Mechanical Valvers! Tell me about your travel experiences

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csigabiga

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Hi mech valvers!

Looking increasingly likely that I'm getting a Bentall and one of the things that concerns me is the ability to travel and do slightly adventurous things.

Have you gone on surfing adventures (what if you hit your head or bleed a bit?)
Ski trips? (head?)
Hiking trips or multi day treks in isolated places at high altitudes? T
Scuba trips in developing countries?
Places where you don't speak the language and don't know exactly what's in your food?

I'd love some reassurance that at least some of these things are possible with those handy coagucheck machines. So please, tell me your travel stories and help bring my anxiety down from a 15/10 to a 12/10
 

pellicle

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Looking increasingly likely that I'm getting a Bentall and one of the things that concerns me is the ability to travel and do slightly adventurous things.
firstly a bental does not mean you have a mechanical. With or without a bental the issue you are alluding to is the issue of mech and anticoagulation therapy (via warfarin). The graft brings nothing to the anticoagulation argument table

So I feel that you you must have missed very post I've made saying that ... for instance:
  • having a Roche Coaguchek means I can go where I want and do what I want
  • all my posts out on the ice and snow skiing and saying I live just as I did before surgery (even the last one) Eg here
  • this post including activity and about a person climbing Mt Everest on a mechanical valve.


having a bental removes the single greatest argument against having a mechanical: the you may need a redo due to aneurysm. So with a bental and a mech at the same time you stand the best chance of never needing a redo.
 

csigabiga

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Yes, I realize that the main issue I'm concerned about is the mechanical valve and required ACT, and not the graft. I'm sorry if this didn't come across as technically correct.

In any event thank you for sharing those threads. Indeed I hadn't come across two of them. I'd love to hear more from even more people!

I realize it may seem strange to someone who has lived with prosthetic valves for such a long time, but hearing more and more travel stories with mechanical valves goes a long way towards easing some of the anxiety behind perceived limitations that may (or may not) come with the valve.
 

pellicle

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I'd love to hear more from even more people!
well its holidays, so perhaps more people are spending less time here, but there are literally hundreds of threads where people here have answered exactly those questions with their actual experiences. So what if that was last year or even 10 years or more ago? It just means that its been that way for years.

Best Wishes.
 

Superman

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More travel in this thread….


My wife and I did a rim to rim hike of the Grand Canyon this summer. National Parks too many to mention here. Used to do mountain biking when I was younger. Heading to the Canadian Rockies this coming summer.

The summer after I received my valve (this would have been 1991 when I was 18), I spent three weeks traveling to another country. Didn’t even have home testing then.
 

LondonAndy

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I can't say I do particularly risky activities when on holiday, but to echo @pellicle I do my own INR testing anywhere in the world using my CoaguChek XS meter, so that part is not a worry.

Also, I had an operation to replace my pacemaker in October last year which was carried out WITHOUT any changes to my ACT. So in other words, they felt it was fine to make a 10cm / 3" cut in my body, have a rummage around inside and stitch me back up whilst on an unchanged Warfarin regime. So whilst there are risks of slightly longer bleeding, they are likely to be less than you think.
 

pellicle

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@csigabiga
In case you missed it, or he misses your question

 

tommyboy14

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Yes, I realize that the main issue I'm concerned about is the mechanical valve and required ACT, and not the graft. I'm sorry if this didn't come across as technically correct.

In any event thank you for sharing those threads. Indeed I hadn't come across two of them. I'd love to hear more from even more people!

I realize it may seem strange to someone who has lived with prosthetic valves for such a long time, but hearing more and more travel stories with mechanical valves goes a long way towards easing some of the anxiety behind perceived limitations that may (or may not) come with the valve.

@csigabiga

Hi,

I also have the coagucheck and I would say that allows you to be pretty independent. I just need to email my results to my coag clinic, so they renew my warfarin prescription. I can do this from anywhere in the world.

In terms of activities, I can only say what surgeon told me: 1) Live your life. 2). You can still do most activities, but dont go crazy. I.e. skiing downhill is ok, so long you do that when moderately (I.e. wear helmet and avoid fully iced over black diamond slopes). Honestly, the bigger concern is a drunk guy skiing into you.

From the forum you can see that people still live their normal lives.

In the German speaking forum, (Germany is the place where self-management is the standard of care - each patients is trained how to do this if they want), there seems to be plenty of people travelling developing countries, hiking high altitudes, etc. They all say self testing makes it easy.

Good luck with your decision
 

vitdoc

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I have been on warfarin for 39 years. The first 25 with mediocre INR management. I have downhill skied all over the US and in Europe. I have been on about 20 bicycle trips all over the world and I just returned from Botswana from a photo safari. Only once can I recall issues with bleeding.
I was finishing up a photo trip to Patagonia and I had significant bleeding from hemorrhoids. The bleeding stopped without too much of an issue.
So generally the warfarin has not been so far a big problem and now less so with the ability to check my INR. Sure it would be nice not to take warfarin but after my third open heart the surgeon said you don’t want a fourth surgery and I agreed.
 

mecretired

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I haven’t changed my activities since surgery 13 years ago. Never did mountain climbing or anything like that but my husband and I cut firewood and I use a chainsaw. My biggest issue in traveling is making sure I have enough medication to cover the time I’m gone. I had to watch a video after my surgery before they let me go home. They made it sound like you could die from a paper cut. Soooooo not true. So get out there and live your best life.
 

Chuck C

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Have you gone on surfing adventures (what if you hit your head or bleed a bit?)
Not surfing, but I've been body surfing, riding some pretty big waves. A couple of times I really got tossed about by powerful waves that had me going head over heals several times. I was aware that it was not an activity with zero risk, but I came through it just fine.

