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NSHN Forum Support & On Topic Forums. Some additional boards are viewable to members only => Survivor Room => Topic started by: icklechick on October 22, 2015, 05:19:50 PM
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Haven't logged in for around 4yrs...
Anyone around I still know?
Things are so so different for me now. Self harm is s thing of the past after battling for near on 20yrs with it.
Anorexia is also in the past.
I'm married, I have two beautiful children.
But now I'm under investigation for the possibility of having a life-limiting condition after suffering a heart attack whilst pregnant with my second child.
I feel so strange about this. I feel angry that I wasted my teens, twenties and start of my thirties intent on self destruction, and now, at the age of 36, I'm facing the possibility of not seeing the end of my 40's.
Of course, there's also the possibility I haven't got this thing (Ehrles Danlos Syndrome vascular type)
I'm oscillating between trying to be thankful and grateful for every day and feeling desperately hopeless when I think of the possibility of not seeing my children grow up (they're almost 4 and 8 months)
So yeah.... I'm back!
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:angel:
I'm sorry to hear about this - however, it is still only a possibility at present. Looking on the bright side 8)) , with the fact that you've previously had considerable medical attention (plus your current age), I'd be very surprised that it wouldn't have been noticed a long time ago.
Meanwhile, ee can all keep our fingers crossed for you.
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Hello lovely.
It's such a shame to hear that you could have something like that when you finally have the happiness you've always deserved.
Xx
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You'd think so wouldn't you Rob? But then no one predicted I would have a spontaneous coronary artery dissection at 29 weeks pregnant. Out of the blue. One minute talking on the phone, next minute, having a heart attack.
And then they look into my family history and discover family members had early heart attacks, dissections, strokes etc.
I'm hypermobile, have had two premature babies, have fragile scar tissue and seemingly lots of other pointers towards something ehrles danlos related.
The waiting is driving me crazy.
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Hey IC, I'm one of the oldies though not sure you'll remember me.
I have ehlers danlos type III and have been through the investigation for vascular, I have cross overs with vascular but not the vascular type itself. It's a weird and scary time waiting for the biopsy results but all I can say is worrying and stressing now won't change the outcome. You either have it, or you don't. I'm probably coming across as blasé about it but after having the freak out and being where you are I finally accepted it and that's not to say I don't have struggles and feel overwhelmed at times but the general day to day gets easier.
EDS isn't very common and I would say 90% of MHPs have never heard about it so it's easy to get to your mid thirties without being diagnosed with it.
There are support groups on FB for it and also EDNF.org webpage and support forum.
I would also get checked out for postural orthostatic tachycardia syndrome (POTs) as that is an extremely common secondary to EDS.
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Reeta! I remember you :)
I've currently got a 24hr trace on for that very reason. Cardiac rehab wouldn't touch me after my heart attack as my pulse shot up just by standing up and they didn't feel it was safe.
I'll probably have lots of questions for you.....
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Ask away, I might not know the answer but I should be able to point you in the right direction if nothing else.
I've had the 24hr trace and the 24hr BP test. Actually I've had that 3 times as they thought their machines were faulty the first 2 times lol. The machines just couldnt detect my BP when it was low and it told them I was dead, now I'm on 2 heart meds and I have a BP!
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Multiple name changes in that time...but I'll PM.
Just wanted to say I remember you too. I'm really glad that you've been able to get to the point that things are in the past. Fingers crossed that they are wrong on the diagnosis.
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Well done for your recovery and survival and for having a family of your own you can be proud of. It must be really scary to be investigated for a serious illness. I can understand the way that you can view your earlier years spent in self destruction but now face something that could impact on your life in a major way. I hope that you have support with such a difficult time and that you will know the results of tests soon, hopefully you do not have the disorder and that this can be ruled out.
You have done remarkably well, hold onto that whatever the future holds, none of us knows. Getting the most out of life and each day is important, something we need to practise whenever possible.
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I have no idea who you are :)
Just thought I would pop on too, out the blue!
It is unfair that you beat one illness to face another, but unfortunately mental illness and physical illness are not mutually exclusive.
I have zero knowledge of EDS, but I know you do hear about people finding out they have all sorts of conditions, and going on to have a 'normal' life. Look at Stephen Hawking - he was given 3 years and he's still here 40 years later.
I didn't realise when I was 18 you were 26, you always seemed so grown up and wise :)
Fingers crossed for good results with the trace. Totally not related, but when pregnant, and for the first 6 months after having Cass I had really really low blood pressure. Would fall over and flop on the ground, and as I was in hospital at the time they could measure it and it was so low they couldn't even get a reading. I also had low iron and folic acid. I eventually just got better, and they put it down to something to do with pregnancy (great NHS diagnostics there). So fingers crossed it was 'just' a reaction to pregnancy and you'll be fine from now.
xxx
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Hi icklechick... I'm sorry to hear your going through a hard time at the moment with physical stuff... I def remember you tho I used to be called bluegem x
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Hi Ickle, I remember you. I'm sorry you're having difficulty with your health at the moment. I hope it sorts itself out soon xx
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Just popping in out of the woodwork.. I'm sorry you are going through tests and such an immensely worrying time. I am so glad that things finally turned around and life brought you much deserved happiness. I don't visit here too often now but, I will pop in again soon as I very much hope that life will again bring happiness and worry free times ahead dwaf
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The NHS can be so frustrating....
I had a 24hr ECG monitor. It showed up enough worrying things for the GP to phone up cardiology to speed up my outpatient appointment, changing it to urgent.
I still didn't hear anything. Went back to GP who again said she'd chase it up
Monday, I ring cardiology myself. Apparently I'm still just "on the list" and cardiology is very busy. The GP should have faxed an expedite firm through to change it to urgent and she didn't.
So I phone GP and she sends an expedited form in.
Apparently, my pulse ranges from 55-168 (and I wasn't doing anything strenuous), and my QT interval is long.
Thinking of going private just to get some answers.
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That's not good enough - and in my experience (physical health) you need to really chase up the NHS to get things done, or they will just forget about you. It shouldn't be the case but I've heard many people saying that you have to speak up. So do keep chasing them, get your GP to chase them, speak to PALS, lodge a complaint via NHS England.
Private may not be a bad idea - you could pay to get the tests and diagnostics done, then go to the NHS for treatment, as long as they accept a private Doctor's consultation letters.
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3 weeks later I'm still chasing..... But finally getting somewhere.
GP increased my beta blockers and saw me again a week later. My resting pulse was over 100 which she said was "unbelievable" on the dose of beta blockers I'm on.
So she rings the on call cardiologist there and then to ask for advice. The registrar on call said he'd need to speak to consultant and he'd ring her back. He didn't.
GP phoned again the next day (after ringing me to check I hadn't heard anything) and the consultant said he'd see me in the clinic in the next few days.
Got to Friday and I hadn't heard anything. I ring cardiology again, my appointment is down for 25th (tomorrow...2 weeks after the "next few days" I was promised.
GP is fuming.
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Hi - have you heard anything further?
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Hi Ickle
I remember you from all those years ago. Congratulations on how well you've done - you are a true inspiration, thank you.
How are you gettting on with the cardiology appointment? I can't believe how inefficient the NHS can be at times.
Please let us know how you're getting on.
SS xx
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Hey stranger ::P:
I'm also popping in out of the blue.
I'm aware that this thread was started a while ago now, but i'm wondering how you are getting on? xxx