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AIBU?

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Original poster

Handhold please. Absolutely terrified.

170 replies

fuckmylife2023 · 12/01/2023 03:42

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.

OP posts:
Morestrangethings · 12/01/2023 05:45

Summer2424 · 12/01/2023 05:32

@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 husband just built a whole ikea kitchen. And some of the instructions were wrong, even though ikea says they are never wrong. I said a number of times that ikea say it’s people that get it wrong, not the instructions. I then Checked on YouTube and there were heaps of short videos to explain why some of the kitchen instructions were wrong.

I took a picture of him sitting in a room of ikea kitchen flat packs as he’s opening the first one. The stuff of my nightmares. I can’t post it here because it would out me.

BeautifulWar · 12/01/2023 06:04

Doctors do their best but they're not geniuses

They could listen to their patients though and take their problems seriously? OP's problem was picked up by someone else who bothered to test.

Who the Dr in your life that you're so protective over, even when it comes to negligence?

Bpdqueen · 12/01/2023 06:04

I actually could of written this I had a&e send me home and tell me it was anxiety when it was a blood clot ended up with a pulmonary embolism. As scary as it is, now that they are aware of it and your receiving the treatment you will be OK blood thinners are an excellent drug and will stop any blood clot getting bigger or travelling. I also ended up being diagnosed with pots. I wish you all the luck in the world and hope you have a speedy recovery x

Veryverycalmnow · 12/01/2023 06:14

Well done for trusting your instincts and persevering. Hand hold and hugs. Hope they can get you sorted. Deep breaths.

LemonBounce · 12/01/2023 06:17

fuckmylife2023 · 12/01/2023 03:51

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.

Show quote history

I'm with you OP. Well done for pushing when you knew something wasn't right you have done amazingly. Don't feel like everything is on you - you have done what you needed to, now you can sit back and be looked after xxx

PaperBagsAreUselessInRain · 12/01/2023 06:20

Good luck and hope it all goes well

Young lad who works with us got a blood clot in his arm over Xmas. His mum made him go to hospital as his arm swelled up (he wasn't bothered - of course!). Turned out he had a massive clot, so big it was blocking the whole of the blood supply to his arm and some had broken off and got lodged in his lung.

He has just been given the all clear today thank goodness.

I didn't realise how common it was. He has urged everyone to get their d dimers checked (of course we can't but I can see why it freaked him out).

Great that you're in the right place at a different hospital

PaperBagsAreUselessInRain · 12/01/2023 06:20

He's early 20s btw

WestBridgewater · 12/01/2023 06:24

When you are ready contact Thrombosis UK, Clare is really helpful and has a young family herself.

GnomeDePlume · 12/01/2023 06:27

A hand hold from here Flowers

You are in the best place. IME the NHS hits its stride once it knows what is wrong with you.

I am on blood thinners for life because of an autoimmune blood clotting disorder. It is honestly fine.

Iamnotausername · 12/01/2023 06:34

Hand holding. When I was at college one of the lecturers had a lung clot. She was fine. Similarly, a friend had a stroke. He did need speech therapy for a little bit afterwards but that was the only long term physical issue he had and within the year, his speech was pretty much back to how it was. It must be scary but it doesn't mean you won't be OK. X

Namaste6 · 12/01/2023 06:48

Hi OP, a hand hold from me. Sounds like the severe anxiety (understandable btw) has settled a little and you're getting the right care at last. As others have posted, when they know exactly how to treat / Medicate you'll feel so much better.

In my experience, as the owner of a heart defect and many, many tests, conversations, considerations, it's the fear that gets you. Ultimately though, as long as your eyelids are opening at the start of each day, there's a life to be led.

You'll be fine. 💕

LivelyBlake · 12/01/2023 06:54

Wishing you all the best OP.

I just got up and I’m getting ready for work. I can’t believe that some of my colleagues are still on holiday! Lucky them.

I hope you have a quiet day, sending good wishes.

Bubbylana · 12/01/2023 06:56

Just to say Hi and glad your in the right place. My Bil had clots and was put on warfarin his ok now. I know quite a few people who have had DVT and are ok now so chin up.
Im going to M and S today to pick up some lesiure slacks ive ordered then Wikos to get my cleaning stuff, love Wilkos, then back home to wait for the gas man to come and fix my leaking boiler. I might start knitting DH a jumper got loads of navy wool. Knitted him a cardy which was miles too big but he wears it round the house to keep him warm. He wore it when his Bro and SIL came for dinner I was really embarrassed as my SIL is a great knitter. They just laughed at it.🥴

Els1e · 12/01/2023 07:07

Sending a handhold and a hug. No advice to offer about clots but sounds like you are in the right place now and will get the treatment you need. 💐

Bunce1 · 12/01/2023 07:16

How completely terrifying for you.

I hope you’re resting now. If you feel
oit of control again stick on an audio book and do the breathing to that headphones really distract me.

Vallmo47 · 12/01/2023 07:23

Thinking of you today OP.

Fluffycloudland77 · 12/01/2023 07:23

Drs are human too is such a bullshit excuse for people we spend a fortune training to be bad at their jobs.

Air traffic controllers are human too but you don’t have loads of midair collisions over Heathrow “whoops there goes another one”

The nhs wouldn’t get sued so much if drs weren’t so shit at their jobs.

BurntOutGirl · 12/01/2023 07:23

fuckmylife2023 · 12/01/2023 05:21

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?

Just back from a swim and now getting ready to go to work.

crabsaremisunderstood · 12/01/2023 07:24

Good morning - you sound like a lovely lady and I’m sure you will be just fine, but you have every right to feel scared and angry for being turned away. People are quick to defend the NHS at the moment (presuming that’s where you are), but that doesn’t mean it doesn’t have its problems.

Today I’m off to two schools (I’m a visiting music teacher) and will then relax at 7pm with after another long day of teaching. I’m going to pick up a coffee to go at Morrisons on my way to work - wild!

SamPoodle123 · 12/01/2023 07:31

What is your diet like? Read how not to die. It is a very interesting read about the whole foods plant based diet, which would be very useful in your situation. There are numerous other books on the subject written by various doctors. Eat to live is another book.

GrabbyGabby · 12/01/2023 07:34

Hi OP, hope you are doing better today. With your medical record & family history, i would be asking for a full genetic work up. Ask your consultant about the 100,000 genomes project. You should be able to access whole genome sequencing. This should tell if at least if your long QT is genetic. It wont help you today, but mighy help in the longer term. Best of luck.

Thomasina79 · 12/01/2023 07:37

So glad you are being treated properly now and are in the right place. You will be fine now. My son had a sudden heart infection aged 18 needing six hour open heart surgery, followed by another one some years later. He is now fit and healthy with a young family, on warfarin but taking it in his stride.

like him I believe you will get through this. It is terrifying and you have been fobbed off terribly, but you have been really brave. Well done for trusting your instincts and going to a different hospital. 🌺 x

LittleLillie · 12/01/2023 07:38

I am so pleased you’re being seen, you must have been been so scared x

Meseekslookatme · 12/01/2023 07:40

Sometimes the only way to get the treatment you deserve (and we PAY FOR) is to make a nuisance of yourself.
Well done for persisting.
I'm putting off starting my day, but I'm all out of coffee now 😩

Wibbly1008 · 12/01/2023 07:41

You did the right thing OP- blood thinners are a great start. You will be just fine, you’ll be here to Moan about your crappy pension with the rest of us in years to come. Sending u hugs x