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.

Glad you’re starting to get answers, just shows we know our bodies better than anyone else, you take it easy and get plenty of rest..sounds like you’ve had a tough time of it so hopefully can only get better from here x

Also just wanted to say thank you all so much for the lovely messages. I've read them all and it's hopeful to see so many survivors for blood clots.

The food here is so good! I had a veggie Dahl curry for dinner and it was really tasty. And a bowl of Macaroni cheese for lunch. This hospital is really, so good.

I spent 60 days at the first hospital between sept and dec due to the heart conditions. I'm so done with being in hospital, but being surrounded by lovely staff that perch on the bed and speak to me is lovely. I'm on a lovely quite woman's ward with just 4 of us. DH has bought me in a slab of galaxy which helps the munchies before midnight.

But thank you all. I posted a lot when I had my cancer. I will always have the cancer but due to incredible surgery and treatment I've got no evidence of malignancy. It took a long time to get there. Fun fact, (well it's not fun) the cancer I have is called peritoneal mesothelioma- caused by bloody asbestos. Got diagnosed at 23 and and had a 9 hour surgery plus lots of chemo but I made it, just about! I've had so many surgeries and chemos they think that is what has damaged my heart and caused the POTS / long QT.

But here we are. My little life story for you. A few years later Dd came along via IVF. She's the love of my life and the very reason I haven't given up. DH is amazing too, my pillar of strength, and he's very generous with his chocolate.

If you wouldn't mind, please keep chatting to me. It's a huge distraction when struggling to sleep on here.

What did everybody have for dinner?
And any good books / audio books to get my head stuck into will be good! Into anything really, but I love true crime books. I'm going to hunt for a podcast to listen tonight.

OP I'm not sure if you're into scary stuff but there is a podcast on BBC called... I can't remember the name now, but it's about paranormal things. One person describes their experience they went through and then another person who is more rational tries to explain it away, things like alien abductions and UFO's and ghosts. In fact, let me just google it, because it will explain it better than I can.

www.bbc.co.uk/programmes/m0010x7c This is the show. it's called Uncanny.

I also am a fan of a podcast called Even The Rich. It's about celebrities and their stories. It's on it's 156th episode so I'm sure there will be one famous person you are a fan of (unless you dislike all celebrities lol) podcasts.apple.com/gb/podcast/even-the-rich/id1500477470

Thank you for posting that, that was really nice to read.❤I am honestly not a bad person, or don't try to set out to be. I think my main issue is posting too fast and furiously when a deep breath and a second read is probably more appropriate, but I'm impulsive! and want to share my views with everyone!

So lovely to see you are feeling a little more settled. You’ve been dealt a shit hand and no mistake.
Your little one is your blessing and your DH
sharing his Galaxy bar is a sign of true devotion.
Do you know how you came into contact with asbestos? I ask because my FIL had the same cancer, he took took his employer to court and won!
Wishing you the very best op.

Good morning OP. Well it’s morning for me here, anyway.

Youve had a lot of health challenges for a young person. It was interesting that you said the medical staff is seeing more clotting post covid. It’s something I know that they’ve observed, but it never seems to make the news, and our govt. at least , never talks about it. Such a reversal - very little info now, so much info in the early covid years. I guess the upside is that they will get even better at treating clots, (and POTS too possibly, because some medical people think covid can also cause post viral POTS in some people).

I’m pleased to hear you are in a nice ward of 4 women. I have no idea what the Galaxy you mentioned is, but it sounds like a good thing. I will check in later.

Dear OP, just wanted to say I’m wishing you all the best. You sound like a really lovely woman with a lovely family who has been through a lot, crossing everything for you that the surgery goes super smoothly and your recovery is nice and quick. Take care xx

Hi Op,

Miriam Margoyes audiobook is good if you aren't offended by the amount of swearing. Loved all of Ruth Jones books and narrated by her so also good.

What sort of podcasts do you like? Enjoy your galaxy 🍫

Bloody hell OP, what a strong woman you are. And it sounds as though you’re now being treated really well.
We had steak for dinner and I recently discovered the parenting hell podcast, listened to the one with alison Hammond and laughed while I was on my evening walk. It’s not very long (i skipped to the part where she eventually joined, it seemed as though she was having technical difficulties which I relate to as i permanently have these), and just enough to make me want to listen to a few more of them.
Best of luck for the coming days, wishing you a speedy recovery and that you can get home to your lovely family very soon 💐

I am so glad you are being treated now and were finally taken seriously.

My DH had cancer then presented with the symptoms of a blood clot, his d-dimer was raised and the GP surgery were fantastic but the hospital were bloody awful. He was pretty much ignored and sent on his way. A few days later he had a massive stroke and just before discharge from hospital was found to have saddle embolisms (it was only found because I kept nagging as he'd missed a scan for his tumour while he was an inpatient), the stroke put paid to any further chemo.

