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Pulmonary embolisms- lack of aftercare. I’m scared. Any drs about?

67 replies

Allofaflutter · 15/02/2024 11:14

Just over two weeks ago, I was taken to A&E with breathing difficulties with low 02 sats. I had X-ray and ct scan with contrast and bilateral extensive pulmonary embolisms were diagnosed. Admitted onto the ambulatory/ A&E overflow ward. Given high dose blood thinner jab, then another in the evening and again the next morning then sent home with tablets. Told I would get a phone call in a couple of weeks and that was it. Got phone call, he couldn’t have been less interested if he tried. Talked over me, blamed hrt patch which is wrong as the transdermal patches do not increase risk ( I had a private menopause specialist appointment last week to discuss this, so expert knowledge). He wouldn’t listen and basically said well if you are go7ng to take hrt then you have to stay on 20mg rivaroxaban permanently and wouldn’t explain why. I asked if I would be followed up on but he said no and that I wasn’t actually under any consultant and he was a dr from ambulatory ward. I don’t feel reassured and I was trying to tell him how my leg that hadn’t previously shown any signs of blood clots now is hurting and pinching and feels very much like my other leg that had the dvt that went to my lungs but he just talked over me and he said it must be something else. Thati can’t have more clots on my 15mg twice a day. Is that true because this leg really hurts and feels like the other one did. Any advice? Thanks.

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Allofaflutter · 18/02/2024 00:38

No family history though.

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endofthelinefinally · 18/02/2024 02:33

The best things you can do starting now would be to make a determined effort to lose weight. Whatever works for you, whether it is a club/ group support/ online support.
Walk regularly
Drink lots of water.
You can do leg exercises while sitting at your desk, the same ones recommended online for air travel.
Try a standing desk.
I know someone who used a balance ball instead of a chair at their desk for the odd half hour to improve core strength.

Allofaflutter · 18/02/2024 10:07

Thank you for the advice. I’ll go look up leg exercises. I need to loose weight so desperately now. I liked keto and fasting, though I don’t think I can fast taking rivarxaban now as it says take with food, but I’ll try keto again. I let myself drift into laziness being so tired and to honest depressed with perimenopause that I kind of gave up a bit. Now I need to take charge again to get better.

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doyouwanticewiththat · 18/02/2024 10:30

Losing weight would really help . I wonder if sedentary lifestyle would be a risk factor- quite possibly and easily done . I know I just want to lie around after work , I'm so tired .
No you can't fast with Riva as it binds to the proteins in food - that's how it works .

Allofaflutter · 18/02/2024 11:10

I’m going to try to shift weight and move more. Peri just made me want to rest as I’m just so tired.

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Allofaflutter · 18/02/2024 11:13

If only I could sleep. I would feel like doing more. Hrt was supposed to help with that but didn’t.

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Allofaflutter · 18/02/2024 14:17

That’s very interesting about the drug and protein. I’ll make sure I take them with protein. Thanks.

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doyouwanticewiththat · 18/02/2024 15:31

Allofaflutter · 18/02/2024 14:17

That’s very interesting about the drug and protein. I’ll make sure I take them with protein. Thanks.

Sorry You don't need to take them with protein - they just need to be taken with food :)

Allofaflutter · 18/02/2024 17:42

Ok thanks. 😊

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Allofaflutter · 18/02/2024 17:44

Can I take anything to help with the heavy periods or do they all interfere with the blood thinners? I usually have a heavy flow already.

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Allofaflutter · 18/02/2024 17:45

I have found this thread so helpful. Thank you everyone.

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Allofaflutter · 18/02/2024 18:23

Does staying on 20mg riva help prevent strokes and heart attacks?

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Crishell · 18/02/2024 18:24

I'm on rivaroxabin, 20mg a day for life after suffering two DVTs and bilateral PE in my late teens. My second DVT happend in my mid 20s. I'm 35 now.

I haven't spoken to anyone about it since my last one. Gave me the prescription and off I went. Diagnosed with a clotting disorder.

The way I see it, I'm safe. I'm a healthy weight, I'm fairly active and I take my meds.

I don't take the card with my everywhere but I suppose I should really.

If I end up in some major accident then yes, I'm more likely to bleed out, but being in an accident is pretty rubbish whatever health condition I have. I'm not going to stop driving. I'm also a qualified pilot and fly small planes around. The risk is too small to worry about.

Bottom line is, it's scary, but give it time. I was under a haematologist for a few months but there wasn't much he could do for me. He just told me to get on with my life, so I have.
Focus on living as healthily as you can, lose weight, eat well, don't stay still for too long.

Feel free to PM me!

Allofaflutter · 18/02/2024 18:26

thank you Crishell. Very useful to hear. Have you had any clots while on the 20mg? Or were they all before?

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Crishell · 18/02/2024 18:31

Allofaflutter · 18/02/2024 18:26

thank you Crishell. Very useful to hear. Have you had any clots while on the 20mg? Or were they all before?

Edited

No all before.

A GP once told me it's massively unlikely I'll get clots while on the blood thinners, almost impossible. He was obviously trying to calm me down on that comment but the point was made it's highly unlikely. I've been given the impression that I'm probably safer on blood thinners than someone not, without a clotting disorder, if that makes sense.

I managed to get through pregnancy and several long haul flights without developing clots either.

Allofaflutter · 18/02/2024 18:55

That’s very reassuring thank you. I’m still in shock and scared mode I think.

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Allofaflutter · 18/02/2024 19:09

Are periods an issue? How have you coped? If you dont mind me asking.

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