New member life and regrets because of the valve

[lsquared18]

Hello all. I finally found a group that people can relate to what I had when I was 23. I am 30 years post op. I had a Mitral Valve replacement with a St Judes Steel valve. The Docs tried a repair first but the repair blew three days later. I told my Cardiologist lets do steel then I dont have to worry about having another surgery. I also came down with Endocarditice blood poisoning at the same time.
Cue the Vancomicyn. Not fun for a 23 year old to go through. I have been on Coumadin/Warfarin ever since. I was active as a 23 year old but Warfarin changed my life. Not for the better. I seem to have crazy stuff happen to me on the drug. But I deal with it the best I can. At least no more surgery. Having two were traumatic enough at that age. For those on Coumadin/Warfarin how do you get by on daily activities?
I had to totally change how I operated. I wanted to be a Standardbred race driver/trainer at that time. Im still in the sport but only on the breeding and owning side. Totally not the same....
I regret that... I also have lots of other regrets about that time.
THanks for listening/reading.
Any advice for a lost soul trying to find direction?
At least my INR is good. Any of you have the Coaguecheck machine?

Lawrence.

 

[pellicle]

Hi Lawrence

sorry about your difficult start

For those on Coumadin/Warfarin how do you get by on daily activities?

pretty much as normal, but then I have been able to live with understanding INR and managing it myself. A well managed INR is the key.

Any advice for a lost soul trying to find direction?

its a long and slow road and you probably have a lot of things to undo. So I suggest talking (to us even) as well as listening.

I found a lot of solace in philosophy because as an evidence based (not faith based) person I deal better with tangibles.

Stoicism, Absurdism (Albert Camus) and understanding the psyche all helped me in my hardest times

At least my INR is good. Any of you have the Coaguecheck machine?

that's good ... I also use the Coaguchek ... frankly I'm glad I didn't have to do INR without it.



Best Wishes

 

[lsquared18]

Thanks pellicle greatly appreciated your advice. I'm taking things day by day trying to concentrate on the things I love to do. For me I think thats the best foot forward.
At this point I do my CoaguCheck testing once every two days for accuracy purposes.
I am wondering how often do you test?

again thanks for your advice. .

 

[pellicle]

I am wondering how often do you test?

Typically I test weekly and only test more frequently if there is a problem or a specific reason.

https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
https://cjeastwd.blogspot.com/2015/10/managing-my-inr-example.html
HTH

 

[dick0236]

Hello all. I finally found a group that people can relate to what I had when I was 23. I am 30 years post op. I had a Mitral Valve replacement with a St Judes Steel valve. I

Lawrence.

Are you 30 years OR 30 days post-op? Sometimes it can take a while to get warfarin leveled sorted out.

If your INR is good what other problem are you having? Most people can return to a normal life after OHS(open heart surgery). Why do you think you can't return to driving a buggy behind a horse (I can't think of the name for this type racing). What have your docs advised?

I tried to remove this post but couldn't. I just saw your post in another thread which answers my questions. I can't help with your current issues because I have never experienced them but I am sure that others may be able to give you some info

 

[lsquared18]

I am 53 years old I have had the Valve for 30 years.. I received the valve when I was 23 years old. Even during the first five years of having the Valve in place my INR was erratic. Its better today but not perfect. Especially when I get a Celiac attack. My INR shoots way up to 4.7 - 6.7... I cant explain why that happens.
My docs told me no contact sports and driving standardbreds is heavy contact especially if an accident happens during a race.. IF the accident didnt kill me my cardiologist would LOL... I was her first patient ever she was 26 I was 23. So we have a sister brother relationship which is great. But she is protective of me which is understandable...

 

[3mm]

any advice for a lost soul trying to find direction?

Set a goal. Break that goal down into concrete tasks. Develop a plan to accomplish those tasks. Start working the plan. A year ago I came out of the hospital after having endocarditis. I had to use a walker to get from my bed to the bathroom. My goal was to be physically active again, so I defined tasks. Once around the block with the walker. Twice around the block with the walker. Walk with crutches. Walk with a cane. Walk without assistance. pushups against a counter. Pushups on my knees. And so on.

