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British Heart Foundation
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8 Week Blood Clot Review ............. The Journey Starts here

Hi Everyone

A bit of a mixed bag as I had to go back to hospital last week before my 8 week review as I had tingling a kind of pins and needles in the front and back of my my thigh and an ache below my knee I Phoned the AMU ward as that’s what they had told me to do if I had any worries after examining my leg they arranged for me to have a scan of my left leg again. I had a scan but the woman who did the scan wasnt interested the scan lasted about 2 and a half minutes she didn’t scan below the knee until I insisted she read my notes on the previous scans which would explain the clot originated below my knee............. she hadn’t even read my notes she was just going through the motions lokking for a DVT which is what we were trying to avoid not what I had . Begrudgingly she pushed a bit of gel below the knee to try to appease me she didn’t even look properly and said the clots all gone !!!! I didn’t believe her as my previous Doppler scans lasted between 10 and 15 minutes and were really thorough. i went back to AMU after the scan and the head nurse said great news your clots all gone and wh3n I wasn’t jumping for joy he said why arn’t you happy ...... I just said I was getting my head around it but I didn’t mention the scan was shit !!!! ............Big mistake on my part. He said keep your appointment on Tuesday 27th November at the heamotologist dept and keep taking your injections till then.

So I spoke to the senior nurse on Monday at my GPs whose been giving my daily injections about the woman’s attitude and the poir quality of her scan and that I was worried about the results I said I was going to tell the person I saw at heamotology yesterday and she said I must .

I told the person I saw yesterday and she said she’d walk down to AMU and speak to the Advanced Nurse Practitioner James who had been looking after me over the last 8 weeks but when she came back she said James wouldn’t order another scan and as far as he was concerned he trusted the woman who had done the scan and if she says it’s gone it’s gone !!!!

So me being me I walked down to AMU from heamotology and insisted on speaking to James personally . I told him about my concerns and used voice memo on my phone to record the conversation just in case I needed proof later but in the end he arranged another scan with a senior radiologist and he told her about my concerns and thankfully she did an excellent job and guess what ......... the clot is still there !!!! It’s below the knee but only in its original place where it started my body has dissolved the portion that had crept up my thigh naturally

I went back to AMU once again and when James read the results of the latest scan showing I was right and the woman in question had missed the clot his manner changed completely and he seemed a little embarrassed he phoned heamotology and they gave two options

1. Stop the injections and do nothing and let my body dissolve the clot over time

2. Stop the injections and do a six week course of blood thinners taking it orally something called Apixaban

It was explained that the blood thinners such as Tinzaparin I was on and Apixaban I could take don’t get rid of the clot your body does. So after much diliberation I decided to stop the injections and do nothing for now and review it in a week . James says I can change my mind and go on the Apixaban if I want either now or next week if I want too.

I just hope I’ve made the right decision Apixaban like warfarin can cause bruising quite easily and it takes cuts ages to heal and the potential of bleeding on the brain if you bang your head according to James the ANP

Let me know your thoughts and whether or not you would have made the same decision after 8 weeks of injections

I’ll be grateful for your comments

Take care Guys

Pete xx

26 Replies
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Thanks Jo for your advice

I really appreciate it

Pete

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That's a shocking story. I don't know why I should be so surprised, after all you find the odd incompetent person in every industry, so why not also in medicine? But what's most disturbing is that somehow you just know Nurse James is unlikely to do anything about it. So the incompetent scan operator gets away with it and can continue to do rubbish work.

For the sake of everyone who follows why not send a written account of your experience to the hospital administrator?

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I’m considering putting in a formal complaint through something called PALS apparently you get the form from the hospital I’m mulling it over for a few days as I’m back there next week but your only saying what I’ve been thinking so thank you

Pete ❤️

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Hi Pete, just as well you pushed for another scan, I know the NHS is under pressure but missing something like that and with your history is appalling. I’m on warfarin and it hasn’t proved any problem. I have had a few cuts (usually paper cuts) and scratches (I have five cats) and none of them have bled for too long. I think if it was a bigger cut it would be different. I have been warned about going to A&E if I bang my head because of the risk of inter cranial bleeding.

