Just wondering if anyone can advise what blood thinner - be it, tablet, injections or mechanical they or their relatives may be on several months post stroke. And I’m mainly referring to hemorrhagic strokes here due to concerns about bleeds restarting, specifically if they are on meds or injections.
My mom had mechanical ICPs (or IPCs - I always forget which way it is) the day following her stroke and then for around 2.5 months. These annoyed her and she always tried to take them off, shortly after moving to rehab hosp she was put on injections for only about a week before she ended up back in acute (unrelated condition) so they stopped the injections and just provided TED socks. Then back at rehab after a follow up mri as precaution (no new bleed/bleed stable - albeit was still a massive bleed when it happened) they out her back on injections. Now she’s in a temp nursing home - discharge to assess bed - and she’s currently on no blood thinners mechanical or otherwise. So me being the worrier I am I’m now worried about a blood clot forming - on top of everything else
I have asked the nurse to request a review by GP based on consultants previous recs so will see what he says hopefully tomorrow.
I am a 10 year hemorrhagic stroke survivor. A haemorrhage is a bleed on the brain normally caused buy a blood vessel rupturing. An Ischemic Stroke to my knowledge is caused by a blood clot. My understanding is with a haemorrhage you want to stop the bleed not make the blood thinner. I was given blood thinners for 21 days after leaving hospital 4 times a day only to reduce the chance of an Ischemic stroke, if the haemorrhage doesn’t get you there is a very high chance the Ischemic stroke will finish the job. Is that the reason she was given blood thinners? Ask the question. I also had an Ischemic stroke while in hospital that was only picked up around 2 months after leaving.
It is also my understanding that you would only continue to be given blood thinners if you had a condition requiring them before the haemorrhage, but only after a period of time had passed.
My best advice is to go with and trust the medication and care she is recieving.
This is not medical advice only from my own lived experience. I have even been warned never to take aspirin for the rest of my life.
Worrying about something that may never happen is not healthy Amie. Look after yourself and concentrate on the now and not what might happen.
I think the best thing to do is write down the questions you need answers to and ask them when you see the GP or stroke consultant. Don’t worry about asking questions and be satisfied that you understand what they are saying. If in doubt ask again - it’s their job to help you and provide the best treatment and support for your Mum.
I believe the medications prescribed will take into account your Mum’s previous medical history and any medications she may be on.
One final thing I always say is do read the medical information leaflet so you know what the medication is, what it is for and any side-effects that may result. Any adverse effects should be flagged asap so that the medication can be reviewed and changed if required.
As you are seeking to do this on behalf of your mother, it could be tricky for you as you are relying on your Mum to give you accurate information which may not always be the case depending on her ability to communicate.
Hi, best wishes to you and your Mum, I hope she is getting good treatment. Based on my own mother’s experience, I think you’re right to be concerned about clots. In Mum’s case she had a peripheral bleed in early December (probably there was a weakness in that area caused by surgery to remove a benign tumour many years earlier). Nine days later, she was found to have a massive saddle clot in her lung and had to have it treated by emergency surgery where they injected blood thinners directly into the clot. She still had smaller clots in the lung and leg which were treated with heparin injections for another 9 weeks in hospital, and fortunately it didn’t lead to a new bleed. She’s been home just over 2 months now taking apixaban tablets 5mg twice daily.
My theory was that because Mum had blood draining into her brain lining and mixing with her cerebrospinal fluid, maybe that makes the body react like it’s a head injury and try to clot the blood - but I’ve never heard a medical opinion on that. Mum herself thinks she probably developed a DVT because she was wearing knee braces when she first went to A & E and they didn’t get removed for about 12 hours, which then spread to her lung. Hopefully your Mum is not at so much risk now if it is a few months since she suffered the stroke, but I agree it’s a good idea to raise the issue with the doctors. Best of luck with your meeting.
I have been on blood thinners for several years following atrial fibrillation - Apixaban, which is quite tolerable. I came off them and had a stroke. So now I am on them for ever. I am a type 2 diabetic and have to test my blood glucose by fingerprick, and the anticoagulants make the blood run but it still heals easily after a test.
They have to way up the risk eg the risk of a further bleed versus a blood clot/DVT due to immobility. I probably should have put the immobility bit in my initial post - e.g my mom remains bed bound.
I’m thinking about long term management/prevention of clots forming in her legs due to immobility. We are now 4 months post hemorrhagic stroke so it’s about managing both risks hence my query about what people are using. My preference 9and what poses least risk) would be the mechanical compression leg sleeves - although I know these annoyed my mom when she had them before.
Thankyou Jimbob. You are right of course re the worrying - sadly I worry about everything - always have - and I constantly google everything which I know doesn’t help!
So I missed out in my original post, which is probably a key bit of info, that my mom remains immobile - bed bound - and this is is why she was given the IPCs and then later the injections, but now nothing and so she remains at risk of DVT hence my query.
I can’t offer any medical advice but you could ask the doctors about Apixaban or Edoxaban, both medications seem to have a safer profile for limiting the risk of bleeds, from what I have just researched.
Thankyou for this reply. Maybe those tablets are the way to go for my mom too. Not heard back from the nursing team yet - but will chase in a little while.
I am going to suggest something and I appreciate it may not be what you would like to hear, but as a carer myself who has looked after someone who was in a similar situation to your Mum i.e. immobile and bedbound for some time, I wonder if your Mum is able to express how she would like to be looked after.
