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.

I remember your other posts. I'm so sorry it's come to this but I'm pleased your husband had the frame of mind to take you to another hospital, it sounds like they're not ruling anything out and you'll get the treatment you need.

OP, I am so sad reading your post. Understandably you are terrified, and I know it''s easy and flippant for me to say, but please try not to be too terrified. You and your husband were absolutely right in going to a different hospital for a different POV, some hospital staff are absolutely arrogant IMO with their opinions and think their words are gospel, when they aren't. I am sending you silent hopes that you will get better and recover from this ❤

Exactly ! They are not magicians or wizards who can see what’s happening internally so WHY do they take so long to decide to let the machines that were invented to do that , do just that ?! They so often guess and send home . Let science do its job and scan patients . Many other countries err on the side of caution and let the machines do their job, hence their much higher rates of early detection of diseases. It’s not hard. Much love OP, you have every right to feel frustrated with them.

Dear OP, I just wanted to wish you well and a speedy recovery 💐 xxx

Hello OP, sending you a massive hand hold, and hoping the doctors have a good plan in place for you now (I am sure they do).

Bloody hell, you’ve been through so much so young, OP. Well done to you and your husband for having the sense to go to a different hospital. I’m a big defender of the NHS, but nothing is infallible. It’s not unheard of that things being ‘unusual’ for the patient’s age can cause problems.
Enjoy the sweet tea and I hope you’re home soon to recover.

Morning!

Well you've had a shit few days. Glad you are now being looked after.

I'm not working today so will go for a walk , do some food shopping and read the meters. I might even re-plant some sweet pea seedlings as mine all got eaten. It's all rock n roll here.

I've got a chronic illness and been in hospital. It's funny that the mundane things that drive you nuts in real,life suddenly become nostalgically lovely and you miss them once you are tied to a drip in a hospital bed 😂

You're in the stage of relief but still scared and unsure of the future so please make sure you articulate those fears here or to an actual person in person IYSWIM. It's ok to not feel ok.

You are in the right place. Sending you healing vibes and sisterly solidarity. ✊

Oh OP, you’re so young to be going through all this, and after cancer too. Life does seem randomly cruel at times. But thank god you’re now getting properly diagnosed and, I hope, effectively treated.

Sending love, handholds and careful hugs.

The right drugs will really help.
My father in law, at age 84, had a funny turn and collapsed. They detected a massive saddle embolism - a huge clot straddling both lobes of the lungs - and prepared us for him not making the night. They gave him the drugs they will be giving you to break the clot, but doubted it would be able to shift such a huge clot, or that he would be the same again. It was a 'well we may as well try' situation.

3 years on and he is still here. That medicine worked wonders. He now also has other medicine to prevent further clots.

Its scary, but the positive is that they have caught it.

I hope you get the CT scan soon. Sounds vert scary!

Well dh and I have just squabbled about the right way to wipe the shower down after use. He has very strong views about it having just redone the grout which would have apparently lasted longer if I'd...well actually no idea, I wandered off at that point and have gone back to bed with a cup of tea. Later I'm planning to clean and do household admin so absolutely no excitement here.

I've known several people (some quite young) to develop large and worrying blood clots. All were treated successfully and have recovered fully once diagnosed (that seems to be the tricky bit).

Positive D-dimer (ie, high) does not necessarily indicate a clot. Its only useful if its negative to rule out a clot. Does that make sense? Negative=not a clot. Positive=could be a clot, could be something else. For example its raised in pregnancy. Yours could be high because your arteries and veins are messed up with your previous chemo. Usually if your result is high they'll send you for a scan to check if there is a clot. Doing the d-dimer test first means they don't have to send everyone for a scan.

Even if the result has more than tripled in a relatively short space of time?

Sending lots of love to you OP. Tea and a good book are surely one of life's top pleasures? Just a shame it's in a hospital. Glad the staff are lovely. Here's an interesting fact to distract you. Topical for a hospital setting too! 😊www.instagram.com/reel/CnKS8D2hP_x/?utm_source=ig_web_copy_link

My eldest DD had a blood clot in her legs when she caught Covid and was bedridden for a week. This was initially dismissed as a Covid symptom but thankfully hers started to swell at which point I frogmarched her into A & E. She had 3 months of Rivaroxoban and was absolutely fine, so try not to panic. The main thing is that they know you've got the clot and can react accordingly.

Yep. Because whatever the other thing is that causing the D-dimer to be high could be getting worse, or varying up and down. D-dimers alone cannot confirm a clot. There's a good chance it could be a clot, but it still could be something else.

