Anyone else had a pulmonary embolism? Hand hold needed.

[Allofaflutter]

Currently in hospital after a double PE. I’m worried so much it will happen again. Drs aren’t telling me much and I’m terrified it will happen again. Anyone completely recovered and never had one again? They kept saying how rare double PE was and how serious it is. I was hours from death they said. I’m just scared I’m not going to recover again. They have stopped my hrt and I’m been ill with this awful virus thing since NYE and they are saying it could be one or the other of both as reasons or just random.

How is your leg doing today anyway? They gave me antibiotics in the hospital too, so maybe cellulitis is common? They didn't actually tell me what the antibiotics were for though and when I asked the nurse helpfully said "to protect against stuff". My BMI is 20 so I feel they just put me at low risk and throw easy fixes at me.

My new pain is a hot throbbing in my right armpit. Right lung hasn't felt right since I went in on Thurs either but I'm just going to put everything down to me panic-attacking and hope it's not a heart attack or a clot on the right as well. I've decided to just treat it like a joke now and just take my meds and ignore pains. I'm picturing the first Dr who sent me home and imagining him rolling his eyes at me with every sharp pain and making myself roll my eyes too. After all, even if I went to A&E they won't scan me, certainly not in under 16hrs, so not point in me worrying really!

Leg is ok today. Still got the pains. Do you have burning pain like you just took a swig of whisky?

My place on my leg was hot and throbbing. It was a small venous clot and possibly cellulitis but dr said there’s not treatment apart from what I’m having for the clots and just added amoxicillin.

Call 111 for the new pain.

Yes, been burning on the right since Thursday (clot is on left). Leg pains have stopped at least. I'm not going to call and go in again, they don't do anything and 111 just tell me to call 999 and I end up back in A&E for a day with no help.

I've emailed the GP again and said I need a referral to go private (tried to call at 8.30 and the line was already cut off again). I'm on a few help/support groups now and they all say I should have had a heart scan (not just ECG) and talked to a hematologist and possibly pumlonologist within 3 weeks of diagnosis. Hopefully they see the email soon and I can get some medical attention.

I did. I take a blood thinner every day having injected myself for many months afterwards. Hope you're doing okay OP

It’s a weird burning feeling isn’t it. I have clots more than one on each side so I’m burning both sides. Hubby keeps singing Johnny Cash at me to make me laugh while it’s happening. I’m seeing vt clinic 14th. Fingers crossed you get somewhere.

Do try calling the pals at your hospital. I have emailed them before and cc in the chief executive of hospital too. Got a quick reply then lol.

Put in the email you are taking legal action to recover costs of private treatment. That often gets them going.

Wonder if there’s nice guidelines for PE treatment they have to follow.

I live alone so keep thinking someone's going to have to walk in and find me Glad you have your husband to keep an eye on you. The burning makes me cough but the painful palpitations make me very tired. I can't talk for too long on the phone without breathlessness, so the idea of talking over everything again is enough to make me have another nap! Easier to email but having to keep going over it and remembering the details takes it out of me. I'm sleeping most days and nights as can't shake the tiredness.

Hey OP ..I messaged you on the first few pages of your thread. I hope you are doing ok. I told you about my husband and having just read through your catch ups I wanted to message you again. All was going well here until sunday evening when he had another clot in his leg. The burning sensation and feelings you described were him to a tee. The hospital scanned him and found it but more importantly they found out why this is happening, I thought it might help you so I am passing it on for you to research....Post thrombotic syndrome (pts). It is a complication that arises from the original condition. He is being measured for grade 2 stockings to support his legs, to reduce the swelling and compress the veins..the burning sensation is expected. Just thought it might help you to look into this for you x

Thank you. That’s very interesting. I hate the burning. I’m lucky I have lots of adult kids that live close or with me and a husband and more extended family. Never alone really. I really don’t know how you are doing this alone xx I’m not allowed to lift a finger by my family. It’s the only bit of this that is nice being looked after by my family. I can’t imagine doing this alone. No wonder you are so unwell. Dh even got me a better finger o2 monitor and a blood pressure monitor. Just in case.

Can I suggest an apple or Samsung watch? They have emergency call if you fall and don’t respond it alerts. Also the new sets ones done gms and blood o2 monitors.

Do your drs know you are alone embolismquestions? X

Yes to naps! I’m like a cat constantly napping.

My GP surgery just called to make sure I got the pain relief the drs ordered yesterday. My surgery is fantastic. NHS gold.

I do have a type of digital watch but I think I might upgrade as it is worrying me being alone. I do wonder about PTS too as I've had my leg veins stripped twice over the years due to them being so painful. I think this also meant my legs weren't painful in the initial episode (which was part of why they sent me home telling me it must be in my head) as perhaps the vessels are deeper in the leg now? I don't know.
Still waiting for an email response or call from GP. Yours sound bloody amazing! I've not seen the same GP twice for well over 10 years!

I've been prescribed anticoagulants but find my periods have gone absolutely haywire. Has anyone else found this? Bleeding is much, much heavier and lasts for a lot longer. On the plus side, there is very little period pain.

I’ve not had a period yet. Not looking forward to it.

I’m certainly very grateful for my gps. Though I also work at a gps but not mine. We are fast too. We have targets to reply.

How are you todayembolismquestions?

My son had one when he was 20 - He'd never smoked, not been abroad, not been sitting for long periods. He was healthy, strong, fit. He was treated in hospital, spent about 5 days in there, was on Warfarin for a few weeks afterwards. Never had any problems since then, and he's now 43.

Best wishes for a speedy recovery.

Thanks. Glad to hear he was fine.