Questions I asked my surgeon today

[markp66]

Hi,

Just a small comment on the above being a fellow UK member - Home Testing over here is very hit and miss in relation to NHS supplying to you after 4 - 6 months. Please check with your GP that they will provide this - My GP flatly refuses to give me one of these and when i suggested there were GP's that did offer this service he stated that he has NEVER 'prescribed' one and NEVER will !! My cardiologist had said it would be an option ;o( .

To say i was rather annoyed is an understatement, i am 40 yrs old (AVR 2007) and unless i change my doctor and keep my fingers crossed that the new one will prescribe i am stuck with fortnightly visits to the hospital (INR still very unstable, never been more than 4 weeks without a required test).

Leaky gave good advise, get a pre-payment prescription card - it works out so much cheaper especially as each different warfarin 'dosage' is charged as one item. Therefore if you have 5mg, 3mg and 1mg prescribed then you are paying + £21 a month !!

Good luck anyway x

You can buy them for £600. It's surely worth the investment. It's ridiculous that he wouldn't prescribe one.. It would save 100s of times the cost of home testing in the long run!

 

[rubywhistle]

Great interview! You asked all the questions I want to ask next time

 

[lance]

I'm surprised to learn home monitoring is hit and miss in the Uk and that your doctor won't approve one for you.
Oh how I wish I could remember where I read, some time ago, that mechanical valve recipients in the UK were offered monitors prior to discharge following their surgeries.
Google for POC home monitors, or something similar looking for threads from medical literature--you know the medical journals. Also there is an excellent site--WWW.ACForum/s.org and ISMAAP. The second is European-based.
At first my family doctor wouldn't write a prescription for me either. However, whatever it took, however long it took I'd somehow get a monitor--and have.
Just keep your eye on the prize and succeed.
Cheers
Sandra

 

[Lynlw]

I'm surprised to learn home monitoring is hit and miss in the Uk and that your doctor won't approve one for you.
Oh how I wish I could remember where I read, some time ago, that mechanical valve recipients in the UK were offered monitors prior to discharge following their surgeries.
Google for POC home monitors, or something similar looking for threads from medical literature--you know the medical journals. Also there is an excellent site--WWW.ACForum/s.org and ISMAAP. The second is European-based.
At first my family doctor wouldn't write a prescription for me either. However, whatever it took, however long it took I'd somehow get a monitor--and have.
Just keep your eye on the prize and succeed.
Cheers

Sandra

I was surprised too. I quickly looked to see if i could find anything helpful and found this group http://www.anticoagulationeurope.org They have some info on self testing, but they also are having a event in London in sept
"REGISTER NOW for our Anticoagulation Education Day 29th September in London. Open to patients and Health Care Professionals. Entry is free. Programme will include New Anticoagulants, Atrial Fibrillation, Hughes Syndrome, Deep Vein Thrombosis, Patient Self-testing and more" That might be interesting and help for anyone in the area.

ps Mark, one of the problems with just buying your own monitor, if your doctors wont cooperate or approve, is you need them to write the scripts for Coumadin. It could be good to have so you can check when you want, but unless you can find a doctor willing to go along with the results, you probably would also have to go to have your testing done where they want you do, so they will prescribe the med, monitor your INR etc

 

[markp66]

Thanks Lyn. I'll check it out and look into it. I think I'd buy one just for the reassurance that my is constant throughout.

Cheers

 

[themalteser]

Hi Markpp, great response from the surgeon, whom did you choose if I may ask ?

One thing that I don't know whether I agree with your surgeon or not, but he said that mortality rate for a healthy 27 year old is around 4%, otherwise 1 every 25. This sounds bit high is it ? I mean the euroscore predicts from 0 - 1% mortality rate on a healthy 27 year old. Perhaps, he is just covering he's back, but sounds bit high to me.

 

[markp66]

Glenfield hospital which has some great surgeons. He actually said 2-4% as it's a reop and he is also replacing my aorta so he can get a bigger valve in. This will help in the long term. I was v reassured when he said this should last a lifetime even when I pressed him further on this. Although he said there can be complications ( as with anything) there is no reason this shouldn't last 50 years+

 

[themalteser]

Looked at the web, seems to be a great hospital with amazing surgeons as you said. I'm in Bristol, and we got the BHI (Bristol heart institute) it's great aswell. I think that you're in great hands, and you've done the right choice, your valve will definitely last a life time, mechanical valves are supposed to be built to that purpose. The blood thinners are a bit of a bugger, but than, it's just a little pill and a bit of control, otherwise, I think not a lot of people have complications if followed properly.

There can be complications with anything in life, even if I eat a takeaway! They have to cover their backs I suppose, by mentioning all worst case scenarios!!

Good luck mate, let us know how you get on. When's surgery scheduled ?

 

[markp66]

Yeah exactly. I'm sure all will go well! I'm not bothered about warfarin. I'm sure it's going to be a pain but with a bit of discipline I'm sure I'll be fine with it. As my surgeon said.. Taking warfarin is better than not taking it!! No idea on a date yet although prob end of oct. Need to go to the dentist and see that everything is ok first.

And yes I think there are a few great hospitals in the uk, some of the best in Europe from what I've read.

I'll keep you posted anyway!

 

[markp66]

Yeah exactly. I'm sure all will go well! I'm not bothered about warfarin. I'm sure it's going to be a pain but with a bit of discipline I'm sure I'll be fine with it. As my surgeon said.. Taking warfarin is better than not taking it!! No idea on a date yet although prob end of oct. Need to go to the dentist and see that everything is ok first.

And yes I think there are a few great hospitals in the uk, some of the best in Europe from what I've read.

I'll keep you posted anyway!

 

[LeakyUK]

Home Testing

Not offerred by my GP. I have a finger print test with the practice nurse, the result is immediate and dose changes are advisewd the same day. I was on the same dose for 10 weeks until a recent INR drop, and expect to test every 4 weeks eventually. The surgery is convenient so I am happy with the arrangement.