Hi
indeed, I am sorry to hear of your troubles too. I echo Agians questions and would emphasise that INR is critical to maintain. Up front I'm going to say that changing a valve is not a trivial exersize and while I'm sure you're anxious about all the things you've said the possibility exists that you may become worse and worse off if you attempted that (and I'm sure any good surgeon would have already said that).
So lets try to look at the other options.
As I understand it the Mitral valve is considered the more likely of the two (it or Aortic) to throw clots. Knowing how your INR is being managed is in all likelihood the key to solving this.
Do not be mistaken that monthly INR readings are sufficient as they are not. I have had zero problems with clots and stuff but I believe firmly that if I was being managed the "usual" way I'd have had one or two incidents by now. Why because I detect things early and correct for it. The corrections must be done gently but these small things make a difference.
You mention that you hate needles. Me too as I reckon I got my life quota of them by the time I was 10 and they just kept coming. So this leads to ask (importantly) are you self testing or getting needle vein draws at a clinic?
Keep in mind there are two primary causes for clots - platelet related and thrmobosis related
I'll extend Agians question and ask:
- have you had D-Dimer tests done? These are indicators for clotting and can be useful predictors of and indicators of strokes and TIA's
- are you on any platelet reducing drugs (even aspirin) because the clots could be from platelet issues not thrombosis issues.
Has anyone examined if this is a platelet related issue not a thrombosis (thus INR) related one?
There is nothing wrong with the INR range that you have mentioned. 3 ~ 4 is noted as quiet safe and it is in about the middle of the sweet spot with the lowest level of incidence - either bleeds or clots. This chart is from a research paper on that topic: [IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c2.staticflickr.com\/4\/3868\/14626794599_c646b1872d_b.jpg"}[/IMG2]
I'll put in a graph of my INR and my dose for last year. I take weekly readings and if I see an "event" I take an additional mid week reading (which I record in a separate spreadsheet). You will see some peaks and dips which will also correspond to changes in my dose (which I determine myself because clinics have proven themselves largely incompetent to me). [IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c2.staticflickr.com\/2\/1541\/25455579376_2a7ed70af3_b.jpg"}[/IMG2]
If you don't know how to read graphs well, then take your time and look carefully. INR is on the Left hand Y axis (1.5 to 5) and is the
BLUE dotted line The dose is on a compressed range on the Right hand side axis (5 to 10mg which represents daily dose) and is the darker
RED line.
Note that the two red dots on the graph are caused by me missing a pill .. thus the dose did not change ...
However if I had not done something about the other dips in INR I would probably have had your problems.
To me noone cares about your health more than you (should). So as you are in the situation you are I strongly suggest you educate yourself about how to manage yourself and be your own best advocate ... after all most doctors have so many patients that they can not devote the time to you that you can.
I'll go back to the INR thing
Again raised and mention that:
- compliance is critical - do not miss a pill and if you do it must be noted (do you know for sure you have not missed any?)
- Having a pill box divided into days and an alarm set on your phone are two important steps in ensuring that you don't miss one and if you do that you'll see it
If you are concerned about this (and I would be) then I would simply get an INR meter and start self testing ... so what if it costs $300 and so what if each test is $5 ... what would you pay to reverse brain damage (when its too late to reverse it)?
I encourage you to bring all these above points up to your doctor and discuss them. If you don't get satisfactory answers change doctor.
Lastly I'll say that I've heard from many here who are parents that they have not done X or Y properly because they were trying to do things for their kids. Well the best thing you can do for your kids is to be healthy so you can do things for your kids.
Managing your INR and solving this issue is #1 in that.
I hope everything works out and we are all happy to assist you with processing and learning about your situation so you can tackle it. So I hope we hear back from you.
Best Wishes
