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Original poster

Please help Pulmonary Embolism

83 replies

cabrillolighthouse · 04/08/2021 20:05

I'm so scared. I know no one can help but I need a hand hold. My 18 yr old DD has been admitted today following severe chest pain, blood in phlegm a contrast CT has shown a clot in each lung. She had a heavy cold around 10 days ago but seemed on the mend (all Covid tests negative), then started with a cough 2 or 3 days ago. Saw GP this am after the pain got much worse and he sent her straight to the hospital. She's had a blood thinning injection and is now in a side room on a ward. I was able to drop off some stuff to her before she moved up to the ward so saw her briefly and she's in so much pain. I'm so terrified. She's only 18 but having to deal with this all alone. It is inhumane that I cannot be with her. I only know what is happening when she texts me and in between i am worrying myself sick.

My mum died of a PE only 3 months ago following hip surgery.

I just don't understand how this can be happening. I'm sat in the car park at the hospital and don't know what to do with myself.

OP posts:
VintageDressmaker · 04/08/2021 20:30

Tell her to sit tight, follow advice to stay still in bed (she shouldn’t be out of bed so clots aren’t dislodged - assume this very strong advice I had at the time still stands), and wait for the thinners to break down the clots.

Reassure her that taking life long anticoagulants (warfarin) is completely do-able. I take them automatically every day with regular blood tests to keep an eye on my clotting levels (INR)

I have two gorgeous daughters, and had to take heparin injections during pregnancies, with consultant-led oversight of the pregnancies.

She’ll need to be her own health advocate - but then I say the same to everyone with a health condition, not just clotting issues.

braceletsandbangles · 04/08/2021 20:30

Oh OP I'm not surprised that you're worried, with losing your mum so recently and these bloody Covid restrictions.
Just sending you these Flowers as I'm dealing with hospital visitation restrictions too and it makes you feel so helpless.

AlmostSummer21 · 04/08/2021 20:42

I'm sorry you're so worried x. It's totally understandable after the terrible loss of your mum & from a PE too

But honestly your DD is young and presumably normally healthy, she's in the right place.

The injections are easy to give & they're happy to show someone how to do them (if she's worried about doing them herself).

She'll be home in no time xx

Ps- why did you name change?

Interested in this thread?

Then you might like threads about this subject:

General health
Original poster
cabrillolighthouse · 04/08/2021 20:46

I only name changed because I mention my dc a lot in my previous posts and I suppose worried about giving too much away. I'm still sat in the car park, but I know I should probably go home.

My mum was having the bloodthinning injections at home after her surgery but they obviously didn't work for her and I can't get that out of my head.

OP posts:
Original poster
cabrillolighthouse · 04/08/2021 20:49

I keep thinking maybe there is something genetic. I've never taken the combined pill due to migraines.

OP posts:
Northernlurker · 04/08/2021 20:51

Did you try ringing the ward? You aren't abandoning her by going home. You're just going home.

Northernlurker · 04/08/2021 20:53

And just to be absolutely clear THIS IS NOT YOUR FAULT

You could not predict or prevent this

Glovesandscarf · 04/08/2021 20:53

I was going to suggest it might be an idea for her to mention your mum when they take a history from her/ she sees a doctor, as there are a couple of conditions which make clots more likely & can be hereditary.

Original poster
cabrillolighthouse · 04/08/2021 20:54

I haven't rung the ward as she only went up there an hour and half ago or so. I know they can't tell me anything as she is 18 so I don't know if they will talk to me at all.

OP posts:
Original poster
cabrillolighthouse · 04/08/2021 20:56

Thank you @Northernlurker . I'm just so glad she was able to see the GP this morning and he was on the ball. I honestly thought it was just going to be a chest infection. I think I'm in shock.

OP posts:
Northernlurker · 04/08/2021 21:00

You are her next of kin, it's reasonable to ring, especially to give pertinent info re family history that she may not give because she doesn't think about it. Yes the GP has done exactly what they should do, consider all possibilities inc relevant history. I'm sure you are in shock, when you get home you need to get a hot drink and go to bed with a hot water bottle.

wselesda · 04/08/2021 21:11

Focus on the fact that she being observed by professionals.

Don't hesitate to contact the ward. They can't necessarily speak to you, but you can reiterate the family history and how anxious you are about your very young adult.

SchrodingersMother · 04/08/2021 21:15

I had a PE when pregnant at 27 and turns out I have a genetic blood clotting disorder called factor v Leiden.
I was terrified when I went in and didn't seem to understand why they weren't panicking when my pain was getting worse. But looking back, I understand what they were saying.

