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

[Allofaflutter]

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.

I’m terrified that this previously fine leg has a clot and that the 15mg twice a day isn’t stopping it.

The pain is in my calf just below my knee at the back.

Not a medical professional but I have had a pulmonary embolism after having twins a few years ago.
Once you are on blood thinners there is actually nothing else they can offer you.
Best advice is if anything changes and you are feeling pain (mine was in my chest like an actual heart attack and not being able to breathe) then go straight to a&e.

If you have the pain in your leg then also go and have this checked. Worst comes to the worst they will say "No you're ok" which is a great outcome - but don't ignore anything if your gut is telling you that you are unwell or something is worsening.

Go to A& E NOW

You should have had a referral to the anticoag clinic as a point if contact, as usual practice is to have a follow up with haematologist in about 3 months.
I am just wondering whether PALS, GP or 111 woukd be quicker for advice. My thoughts would be 111 in order to get someone to look at your leg. It is rare, but there are some people for whom the standard treatment is not appropriate and it does sound as if you need a face to face review.
The HRT might be significant IF you have other risk factors.

No referrals no point of contact no nothing.

a&e won’t turn me away because I’m already on the treatment?

You need to go back to A and E if you suspect another DVT.

I was already on treatment when I went to A&E and they changed my meds to a blood thinner that I had to inject into my thigh each day.

They won't turn you away. I went back a number of times to A&E because I was terrified I had another PE / DVT. They were always kind and reassuring.

I’m arranging transport to an and e. Thank you everyone. If only the dr had listened yesterday instead of talking over me.

I'm glad to hear it and I hope everything goes ok OP.

Good to hear that you’re going back
to A & E. Do update to let us know how you get on.
All the best and hope everything goes well.
💕

So went to A&E. got triaged straight to the gp unit they have ( an newish thing they have at my local hospital) and basically told me as it’s not hot or red I’m imagining it and it’s health anxiety. Silly little woman and I can’t get dvt on the tablets. No scan hardly even looked at it.

And that my GP can give me antidepressants to help with my “aniexty’. No I’m not reassured at all. My gos are actually really good and have been supportive when I got cellulitis in my leg shortly after I left hospital. Maybe I should go there instead.

Wow!
That's awful. Have you got a long history of turning up at A & E? If not, they seem to be very dismissive.

In fact, even if you have spent your life camping out in the hospital grounds, they should treat you with respect.

Nope. Not been in an and e since the nineties!

Then their care is really substandard.

Complain to PALS.

Sadly this does not surprise me. Post urgent care is dreadful at the moment. If you are still having worrying symptoms go to another A and E. I think you should also contact your GP and explain you feel your care hasn’t been appropriate since your discharge and say you want a second opinion. It infuriates me how little people understand about modern HRT. I am in a lupus forum and we have so many people saying they’ve been told they cannot have transdermal HRT due to the risk of blood clots - but there’s none! Medical professionals are not keeping up to date with recent advice.

My eldest DD had a blood clot in her leg with Covid. I was absolutely horrified at the lack of any care - she was given anti-coags, told to go for a scan a week later and not checked again to see it had dissolved. All seemed very blase to me.

If you're worried, can you try your own GP tomorrow?

I feel the care is substandard too. Nobody cares. Thankfully my GP has always been good so I think I’ll call in the morning. I’m going to complain to PALs too.

I had a private appointment with a menopause specialist as she said transdermal has no risk. Yet the dr yesterday was blaming hrt!

Glad to read you are going to GP tomorrow.
If you do have a DVT, then I would want to have some investigation to rule out any signs of some internal (I.e. pelvic organ related) reason for DVT, not just blaming the HRT.

We can offer other things such as different blood thinners or something called an IVC filter.

Is there guidelines on what aftercare I should be getting?