Ski trips?
Not yet, but hopefully I will get up the local mountains this season. Some on warfarin wear helmets when they ski. I may or may not wear a helmet when I go skiing next. I think if I was going to do the stuff I did when I was 14-30 years old that I would need a helmet. But, I'll stay on the intermediate runs and take a pass on the steep black diamond mogul fields going forward.

Hiking trips or multi day treks in isolated places at high altitudes? T
I've hiked dozens of times since surgery. There is a local mountain, which I often hike up then run on the downhill. I've also gone on a few 3-4 hour strenuous hikes with my wife. No issues.
Scuba trips in developing countries?
Not since surgery, but I've been diving for 40 years and will dive again for sure. If I go to the third world on a trip, I probably would not hesitate to dive. Doing any type of physical activity in the third world might be an issue if urgent medical care is needed, but I see it as a numbers game. Once every few years, I'm good with the relatively low risk of injury. But, moving to some place that would not have top rated medical and doing daily physical challenges, might not be such a good ides.

Places where you don't speak the language and don't know exactly what's in your food?
I've eaten in a few Asian restaurants in which I can't say for certain that I know every ingredient. No issues. I really don't see this is an issue for a person who self tests and knows themselves. I'd stay away from any drinks that might have grapefruit or cranberry, but other than that I don't worry about it and eat what I want, which includes lots of greens. I'm eating a giant Mediterranean salad as I write this, in fact.
I'd love some reassurance that at least some of these things are possible with those handy coagucheck machines.
As I've covered above, I would not hesitate to do all of the things listed personally. There is not zero risk, but there is not zero risk in life in general. Every time a person drives to the store, there is a certain amount of risk, whether or not they are on warfarin. One can choose to never drive and never travel to avoid all risk, but that's not living life. My dad is 80 and rides his bike to the gym often. He is not on warfarin, but at his age, a spill on his bike could potentially be much more serious than if a young person took a spill. But, I don't tell him to stay off his bike. In my view, the risk he is taking on by riding is totally eclipsed by the benefits he gets from regular exercise and I encourage him to continue his bike riding.

I think it comes down to using common sense and being guided by the actual risks involved and not guided by myths. We each decide how much risk we are willing to take in living life. Personally, I like to live an active life.
 
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csigabiga

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Thank you everyone for the messages of encouragement. It really means a lot. I've been advised by a surgeon I trust that I should go for the mechanical, it's just hard to accept as I am asymptomatic now and I feel like the mechanical will feel like a step down from where I am in terms of quality of life. The Ross is so tempting as it provides this illusion that nothing is wrong your heart, although I'm quite aware that you pay for this illusion, with interest, 15 years +/- 5 down the road.


Not surfing, but I've been body surfing, riding some pretty big waves. A couple of times I really got tossed about by powerful waves that had me going head over heals several times. I was aware that it was not an activity with zero risk, but I came through it just fine.

This is exactly what I would be worried about. I'm glad you came out OK but how did you know you (and at what point do you know) when it's appropriate to seek medical care?
 

pellicle

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, it's just hard to accept as I am asymptomatic now
Everything indicates that is the best time to have surgery, when your body is still coping with the changes that the instruments are showing. Not on your sick bed.
Good reading here

aortic stenosis without symptoms

and:


Aortic Valve Replacement Versus Conservative Treatment in Asymptomatic Severe Aortic Stenosis: The AVATAR Trial

Conclusion
In asymptomatic patients with severe AS, early surgery reduced a primary composite of all-cause death, acute myocardial infarction, stroke, or unplanned hospitalization for heart failure compared with conservative treatment. This randomized trial provides preliminary support for early SAVR once AS becomes severe, regardless of symptoms.​
 
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csigabiga

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Yeah I understand the same from my team of surgeons and cardiologists....I'm just finding it difficult to commit to the process even though I know I need to.
 

pellicle

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Yeah I understand the same from my team of surgeons and cardiologists....I'm just finding it difficult to commit to the process even though I know I need to.
wait then ... you can still pick the same valve then too (although I don't know your aneurysm measurements, if that is critical and goes then you probably can't pick any valve)
 

csigabiga

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wait then ... you can still pick the same valve then too (although I don't know your aneurysm measurements, if that is critical and goes then you probably can't pick any valve)
Not quite sure what you mean. I definitely need to have surgery and am looking to have it within the next 2 or 3 months. I don't have an aneurysm yet, but surgeon wants to be proactive so it doesn't become the catalyst for a future intervention. As far as I understand I can pick my own intervention
 

Chuck C

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I don't have an aneurysm yet, but surgeon wants to be proactive so it doesn't become the catalyst for a future intervention
I think that is probably wise. My aortic diameter was only 3.6cm, well belong the threshold which would call for repair, even when doing OHS for valve replacement. He made a spot decision when he got me open and got his eyes on my aortic. After thousands and thousands of valve surgeries, in his experience the tissue of my aorta appeared to him that it is the type that will cause issues at some point for me. He knew I was going mechanical because I wanted to be one and done, so he made the decision to give me a Bentall, replacing my aortic root and ascending aorta.

I think your surgeon is wise to be proactive in this regard. He is looking to minimize the risk of you needing OHS again down the road. And, the outcomes for Bentall (which includes aortic valve replacement and aortic replacement) vs aortic valve only, actually has shown better long term outcomes.
 

pellicle

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Not quite sure what you mean.
which part?

I don't have an aneurysm yet,

right ... seemed strange to be discussing bental not not have one, but I get it now.

Full and complete information helps any person who tries to answer questions do more than say "I'm praying for you". Putting it in your BIO helps any participant to quickly check before answering.
 
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