One of the biggest learnings for me has been to remember that it is ultimately Mum whose care needs and wishes have to met and respected. As much as we might think we know what might be best for them, if they are capable of making the decisions i.e. have the mental capacity then we must ensure we ask them how they want to be looked after and try our best to respect their wish.
Both myself and my sister have been through similar experiences to you and at times it was painful to be watching and feeling helpless and having to rely on experts who didn’t always know what they were doing because they did not know Mum and in our case Mum could not speak for herself.
If your Mum has the mental capacity, it is worth sitting down with her and asking how she would like to be cared for. Ultimately, when someone is in your Mum’s condition, our first priority is to try to make them as comfortable as we can. I appreciate sometimes that would mean making difficult decisions (possibly on their behalf). I am conscious of the fact your Mum was not happy with the mechanical compression leg sleeves and so a difficult decision has to be made as to what is best for her whilst trying to respect her wishes which may then result in a conflicting choice.
I can imagine this is really tough and maybe the experts might be best placed to advise, but ultimately, they are there to advise and the patient has the right to choose as long as they have the capacity to do so.
Hello I had a haemorrhagic stroke 2 years ago. I was put on blood thinners as soon as I entered the hospital. My stroke was caused by multiple blood clots in my brain. I moved to a different blood thinner a week after discharge from the hospital. I’m now on that blood thinner for life. It’s called dabigatran. I have been diagnosed with blood cancer since my stroke, hence needing the blood thinners for life.
I understand you are a worrier, we all have some level of worry in our lives. This is not the time for Dr. Google this is the time that you need answers to your worries.
If you want to help your Mom you need to start asking questions of the health professionals that are looking after her and exact questions about the reasons that are giving you concern.
Is it time to pull on the big pants and get those answers? Is it time to ask those questions on behalf of your Mom? Is it time to ask those questions to alleviate your worries and anxiety?
If you don’t ask questions you will not get answers. You possibly need more information from the people treating your Mom to alleviate the worries, the anxiety and the fear of the unknown.
The people caring for your Mom will not dismiss your questions Aimie. Is it time to pull on the big pants?
Hi @Amie I have no medical training but I have been on tablet anticoagulants ever since my haemorrhagic stroke in August 2023 so by August this year I will have been on Apixaban for 3 years. In my head I hope that this medication will help to prevent a further stroke but I am probably due a medication review with my GP but I have had a fairly recent telephone appointment with a cardiologist who seemed to be content with my current medications. After my stroke it was discovered that I had a heart shunt- like a hole in my heart- and I needed a PFO operation to repair the heart as I had low blood oxygen levels. Following a ECG to check that the PFO operation was successful ( it seemed to be successful) it was discovered that I have a mild leak from my Aortic heart valve. As I am writing this now I am wondering if it is appropriate for me to be on blood thinners, but I am a natural worrier and guess I may need to book a telephone appointment with my GP to ask and to be honest I haven’t seen my GP since my stroke. I am left side affected and was bed bound for a few months after my stroke. I can stand now and move around a bit with a quad walking stick but I am largely confined to my home and would classify myself as housebound. Not sure if any of this is helpful to you but I just wanted to add my experience of anticoagulants in tablet form following haemorrhagic stroke .Hope that your medical professionals are able to answer your concerns. Very best wishes Caz
There may be other reasons they have you on an anticoagulant after suffering a haemorrhagic stroke, the one you are on appears to be one that has a lower risk of bleeds. None of these medications are full proof and probably none are particularly high risk, however, others might be and Apixaban seems to be low risk. Everything comes with a risk as with a purpose, so I guess you will have the opportunity to clarify some of these questions with your GP. When they mention chances of increased bleeding from certain meds, it doesn’t necessarily mean haemorrhagic stroke or bleeding in the brain, it could be bleeding anywhere on or in the body for whatever reason.
@Cazza2 I too was told I had a hole in my heart - explains a lot about my uselessness at sport when a child - but was told nothing would be done about it. So good for you that you can have it fixed. I’m not too bothered at nothing being done with mine, as it has kept going all these years, albeit with atrial fib. so I don’t think I have anything to gain thereby.
I had a haemorraghic stroke 20 months ago. I was already on medication for a previous veinous blood clot in my lower left leg. It wasn’t a DVT and I had the clot surgically removed. I was given the tablet Apixaban, which I was taking when I had my stroke in July 2024. Obviously it wasn’t working!! Since the stroke I have now been put on Warfarin as my blood thinner. It’s a bit of a nuisance trying to keep my INR levels (scale for Warfarin) even and it’s up and down like a see saw, but I manage to cope with it.
I would also suggest as previously mentioned to write your questions down and discuss your mum’s option with the GP or stroke consultant. Make sure you both understand everything that is being said, even repeating yourself if need be. The other suggestion is that the Stroke Association has some informative and expert advice. I hope you manage to resolve your queries and I wish your mum all the best for her recovery and to you as well as you join her on the road to recovery. Best wishes
I had a haemorrhagic stroke 2 years ago. I was put on blood thinners as soon as I entered the hospital. My stroke was caused by multiple blood clots in my brain. I moved to a different blood thinner a week after discharge from the hospital. I’m now on that blood thinner for life. It’s called dabigatran. I have been diagnosed with blood cancer since my stroke, hence needing the blood thinners for life.