Another Blood Clot

[Jy1234]

Hello, On Friday night my husband complained of pain in his right shoulder and lung area, the signs were there again after 3 years possible clot. I drove him to A and E hoping for the best, but feeling there was a clot again, and at the door Of A/E told them what I suspected and pleaded for them to do a D Dimer as it takes a while for results. Finally after heart trace, bloods, X-ray etc plus D Dimer the results came back he had a clot on his lung. He was admitted to a ward and went for a CT scan where 2 clots were found. The Doc told him it had broken away and had been His right leg .As this is his 2nd clot he will now resume taking Apixaban which he stopped taking at Consultants request over 2 years ago. He is still in hospital and feeling quite poorly, Short of breath, chesty, very tired, stats not good so on oxygen and if he admitted it I would say like myself feeling extremely scared. So disappointed that we Are back to square one. Sad☹️

[Hidden]

*Hugs* How worrying for you. I hope he will be feeling much better in a day or so. He is in the best place just now, but as you say, so disappointed that you're back to square one.

[SpeedyH]

I am so sorry to hear this and understand how frustrated and scared you must both be feeling. Well done for getting your husband to A and E and for insisting he got the tests he needed, which will help his recovery as the sooner treatment is started, the better for recovery. Your husband will likely now be on anticoagulants for life, which should ensure you never have to go through this again. I wish him a speedy recovery and hope he is home with you very soon. x

[Brookiebiceps]

I pray he heals quickly. Did he have any genetic testing done? This can definitely be scary! I'm glad hes getting the care he needs xoxo.

[Smythian]

Hi.

What an extremely worrying episode for you all!

I am on lifelong Apixaban, which I have been taking since 2014, with no side effects.

Your husband will be fine and on what is arguably the best anticoagulation medication.

My advice would be for your husband to seek a referral to a Consultant Haematologist to assess the most appropriate dose of Apixaban.

My initial therapeutic dose was 2.5 mg twice a day, until a further clotting episode post a total knee replacement revealed that this dose was not providing the appropriate anticoagulation level for me.

I am now taking 5 mg twice per day.

The Haematologist can establish this via a range of blood tests. (Assays).

The very best of luck to your husband!

[Jy1234 in reply to Smythian]

Thank you for your advise, much appreciated and I will seek an appointment for him with a haematologist.

[tracey13]

Hope he makes a speedy recovery.

Have they investigated why he's having these clots?

I've had three separate dvts I have got factor 5 Leiden blood clotting abnormality.

I'm on rivoxaban for life now .

Tracey

[Jy1234]

They said after the first clot it was unprovoked and did no further tests. Hopefully after a second time they will.

[Hidden]

I had a blood clot back in 2017 that went to the lungs and they have kept me on xarelto 20mg indefinitely after my initial treatment of 15mg xarelto twice a day for three weeks and I am fine on it as they said my clots were unprovoked as well.

[Brookiebiceps in reply to Hidden]

Cat girl, how did you manage the anxiety of it all? How often do you follow up with your Drs?

[Hidden in reply to Brookiebiceps]

Nowadays I see my doctors yearly but at first I was swimming in a sea of appointments but I know where they are should I need them for anything in between appointments.

With regard to anxiety I was terrified at first but it's got better over time.

[Brookiebiceps in reply to Hidden]

Ty Cat girl. Do you remember having any side effects in the beginning?

[Okccp]

I've had two clots with a year and a half between both I'm on rivaroxaban I hate taking these medication but they do save your life I would look for compensation where that doctor told him not to take the medication 2 years before he should really get some compensation speak to a good solicitor I hope he has a speedy recovery

[Jy1234 in reply to Okccp]

Unfortunately this seems to be the way forward for anybody who has had one PE. They take you off meds after a period of time and only if or when you have another clot do they put you on the meds for life. I do know he will now be on for life as it states this on his discharge notes. I am more angry about the 9 hour wait before being given any meds. And will pursue this to try and stop this wait, happening to anybody else. A uphill battle I know but one I have taken on.

[Okccp in reply to Jy1234]

I understand where you're coming from with the wait because I have to wait a whole hour before I got even seen when I told them at reception A&E I think I got a clot again they made me wait alongside everybody else and I wasn't able to jump the queue even though as far as I'm concerned mine was more urgent than everybody else with my previous background of clocks and secondly the first time I ever got a cloth it wasn't until my first appointment at the outpatient was I ever given a stocking for compression I went through my first Saturday treatment and everything before my first consultation when the man looked down and said why haven't you got any stocking I said they didn't give me any didn't know I had to have stockings so the whole system shit you got people working then the NHS you know Jackshit about their job

[Okccp in reply to Jy1234]

And yes the first time I got a clot they take me off meds then one year and a half later in the same leg I got it again and now I'm on the drugs for life

[teaship]

Hi very sorry to here about your husbands clots a very similar thing happened to me, I would imagine he will be on anticoagulants for life now the same as me. I hope he gets well soon Regards Richard.

