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Vivek2689

Member
Joined
Jun 17, 2020
Messages
5
Hi All ,

I am 34 year old with a mechanical on-X valve . I had undergone the Surgery in 2019 .

I am from India and I got an opportunity to work in the UK and planning to move shortly

I am on Warfarin .

What kind of care do i need to take .Are there any prerequisites and do I need to follow a process to continue checkups there ?
 
Vivek2689 said:
Hi All ,

I am 34 year old with a mechanical on-X valve . I had undergone the Surgery in 2019 .

I am from India and I got an opportunity to work in the UK and planning to move shortly

I am on Warfarin .

What kind of care do i need to take .Are there any prerequisites and do I need to follow a process to continue checkups there ?
Click to expand...
It depends upon your condition. If you are stable all you really need is your warfarin and a way to test your INR. Yearly checkups may be prudent but are probably not critical.
 
How are you managing your INR now- clinic, or self test and manage?

I imagine that if clinic, you'll want to try to prearrange things in the UK so you don't have a gap in monitoring. Could your current providers help with that, doctor to doctor? Hopefully someone from the UK can weigh in as I am not sure how the NHS works, whether you are a citizen and if that matters, etc. I think that's your main question.
 
I think you should try to get a referral to a UK anti-coagulation clinic as soon as you get there.

You will not be able to get warfarin prescribed without being at a clinic. Even having my surgery done in the UK, my private hospital was struggling to get me registered at my local NHS anti-coag clinic. That took over a week. But once they suceeded everything went well.

The Clinic has now accepted that I self-test and self-manage. They just make me email them my INR once a month and my dose that I am currently taking. They only require me to come in twice a year to check my meter against theirs and a blood test for safety. It took me a while for them to accept my self-management, but when they saw my 90%+ in range over the time period of a year, they stopped arguing and accepted that I get good results.

Please feel free to PM me in case you have any other questions about anti-coag clinics in the UK.
 
dornole said:
How are you managing your INR now- clinic, or self test and manage?

I imagine that if clinic, you'll want to try to prearrange things in the UK so you don't have a gap in monitoring. Could your current providers help with that, doctor to doctor? Hopefully someone from the UK can weigh in as I am not sure how the NHS works, whether you are a citizen and if that matters, etc. I think that's your main question.
Click to expand...
Thank you so much for answering .
I do have a coagucheck xs with which i do a test once in 2 weeks . I am maintaining the required range currently.

I will check if i can get any references on the doctor - doctors
 
tommyboy14 said:
I think you should try to get a referral to a UK anti-coagulation clinic as soon as you get there.

You will not be able to get warfarin prescribed without being at a clinic. Even having my surgery done in the UK, my private hospital was struggling to get me registered at my local NHS anti-coag clinic. That took over a week. But once they suceeded everything went well.

The Clinic has now accepted that I self-test and self-manage. They just make me email them my INR once a month and my dose that I am currently taking. They only require me to come in twice a year to check my meter against theirs and a blood test for safety. It took me a while for them to accept my self-management, but when they saw my 90%+ in range over the time period of a year, they stopped arguing and accepted that I get good results.

Please feel free to PM me in case you have any other questions about anti-coag clinics in the UK.
Click to expand...
Thabk you so much for the response.i do self test here and maintain the intended INR range . Hopefully i get registered to NHS anticoag clinic .
I will reach out to you if i have more queries
 
Vivek2689 said:
Hi All ,

I am 34 year old with a mechanical on-X valve . I had undergone the Surgery in 2019 .

I am from India and I got an opportunity to work in the UK and planning to move shortly

I am on Warfarin .

What kind of care do i need to take .Are there any prerequisites and do I need to follow a process to continue checkups there ?
Click to expand...
I think it might be important for you to register with a GP when you get to the UK. Read this about General Practitioners from an NHS website on how to access NHS services.... if you're planning to live and work in England, you need to register with a GP practice https://www.nhs.uk/nhs-services/vis...s-in-england-if-you-are-visiting-from-abroad/ It also states: You'll need to fill out a GMS1 form using the same details you used when you filled out your visa (whatever that is) And another NHS site : https://www.nhs.uk/nhs-services/gps/how-to-register-with-a-gp-surgery/

all the best !
 
Vivek2689 said:
Thabk you so much for the response.i do self test here and maintain the intended INR range . Hopefully i get registered to NHS anticoag clinic .
I will reach out to you if i have more queries
Click to expand...


There is more very important thing to do before you leave India: Get a letter from your surgeon saying that you are a high-risk patient when it comes to infection risk. It is international standard to give valve patients anti-biotics before any dental treatment, including cleaning, to prevent endocarditis. But in the UK the guidelines were changed. It is hard to get dentists to prescribe and give you anti-biotics ahead of treatment. The UK guidelines were changed due to concerns of general overuse of anti-biotics and the resistance in the population. But my cardiologist told me that the number of endocarditis cases clearly rose after they made this change. Many cardiologists disagree with this. But if you have a letter from your surgeon in India saying you are high risk for infection, then they will need to give you anti-biotics ahead of any procedures.

It took me a very long time to figure this out. My surgeon said the same as my cardiologist: There is no reason to expose heart valve patients to these additional risks. So I recommend you get the letter and then show it to your GP and dentist and any medical professional here.

I think that this one of very few downsides of being a heart valve patient in the UK relative to other European countries.
 