You've taken a good 1st step by asking for information. I encourage you to consider your goals, and then your plans. Good luck!

 

[dick0236]

I can understand your frustration. I got my valve when I was 31 and had graduated college 2 months before my surgery in 1967. All of my post-grad plans went up in smoke when my docs told me to find employment with a large company with a lot of group insurance.......and I did. Then I spent the next decade hating the job I took. I eventually lost that job, after my stroke.......which was the best thing that ever happened to me........I found a job that offered me a nice income and a sense of pride in my employment. I've heard that "whenever one door closes, another opens".

My INR range is 2.5 to 3.5 and I am happy when I am anywhere in that range.....or close. I have never had an INR close to 6.7. If it is your other medicines causing the INR swings, increase your warfarin to come back to your range.....and then work with your cardio for a solution to adjusting your meds if possible. If not, increase your warfarin to whatever it takes to stay in your INR range.

It may be that you will have to give up your riding if it is that dangerous. So be it. I am almost 88 years old and am here only because I got a mechanical valve when I was young.

 

[V__]

Any advice for a lost soul trying to find direction?

Intentional daily walks are good, especially in in nature, if possible. the practice is only useful in 5-6 different ways, but they are all important

Set a goal. Break that goal down into concrete tasks. Develop a plan to accomplish those tasks. Start working the plan.

That's a very good advice. They way I think about it, it's important to work toward achievable goals which are not too easy.

 

[Joseph]

Welcome aboard, I also came across the forum just this year and was happy to find kindred souls (or at least people who understand some of the challenges of OHS).

I self-test my INR (thanks in part to support from the group here) and I've never let being on Coumadin change my activities. I'm obviously more cautious in situations that could lead to broken bones or trauma but still try to get the most out of my post-op life. I don't let it stop me from travelling, hiking, gardening, or using my table saw. The only time it was an issue was when I went skydiving and the site required an EMT be present in case I twisted my ankle on landing. Of course, it's easier for me to say as I never had dreams of horse racing (cars though..) so didn't have to give up a passion due to anticoagulants. Obviously you stayed engaged in the field but I understand it's not the same level of satisfaction.

That being said, personally I did (finally) get my **** together at 29 thanks to the shock of almost dying. Set career goals, bought a house, broke off bad relationships, and found the spouse of my dreams (who I am still happily married to). Now I'm recently retired and moving on to the next phase of my life, whatever that may be.

Plenty of regrets both pre- and post-op but that's life and I can't change the past so try not to dwell on it (again, easy for me to say). We all have our own experiences and anxieties, share and take comfort in whatever therapy works for you (professional or friends or commiserating with strangers on the internet).

No slight to @pellicle, as I'm firmly in the absurdist camp, but my foundation is more Monty Python than Camus

 

[lsquared18]

I can understand your frustration. I got my valve when I was 31 and had graduated college 2 months before my surgery in 1967. All of my post-grad plans went up in smoke when my docs told me to find employment with a large company with a lot of group insurance.......and I did. Then I spent the next decade hating the job I took. I eventually lost that job, after my stroke.......which was the best thing that ever happened to me........I found a job that offered me a nice income and a sense of pride in my employment. I've heard that "whenever one door closes, another opens".

My INR range is 2.5 to 3.5 and I am happy when I am anywhere in that range.....or close. I have never had an INR close to 6.7. If it is your other medicines causing the INR swings, increase your warfarin to come back to your range.....and then work with your cardio for a solution to adjusting your meds if possible. If not, increase your warfarin to whatever it takes to stay in your INR range.

It may be that you will have to give up your riding if it is that dangerous. So be it. I am almost 88 years old and am here only because I got a mechanical valve when I was young.

Ive given up riding. I still own and breed and manage the stable so im still in it somewhat. But thats a part time gig at night mostly watching the races. I have a full day to fill. I run a facebook group page that has over 4k members. But am looking to put that towards a real website and create a podcast with guests each time. Im looking for away to do that as I am not versed in web design... That will take up a lot of time and im excited about that...

