Please help Pulmonary Embolism

[cabrillolighthouse]

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.

@cabrillolighthouse So pleased she is home & Congratulations on the brilliant A Level Results. She has some time to rest & recuperate so tell her not to worry and to focus on getting better. Glad she is back home & you can spoil her now x

@storminasnowglobe

Thanks for asking *@Josiemac93*. She has been home a few days now and getting a teeny bit better every day. Even managed a very short walk outside today. Still very, very tired and quite breathless but the Dr said that is to be expected. DD got her A levels results yesterday and did so well and got into her first choice Uni. She's worrying that she won't be well enough to go but it's still a few weeks away so I'm keeping everything crossed 🤞

Absolutely great news. So pleased to hear she's home and recovering!! Congratulations on her alevels too! Fingers crossed she's feeling okay by September!

Glad to hear that she is home and starting to feel better. You're right about the fear of it happening again though - it took a while for me not to worry about every little twinge in my chest.

@cabrillolighthouse i know this is an o,d thread but wondered if your Dd ever got any answers on why she had the PE.? My 21yo has just been diagnosed with one today and has no risk factors we’re aware of so are all a bit shocked. Hope your Dd is ok, did she have to take meds long term?

Hi @QuebecBagnet, so sorry to hear you find yourself in the same situation. I send all best wishes to your DD for a speedy recovery

My DD is now 15 months post-PE and we are still none the wiser really. It turns out she had started taking the combined pill 2 months before the PE so officially they are putting it down to this. However the GP I work with (and is also a friend) is convinced it was a post-Covid side effect. And anecdotally (I work with medical notes)there does seem to have been an increase in blood clots across the board in the last few years since Covid arrived.

DD was still very unwell when she came home from hospital and was in extreme pain (only Oramorph touched it) and barely able to shuffle to the bathroom. It was a very distressing time and I was terribly worried, however the Drs reassured me that this was normal post-PE. Recovery was slow but steady and she was able to start Uni in the October which at one point I had thought would be impossible. Even now she still gets very fatigued but I'm pretty sure it's Chronic Fatigue/ME knock-on effect rather than directly PE related at this stage.

Follow-up with Haematology has been really rubbish. She has only had telephone reviews and had to wait 14 months for her Echocardiogram to check if any lasting damage had been done to her heart. Meantime she remains on a fairly high dose of Apixaban although this may be stopped soon as Echo was fine (I think - nothing official yet).

Please do ask if you have any further questions. All the best to your DD, such a stressful and worrying time for you both.

@cabrillolighthouse thanks for answering. Glad to hear your Dd managed to get to uni and that she’s doing ok even if recovery has been long.

i did wonder about covid or even the vaccine. Dd isn’t on the pill. She already has some auto immune conditions, fibromyalgia and coeliac disease. So I do wonder if she has another as some like Factor v Leiden can cause clots. I’m going to push at the haematology referral for her to be tested for this, it’s only a blood test I think. I’m really surprised your Dd wasn’t tested for it, rather than just saying it was the pill. I know from working as a midwife that undiagnosed clotting disorders are a common cause of recurrent miscarriage so even more important with females to rule this out. Hope she manages to get off the meds soon. I didn’t realise that the medication could be such a long term thing. Is she coping mentally with it? Dd is still at the point of being terrified she might die any minute.

@QuebecBagnet follow-up has been really, really rubbish and incredibly frustrating as of course they will only talk to my daughter and I'm not sure that she advocates for herself very well, despite me advising what questions to ask and things to push for.

The whole experience has affected her mental health quite badly. She already suffered from health anxiety and it does now,at times, become debilitating and genuinely impacts on her being able to live a "normal" life. I believe the lack of proper follow-up or any real reassurance from Drs has contributed to this along with the not knowing or understanding why it happened to her.

I totally agree with you about further testing for Leiden V and other genetic clotting disorders and this is something I think I am going to follow-up, privately if necessary. I do feel she has been fobbed off with the "oh it must have been the pill" explanation, it's easy and convenient to blame that and not then to have to bother doing any other sort of investigations. I can't believe she had been on the pill long enough to have caused such a huge PE (actually she had a big one in one lung and a smaller one in the other). And in my mind, if the pill did cause this to happen so quickly then surely that is a red flag for a underlying clotting issue that definitely should be investigated further.

I’m definitely planning on going to dds follow up appts with her, she wants me too. She also doesn’t advocate well for herself. For instance yesterday she hadn’t told them any of her underlying conditions. She said they hadn’t asked 🤷🏻‍♀️

dd seems a bit less shocked today but is worried, asking about if she can ever go on a plane again, etc

hope you manage to get some better follow up for dd. It surely isn’t too much to ask for a coagulation disorder to be ruled out