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AIBU?

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Original poster

I have a blood clot on my lung

79 replies

deepsea · 09/09/2018 21:05

And I have been sent home from hospital and awaiting a CT scan. I am terrified siting here. Is it safe to be at home? Is it unreasonable to want to stay in hospital? I have blood thinners but I feel so bloody unwell.
My dc haven’t stopped arguing. My dh has told me there is no way he can support me as he to work whatever happens (I haven’t even asked him to take any time off) I feel so ill and I feel like no one could care less, not enough to even stop shouting for 5 minutes. I am sobbing and want to leave. I feel too ill to deal with any of this

OP posts:
Mrsmadevans · 09/09/2018 22:17

OP l am so sorry my dear Flowers l think your DH may be feeling very stressed and worried and cannot cope. Who knows how we would react given the same circumstances.
When l used to feel really anxious l used to put relaxation videos on you tube on , put a pr of headphones on and just listen to the waves and the rain and the wind , they used to work a treat. l used to fall asleep on them. I also did some breathing with my hand on my tum and l had to make my hand move up and down with my breathing.
I am sure you are going to be fine my dear Flowers Good luck for the CT scan tomorrow.

gottastopeatingchocolate · 09/09/2018 22:18

Hi OP,
Don't know about the medical side of things, but TELL YOUR FRIENDS!

My friendship group could be described the same way as yours - lots of similar issues going on, but we can ALWAYS make space for each other.

If you do feel worse, or worried, call the NHS number and let them either reassure or re-admit you.

Hope you get well soon, Flowers

bottiglia · 09/09/2018 22:19

Sorry you're going through this deepsea. I had a suspected blood clot on my lung during a bank holiday so had to wait 3 days for the scan. It was clear and they think the blood thinners may have broken it down. Fingers crossed for you Flowers Brew

GoodHeavensNoImAChicken · 09/09/2018 22:21

Hugs to you at this difficult time! Flowers please tell your friends and ask for help. You need it and they sound like they could really relieve some of your stress. I hope the CT scan tomorrow goes okay

3luckystars · 09/09/2018 22:23

Can your husband take Force Majeure leave in an emergency?

This should in no way count against him as sick leave.

I’m so sorry you are ill. Separate the children and just try to get some rest until you can go back to hospital.

Long term, that’s no way for your husband and yourself to live in fear.
It sounds very stressful.

Good luck with the operation x

WhatWouldLeslieKnopeDo · 09/09/2018 22:23

Just to say, don't try to breathe too deeply. That can make it worse as you feel you can't breathe deeply enough and that triggers anxiety, which starts a vicious cycle. Try to breathe calmly. You'll naturally start to breathe more easily as you relax and as the drugs get to work.

Mindfulness apps or similar might help a bit, especially if you can't sleep. I use a Headspace. There's another called Calm that some people recommend, but I've never tried it.

I hope you manage to get some sleep Flowers

bottiglia · 09/09/2018 22:26

BTW, if you're on Metformin don't take it tomorrow or the next day. You're not supposed to take it when having a scan. Good luck.

endofthelinefinally · 09/09/2018 22:27

Make sure you take the tablets exactly as prescribed. Correct timing is crtical with modern anticoagulants. If you are on Rivaroxaban (Xarelto) you MUST take it with food or it won't be effective.

whatwouldkatyactuallydonext · 09/09/2018 22:27

Nothing useful to add except I'm a lone parent and know well that awful feeling of having to deal with kids when you feel ill and anxious.

I hope you get some real-life support soon.

Wishing you a speedy recovery ThanksThanksThanks

Shrimpi · 09/09/2018 22:34

My understanding of venous blood clots like the ones you have in your lung(s) is that if untreated, they have the tendency to become larger (or "propagate"). Large clots or large numbers of clots can affect the blood circulation through your lungs, which can place a strain on the body that in some people is very serious / life threatening, and in other people, is not.

The blood thinner medicines ("anticoagulants") don't remove the clots, but they prevent propagation. So the best way of thinking of it, is that now you are on the blood thinners, the clots are "under control", they won't get any worse and things will slowly get better from here.

It is your body that reabsorbs the clots gradually over time, which is why it might take quite a long time for you to feel better again.

I think for this reason (things should only now get better and not worse) that your doctors have felt it is safe to send you home after making their assessment of your wellbeing in hospital (looking at whether the clots as they are were causing too much of a strain on you - presumably not). But they may still want to look at the CT tomorrow, to double check that the clots are what's caused your symptoms, and to get an idea of scale of the problem.