I would see how you get on for the week, you can always start taking the thinner then. I would hope they wouldn’t be agreeing to you not taking it if there was any risk.

Hope your body gets its act together and gets rid it f the clot soon.

Wendy xx

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Hi Wendy and thanks for your support I will take your views on board

Cheers

Pete x

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I admire your courage in speaking up and following through. My husband was on warfarin for years with no problems. If it will help the clot dissolve faster I recommend apixoban. Carol

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Hi carol

Thanks for telling me about your husband it gives me food for thought

Cheers

Pete x

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I was on Apixaban for three months. I had small clots on the lung following AVR and triple CBG. I had to take Omeprazole gastric resistant capsules at the same time. I had no problem with the medication.

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Thanks Margah

It’s good to hear from someone who’s been on it and not had any issues that helps if I decide to take it

Pete x

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Poor you, Pete.

My husband too has been on Warfarin for a very long time and has never encountered any problems with it. My Mother was on Warfarin and Aspirin which was an unusual combination but she lived to a ripe old age!

Ann

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Thank you so much for that information

Pete x

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Hi Pete

what a disaster! Could job you had the willingness to contest this

I would definitely go to PALS they are a good impartial service and the first route in

Good luck with the treatment

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Thank you I am edging towards using PAL as it’s not right that someone is so blasé about what could be a life threatening situation

Thanks

Pete ❤️

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Hello Pete. So sorry to hear of the latest twists and turns in your story. Can't help you much with the Apixaban or not decision. Like you I'm a bit wary of blood thinners. I had an episode about 12 months ago of recurring nose bleeds. This was before all my heart issues started. It was difficult enough then to stop the bleeding and I ended up in A&E one Sat evening (what joy). On the other hand I've got a friend who's on warfarin full time and he manages fine. At least either way no more injections!

I would definitely make a complaint about the woman scanner. The thing is you had the confidence to challenge her. Most wouldn't especially as she said good news the clot has gone. We all want to hear good news. But the outcome could have been disastrous. She needs to realise that her poor performance has consequences and she needs to change her attitude. So I would go for it.

Hope very much things go better for you in the next weeks. As you say you can always change your mind and give the tablets a try if you feel you're not making much progress.

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Thanks

I feel like I should complain not for me but for future patients who get the wrong outcome through an unprofessional attitude

Pete x

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Well, I think you are owed a big fat apology from the hospital.

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Hi Pete, I've been taking Apixaban for over a year, you do bruise easily and I had a hard bang on my head. I went to A+E had a scan and all was well. I packed up having wet shaves and only use an electric shaver now, one nick and bled for ages. I'm pleased you insisted on having another scan. PALS are a good way of complaining they work for the patients not the NHS. Have a good Christmas, Blessings Andy💖

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Andy your a star great to hear from someone with experience of the drug they did mention to stop wet shaving if I went in it . I’m still in decision mode but your info is invaluable

Thanks Pete ❤️

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Hi Pete it’s such a shame you had such a poor experience but thank goodness you felt able to challenge it. As others have said PALS are a good option especially as someone said it is doubtful the nurse will mention it. As you say it may help others in the future who are not able to speak up. Maybe have a discussion with your GP about medication options. Pleased you’re progressing though. And the posts are so great to help others on their journey.

Stay strong and positive

Take care and lots of hugs

Zx

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Thanks Z

As always supportive and positive

Lots of hugs back to ya kid

Pete x

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Well done for challenging them - and definitely take it up with PALS. We all need to challenge them if it doesn’t feel right - I did (but that’s another story.) If you hadn’t I could have been without my new heart-pal!

Glad you are getting better every day andpositive as ever - we need more people like you around!!!

Xxxx

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Thanks Angel it’s always good to hear from you xxx

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I’m off to St Thomas’s tomorrow for post op check. Fingers crossed!!🤞🤞

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Good luck tomorrow I’ll be thinking of you let me know how you get on x

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Thanks Pete - which doc did you see at your post-op?

X

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Can’t remember his name I’ve slept since then lol 😂😂 x

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