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.

Deep breath, you’ve got this. It’s scary but blood clots are definitely treatable, I had one on both legs a few years ago. Make sure they give you anti-anxiety meds along with any other treatment, being worried and stressed won’t help anything.

You are ok op. I know the clot is scary, but can be so easily treated.
The heart problems, I've been there, waiting for heart test results! It's frightening.
The good news for you is they have found out what it is, and now to begin treatment. You are going to be ok.
I know you've had to push for this, and there are alot of deaths from undetected heart problems, but yours has been found, thank goodness! You will be in the best hands now and you will be ok.

Hello, I just read this while having my lunch and felt I should reply... I know its not everyones belief - but I will say a prayer for you that you get through this. Don't panic ( I know easier said than done)....tea and a book sound like a good idea...im currently at home just had lunch and browsing mums net... need to do some study and then go and pick the kids up and make dinner etc... Sending hugs to you

Hi OP.

I had a d-dimer of 2k early last year, I’m 34 and they linked it to Covid I’d had six weeks previously. Have you had Covid recently?

It was very scary (had clots in my leg and lungs) but after three months of blood thinners I am pretty much fine. The doctors missed mine too, at first. You’re in the right place. Hope you feel better today.

Incidentally I also have the heart condition (not POTS though). Perhaps there’s a link somewhere

Hi op, sorry you've had all this happen. You're on the path to treatment now so just stay calm and remember you're doing the right thing and are in the right place.

Today I'm doing an absolute shed load of cleaning and I know by tonight nothing will actually look any different! How is that even possible?

Big Hug OP.
My husband has a long QT syndrome--do you have your beta-blocker prescription sorted? They need to do it for you as a priority. This will also help your anxiety. My husband used to collapse regularly as a child (similar to what you are describing) and was mis-diagnosed with epilepsy. So it is a really good thing you have the Long QT diagnosis. Once my husband had a correct beta-blocker prescription, this condition is not affecting his life at all, he is absolutely fine.

What could cause you to collapse if you have long QT: sudden loud noise, sudden scare, stress, anxiety, sudden overwhelm etc. If you haven't got beta blockers yet, it is absolutely your main priority to stay as calm and relaxed as you possibly can (easier said than done I know). Breathing fully, meditation apps, whatever helps you to stay relaxed.

Sending love

@fuckmylife2023 I can relate! I had a pulmonary embolism in 2009. I had pain in my ribs, shortness of breath, I was worsening by the hour. Called the NHS and was told to go straight to A&E, it was quicker to drive. Was taken into a cubicle, bloods taken and my D-Dimer level was elevated and I was admitted to a ward.

I was given Clexane injections, then put on Warfarin for six months (that made me feel rotten). I had a CTPA scan on day 3 and had small blood clots on my lungs. I discharged myself after five days in hospital because I had a baby to look after (and missed my baby terribly!). I didn’t look particularly unwell, I think the doctors were surprised when they found clots. Some of the ladies on the ward were very, very ill - I helped to feed one lady as kidney failure had caused her hands and feet to go black - I will never forget that sight - and couldn’t bear to see her go hungry because the staff just put the food in front of her! She was so humble and I joked about it being easy to feed her compared to my wriggly 12 month old! Nonetheless, it had a profound affect on me and I won’t ever forget that sweet little lady.

I survived and thankfully not had one since. Mine was caused by an underlying health condition which was flaring at the time, and inflammation in my blood vessels. It is scary, I was quite traumatised by it all and for quite some afterwards would worry about every niggle/pain in my chest and I’m not an anxious person. You’re in the right place, try to stay positive, calm and ask plenty of questions.

Hi everyone,

I've read all of your messages. Thank you so much, they've kept me preoccupied! I managed to get some sleep and I've just had my CT scan. I'm on medication for my long QT and POTs.
They are a bit reluctant to give me anything for anxiety as most SSRIs can prolong QT more.
I do take 15mg mitazapine each night though which helps me sleep.
I can't believe how many of you have had clots / DVT! The doctor I spoke to said many more are coming out the woodwork since covid.
Will keep you posted on the results, I've moved from majors onto a ward now.
Thank you everybody for your messages. You're all wonderful :)

Missing my husband and my baby though!

Tell a lie she's not a baby she's just turned 2. We did IVF after my cancer to have DD and I miss her so terribly when I'm away from her but she and DH have made a fort in the lounge and are watching movies, so she's having fun at home. They're coming to see me later now I'm on a proper ward.

You are going to be fine!

You are young, fit and healthy, don’t drink or smoke, and are in the right place now getting treatment for something that is actually very common (I know two people who have had clots and both were fine!)

Please try not to worry. You have done everything right.

I had two massive pulmonary emboli, one in each lung, last summer. DVT travelled up from my legs following lengthy surgery and a period of immobility. I know just how terrifying this is. I had dangerously low oxygen levels - down in the 80s - couldn't breathe properly and had to be kept on warm oxygen for several days until my numbers stabilised and they could wean me off it. I'm still on Apixaban now and likely will remain so for the rest of my life.

You've caught it in time and are in the right place. Once they get a large shot of Fragmin inside you, those clots will start to dissipate.

Offering you a handhold and sympathy.

Goodness, this must have been so frightening. Thank goodness you went to hospital. I'm so pleased you're getting the help you need now, OP.

