Self Advocacy

I know this is preaching to the chior as folks on this website certainky are engaged in their care. It worries me at times to think about peole being served by the medical industry who cannot advocate or have no one to advocate for them.

To navigate through the process you have to educate, ask questions, and be engaged.  

here is a recent story ;

Early last Fall i pulled a groin muscle playing tennis. There was brusing from the the top of my thigh to below my knee..solid purple!

It was a bad pull but not as bad as all the brusing and blood seemed to indicate. I finally determnined a drug I take Brilanta could be the problem. I checked it out with my medical epople and they said ABSOLUTELY.

Earlier this month pre opp/implant the doctors office called to tell me .. fast after midnight, show up early, and take all my medications as I normally would.

After the call I wondered about taking Brilanta and decided I wouldnt take it that morning.

After the procedure the doctor commented abut howmuch I bled. In fact when they brought me back to my room the sheet had a huge blood staing on it.

Thats night the nurse came in and announced she had my night medication - she named off Brilanta and I decided to not take it. In fact I have not taken it since Jan 10 until today.

I dont know if I didi the right thing but that stuff makes me bleed.

My point is to be informed and ask questions.... the medical system is overwhelmed and you can get overlooked or lost.


3 Comments

Brilinta

by Julros - 2024-01-23 01:29:41

Yes, Brilinta is a sort of blood thinner. Specifically, it prevents platelets from sticking together, which is one step to forming clots It is often given after a coronary stent is placed. Ballooning open a coronary artery and placing a stent roughs up the inside of the artery, increasing the risk of a clot forming and causing a heart attack. It is also given to prevent stroke. 

Please check with your medical provider about stopping Brilinta. You could be at risk for an MI or stroke. 

Always seek your doctor's advice before stopping medication

by Gemita - 2024-01-23 06:39:00

This is a very difficult one to answer Pacer2019 and as Julros says the main concern with stopping blood thinners is the potential risk of having a stroke.  A hematoma or significant bruise from injury to a blood vessel will eventually heal but without anticoagulation or anti platelet treatment, clots could form and cause real harm. 

Bruising can be extensive following any intervention, particularly for those of us taking regular anticoagulation or anti platelets as I well remember following my angiogram from right femoral artery puncture to get a catheter placed.  I had extensive bruising which was eventually confirmed as a pseudo aneurysm.  My hospital stay was prolonged (extra 5 days spent in hospital) because I had been taking anticoagulant (Edoxaban).  Edoxaban was immediately stopped and only resumed after one week when the pseudo aneurysm showed signs of healing.  Today, five years later, I am still getting intermittent discomfort in my right thigh area. I need daily Edoxaban to protect me from the risk of having an Atrial Fibrillation stroke.

Many doctors ask us to continue to take our blood thinning meds with minor procedures nowadays because of the real risk of a stroke if we have risk factors.  Of course we are then exposed to the risk of having a bleed, sometimes a significant one.  It is a hard to know what to do for the best sometimes, isn’t it, but after seeing my husband experience two transient ischaemic attacks following an angiogram and stent placement, on balance I would rather risk having a slight bleed. 

A bruise or hematoma can be extensive and look absolutely awful as it drains and may take up to a few months to clear.  My bruising (purple and blue) extended from the right thigh down the right leg to below the knee.  I won’t post pics, it was too awful.

I think you need to speak to your doctors before any future procedure since you do appear to bleed all too easily.  It could be that next time they will recommend stopping your anti platelet or switching you to a different med for a few days to protect you.  However, with your history of heart disease, stent and a falling ejection fraction, it is difficult to know how best to advise you.  

My husband also had a bleed during pacemaker implant while on triple therapy:  Clopidogrel, Aspirin, both anti platelets (for stent protection) and Edoxaban for (Atrial Fibrillation protection).  His bruising was extensive also, so it can be a real problem for so many of us.

I am glad you are back on your anti platelet med but do always tell your doctors well before you decide to stop your medication for long periods!  Better still don't do this without their prior knowledge.  It could cause serious harm.  

Yes!

by Pacer2019 - 2024-01-23 17:14:40

All very true... THE EP doctore was suprised at all the blood.  

I have this theory that there have been lots of advancements to stop bleeding given the ongoing wars over the last 20 years.... taruma care has improved dramatically as a result. 

Suicide bombs are even made with rat poison which is a powerful anti-coagulant - 

 

I assume when they tell me "take normal medicine" the day of surgery they kniw what Itake and have thought it through? Or I hope theybhave but again...it's a big messy system and stuff falls through the cracks i believe.

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