I got a letter from my cardiac surgeon which says I should have antibiotic cover before any invasive dental work - the letter was for my GP so it's on my medical notes at the GP surgery, and I have an antibiotic prescription on my repeat medications list which I can request online any time I need. I always make sure I have some antibiotics that are in date available for me to use in an emergency.
 
tommyboy14 said:
There is more very important thing to do before you leave India: Get a letter from your surgeon saying that you are a high-risk patient when it comes to infection risk. It is international standard to give valve patients anti-biotics before any dental treatment, including cleaning, to prevent endocarditis. But in the UK the guidelines were changed. It is hard to get dentists to prescribe and give you anti-biotics ahead of treatment. The UK guidelines were changed due to concerns of general overuse of anti-biotics and the resistance in the population. But my cardiologist told me that the number of endocarditis cases clearly rose after they made this change. Many cardiologists disagree with this. But if you have a letter from your surgeon in India saying you are high risk for infection, then they will need to give you anti-biotics ahead of any procedures.

It took me a very long time to figure this out. My surgeon said the same as my cardiologist: There is no reason to expose heart valve patients to these additional risks. So I recommend you get the letter and then show it to your GP and dentist and any medical professional here.

I think that this one of very few downsides of being a heart valve patient in the UK relative to other European countries.
Click to expand...
This is a very good suggestion.

It is important that we, as valve patients, take our antibiotics before any dental procedure- even before cleanings.

Bobby Darin was a famous singer in the 60s and 70s. He was also a heart valve patient who was supposed to take antibiotics before any dental procedure. In 1974 he failed to do so and got an infection following a dental procedure. He died soon after. Link below:

"SORRY TO REPORT ... it grieves me deeply to have to write this story, but as you must know by now, my dear friend BOBBY DARIN died just days before Christmas. It had been nearly three years since he underwent open-heart surgery to correct problems that remained after a childhood of rheumatic heart problems. Then about 2 1/2 years later, BOBBY had dental surgery for which certain antibiotics were essential for patients who had had heart surgery. The antibiotics were not given to him, he contracted a severe blood infection, and from then on it was all-downhill. He died following another open-heart operation, to replace the non-functioning valves which had been installed in the original surgery."

https://www.bobbydarin.net/ronabart74.html
 
Paleowoman said:
I always make sure I have some antibiotics that are in date available for me to use in an emergency.
Click to expand...
I also do this. At any given time I have at least 8,000mg of amoxicillin available. Anytime I get below that I just shoot my dentist's assistant an email and she loads me up with multiple refills.
 
tommyboy14 said:
There is more very important thing to do before you leave India: Get a letter from your surgeon saying that you are a high-risk patient when it comes to infection risk. It is international standard to give valve patients anti-biotics before any dental treatment, including cleaning, to prevent endocarditis. But in the UK the guidelines were changed.
Click to expand...
I keep forgetting this so called "NICE" policy ... here in Australia in my experience every dentist supports the antibiotic protcol for valve patients (among others).

Seems bonkers if you ask me not least because it does utterly nothing to address the stated purpose of the protocol. I dislike the idea we have politicians in charge of things that can barely tie their shoe laces, and whos prime interest is/(would appear to be) their own power advancement.
I think that this one of very few downsides of being a heart valve patient in the UK relative to other European countries.
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of course one could go to ones GP and request it and see where that gets you, but one shouldn't need to do this. Indeed what about all the people who don't know this and haven't read it?

¯\_(ツ)_/¯
 
There's one thing that the others missed--instead of testing every other week, you should test every week. In the rare event that your INR somehow drops below 2 between tests, it's possible that a clot can form on your valve and cause a stroke. Although you'll probably stay in range during these two weeks, it's still a good idea to test weekly. (And, in my case, I sometimes let it go that long - not smart, but I do).
 
tommyboy14 said:
But in the UK the guidelines were changed. It is hard to get dentists to prescribe and give you anti-biotics ahead of treatment
Click to expand...
That's really unfortunate.

IMHO the added risk this posed to patients with prosthetic valves dwarfs the perceived benefit of prescribing a few less antibiotic pills nationally.

In the US the guidelines call for antibiotics prior to any dental procedure for those with prosthetic heart valves. In my experience this is very much on the radar of dental offices as well as cardiologists. My dentist won't even let me get a cleaning unless I confirm that I've taken my amoxicillin. Although I keep my prescription filled and always premedicate, in the even that I were to forget, they have amoxicillin on hand for me to take prior to any visit.
 
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Paleowoman wrote: I got a letter from my cardiac surgeon which says I should have antibiotic cover before any invasive dental work - the letter was for my GP so it’s on my medical notes at the GP surgery...
Click to expand...

Thankfully, I have it written in my post-op general notes of the need for a periprocedural antibiotic for dental work (although not a specific antibiotic letter. I must organise one):

We also had a discussion today about periprocedural antibiotics and I explained that if he has invasive procedures, which include invasive dental surgery, then it would be appropriate to take antibiotics at that time, so as to protect his aortic valve.
Click to expand...

I’ve always got amoxicillin from my GP for dental work once I quote my cardiologist’s recommendation.

There’s an ongoing push in the UK to have the NICE guidelines changed:

NICE urged to update dental antibiotic guidelines to protect high-risk heart patients​

 
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