getting grumpy now about being fobbed off:::: update!!!!

[k8_005]

as some of you know i went to speak to a cosultant obstetrician in november 8th, and she offered to send us for genetic testing to see if that was causing the anaceaphaly, we said yes she said would do up a refferral. since then nothing. we have been offered to take part possibly in a clinical trial also but i really want to know the genetic results before we do, i dont want to miss the clinical trial into it but dont want to go ahead until i have all the facts. so annoying. rant over i suppose not even sure this is the right place. just want a few answers now or at least to start ruling out why it happened twice. grrrr

 

[Nurse 26]

Hey hun, nice to see you back on forum, hope you are doing ok

Is there anyway you could explain the situation with wanting to start the trial with your consultant?, or maybe get the tests done private to speed things up?

Hope you get the tests done soon. xx

 

[k8_005]

hi nurse! i do drop by time to time but mainly i lurk, i try and think about the positives and not dwell on all thats happened so dont often post, but i didnt think about testing privately? im not sure if you can? the thing is i dont really understand what they are testing for even, she did say both of us would get tested and i think its to see if its something genetic preventing me absorbing the folic acid?! or something in our genes preventing baby from absorbing it? i have time to go yet on the trial as dont have to tell them till august at latest but can start as soon the tablets and then 3 months after can start ttc as soon as tell them and dont like this in limbo. its difficult waiting game really. so hard n frustrating, i feel sometimes its not being taken seriously and they all just say its unlucky, but i would like to know if there IS a reason as if something genetic, either they can do something or cant and if cant wont put myself through it all again and wont do the trial, if its not genetic then i want to try anything i can. just needed to rant and frustrate outloud really.

 

[TORino]

Nice to see you back here

Sorry you are getting fobbed off though

Keep on at them xxx

 

[Nurse 26]

I'm sure that you would be able to get them done private, easiest way to find out would be to contact a local clinic and get a price, i know for the chromosome tests its just one blood test each (as thats what we had) they grow the sample over a 6 week period and look at the pairs of chromosomes.

At least you have got a while to get them done before august, our results took 8 weeks to return on NHS so worth bearing that in mind too. NHS waiting lists are so frustrating

 

[netty]

sorry tphear your being fobbed off hun!! thats awful ( nice to see you btw ) Nurse is right maybe look into private care?

 

[dyscochick]

Nice to see you back, sorry you are feeling fobbed off, that rubbish. can you get more details about what they are testing for to try and go private like nurse suggested? xxx

 

[k8_005]

thanks ladies! i finally got through to someone who said they would get back to me.... and they did.... apparently the referral has gone through (yay) and i should get a letter confirming the dates of test in the next 3 weeks. (goodness knows why it should take so long ) but at least its all getting sorted...however im not holding my breath yet as they told me 3weeks at the appointment (nov 8th) so will see what happens next. thank you all for your support. sometimes it just gets me down!!! you lot are all so strong having been through so much and it makes me ashamed to be down, when i think I'v "only" lost 2 and read some of you who've lost multiple babies or at a much later stage in your pregs, anyhows feeling a bit more positive today thanks and hugs to you all you are all incredible! xx