New member! Aortic root replacement with mechanical valve

[ChuckM]

Just searching around the net for suggestions on a tongue bite and I came across this site. What a comfort to know so many others are in the same position. I'm 51, and 2 years ago following a random suggestion of having a calcium score run by my GP, they discovered a nearly 6cm dilated aortic aneurysm. 49 years of bicuspid aortic valve apparently stretched me pretty thin, not to mention they found blockage in one artery and scheduled up a CABG as well. Surgeon suggested at my age mechanical with the downside being warfarin therapy for the rest of my life (maybe this will change one day?), so here I am.

Anyway, I'm 2 years following surgery. I've come to take comfort in hearing my valve (but a sound machine helps at night). I'm not into skiing or skydiving so I'm not at a loss for those things. My therapy is provided monthly by hospital, but I drink on occasion and still like spinach and broccoli. Just annoying when I bite my tongue or get a scrape that wont stop. I find that styptic pencils work well for shaving cuts and other small things that won't stop at bedtime when you don't want to sit around for an hour waiting. Today was the second time I've bit my tongue and the ice and compression seemed to work well last time around. It stopped eventually.

Thanks for the suggestions, look forward to reading about yall's experiences.

 

[pellicle]

Hi Chuck and welcome

My therapy is provided monthly by hospital, but I drink on occasion and still like spinach and broccoli.
...
Thanks for the suggestions, look forward to reading about yall's experiences.

not sure what suggestions you sought (I did re-read it) but from the point above I'd say:
drinking in moderation is entirely fine (I have been drinking in moderation with occasional "never do that again's" since my 2011 surgery which left me on warfarin) and I regularly eat greens.

There is much written about what to do on warfarin (probably 90% of it) that's somewhere between simply wrong and verging on pernicoius. For instance on the eating greens thing:

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC4998867/
So I'm going to say you should eat a balanced diet and you should get involved in self testing and aim towards self administration.

Why? Well if you're invested in what happens to you, then there is no better way than to make INR monitoring and testing part of your life. Consider a diabetic; how many of them would eschew self testing and being involved in their glucose management? Yep ... that's right, the ones who are unhealthy and in terrible shape. Sort of goes hand in hand doesn't it.

I'll leave you with a blog post I wrote some years back (2014) to work your way through on the subject of INR testing

https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
Best Wishes

 

[ChuckM]

Hi Chuck and welcome


not sure what suggestions you sought (I did re-read it) but from the point above I'd say:
drinking in moderation is entirely fine (I have been drinking in moderation with occasional "never do that again's" since my 2011 surgery which left me on warfarin) and I regularly eat greens.

There is much written about what to do on warfarin (probably 90% of it) that's somewhere between simply wrong and verging on pernicoius. For instance on the eating greens thing:

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC4998867/
So I'm going to say you should eat a balanced diet and you should get involved in self testing and aim towards self administration.

Why? Well if you're invested in what happens to you, then there is no better way than to make INR monitoring and testing part of your life. Consider a diabetic; how many of them would eschew self testing and being involved in their glucose management? Yep ... that's right, the ones who are unhealthy and in terrible shape. Sort of goes hand in hand doesn't it.

I'll leave you with a blog post I wrote some years back (2014) to work your way through on the subject of INR testing

https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
Best Wishes

Thanks so much for the reply! I'm getting more and more comfortable with my situation daily (do I have a choice?!), and really when I came across the site in a search I thought it would be nice to join, and it seems customary to introduce ourselves, so I followed suit.

Thanks for the links on the information. I've maintained a pretty good balance in the past year. I ran afoul on vacation last year, sitting on the beach daily drinking way too much beer (thinking I was superman and rules didn't apply). By the last day of vacation I started passing blood and figured I'd done a doozie. Slammed a couple of bags of frozen spinach and headed to the Anti-Coag nurse who confirmed it was a bit high. I've since learned my lesson.

For the time being my ant-coag visits aren't a terrible inconvenience and with insurance only run me $10 a month. So its a small price to pay that I'm willing to put off on the costs of my own INR machine. However I am curious about others who have purchased one, where from and what to expect on costs. I've looked over new, gently used and used on sites such as Ebay. I've learned the tabs are keyed to the chip and thats part of the process, so you can't buy too large of a supply or it'll expire. But at the prices even used it would be some time at $10/month for me to equal out the fees, much less the information from the nurse is included.

My only other concerns come when I do start to bleed. I just have this fear that my wife insists I need to get past. I'm sure she's correct, but i tend to spin out of control when something bleeds that I know about but can't seem to do much about (tongue bites, nose bleeds, bumps and bruises that cover a large area). I guess it comes with the territory, and I'll get past it slowly but surely. Until then I'll continue to read here.

Thanks for letting me in the group.

 

[pellicle]

My only other concerns come when I do start to bleed. I

Warfarin doesn't cause bleeds it simple exacerbates them. So you won't just start bleeding. You'll do something like walk straight into the towbar of your 4wd, and if you don't RICE it promptly you'll get a worse bruise than you would have been

Same thing goes for concussion, you get solid blow to the head by you should prudently present to ER

 

[dick0236]

Welcome to this forum. You will find a lot of good advice here altho after two years post AVR you probably have a pretty good handle on living with a mech. valve. BTW, you are pretty much in the middle of the age range of the members of this group.

 

[ValveAdmin]

Welcome to the forum, Chuck. Glad to have you here. Hope all is well!

