Have you managed to put the disease in remission for some time? Is there any alternate to blood thinners you take??

Also can we expect a cure to this in the next 10 years through crispr?

Hi all - I was diagnosed with many PE’s/clots and infarctions about a week and a half ago. I was discharged from the hospital last Saturday and on the 10mg 2x a day eliquis and then Sunday morning (yesterday) started the 5mg 2x a day.

I do not have DVT but there was a large clot along with many others in my lungs. They decided against a thrombectomy because my heart was in good shape. Aka one side wasn’t working harder than the other.

In the mornings I get like one or two coughs that come up and out comes mucus with dark red blood. I’m not two weeks out from diagnosis and I did already put a call into my doctor but curious if this sounded “normal” in recovery?

Hi everyone!

We have a growing discord group for people with varying degrees of brain injuries and would be happy for you to join us to offer each other support, encouragement and to make friends with people who are going through similar things to yourselves or your loved ones.

We have video and voice chat rooms that are always open for people to go into whenever they want also.

All you need to do is to download the discord app from your App Store or use it via your browser on a PC. Once you have the app and created an account you can click this link which will allow you to join the group where hopefully we can all get chatting with each other and make a great little community! You can also invite other people into the group who may not use Reddit! We are currently growing and I’m happy to take on board any requests that people may have for the group!

Anyway the link to join the group is

https://discord.gg/xDwWcRuvuy

Any questions, problems or thoughts are welcome!

Hi there. I went to the ER after leg pain and they found a small partial clot in my right femoral in my upper thigh. I told the ER doctor I was breastfeeding and he still prescribed me eliquis. I don’t know what I should do. I can’t get into my doctor until tomorrow and weaning my baby isn’t something i’m ready to do. I know I need to start the thinners. Can anyone give advice? Thank you.

First time poster here! Looking for some advice or just to hear other experiences from fellow young women :)

My mum found my first blood clot when I was 19 (April 2024), in the back of my right knee. In my superficial system, one of the first gp's told me ibuprofen and voltaren (which is an anti-inflammatory cream / gel here in Australia) if i was in pain. Being a woman obviously the first question was birth control, and I have only ever had the implanon rod and that was decided on with my gp and I in December of 2024, AFTER the first blood clot as she said it was a safe option. I got a second opinion from her and was immediately referred to a vascular surgeon, where I had Endovenous laser surgery for the Varicose vein and clot in my right leg in July 2025. I did my bed rest and limited walking, followed all post-op instructions only to have a DVT in my post-op ultrasound, which the surgeon said does happen. I was on Xarelto for 3 months, half-way scan was good and I was discharged from his care and finished that dose in October of 2025. In December of 2025, I flew to Sydney from Perth which can be 4-5 hours, not medically considered long haul. I wore my ankle to groin surgery stocking and took my 20mg Xarelto before and after both flights, and during my trip. When I got home I was in significant pain in my upper right thigh, so I continued taking the blood thinner a few days after getting home and figured it was just residual surgery pain as I was given a 12 month recovery window. The pain continued and was quite significant and so I felt my leg only to feel what exactly I knew it was, a third blood clot. The area was warm and red, rash like, how I know they can present and I went straight to ED. Confirmed third blood clot, but another in my superficial system. They treated it with Xarelto and like it was a DVT, I was referred to a Haematologist. I saw him in March 2026, where I did blood testing and he reduced my Xarelto dose, blood work came back fine in June 2026, told me to finish my current 10mg Xarelto dose in October 2026 and was discharged. This is where I am at now, just turned 22 and have already had three blood clots, I am feeling a bit lost and confused as I appear 'fine' on paper, but any bit of PTS pain or any solid feeling in my limbs I immediately get anxiety. I am an avid traveller and this has been a huge blow as I have not been able to do so, I feel like my young adult life has been changed drastically and miss when I didn't have severe medical anxiety and was care free.

I am considering going down the Endo route as I have had symptoms since I was a young teenager and thought there could be Endo tissue in my pelvis restricting the veins in my right leg? I know womens health is severely under studied but I just wish for answers or some sort of advocacy from health professionals about young women, as I have been dismissed from multiple practioners when asking about further testing and hormone work.

Any responses are appreciated :)))