I really hope your treatment is easy and successful.

I had fish and chips for dinner but the oven cooked variety, it was a crap dinner.

Hi OP!
I hope your treatment goes great.
I had toasted cheese for dinner. I live in the moors and it is blowing a gale so my DH is strapping down my greenhouse before it flies away :)

You might like the true crime podcaster on Youtube called "Casefile: true Crime Podcast". The guy has a lovely soft voice and an Australian accent. Each story is about an hour long. I hope you have a settled night and will send a prayer up for you, sweetheart.

OP you sound amazing, you write so beautifully! I'm glad you are being looked after!
I had beans on toast with cheese on for a late tea! It was amazing!!

Big hugs xxxx

Wishing you all the best OP! I am currently listening to Miriam Margolyes read Bleak House on audible. She is brilliant at doing all the voices and has really brought it to life. It might suit you as it's very, very long!!

I made a slow cooker curry for dinner but it was completely tasteless - not sure what I did wrong. Your hospital dinner sounds way nicer!

I like a lot of the Tortoise media podcasts: Sweet Bobby, Hoaxed and Hidden Homicides are all good but not exactly "uplifting".

I also enjoyed Uncanny.

Dr Rangan Chatterjee does a great podcast too - he has such a nice, calming voice.

Your being sorted now ok.your on your way.that such great news . Remember there s a plan in place now so all u need to do is ride it.take each moment as it comes,each stage as it comes.try not to " what if" just let the next steps happen.
You've been through far too much in your life.but my god it will make anything good you go through feel all the more special and a gift won't it.
You will be home soon.
Keep resting and eating and drinking.
Have you a preference on what you'll to listen or watch.
Hallmark Christmas movies were major cheese and there are loads on you tube.
Things like escape to the country or a place in the sun are my go to comforts.
Love a bit of do so watching too.
Tm Logan books are a thrill.
Isabelle broom
Heidi swain and Cathy Kelly, Cathy Bradley,veronica Henry, Patricia Scanlon ate my go to comforts
Karin slaughter is the shit in thrillers lol.
Do you like to draw.or journal.
Perhaps even just some artvtherapy you could doodle.or make up stories about the people your seeing in your day.
I've been watching Gordon Ramsey new show today.yep I'm hooked.
Had a bad night myself.still up.
It's very windy here.
Do you have any dreams or bucket lists you want to get to.i expect after what you've been through every day feels like a treasure.but maybe also makes you think you have to go grab life?

I had a clot on my lung in my thirties, coughing up blood and rapid heart beat etc . I was absolutely petrified as I was having a baby , I am still here at 51. Think positively that now you are being treated, the haematology team were amazing !

Got my gown on, starving! Been NBM since last night, just waiting to go down to theatre.

I'm notoriously hard to cannulate and they managed to get a shiner between my knuckles first time. Tad painful but rather they do it there than try loads in my arms.

Already placed my dinner order. Ordered a chilli jacket with cheese for when I'm back.
You get a proper 3 columned menu here, had everything on it that a cafe / canteen would. Jackets, paninis, curry, salads etc.

The staff here have been utter angels. They get shouted at, they're rushed off their feet, and they still make time to come and sit on my bed, make sure I'm okay. Little things like that make it so much more bearable.

Lots of suggestions for books and podcasts. They've got a book shop here, I'm going to have a wonder down a little later and see if I can find some books to read. I'm a bit of a bookworm and I need to hunt for a good bookshelf as at the moment all the books are under our bed and I forget about them. Is anyone reading anything good at the mo?

Hope everybody has a good day, will let you know how surgery goes!

Hi. Went for a run.... well...l use that term very loosely..... it's more of a "woggle".... so running at a jogging pace with a whole lot of fat wobbling!

I'm currently sat wearing my oodie (still not sure what the fuss is over them despite me wearing one - Disclaimer: my sister gave me it)... trying to warm up. I'm always so cold afterwards

Hopefully you're in surgery now and everything is going well

Fabulous that the food and staff are so good, that definitely helps

It will be lovely for you to see Dd when you can - what a great thing to look forward to. And a dh that shares chocolate!

I'm having a mixed day - one toxic boss and one too weak/compromised to do anything so quite in the mood for quitting! Having takeaway at friends tonight then staying at my sister's tomorrow with 2 other friends so a good weekend planned

Off to theatre now! Nervous :((

Good luck OP

Book suggestions:

"Educated" by Tara Westover
"Lessons In Chemistry " by Bonnie Garmous

Good luck!

You sound amazing OP. Feel better soon and enjoy your chilli🌷

Hoping surgery went well and you've enjoyed your dinner. Thinking about you. 🌹