Your daughter is on the blood thinners so she's on the treatment. She's in the absolute best place she could be right now and as far as worrying because of your mums being on things, the ones your daughter will be having will be a much larger dose as they are treating a clot rather than preventing one. It's honestly a much much higher dose. And as she's on the pill, she can stop that so the Thing that's caused it has been taken out of the factor.

I know it's easier said than done but please try not to worry. I felt worse for a day or two, then the same, and then gradually started to get better.

The first a lot of people know about a PE is when they die from it. So I know it doesn't seem that way now but she's one of the lucky ones. It's being tested and she can now look out for risk factors and take measures to prevent them in future (no contraceptive pills, no smoking, keep weight down, stay active, keep hydrated, etc)

Lots of love to you both I know how worrying it can be

BastardMonkfish · 04/08/2021 21:35

I had a c section 3 weeks ago, was given 6 weeks of clexane and haven't been taken them...reading this thread has scared the life out of me and I've started taking the clexane again!
Hope your DD will be ok OP it sounds like she's in the right place and they'll look after her really well don't worry Thanks

madamy · 04/08/2021 21:54

Your mum would have been on a preventative dose of blood thinners due to her surgery, but your daughter will be on a treatment dose.
It is really important that you or her tell her Drs that your mum had a clot despite the low dose blood thinners. There may be a genetic reason for both of them to have developed clots and this should be looked into.

YetAnotherSpartacus · 05/08/2021 15:23

How is she, OP?

Original poster
cabrillolighthouse · 05/08/2021 15:49

Thanks for asking @YetAnotherSpartacus

I have not been allowed to visit but FaceTimed at lunchtime . She looks terrible (understandable I know) and is in a tremendous amount of pain, in fact she just text to say it feels worse this afternoon than this morning. I don't know if that is normal during recovery or not. She says she thinks they have given her the max pain relief she can have and she is not having more blood thinning injections but on tablets now. She is hooked up to a heart monitor that displays out at the nurses station so that does give me some comfort. I just feel so helpless not being able to hear what the Drs are actually saying or advocate for her.

OP posts:
Original poster
cabrillolighthouse · 05/08/2021 15:50

I have told her to call the nurse and tell them the pain is worse. I hope she will.

OP posts:
YetAnotherSpartacus · 05/08/2021 15:54

No advice OP. Just Flowers for you and your daughter. It must be awful for you both. I am glad she is on the monitor at least.

PolytheneRam · 05/08/2021 15:56

I work on a respiratory ward.

I can understand why you're frightened, especially with your history, but if she's already on oral blood-thinners then they obviously think she's responding very well to treatment.

We having several PE patients on the ward at any one time and they're rarely gravely ill.

Constant monitoring is only really necessary for very poorly patients such as those in ICU or a high dependency unit. I can promise you that the nursing staff will be keeping a close eye on her though.

I'm sorry you have experienced so much loss. I'm sure your daughter will be back with you really soon. Flowers

feileacangorm · 05/08/2021 16:05

I have name changed as I post a lot on the education boards.

I had multiple bilateral PEs (and a huge DVT in one leg) when I was 25 - diagnosed at the GP practice (she sent for an ambulance without telling me). It was painful but it did start to improve within about 48 hours - make sure that she takes the pain relief regularly even if not in pain. The oxygen will also help.

I have a hereditary clotting disorder and also had a clot while on warfarin and heparin injections so was moved to a higher dose. My clotting disorder is known to have heparin resistance as a side effect. She needs to tell her medical team about the family history - she is very, very young to have a clot and there could well be a hereditary disorder present.

Kralia · 05/08/2021 16:07

It sounds horrendously stressful. I don't understand the suggestion that she's an adult therefore the nurses won't give you updates. When my dad was in hospital after a heart attack recently, we rang the ward every few hours for updates, or they rang us - and he is 82, so has been an adult for a while now Grin.

feileacangorm · 05/08/2021 16:09

I would presume that they are checking that there are no other clots present - leg pain, arm pain, headache etc. My PEs were from my DVT but my cousin's PEs were from a clot in his arm.

GlutenFreeGingerCake · 05/08/2021 16:21

I agree they won't mind you ringing for updates, try to find the best time when they are not doing their rounds or shift changes and they will have more time to talk.

Original poster
cabrillolighthouse · 05/08/2021 16:32

I've just rung and asked to speak to the nurse who is taking care of her, when she heard how worried I was she passed me on to a very nice Dr who asked DD's permission to discuss with me so I do now know a lot more about what is going on.
It is a sizeable clot but he assured me they are monitoring closely. It may have come from a DVT in a limb but the treatment would be the same. Her high level of pain is to be expected due to size of the clot which has caused part of the lung to die (?). They are looking at more pain relief options.

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