Oooh katT I haven't answered your posts since your diagnosis as I don't really understand even after re reading your posts again. I realise that your problems are very worrying and could be life limiting but as Wooley put in her post she was given a stark warning 19 years ago, so me being an optimist I'll go for the blood thinners will keep working and keep your blood flowing normally giving you a lot more years to give us music quizzes . My wife is on heparin every other day so she won't get blood clots while dialysing and has been on it since 2008

I'm pleased to read that you have a good medical team looking out for you and you have a good team here to cheer you on

Thanks Jim 

The blood thinners will end in September (those were prescribed by the cardiologist) .  It will be just aspirin after.....that is what is worrying....will it be enough to keep my blood from clotting? Blood thinners will be prescribed permanently if I  have blood clots therefore if I have a deep vein thrombosis, pulmonary embolism, heart attack or stroke 

I hope so!  

More questions to ask...why heparin vs brilinta for example....

This probably isn't very helpful but thought I would put it. For a year after Mr. Kat had a heart attack, he was on blood thinners due to the stent. It was to help keep blood clots from forming in the stent or some such. Anyway after the year he was able to stop the blood thinners (along with something else he was prescribed just for a year due to the stent) Now he takes aspirin to help and it definitely does it's job. It's basically a child dosage and if he gets a cut he bleeds like crazy. Different circumstances but just mentioning that it seems to be standard to go to aspirin only.

(I was curious and looked it up and I guess doctor's now are even backing off prescribing blood thinners for patients when they first get stents. The medical world is constantly changing their minds...)

This is exactly my situation in regards to the heart attack.

The medical world is constantly evolving.  It's unfortunate though that some doctors don't evolve with it.

GP appointment 

1- got sleeping pills.....I am sleeping 8 hours a night....makes a huge difference 
2- got more dilaudid at a stronger does but will rarely use it 
3- need to ggo for blood tests to check sugar levels

(Sat-21-05-2022, 15:40 PM)KatT Wrote: This is exactly my situation in regards to the heart attack.

The medical world is constantly evolving.  It's unfortunate though that some doctors don't evolve with it.

GP appointment 

1- got sleeping pills.....I am sleeping 8 hours a night....makes a huge difference 
2- got more dilaudid at a stronger does but will rarely use it 
3- need to ggo for blood tests to check sugar levels

A good night's sleep makes the day easier.  Yay for sleeping!  

Jim's wife has been on Heparin since 2008.  That information is good to know.  You may want to press for a deeper look into blood thinners.  Waiting until after you've had a clotting crisis sounds scary.  Your medical condition is complex, but you have a good relationship with your doctor who said that you could email her directly.  

The Romanian doctor (I've forgotten her specialty.  Is she rhuematologist?) has the ability to prescribe blood thinners, doesn't she?  I think you are worried about quitting the blood thinners in September.  I think I would be.  At the very least, I would want assurance that a baby aspirin would be enough, and if it isn't enough, then I would want to know that, too. You have a condition that makes clotting more likely.  Why would they wait until after a crisis?  Are they thinking clearly?  Or maybe just following protocol for populations without complex conditions?

I don't think I'm making sense this morning.     Where's my coffee?

As someone who has some sleep issues, it's great you have something working for you!

Like Forest says, I'd ask your doctor to make certain the aspirin is enough. I do know it keeps my husband's blood thin but his situation is not the same as yours and even if it was, people are just different. Plus talking it over with your doctor may give you some reassurance as it does sound worrisome to wait until you have a clot to treat it with thinners.

(Sun-22-05-2022, 11:27 AM)Forest Walker Wrote: The Romanian doctor (I've forgotten her specialty.  Is she rhuematologist?) has the ability to prescribe blood thinners, doesn't she?  I think you are worried about quitting the blood thinners in September.  I think I would be.  At the very least, I would want assurance that a baby aspirin would be enough, and if it isn't enough, then I would want to know that, too. You have a condition that makes clotting more likely.  Why would they wait until after a crisis?  Are they thinking clearly?  Or maybe just following protocol for populations without complex conditions?

I don't think I'm making sense this morning.     Where's my coffee?

I was thinking along the same line as Forest. Why would they wait for a crisis to give bloodthinners. In fact also here progress is emerging and there are bloodthinners that do not need checkups and hardly have side effects. But of course aspirin can do a very good job too.
Indeed in your case you do need the right dose. But that is something the doc would be able to say with all her experience.

The doctor from Roumania is a rheumatologist and internist.  She is the one confirmed the APS syndrome and treats it....my APS is due to lupus.

Secondary APS

Protocol is aspirin unless there's episodes of clotting.  She said aspirin should be sufficient but need to be extra vigilant.

Blood thinners come with their risks and side effects and this is why they start with aspirin.  

Had my conversation with my family yesterday and didn't break down      

News digested 

Good that you and they were able to digest the news. 

Question: How can you be vigilant on blood clotting while using aspirin?
I don’t have any imagination on that. Will there be a regular check on thrombosis? How do they do that?

Well done on talking with the family