 

[lsquared18]

Set a goal. Break that goal down into concrete tasks. Develop a plan to accomplish those tasks. Start working the plan. A year ago I came out of the hospital after having endocarditis. I had to use a walker to get from my bed to the bathroom. My goal was to be physically active again, so I defined tasks. Once around the block with the walker. Twice around the block with the walker. Walk with crutches. Walk with a cane. Walk without assistance. pushups against a counter. Pushups on my knees. And so on.

You've taken a good 1st step by asking for information. I encourage you to consider your goals, and then your plans. Good luck!

thank you so much... This is exactly what I am currently working on... So hopefully it will work out. I seem to sabotage myself from time to time... but here's hoping things change.

 

[pellicle]

but my foundation is more Monty Python than Camus

oh, Brother

we are so on the same page

Ecce homo, ergo elk. La Fontaine knew his sister, and knew her bloody well.​

 

[pellicle]

That being said, personally I did (finally) get my 5hit together at 29 thanks to the shock of almost dying. Set career goals, bought a house, broke off bad relationships, and found the spouse of my dreams (who I am still happily married to). Now I'm recently retired and moving on to the next phase of my life, whatever that may be.

I just wanted to clarify it was this bit I really wanted to (not just) like (, but scream "go, Go GO-O-O " from the sidelines of the football game called Life)

 

[Chuck C]

Welcome to the forum Lawrence!

Like you, I have a St Jude mechanical vale. Mine is in the aortic position and was put in about 33 months ago. It is always encouraging to hear from people like you who have had their mechanical valve so long. I

For those on Coumadin/Warfarin how do you get by on daily activities?

I get by about the same as before I was on warfarin.

These are the things that I did before warfarin and still do: Brazilian Jiu Jitsu, running, biking, riding waves at the beach and boxing. The one thing I've changed is that I go lighter on the boxing. We only use the 16oz gloves in sparring. I also make sure that I am near the low end of my INR range, or I skip the boxing for the week. I would occasionally spar some hard rounds, before being on warfarin, so that has changed as we do mostly training rounds, but there is definitely a lot of contact. We punch eat other, just not hard.

Other than the boxing, all the other sports I do about the same as before warfarin. I guess if I am running on a downhill trail I do so with more caution now. Also, I don't push to the high end of my heart rate when training as I did from time to before warfarin. Some might call this interval training or HIIT. I still do HIIT, but I don't push even close to 100% anymore, just as a precaution to be gentle on my new parts.

So, I've made a few adaptions, but don't feel that I have really had to sacrifice much.

IF the accident didnt kill me my cardiologist would LOL... I was her first patient ever she was 26 I was 23. So we have a sister brother relationship which is great. But she is protective of me which is understandable...

That is great that you have such a good relationship with your cardiologist. However, I do wonder if she's a little over protective. She obviously knows your situation better than we do, so I am not suggesting that you cross the boundaries that she has given you, but I imagine that you could be more active if you wanted to. My cardiologist did not put many restrictions on me as far as being physically active, just told me to be sensible about it. I have tried to. I guess if I wanted to be extra extra safe, I could give up the boxing, jiu-jitsu, running and biking. But, there is a little risk in so many things we do. Even driving to the grocery store carries some risk. If I wanted to remove the risk of getting in a car accident I could decide to never get in a car. Some people actually rarely leave their homes out of fear of getting hurt- and I'm talking about the general public, not just warfarin users.

I think that we all take the risks we are comfortable with. I choose to be active, and there is some risk in that. I believe the risks I take are relatively small and also that the health positives I get from being physically active far outweigh those risks.

 

[lsquared18]

HI Chuck.. thanks for your reply... My Cardiologist is over protective. But under the circumstances I like it that way. It gives me reassurances. I like to be on the high side of INR meaning closer to 3.5 this way I can have my greens. Which I try to on a daily basis. Be it a salad, broccoli, etc.. Being celiac positive and having an INR issue is tough. So I have to keep a narrow bridge.
Activity wise I am going to be changing things up a little bit by doing some more walking and some archery we have a Combat Des Sport where I live in Montreal Quebec. They have a axe room and a breakables room as well. Muscle and aggression work would do me good. Back in the day I was active in Tennis until my hip gave out due to me having scoliosis. Even when I drive I always look out for the potentiality of accident. It is life but it is my life at the moment.

