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.

But* lol, bit of a typo there!!

Hi OP,

Just reading through your thread and you sound incredibly brave and also very positive, even through everything you have faced your still finding good with the little things! That nurse sounds like an absolute angel! I think just a card with some kind words would just be a nice thought. I work in a nursery so not the same at all but my favourite thank yous have just been kind words which make me feel like I am making a difference.

I hope your husband and daughter manage to get up and visit you soon it must be hard not being with them xx

As for book suggestions I have recently read Matt Haigs midnight library and really enjoyed it! Although it's not a crime or thriller book.

Just a little update on the weather I'm down south in Greater London and it's miserable cold and rainy so your not missing much!

Sorry to hear you had complications but sounds like they are dealing with it all very thoroughly.

as a HCP myself the best gifts are personalised thank you cards or letters. We can use them towards our revalidation. Also lovely gifts are a Starbucks or Costa gift card ☺️

Oh, OP! Haven't you been through the mill. So glad you are being thoroughly investigated and will soon be able to enjoy your well-deserved chili jacket.

My wonderful nurse who sat up with me all night holding my hand when I was terrified, having just discovered the massive clots in my lungs, was pregnant with twins so she was easy. A couple of pairs of bootees and a card!

I'm seeing a haematologist next month and don't deny I'm more than a little nervous myself. But we live to fight another day

Do you know once of the nice things in life are?

Restaurants (a hospital restaurant at that) that aren't stingy with their cheese servings, particularly on jackets.

I was so hungry and that was on par with the tea and toast after childbirth!

DH and DD coming at two, I need someone to wheel me down to the bookshop as I'm a bit unsteady on my feet but I've managed to find some people in our book swap page with some of recommendations on here so I'm excited to get my head stuck in a book at home with my heated blanket on the sofa.

Aiming to be home Monday or Tuesday. Just need to stay in to watch the Keppra and get the correct dosage if needed. I'm so happy I've finally got my answers and finally after months and months of not knowing what's wrong from the other hospital, they've diagnosed me and started me on meds. ❤️

All of you have been wonderful to speak to as well. Thank you for being here for me to chat to, I'll keep you all posted but I'm conscious I've done a lot of talking about me on here.

I do read all the replies of what everyone's doing etc so please let me know what everyone's up to this weekend!

It's a very misty day here in Surrey.

Goodness, you have had a time of it. I hope you have a speedy recovery.

DD works in a pharmacy and at Christmas they were overwhelmed with chocolates and biscuits. She says that they would have appreciated some savoury snacks.

So pleased to hear you’re having good care x

Oh you are in the same county as me OP! What a small world! We've had a lazy day, had my sons friend round for the day and my brother and his girlfriend popped in after they had been for lunch. Tomorrow is my step daughters birthday party (just family at home so will be a mad one).

I hope you had a lovely visit with your family and managed to get a couple of good books to keep you busy till next week! That's amazing you'll be home so quickly! Xx

I am so glad to hear you are on the mend OP, and hearing you’ll be home in a few days was good news.

Ooooo! If you haven't guessed, I'm in the royal surrey. They have been fabulous!
For dinner I had peri peri chicken with chips and peas. DH popped into M&S here and grabbed me some bits. Feeling really upbeat today. Was so lovely seeing him and DD. I had 1 seizure today, going to see what the docs say tomorrow but they said it can take a while for Keppra to work and to find the right dosage. But I've gone from having between 1-5 seizures a day, to just 1 today.

DH has also booked us a night stay in a lovely hotel for a few weeks time which I am SO looking forward to. He's such a goodun. Im very lucky.

Nothing new here really, but my window I have a lovely view of Guildford and all the lights and town is lit up. Probably with lots of students going to the clubs I used to go to when I was a teen. God those were the days. Anyone here go to the drink/harpers/casino in Guildford?
It smelt like a lost property cupboard in there!

Hope everyone had a good eve :)

Op how scary I'm so pleased you're getting sorted.

Buy the nurse an M&S gift card so she can buy herself treats while working - lush gift for us nhs staff believe me!

@Nugg I didn't even think of that!

That's what I'll do. Thank you!

So pleased to hear you're on the mend and receiving such good care ❤️

Had an arterial blood gas this morning. Christ almighty they hurt!!

I had a PE (pulmonary embolism) when I was 28 so multiple blood clots on both lungs (bilateral they called it) and I was told it was due to contraception pils, I had only been taking them for few months at that time, I later found out how common for women to develop blood clots if they are pregnant, have just given birth or even just taking hormonal contraception.

I was put on Xarelto (blood thinner) for 6 months and told to come off of it, I'm now nearly 32, I had a baby last year and because of my history I had to be put on blood thinning injections early on in pregnancy (around 12 weeks) and then after giving birth for few weeks which I really didn't mind as some women take the injections for various reasons (high bmi..etc)

And oh yeah, my father had a stroke.

I also have a friend who out of nowhere developed a clot in her leg and she was 29 she is now 36 and has been put on blood thinners for life (different type I think called walfarin) but is perfectly fine, so yea it is scary and traumatising but totally controllable with blood thinners.

A lot of women unfortunately don't know about this and then suffer from serious blood clotting issues before giving birth or on a long flight where they sit down for long hours (which is not so good by the way so need to wear compression socks etc) you'll be fine just investigate it thoroughly and don't forget to take your blood thinners. Sending you love.

I love the view when you see it at night with little golden lights dotted about the place. It's such a calming one isnt it.

Have you read any of t.m Logan books. He has thrillers down to a t.and his one 'the catch' you could read because it's being brought out as a tv adaption this week.which is a recovery read and watch win😊
What about signing up to borrow box on your phone too.that is very useful for hospital stays and recovery days.eapcecially if your library is a gooden.And which I can imagine whee you are it might be.

I'm so glad your on the mend.its all up from here 😁

If you're still in HDU, and they want more bloods doing - ask them why they haven't put in an arterial line. .... to save stabbing you each time!

Any update @fuckmylife2023 ?
hope you are ok....❤️

I had a PE at 27 and almost died (was the worst case of clots the A&E doctor had ever seen). Of course your case is more severe with the seizures etc but the clots don’t have to be the end of the world! The fact they’ve treated them with surgery (I had the thrombolysis usually reserved for stroke patients) means that the lasting effects shouldn’t be too severe.
from what I’ve read online the people who are left to let the clots breakdown on their own are still struggling months/years later whereas I went back to work 2 weeks after being discharged from intensive care..

Another clot survivor here - had a massive bilateral (saddle) pulmonary embolism in 2018 which swelled my heart up like a balloon. ICU for about a week followed by another week in the cardiac ward.

You will be on blood thinners very soon, this will give your body the chance to start breaking down that clot. I know you're angry and frustrated that you didn't felt heard, but you are alive and in exactly the place you need to be - they now know what's wrong, and they know exactly what to do to treat it.

I completely understand the fear - but one of the prevailing memories I had from lying in resus was thinking to myself, "keep calm, your heart needs you to keep calm". Easier said than done, I know.