Pulmonary embollism

[Tinkerisdead]

ive tried doing a search but much of the info is around dvt in pregnancy.
My dd2 is a week old and after feeling very poorly with chest pains etc, a scan shows i have p.e in both lungs.

Im petrified. Ive got six weeks of twice daily heparin injections. Then warfarin for 6 months. ive been told i'll be called to a thrombosis clinic within 6 weeks. My chest has crushing pain all the time and im scared rigid. I have a 3 year old and cant keep up. I cant breathe. When i lie down i get hot and my arms and legs tingle. I just panic that i'm going to die. The doc has said its unlikely now i've started treatment but i dont know how long before i will improve? Can anyone please reassure me. Please no horror stories, im exhausted with a newborn and cant cope with my emotions and fears.

You poor thing. The 10-days post-partum is actually the most risky time for a DVT/PE. But they have diagnosed it, and you are on the right treatment. By and large the people who die from these things are the people who don't know they've got them.

I had a large DVT in my pelvis about a week after DD1 was born. Luckily I didn't go on to develop a PE, but it was a scary time, especially with all the post-natal hormones rushing around. I panic-attacked a lot and ended up rushing to the GP once convinced I was dying .

Are you being treated as an outpatient or have you been re-admitted? I was treated as an out-patient, which is what I wanted at the time (I'd only just got out of hospital after the birth!) but in hindsight, I would probably have panicked less if I had been treated in hospital (I hadn't realised that I could have taken DD back in with me as I was less than 28 days post-partum).

Have you been on the thrombosis charity website? There is quite a lot of good info there.

It's the thrombosis clinic who will sort you out with the warfarin. They are great IME - much less panicky than the obstetric teams!

I had c section last monday, transferred to a birth centre tues to recover. I had crushing chest pain and they treated me for wind. Fri i came home and felt worse so was readmitted. I had a d-dimer and a ct scan showing clots and then heparin started. I got sent home last night on self inject.

Ive got stuff like pins and needles across my body, i have waves of heat when i lie down etc. Because i've got no clinic appointment i've got no-one to ask whats normal. I dont know how long it takes for medicine to work. Does the heparin 'clear' the clot or will it always be there? How long before i just feel well again as this would halt the fear.

Im so scared. I have 2 beautiful girls and one i'm only just getting to know. The whole experience is marred by fear.

Okay, from my limited knowledge:

The clot will definitely go. Your body what's called "recanulates" the clots, although you may have some scarring/vein damage long term (I know I do, but as I said, my clot was in the pelvis).

It's a big thing, and you need to give yourself time to recover. My DVT was back in 2003 and I can't remember exactly now how long until I was back to normal but I'm sure it was within a month. My experience was different because I had trouble walking, but I guess similar in that my body had to recanulate a large clot.

If you have questions and don't have an appointment with the thrombosis clinic yet, I'd go to your GP. Mine was really good and knew a lot about DVT as they see it a lot in older people. One of the things I found most difficult about the whole episode was trying to work out what was "normal" when my body felt anything but normal due to recent childbirth.

I had a pe when I was 27 in both lungs like you (but not pg/birth related).

Now you're on the treatment it will go. You will be fine. There is no need to be in fear. It does take a while to physically recover though so you must be gentle with yourself and get lots and lots of support with dds.

I was in hospital for two weeks then rested for a week then went back to busy job and a week later was in hospital again for another week. I'd messed up my inr levels by going too quickly basically. Give yourself all the time you need. It won't last forever. I had a new job and new life 4 months later fwiw.

Make sure you get all the appropriate tests done too. I still take warfarin as they discovered I had Hughes syndrome through blood tests.

God thank you for such reassuring posts. Am i okay resting or is the immobility gonna give me probs. I cant walk far as i just cant breathe and obviously im post c section recovery too but im worried that if i exert myself i'll dislodge the clot and vice versa sitting still could give me a dvt?

Don't worry about getting DVT from resting!

I've had very low mobility for years (wheelchair user) without DVT. And you're already being treated for clotting problems, so how would it even arise?

Rest and recover.

My husband had a very large dvt and was on warfarin for about a year. He is fine now and off of the warfarin.
Please do not worry - and just think positive! Now that you are on the appropriate medication, you just need to let it get to work!
Best of luck!

The fear is completely natural - I remember being terrified that I had dislodged my clot by missing a step on the way downstairs! Hang in there, and you will gradually start to feel more "normal"!

I also suffered bilateral Pe's when I was 27, also not pregnancy related.

The clots will be broken up and reabsorbed by your body, takes around 6 weeks dependent on their size. Are you having your INR levels checked at a clinic?

I totally understand your fear, and some of the tingling, chest pain and breathlessness you are describing could relate to that. I suffered terrible anxiety and panic attacks following my Pe, I convinced myself I was going to die.

But I didn't and 3 years on I'm doing fine.

Look after yourself, and try not to worry

Oh and I was advised not to do any heavy lifting afterwards, but light exercise (ie walking) was ok. Not that you'll be up to that yet following your section.

I can only add that I remember from way way back in pathophysiology lessons that PE is often accompanied by an "impending sense of doom" which sounds a bit dramatic but I guess if you can put your fear down to that, it may help you accept that its part of the condition and relax a bit more (if that makes any sense) hope you feel better very soon

Hope you are feeling a bit better today TDW.

Ah thank you for asking. I feel less scared although chest pains etc are still so bad. Got more sleep and dd was waking every 2 hours but going straight off again so all feels a little easier to cope with. Thank you.

Glad you're feeling better. I found my chest pains got worse for a little bit before they got better. They did get better though! Hang on in there, you're doing amazingly dealing with this and kids.

Interesting about the 'impending sense of doom'.