The doctors may need to look for causes. Being able to find a cause or not being able to find a cause will decide sometimes how long you need to be treated for.

I think anyone in your shoes would feel really shocked and scared right now. Feeling breathless is a terrifying sensation, and it can also easily cause you to feel anxious making the breathlessness even worse! I think if you are feeling much worse and taking a little "time out" to calm yourself doesn't help, it would be sensible to return to hospital to be safe. But it's normal that you still have some breathlessness and pain.

Even if you have noone able to offer practical support, perhaps sharing what you are going through with friends and family might help ease the burden.

Good luck for tomorrow xxx

prettypinkdaisies · 09/09/2018 22:41

I had a suspected PE when pregnant and DVT confirmed, and was on injections for 12months, twice a day which were easy to do.

My husband has no interest if I am ill at all. He didn’t go with me to any appointments, I went myself, and he could have gone.

Your husband is worrying about work , don’t let this stress you out, you can do this.

I’m pleased you seemed to have clamed your self, try and get some sleep.

I didn’t stay in once diagnosed, they sent me home, and to be honest I hate being in hospital, so that was good.

Tomorrow, phone that friend, and pack a hospital bag, just in case you need it, and put it in the car, no need to tell the family, as you may well not need it.

Hope you feel better soon, it’s scary, but lots of us survived it easily.

Don’t worry about your operation, they’ll let you know what they plan at the hospital, just concentrate on yourself and family .

Good luck and best wishes

Laine21 · 09/09/2018 22:49

if you are having ANY difficulty in breathing you must go back to the hospital.

I had an operation on my left left leg years ago, was on heparin as a precaution for the two weeks I was in hospital, within 3 days of being sent home I had a blood clot on the lung, I had no idea what was going on, just that my breathing was getting more and more difficult. my now ex DH was asleep on the sofa, it was only one of his friends ringing him that woke him up and he saw the state of me and called the doctor. Ambulance followed, and a two week stay in hospital, the first week in a high dependency chest ward.

PLEASE go and get checked out.

sproutsandparsnips · 09/09/2018 22:56

OP presumably, as you haven't yet had a CTPA it's not a confirmed PE (but may be clinically likely). I'd be surprised if they'd discharged you with evidence of serious compromise. Re your impending surgery, make sure they know about it. If you do have a PE it may be an option to stay on the injections until after surgery rather than commencing oral anticoagulants.

tillytop · 10/09/2018 06:48

deepsea good luck at the hospital today. Flowers Brew

Sugarpiehoneyeye · 10/09/2018 06:57

Thinking of you Lovely ! 🌻

zigzagbetty · 10/09/2018 07:40

I was discharged from hospital last week with the same. Big hand hold for you OP today.
They kept me in because my breathing was bad but to be honest they just checked my stats twice a day and that was it!
Try to stay calm to help your breathing, my breathlessness was a lot better after a week of treatment though I still feel tired and very weepy. Someone on here suggested joining facebook groups for pulmanory embolism which I have found supportive as it is sometimes difficult to talk to nearest and dearest.
Hope today goes well Flowers

Needallthehelp · 10/09/2018 08:28

How are you today OP???

Did you get much sleep? I hope you're feeling better in yourself this morning.

After my PE i had to put my hysterectomy off untill after i had finished treatment. Just safer this way unfortunately.

Hope you slept well x

Mamabearx4 · 10/09/2018 08:45

Deepsea if you were my freind no matter what i was going trhough i would still be there to support you (ps you very well could be in rl as it sounds familiar) so please call someone for a chat just to vent if need be. Xx

Original poster
deepsea · 10/09/2018 08:53

I am just on my way back to the hospital. Thank you everyone for your advice and support - I will let you know.

OP posts:
notapizzaeater · 10/09/2018 09:05

Good luck x

LostboysNo1fan · 10/09/2018 11:00

Good luck deepsea

I hope everything works out ok Thanks

WhatWouldLeslieKnopeDo · 10/09/2018 11:08

All the best Flowers

adviceonthepox · 10/09/2018 11:10

Good luck hope it's good news Thanks

3luckystars · 10/09/2018 11:56

Best wishes x

IdahoJones · 10/09/2018 14:15

All good wishes, OP

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