since then and they last 15 -20 yeqrs now. My surgeon says he still would Rx ACT for ON-X

 

[cday]

I eavesdropped on this thread. I appreciate your experiences on coumadin because since my husband got a tissue valve at 49 we know there is a re-op in the future. But we are hoping that the procedures will advance to make it less invasive OR the no coumadin studies will have a positive result. (Thank you to all you test rats that have gone before.)

So, even though we chose tissue this time we would be open to all options again next time.

Ross3, saying a prayer for you as you are in surgery today.

Ross numbero uno, glad to read your story - wow! your wife! hope you kiss her feet every day -- no wait! hope you clean the kitchen every night for her.

Cindy

 

[ALCapshaw2]

SNIP
AlCapshaw2, I’d never heard that pre-1990 ACT wasn’t really managed in a scientific way. One can only imagine how far out of range people must have been without any means of measurement. Seemingly this could account for some substantial amount of adverse events (clots/bleeds) which would skew the older studies. It’s a wonder that this isn’t more prominently noted in the studies since it could bear so much on the outcomes and conclusions.

Ross

I may have been a bit overly dramatic about the lack of "scientific management". Before the INR measurement technique was developed in the early 1990's, clotting time WAS measured by mixing drawn blood with a chemical reagent and reported as Prothrombin Time ("PT").

The problem with this technique was that results were mixed and bleeding / strokes did result. It was finally realized that there were variations in the reagent itself which lead to inconsistent and often inaccurate results. I am not sure when this system was introduced (Does anyone know?).

I expect the "blood in urine" and "stroke" indicators were the standard in the 'Early Days' of anti-coagulation. I'm sure AL Lodwick could tell us more about the historical evolution of anticoagulation management. Maybe it's even on his website, www.warfarinfo.com

'AL Capshaw'

 

[dick0236]

Al - I was on the old Pro-Time system from my surgery (1967). As a "lay person" I never understood the system, and of course there was no internet. The procedure was much like today. Blood sample was drawn from my arm and was tested against a "standard" for that day. In my case, they wanted me to stay about 1 1/2 X Standard. The "blood in urine" test was not a common occurence but it did occur. Once I had it happen while my wife and I were in Spain(1982). That was a real thrill when I thought I might need medical help and I spoke no Spanish. Fortunately, stopped Coumadine, drank lots of water, and system cleared up. Got a Pro-Time as soon as I got back to states.

FWIW, many doctors and labs still refer to the INR test as a Pro-Time.

 

[Jkm7]

My father was on coumadin back around 1962. I was a kid and he was a very young man who had a series of heart attacks. I can only guess why they had him on coumadin in those early years of its use but perhaps he was one of the early experimental users.
He died in 1964 so no long history about it to refer back to.

Maybe we, today, owe him a thank you for taking part in early studies? I don't know. Wish I knew more about it. (I do recall they took away his razor and made him use electric shaver...... some folks managing coumadin are still back in the early '60's apparently.)

 

[Jkm7]

FWIW, many doctors and labs still refer to the INR test as a Pro-Time.

My neighbor is the lovliest woman and a retired RN. She was recently started on coumadin for a-fib. She refers to her INR tests as Pro-Time whenever she mentions it to me.

 

[Karlynn]

I think it was Blanche that explained this to me and I may get it somewhat wrong - but technically the INR is the "internation way" of measuring the PT or Pro-Time which is the prothrombin time. So technically the use of the word "Pro-Time" is correct (or PT) as it were, but it can also denote the older way that the prothrombin time was measured. I know other testing nuances come into play - but I'm not a phlebotomist.

If your doctor is giving you PT times of 30.0 or 24.0 and not INR (which would be about 3.0 or 2.4) it could show they are stuck in the 20th century, particularly if they say they don't trust INR's (which I saw here once).

 

[Bina]

Ross has in the past posted some "fancy" explanations of the INR and PT.
All I remember is that INR is International Normalised Ratio, and reagents may differ from one method to another.
That is why it is best to stick with one method and/or machine for testing.