 

[Zoltania]

Bleeding can be scary and anxiety-inducing, especially after OHS, even if it's only minor. I use a few techniques that have been helpful in dealing with that anxiety:

• observing myself having the feeling of anxiety, like a view from above, thinking "there you go again," i.e. becoming a detached observer
• telling myself that the feeling is transitory, that it will pass and I will feel fine again
• thinking of a pie chart or Pareto diagram, where the odds are 99+% that this is nothing serious
• on a more practical note, applying pressure for a good long time if it's in a spot that I can put pressure on.

I'm a blood donor, and once when I was removing the pressure bandage after the recommended four-hour wait, I didn't notice that I had pulled off the scab. Ten minutes later I looked down at my arm and saw that my shirtsleeve was soaked with blood in about a four-inch band around my elbow. That was definitely scary! But a few minutes of pressure fixed it right up. (There may have been a drink involved afterward too.)

 

[ChuckM]

Bleeding can be scary and anxiety-inducing, especially after OHS, even if it's only minor. I use a few techniques that have been helpful in dealing with that anxiety:

• observing myself having the feeling of anxiety, like a view from above, thinking "there you go again," i.e. becoming a detached observer
• telling myself that the feeling is transitory, that it will pass and I will feel fine again
• thinking of a pie chart or Pareto diagram, where the odds are 99+% that this is nothing serious
• on a more practical note, applying pressure for a good long time if it's in a spot that I can put pressure on.

I'm a blood donor, and once when I was removing the pressure bandage after the recommended four-hour wait, I didn't notice that I had pulled off the scab. Ten minutes later I looked down at my arm and saw that my shirtsleeve was soaked with blood in about a four-inch band around my elbow. That was definitely scary! But a few minutes of pressure fixed it right up. (There may have been a drink involved afterward too.)

Definitely the two things that I probably struggle with the most. The anxiety that arises with each little pain or pressure, is it the big one, etc. The innocence before surgery is gone, you come face to face with your mortality and its scary as heck. I will keep these for next time.

As for the tongue bite, i made it through the night without incident but this morning trying to talk and swallow opened it up again. I held pressure for 3 cycles of about 20 minutes each and so far, all's well. I mentioned it to a retired orthodontist friend and he also suggested a tea bag may do the same as pressure but a bit faster. Will give that a go next time (I'm sure it will happen again).

 

[ChuckM]

Welcome to this forum. You will find a lot of good advice here altho after two years post AVR you probably have a pretty good handle on living with a mech. valve. BTW, you are pretty much in the middle of the age range of the members of this group.

****, thanks for the reply. I'm amazed at your signature and it really gives me a better feeling assuming I am reading it correctly. You received a mechanical valve in 1967 at the age of 31 and its still going strong today? That is amazing! Its also good to know that warfarin therapy hasn't apparently caused any significant issues that whole time. Thanks again for the info.

 

[LondonAndy]

Welcome to the forum, ChuckM. Outside the US, a lot of the world takes a different view of self monitoring and self-managing Warfarin, and encourages it. This report by the UK's National Institute of Clinical Excellence, which advises our NHS service, explains why - better life expectancy and fewer strokes if you have a better idea of your INR and so can stay in therapeutic range more.

This means that the hand held machines needed are cheaper, and users more supported. Having your own machine, which you can take with you on vacations of course, means you can drink more alcohol then and know what effect that is having, and adjust your Warfarin dose accordingly. In other words: it gives you freedom from the tyranny of trying to keep your diet the same. Obviously this extends to the foods you eat too - whilst I{ am not suggesting getting drunk is a good idea, the combination of different foods and a bit more to drink on vacation always push my INR up, so it is good to know and deal with it.

 

[tom in MO]

Welcome to the forum, ChuckM. Outside the US, a lot of the world takes a different view of self monitoring and self-managing Warfarin, and encourages it. This report by the UK's National Institute of Clinical Excellence, which advises our NHS service, explains why - better life expectancy and fewer strokes if you have a better idea of your INR and so can stay in therapeutic range more.

This means that the hand held machines needed are cheaper, and users more supported. Having your own machine, which you can take with you on vacations of course, means you can drink more alcohol then and know what effect that is having, and adjust your Warfarin dose accordingly. In other words: it gives you freedom from the tyranny of trying to keep your diet the same. Obviously this extends to the foods you eat too - whilst I{ am not suggesting getting drunk is a good idea, the combination of different foods and a bit more to drink on vacation always push my INR up, so it is good to know and deal with it.

In the US self-monitoring is encouraged. Whether or not self-managing is allowed depends upon the patient and doctor prescribing the person's warfarin. It's a case by case decision. For example, someone with cognitive difficulties should not be self-managing. Many US citizens monitor and manage their warfarin therapy.

 

[LondonAndy]

In the US self-monitoring is encouraged. Whether or not self-managing is allowed depends upon the patient and doctor prescribing the person's warfarin. It's a case by case decision. For example, someone with cognitive difficulties should not be self-managing. Many US citizens monitor and manage their warfarin therapy.

That's good to hear, Tom, and different to what I had understood.

 

[tom in MO]

That's good to hear, Tom, and different to what I had understood.

In the absence of a National Health System, there is a lot of diversity in the US that won't be seen in countries with a unified system. The US government health insurance, Medicare, has supported home testing since at least 2008. In addition, in 2020 Medicare increased the amount doctors can be reimbursed for INR assessment.

 

[Zoltania]

On the topic of anxiety, here's a useful thread from several years ago:

Post Surgery Anxiety