(Specialist Biomedical Scientist in Anticoagulation with over 20 years experience)

Another hand hold, please try to breathe and eat and let your body relax. I know, I know it’s easy to say but the stress will be worse for you. Positive thoughts. You are in good hands and you should be home soon. Take care and keep talking whenever you feel like it. We are here x

I had a bi lateral PE and DVT 12 years ago . I was in hospital for 3 weeks then on thinners for 6 months. They never found a reason why. Scroll forward to last year and I had another DVT so now on thinners for life. I've had another DVT in June last year and a PE at Christmas. I'm waiting to be tested for APS, which I think I have, it would explain my medical history with 2 prem births after my placenta detached ( 22 and 27 years ago) .
Ask lots if questions and ask your consultant to find out why this has happened. I'm glad that you are getting the right care now. I would say to always listen to your body/ gut instinct. My d dimmers are usually negative when I get a clot , so I have to stand my ground with the hospital.
Sending hugs and you can DM me any time 🤗

It’s evening in Australia. The cicadas are singing, only singing is not quite the word as their beating wings make the sound, apparently, I think, I always forget. lol. The cicadas noise comes in waves of sound and will suddenly stop, then I hear the bell birds almost ready for bed. It’s a warm still evening. There is a slight breeze, I can see the top of the very tall palms moving slightly. It’s been a hot and humid day, a two shower and a swim day, and still I sweat. I fancy I can smell the eucalypts.

In the distance, when the cicadas fall silent, disturbed for a moment, I can also hear the faint heartbeat of the surf. I live not too far way from a place with First Nations’ name which means heartbeat of the sea. Ever since I heard that name, I think heartbeats when I hear the pounding of the surf. There’s the pound and the swish back, and the pond and swish back - most definitely the heartbeat of the sea.

Later, when it’s dark I’ll probably hear the possums, either fighting or rooting on the roof. And I’ll hear the bush turkeys (which are the colour of the Australian Aboriginal flag, black with red and yellow on their necks), foraging around in the yard. If we leave the doors open they’ll come into the house when we aren’t looking, and they are a bugger to get out.

We live amongst gum trees and it would once have been forest. In my front yard there are at least 20 gum trees. I’ve tried counting them but I never can remember exactly how many. It’s some kind of bush trick - the bush plays tricks on us all.

Those gums cool the air on all but the hottest days. If I stand in the front doorway of my house it is always cooler there than anywhere else. The tall trees behind my house, most of those not indigenous to this part of the country, shade the back of my house all day in summer and still it can get hot - the hot sun can warm the breeze coming from the west. On a hot summer’s day when humidity is absent, the washing on the line can dry in half an hour, if the breeze is right.

The roads are winding all the way to the next suburb on this stretch of the coast, driving them I can look to my right or left and see the wilderness still. Hopefully they will never clear that land. It’s national parklands so fingers crossed, it will still be there for future generations.

Night is falling, but the bellbirds are resisting sleep. Soon we’ll hear the possums on the roof. Never corner a possum. They’re vicious little buggers when cornered.

Hope you are feeling a bit better Op. I’m off to bed. Will check in on you in the morning.

Oh love - you must be very scared. But you have blood thinners on board now so your body can concentrate on breaking any clots down that may be there with the fear of getting any worse significantly reduced.

As above, D-dimer doesn't confirm a clot, but rather alerts the medics that there is a chance you have one. You'll have a CT with contrast to confirm. Or there are other reason why it may be high.

I had a massive bilateral Pulmonary Embolism which nearly saw me off, but I'm here, still moaning and posting banalities on Mumsnet, with minimal issues nearly 5 years on.

I remember lying in resus during one of my fully conscious moments thinking "just stay calm, don't put any more stress onto your body". Easier said than done, but the calmer you can be the better.

I was ill with breathlessness and chest pain last year. My d dimer was 2740 and my chest X-ray showed pneumonia and pulmonary oedema. I also had pleurisy. They said I may also have a blood clot, but only a CT scan could actually confirm that. I was preemptively started on injected anticoagulants and had the CT the following morning. It showed I had sizeable bilateral pulmonary emboli. They kept me in for a week and I then continued oral anticoagulants for six months. They also started a wide rage of tests to exclude underlying undiagnosed cancer, which can cause the blood clots. Thankfully no cancer has been detected, but they did find some other gynaecological problems and dealt/are dealing with those. I know it’s scary, but you’re in the right place and hopefully they will now be as thorough with you as they were with me. Take care.

I've had two big DVTs and am on long-term Rivaroxaban. It doesn't affect my life much at all, I just do what I was going to do anyway. I need to be a bit more careful if I get a cut, because it won't clot as quickly, and I need to notify people like Dentists about medication. Apart from that, business as normal.

I remember being in hospital with a huge blood clot being quite terrified, but it all turned out OK.

I hope you are feeling a bit better, and the hand holds helped. Best wishes for good outcome with the suspected clot and everything else!

Have pm'd you a success story!

How on earth did you think this was an appropriate thing to say to someone in OP's position?