[MrsT193]

Hi there

Roughly same thing happened to me. First clot totally out of the blue,put down as 'one of those things'. Did my 6 months of Rivaroxiban then stopped. Year later that stitch like feeling in my chest, bloods, CT and chest xray showed another clot. To be honest I was gutted, no other word for it. I was only 45 with something that had tried to kill me twice, and failed!! I was tested for various clotting issues and diagnosed as having an unknown clotting disorder, in other words there's no reason for my clots I just had them

I now take Rivaroxiban for life and I feel safer. It took a while to feel better physically and mentally. Don't underestimate the mental side of it, this is a big thing and it takes a while for your brain to realise your going to be OK. Please excuse the cliché but it's time that you need. I now look at it as 'a pill a day' and that's how much attention I give them. It was 4 years since my second clot and I try to put them to the back if mind, but aware of any stitch like niggle.

Best wishes to you and hope you feel better soon

Eirlys

[Brookiebiceps]

Mrs T, what does a stitch feel like? Is it sharp? I only had shortness of breath with my PE's. I'm on xarelto and have more aches and pains now than before! Are you still on thinners?

[Seraphine2021 in reply to Brookiebiceps]

I have been plagued with pain throughout my body since going back on Xarelto after 5 years - wondered if it is a known side effect? I already have Fibromyalgia and had huge pain everywhere in my body after getting Covid-19 in 2020 which was just beginning to settle down - so depressing having it start again and wonder if it could be linked with the Xarelto?

[Seraphine2021]

Hi Jy1234,So sorry to hear about your husband but great that you were able to recognise the symptoms and get him help in time. I understand completely both your fear and your feeling of being back to square one as I have recently had a similar experience after 5 years free of meds. I have a deep mistrust of pharmaceuticals and doctors in general which doesn’t help. I have been prescribed Xarelto again but this time for life as this is now the third episode even if that has been over 9 years. It is incredibly frightening to be told that you cannot move because if you do you may have a stroke! I went from this situation to being put on Xarelto two days later and discharged home two days after that! I recently had another CT Scan which showed that I still have a blockage in my left lung consistent with a previous PE - I had bi-lateral PEs in October- no mention of the right lung so just even more concerned. Now I have been reading about Xarelto being sued for bleeding problems in patients in USA - so scary!

My father followed the same path and then had two strokes in his 70s and I am scared that I am heading the same way.

I am supposed to feel safer now that I am on Xarelto for the rest of my life but somehow am not. This is probably not helping you much and for that I am sorry.

The best advice I can offer is to push to find out why your husband had the clots and don’t be fobbed off with excuses. Knowing the cause can sometimes help them arrange the treatment more appropriately.

I wish you the best of luck and good health to come.

[Brookiebiceps in reply to Seraphine2021]

I'm now on a reduced dose of xarelto at 10mg for life. It is scary either way but what's the best choice? Like can we really live 100% normal on blood thinners!!??

[Seraphine2021 in reply to Brookiebiceps]

I think there are some hopeful natural remedies like Nattokinase but no-one looks into them seriously because there’s no money in it - it was the thing that kept me clot free for 5 years until I foolishly changed brand and obviously got a dud one. I will seriously consider going back to it after 6 months is up.

[Jomomo in reply to Seraphine2021]

What is Nakkokinase? I'm sick of meds!

[Jomomo in reply to Seraphine2021]

I am gonna try it. The meds are killing me slowly. I almost bled to death on Warfarin last week. Internal bleeding.

[Brookiebiceps]

Are you on 20 mg xarelto? My clotting factors are normal but I always think what if I re clot if I stop them? Why can't I do aspirin? Because it's cheap and no money to big pharm? Idk.. I keep saying I'll stay on for now but I honestly don't want to have ant harmful side effects. I'm not vaccinated either because I'm nervous about those side effects too, plus I know so many people vaxxed but still got the virus!

[Seraphine2021]

Nattokinase is a natural supplement derived from fermented soya I believe. It works very much in the same way that Xarelto and the like work - anti clotting but has the advantage of some blood thinning effects. No-one has found any particular side effects but dosage is the problem because it is only sold as a supplement so clinically there is almost no info on what dosage to use clinically except some research done by some holistic doctors in the USA who trialled it clinically to some good effect I believe. You can find the research if you hunt for it.However, because I was getting side effects from Xarelto and my pulmonary embolism wasn’t dissolving much after three months, I made my own decision to try going back to the Nattokinase, using a higher dose mentioned in the above research.

I felt 100% better on it but sadly I formed another DVT within three months so until more definitive research is done, I think it would be irresponsible to do what I did. I am now back on the Xarelto sadly.

Sorry I can’t be more help on this.