 

[pellicle]

Being celiac positive and having an INR issue is tough. So I have to keep a narrow bridge.

that is indeed an issue and something which is sufficiently "an issue" to make clear up front in any discussion on INR and range. If one was medically diagnosed with the celiac condition and one was in one's 50's it might even warrant being considered "contra indicated for anticoagulation therapy".

I know understand better your issues.

Even when I drive I always look out for the potentiality of accident. I

me too, although sometimes on a motorcycle they come too fast to even observe (such as when I got doored by a car) and (of course) flung off, bounced off the side of a van and came to rest in the back (boot we call it) of a (police) car. I awoke and my first question was "what happened"

I got a broken wrist (but got to keep all my fingers) and damage to C1/C2 surfaces (fracture) from the impacts

Best Wishes

 

[Chuck C]

me too, although sometimes on a motorcycle they come too fast to even observe

Especially when you ride on the wrong side of the road, as ya'll tend to do in Australia

 

[pellicle]

Especially when you ride on the wrong side of the road, as ya'll tend to do in Australia

what else would you expect from people who are standing upside down all the time ;-)

 

[David Robbins]

Hello all. I finally found a group that people can relate to what I had when I was 23. I am 30 years post op. I had a Mitral Valve replacement with a St Judes Steel valve. The Docs tried a repair first but the repair blew three days later. I told my Cardiologist lets do steel then I dont have to worry about having another surgery. I also came down with Endocarditice blood poisoning at the same time.
Cue the Vancomicyn. Not fun for a 23 year old to go through. I have been on Coumadin/Warfarin ever since. I was active as a 23 year old but Warfarin changed my life. Not for the better. I seem to have crazy stuff happen to me on the drug. But I deal with it the best I can. At least no more surgery. Having two were traumatic enough at that age. For those on Coumadin/Warfarin how do you get by on daily activities?
I had to totally change how I operated. I wanted to be a Standardbred race driver/trainer at that time. Im still in the sport but only on the breeding and owning side. Totally not the same....
I regret that... I also have lots of other regrets about that time.
THanks for listening/reading.
Any advice for a lost soul trying to find direction?
At least my INR is good. Any of you have the Coaguecheck machine?

Lawrence.

Hi Lawrence-
I'm have the same philosophy. 25mm St Jude implanted July 27, 2008. On Coumadin since then and self test. Always adjust the Coumadin, not the diet. If you followed the doctors recommendations, we may not develop clots, but we may be malnourished without some of the foods they advise to limit. I too, keep my INR on the high side close to 3.5 INR because of the fear of a stroke. I actually had a brain aneurysm during my bout with endocarditis, so fear of a stroke is much greater. I have no regrets over choice of valve. I still do as much vigorous exercise as I did before(weight lifting, running, hiking, kayaking). Another area that doctors like to advise against, because of a fall or increased pressure on the heart. I can still do all of these things as well as most men half my age, so I credit good genes, extensive research and perseverance as the main reasons.
I would not give up on those goals of becoming a Standardbred race driver/trainer. I am studying to be a personal fitness trainer and will be training serious competitive powerlifters/bodybuilders and athletes.
My only regrets is that I was knocked back on my goal of breaking the 5 minute mile by 55. I was hospitalized at 53 and was so deconditioned after 4 months hospitalization that my mile times were 12-15 minutes. Getting back the elite speeds would have been possible, but the brutally harsh training didn't seem worthwhile at 54, given that walking, hiking, biking and kayaking could satisfy my aerobic needs. I'm 69 now and haven't had any health problems, although my joints occasionally ache from 40 years of running and 50 years of weight training.
My opinion is that most doctors knowledge of physical fitness in minimal and that most dietitians knowledge of an athletes nutritional needs are also minimal.
Don't let the professionals limit your quality of life with poor advice. Work it to the limit, but listen to your body, recognizing the difference between induced pain and normal pains of aging. Make adjustments and stay on that horse(pun intended)
Stay the course and good luck and have a long and quality life.
David Robbins