Handhold please. Absolutely terrified.

[fuckmylife2023]

Shamelessly posting here.

I've posted a number of times under a different name. I've been suffering with heart problems for 5 months and kept being fobbed off in hospital as panic attacks and other anxiety related things. It turned out I have long QT syndrome and POTs.
I went to a different hospital 3 days ago as I didn't feel at all well. They did a d-dimer test on me (a clot test) and it came back positive at 635. It's meant to be under 500.

I expressed my concerns as my mum had a stroke young, and I also have heart problems. I was turned away.

I collapsed at home today, and my husband took me to a different hospital as I just didn't trust the hospitals answers. My d-dimer is 2109. They think I've got a blood clot. I'm just waiting on a CT scan and starting me on clot busting drugs.

I'm fucking terrified. I'm 28. I had cancer that very nearly cost me my life at 23. Now these heart problems and now a fucking clot. Due to the collapse they either think chest or head.

What the fuck do I do.
I'm a young mum. I'm so, so scared. I was just waiting in A&E waiting room and they got me on a trolley and I'm now waiting with lots of people around me. Just about to start the blood thinning meds.

Any success stories please I'm terrified.

Also - a massive reminder to anybody, don't let a hospital fob you off. If you know somethings not right, keep pushing. As if I took the previous hospitals advise of 'oh it'll come back down you're not having any chest pain' it may be a different story.

My mum had a stroke at 34, I am so scared.

Sending a hand hold ! The good thing is that you are now going to get the drugs you need - so what happened before doesn't matter now. Just trust the doctors at this new hospital, relax and let the good drugs do their work. Best wishes to you xx

You will be ok! I am here. You have caught it at the right time- be brave. You got this!

Here for a handhold OP

it sounds like you are in the right place now though and hopefully they get started on the meds shortly unmumsnet hug 🤗

This sounds awful but I think you need to remember that doctors aren't perfect .... they're human beings too... they're doing their best but they're not magicians

Doctors do their best but they're not geniuses

Not exactly a helpful comment

You’re in the right place.

Practice mindfulness breathing if you can, every time your anxiety and thoughts run away with you- breath in peace, hold it for 3 seconds, breath out stress. Repeat until you calm down.

Have you got someone with you? Can you call someone?

Yes I'm fully aware of that...

But if I took their answer and ignored the symptoms and stayed at home, it could be potentially fatal. I'd be a bit more sympathetic if it wasn't something life threatening.

I’ve had a blood clot in my lungs 4 years ago when I was pregnant. Was on blood thinners for a few months. Not long had my second baby - once they knew why I had collapsed/coughed up blood I was on the correct medication and I recovered fairly quickly!
now if I’m in a situation where my risk is higher - pregnancy etc I am put on a Preventative dose of blood thinners. So I always feel like now I’m safer than I was when I didn’t know I was at risk/prone to this. My risk was increased oestrogen levels due to my pregnancy.
hope you keep well. At least you are in hospital and they are looking after you. Hugs!

I am currently recovering from emergency surgery to remove two clots (one from each lung). I collapsed Friday night, was taken to the hospital, had a CT scan where the clots were found and was in surgery within an hour.

I understand your worry. I really do. But the fact you are posting on here is a “good” sign. I was in and out of consciousness. My medical notes from the event say that I was not expected to survive unless surgery was performed immediately. My liver and heart had started to fail and I now have damage to one of my heart ventricles. If it is a clot, it is probably manageable. I had s stroke at 22 also.

I am now blood thinners for life. It’s very possible to survive even this. I had a massive clot in each lung and I’m still here.

Currently clutching a cup of sugary tea just trying to breathe.
Waiting for an ultrasound machine as my veins are too messed up from my chemo.

(I don't know if anyone remembers, it was me who posted about being pricked 11 times when the hospital couldn't get a vein)

Different hospital now. I don't drink or smoke. Guhhhh this is horrible. But the staff here are incredible and they're being so lovely and reassuring.

Oh my goodness me I am so sorry you went through this. That's so young for a stroke and then a clot. What an amazing turnaround and thankfully you've survived. Do you have any long lasting effects from the stroke or clot?
What a lot to go through, I'm so sorry you went through it at such a young age :(

Way to offer support. 👍

Well hello fellow POTS person.

you have done exactly the right thing (persisted in seeking help) and are exactly where you need to be now - hospital. So I’m thinking you will be okay.

I’ve no experience with clots so have nothing to offer in that regard but you will shortly be on blood thinners (if you aren’t already).

You are understandably anxious and the sugary tea will help.

Post whenever, as much as you want. it will take you out of yourself a bit, distract you from your thoughts and give you something to do beside wait.

🤦‍♀️

meant as a snappy reply to @IDontWantToBeAPie

When will mn have an edit button? Here I am, feeling indignant, wanting to post my dumb comment and I f it up. Serves me right, I guess. 🤷‍♀️

@fuckmylife2023 I'll just offer a handhold. 💖

I had a D-Dimer result of 522 and the A&E doctor gave me blood thinners and booked me in for a whole battery of tests and scans next morning. Shocking that it wasn't taken seriously, but good that a different hospital is now treating you appropriately. I hope they resolve things for you quickly and you can get on with your life and stop being scared about what might happen.

@fuckmylife2023 ✋🏼

plus bundles of hugs.

they sound great there, so I trust you're now in good hands.

I can't do any of the mindfulness stuff or breathing in then exhaling slowly, it just makes me panic.

what helps me is counting 4, each corner of an imaginary square.

try to get some sleep x

They also make mistakes- they’re human. But their mistakes can cost lives.

OP You are in the right place, scans can find the clot, medications can break it down. DM had a clot a few months ago. Try to remain calm, you are receiving treatment, it’s been caught, fingers crossed the medication acts fast and you’re able to return home.

Hi @fuckmylife2023 i'm so sorry you're going through this 😔
I really hope everything turns out ok, sending you positive vibes xx ❤

Thank you all. I've been admitted, I've just had a chest X-ray now waiting for the CT. Feeling a bit calmer now I've had a brew and some biscuits.

I've got my head stuck in a book and all the staff are so lovely, which always really helps.
It helps to vent on here as a distraction.

What's everybody up to today?

Sending a hand-hold. I have a genetic heart condition which could prompt a sudden cardiac arrest. I understand the fear, for yourself and for your children. It does become easier to live with - but you need answers first. Well done for keeping on pushing. I am glad that you are in the right place now.

@fuckmylife2023 🙏❤ xx
Today i'm going to try and finish putting together a shelving rack i got from Ikea 😏 love looking at stuff in Ikea but bringing stuff home and putting it together, i always say it's the last time but always end up going back and buying more 🤦‍♀️

My dad had one on his leg that travelled to his lung.scariest few days of our family life op! He's still here annoying the f* out of us all decades later.😚hhe was on blood thinners for a long while and has an irregular heart rythum now.but nothing that gets in his way.
You can do this.
Get some breathing videos up on YouTube.keeo calm.rested.nourished.
Keep advocating for yourself.
Your a survivor op.look at all you've been through.one hell of a fighter id say.

Hopefully now this is the start of your recovery.

My DH had one at 21 in his chest. Stupidly he stopped for a beer on the way to hospital 🤦🏻‍♀️
They gave him the drug and he had warfarin for a while after and was fine. You are in the best place xx

Hey OP I am here to hand hold, honestly you are in the very best place you can be keep drinking your sugary tea it is the best remedy 🙂

To distract you - I am off to work in a moment I have a horrible commute but only have 7 shifts left before I start a new job which is at the top of my road....yay! I am a Nurse and I hope my colleagues are treating you well xxxx