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25/10/2013 at 09:53
I think I posted about this before but I need to get it off my chest as I'm brewing about it and it's making me tetchy.
In late November last year we went for pre conception counselling and risk assessment following a difficult pregnancy and Luke's subsequent health problems, to give us the information about how any new pregnancy would be managed and what the risks were of it happening again and if we decided that we go forward and add to our family. We were then referred to genetics and had an apt in the February where Luke's bloods were taken to test to see if his health problems were part of a wider syndrome.
The initial results came back in late August as an 'array anomaly' and mine and my husband's bloods were taken in September to see if there was any link. we are still waiting for our results, although I was told it wouldn't take as long to test as they would know what to look for, rather than test for everything as they had to with Luke's bloods.
We are now approaching the end of October and before we know it will be November 2013 and we will be at years anniversary from the first appointment. I'm constantly watching for the postman for a letter. I feel in such limbo. Luke is at school full time, I am a sahm with no child at home and wondering if I should go back to work. Our relationship seems to be on hold whilst this is hanging over us, it's like the elephant in the room that we can't discuss. My husband is worried about the results will mean for Luke and if a new diagnosis will have implications for his future health. I feel so alone as we've chosen not tell anyone even close family (not even my mum) in case people feel the need to offer opinions about any aspect of our decisions.
Sorry for off loading but I feel so consumed by it all.
25/10/2013 at 10:14
Oh Carole I hadn't realised you were still waiting on results for this. Silly question but can you not call and chase the results?
25/10/2013 at 11:17
Big hugs. I'm sorry you feel so alone and that this has taken so long, it's not right. I really hope we hear an update soon saying your letter's arrived.
25/10/2013 at 11:37
I would phone and see where they are with the results. And if they haven't come through yet ask them for an update on when that will be.
Did they say that you would be sent the results yourselves? Or does the Consultant need to see them first so that they can explain what they are showing (hopefully nothing at all).
Can see what you mean about being in limbo. As the mother of one child (but who works part time) it is an adjustment when you no longer have your child at home with you all day as I used to with my daughter on Thursdays and Fridays. It takes getting use to, and for you not being able to plan what you do next must make it hard.
Fingers crossed that you get some news soon.
25/10/2013 at 12:09
I have rung for updates but you have to go through the liaison nurse and she only works PT, and although nice she can only say things like I'll look into it for you, or they are working on it-we'll let you know... I don't understand the process so I don't want to bug her constantly.
I'm not expecting the actual results through the post, but a letter with an appointment date to discuss the results with the doctor.
25/10/2013 at 12:38
Just bug her anway! It's your life on hold. I hope you get answers soon Carole x
25/10/2013 at 12:46
No wonder you feel like your life is on hold, I agree with the others, keep on at her. Hope you get the answers soon x
25/10/2013 at 12:47
Oh Carole I'm sorry you still don't have the results. Id call her and ask how much longer it is likely to be before they have the results ready, and then how much longer after that for consultant appointment. You aren't bugging her, it's her job (and if she gave you a more useful answer than "they are working on it" then you wouldn't have to keep phoning).
i know you say no one else knows but you can offload to us lot xx
25/10/2013 at 12:59
I'd be calling and chasing. Is this with the NHS?
Must be really hard for you, I couldn't wait that long x
25/10/2013 at 13:16
Keep calling your liaison nurse, I've learnt with stuff for S that sometimes the only way to get what you need is to keep pushing yourself forward, it shouldn't have to be like that, but it often is.
25/10/2013 at 13:24
Well if she's the liaison nurse its her job to explain the process to you. So ask her, as others have said this is often the only way to get things done.
She should at least be able to tell you that its going to take at least xx weeks or months, so that you know when to expect an appointment.
25/10/2013 at 15:15
thanks everyone. I'll park it now over the weekend and call on Monday and leave a message. Yes it is NHS, but not our local hospital- they send them off to a regional centre. She is good at getting back to you but isn't always at her desk due to being in clinic etc. It's really wearing me down and to be honest I don't even know how I feel about the possibility of TTC even if we are given 'good' news on the genetics because it's dragged on so long and it's taken away any excitement and spontaneity out of the equation, and I still have to be brave about the possibility of another early baby and my health worries. I'm going to be 35 soon and I feel like if we don't make a decision soon then we'll decide that too much time has passed since Luke's birth and we'll have missed the boat.
****moan moan moan****
sorry for adding more misery to the thread. we are off to stay with my sister and her 2 (healthy) children for the weekend, and there is nothing like walling in your own self pity when you think about how that could have been us.
25/10/2013 at 15:33
Carole moan away, DDefinately chase with your contact point, if you need to make a list of specific questions, how long are results likely to take, where in system are they etc etc, while not ideal it is not unheard of these things going missing or appoinments not getting sent, without chasing you won't know and while I understand you not wanting to bug anyone you have good reason to get the fllow up on this as soon as possible.
25/10/2013 at 19:18
They are taking along time. I remember you first posting about this. I would definatly try to call and chase it up, i always think the not knowing and waiting for things is the worst, at least once you know you can deal with it.
Really hope you get good results.
26/10/2013 at 07:39
I remember your original post too and would also pester them to get your results. Xx
26/10/2013 at 09:11
27/10/2013 at 06:56
Carole I know you probably know all this, but before you call the nurse on Monday write a list of questions of exactly what you want answers for, and work through it when she calls you back, writing the answers as she answers them. Be clear that you need those answers now or ASAP. I used to be very polite and almost felt guilty for interrupting someone's day. Now I'm much more - tell me this now please, well how can you find out, etc etc rather than accepting the first vague and totally unhelpful response that I get from local hospital and blood people. I hate having to sound like this on the phone, but otherwise we seemed to faff for weeks before getting anywhere. I hope you get the answers you need very soon x
28/10/2013 at 10:53
worked myself up to ring this morning and got straight through to answerphone. Left a message asking and update on what to expect next in term of appointment/letter/results and how long it should take.
28/10/2013 at 11:02
Are you going to try and ring again today? Just she may ahve been on the line to someone else?
28/10/2013 at 11:22
Oh no, must be so frustrating having to wait so long - hope they get back to you soon and are able to give you some sort of timescale and not just fob you off xx
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