I’m very pleased you have been seen and are now starting treatment. Also pleased that you were pushy and refused to be fobbed off.
i think every chance you will feel better very soon but you must be terrified. Despite the issues the nhs is having you are in the right place

Hello OP, what an absolute bugger! I can, over 40 years on, remember encountering my first patient with Long QT in A&E, all this time on I can still remember the symptom list. Yes, it is scary but life can be scary if you let it. You have a diagnosis and you have a care path but you must try not to let your diagnosis define you as a person, you have already done this once with your cancer. You will get lots of practical advice from your cardiologist, ask them if they are aware of a local support group, if there is none, then set one up. Turn your diagnosis on its head you have been given the permission to live everyday to its fullest and to make the most of every opportunity.

Very pleased to hear your update OP.
Glad it's going in the right direction for you.

My good friend almost died with a blood clot in his leg causing clots in his lung at 25. His GP had misdiagnosed it as pleurisy as he was so young, a non smoker, really fit and sporty. It was frightening.
However he was treated and is totally fine, over 25 years later. He needs to take warfarin , but other than that no issues.
My mother in law also collapsed with a blood clot about twenty years ago, she is still in excellent health at 87.
Get well soon OP .

I don't have QT issues, but was diagnosed with prolonged PR in my 20s unexpectedly. They give that a scary name of Heart Block. So naturally you think f**k and panic, so I understand a little of how you perhaps feel. But now you know you have it you can set about managing it, which has to be a good thing right? Just a shame you have been messed about to get to this point.

I had a pulmonary embolism in my early 30s (likely caused by the pill as none of the other criteria fitted) and haven't had any issues since. The only side effect is that I think it got me prioritised on the covid jabs list!
My d dimer was also in the 2000s and I had the same stone cold fear when my doctors called to tell me that and to head straight to A&E. The good news is that they don't mess around with lung stuff or clot stuff. I was seen quickly that day, and on all the following days I was in and out. Straight onto fragmin jabs as warfarin takes a few days to kick in, and then on warfarin for three months. In that time my immune system basically took care of the clots itself. They were in both lungs, but small, so no need for any surgery or anything. It's the kind of thing the NHS takes very seriously though so any tests, any meds etc will happen very fast, or at least they did in my experience.
It's terrifying because it feels like your body can't be trusted, but if it is your lungs then actually your body is being amazing as that's them filtering the clots before they can reach your heart or head. It's also a strange process when you're young as everyone else on the clot wards or clinics will be about 50 years older than you. I never saw another young patient and got referred to as 'young and healthy' a lot even though I didn't feel either at the time.
One thing to remember is that warfarin affects all of your blood not clotting, so you might have heavier/ faster flow periods. One of mine was utterly horrific and I though I was going to bleed all over the tube. It's not something they really flag because of the average age of their patients. There are a few things it affects like how much green veg you can eat and you can't really drink on it, but nothing terrible.
Giving you a hand hold. It's a confronting thing to go through but actually I found it was surprisingly easy to fix for how serious it was.

I’ve had over 12 clots. My lungs brain spleen arm legs

if you need someone to help you. Im more than willing. I know a good haematologist etc

my story is too long but same thing. I went to the hospital with severe back pain. I was told it was a panic attack and told to leave. I collapsed in a corridor and the consultant found me. He was actually looking for me as he believed I had a clot

I had bilateral clots and nearly died.

Oh I had a stroke too!

I was 32….

I was diagnosed with a heart that beat too fast, and they found a blood clot in it. They put me on meds to slow the the heart down, and blood thinners, and said to wait for the clot to disperse. Which it did. I'm still on meds but that's a small price to pay.

Hope you’re feeling better and get some answers soon.
My DH had a DVT I. His leg six years ago, successfully treated with clot busting drugs then Osiris months of blood thinners, not Warfarin, he had Apixaban, less side effects apparently. He then had a ‘turn’ in the garage, a dizzy spell, medics didn’t seem concerned. Then two years ago he had a stroke, It was jets before Christmas 2020. He looked fine, just couldn’t speak. I knew,m don’t ask me how but I knew he was having stroke, 999, blue lighted to hospital, clot busting drugs again then transferred to another hospital in case he needed brain surgery. Thankfully he didn’t, he survived and is doing really well. (Apart from getting words mixed up in sentences or words mixed up ‘mixturedolly’ instead of dolly mixtures for eg.)
Tests showed he has a genetic disorder in his blood, a shortage of patients C.( Not to be confused with Vitamin C.) this causes his blood to thicken and cause clots. Apparently it’s passed down through maternal line which explains a lot. Our two dd’s have been tested for it and they are ok. His brother has it though, he had a blood clot in his lung six month before my dh had the stroke.
DH is under the care of a Haematologist now, she rings him every six months and he has regular blood tests. He’s on Apixaban for life now, his dosage has been halved recently, the consultant is trialling him on the lower dose for three months to see how he gets on.
This might sound daft but since this was discovered and treated he’s got so much energy now compared to before the stroke. Probablg because his blood is thinner and his heart doesn’t have to works out hard to pump it around his body.

Update!

CT has found the clot. They think it's a DVT that has started from the intestines but it's worked it's way up a little bit. They haven't started me on blood thinners yet just in case it's an internal bleed as due to where it is, it's hard to tell on the CT but it's pointing towards a clot in my abdo.

I'm scheduled for surgery either tonight or tomorrow whenever I can get a slot to manually break down the clot or if it's a bleed, try and fix it. But they're hesitant to put me on thinners in case it's a bleed for obvious reasons.

I'm a little bit jaundiced and my blood pressure is through the floor so they've put me on lots of IVs today and given me some pain relief. Wasn't expecting that at all!

Will keep you posted - I quite enjoy getting out to sleep so will have a nice Kip after and enjoy a post op sugary tea!

You get grief for posting a lot of the things you do on here. I really liked seeing your username above such a kind and supportive comment. Thank you.