Hand hold? Amjaline challenge/Brugada ,shitting myself !!

[WatcherOfTheNight]

Myself & DH are due to go in tomorrow for the Amjaline test & my anxiety is through the roof .
I'm so worried about something happening to me during the test & that my Ds will lose his mum as well as his sister .

I'm also worried that it will show that I carry this Brugada gene ,meaning I passed on the defect that killed my beautiful DD.

I want to cancel(again) ,I don't think I can go through with it .
Talk some some sense into me please !!

Just in my thoughts, Watcher and hoping that you're doing OK Heavy lifting gear at the ready in case more is needed.

Hi everyone,just letting you know I'm ok & to say thank you for thinking of me .
We didn't get home until late afternoon,which was hectic with sorting out Ds,homework and all the animals .

We are both negative,which of course is very good news!
I did well & held it together yesterday until everyone was in bed .
But I am upset & finding it hard that we are still in limbo & still don't know what killed our beautiful DD.

DH I think, has accepted that we won't find out ,he says she is gone & no matter what it was nothing will change that .
I know it won't change anything but I need answers ,I need to know .

We now have to go down the genetics route,which we were told yesterday can take a long time,that may not give answers either .

It truly is shit !!!

Yes it is shit.

You did great yesterday and the negative for both of you is good news indeed.

Much love from me.

Thanks Flibberty,the specialist cardiac nurse who we've seen since the beginning was there which really helped as she is aware of how daunting I've found the screening process ,the day unit was quiet which also helped .
I honestly can't fault them at all they are all so lovely .

They & you lovely lot keeping me grounded when I was freaking out made a big difference,before I posted I was close to cancelling again .
These acts of kindness really mean so much when you don't feel yourself & I so appreciate it

Does anyone know how we go about making sure DDs name is off mail & cold call lists ?
Her grandparents received a letter in her name yesterday,obviously they are very upset .
I don't understand how this keeps happening with calls & mail ,it's been over a year & I informed everyone as soon as we had the interim certificate.

I signed us & both sets of GPs up with TPS early last year & the calls at least stopped for a while but they have started up again .

Hello again, Watcher. Thanks for updating - I've been thinking of you. I'm glad to hear it went as well as possible, not as bad as feared, and that there was some good at least.

I absolutely understand about your need for answers and also about your DH's different approach. In our similar sudden loss much too young, we did eventually get a cause of death, but then from that came the feelings around the fact that it might have been a preventable death had we known and had a doctor on a previous occasion handled things differently. In our other situation, of a severe and life-limiting yet unexplained disability, we yearn for answers yet are told answers would not alter treatment, approach or prognosis - yet still we year for the reasons why and the what exactly. I'm not sure whether the knowing or the not knowing is better, but I can undertand both approaches.

Sorry, that posted too soon. Good in paragraph one should be good news, and year in paragraph 2 should be yearn, and then understand.