My hair falls out, great handfuls tangling themselves around my fingers as I run a brush through it. Stress I assume and hormones. Something, I’m not sure anymore. It’s no great loss.
My son hands me a handful of half chewed pasta. Wrapped around his fingers are more strands of my hair. All the vaccuming in the world never picks it all up.
I have a lot of hair.
Or should that read I had a lot of hair.
***
The hospital rings me while I am in the car. I strain to hear her voice over the top of the traffic sounds and my children, whining, contained in the backseat.
‘We’ve got the children’s genetic tests back.’
‘Okay, have you got the results?’
‘I’m sorry. I can’t tell you over the phone, you’ll need to come in and see us.’
‘Oh. Why is that? It was only meant to be looking for the gene that causes coeliacs, surely it’s just a yes or no answer.’
‘The test results are quite involved and complicated. You need to discuss them with Head of Paeds.’
‘Oh.’
I feel sick and cold all at once. It was only meant to be a genetic screen for Coeliacs. It’s not involved or complicated. Yes. Or. No.
‘You have an appointment in June don’t you?’
‘Yes, that’s right.’
‘Well, ideally we’d like to see you sooner.’
‘Yes, that would be good.’
Sooner is never good news.
‘But, as you can imagine, we’re heavily booked. I’ll see what I can do for you.’
June is a life time away. I’d like to see them tomorrow, but that’s not possible. What else have they turned up, that she can’t give me the results over the phone, when I was told that I could ring to find out whether the children have a coeliacs gene or not.
‘Are you sure you can’t tell me if they screened positive for the Coeliacs gene? That’s all they were testing for.’
‘I’m very sorry. Like I said, the test results are rather involved and you need to see Dr. B about them.’
Dr B. The higher up of higher ups. The Paed we never see, whom our regular paed leaves the room to consult with occasionally. The one in charge of all the major decisions. Him.
‘Okay then.’
‘Okay, we’ll try and get you an appointment sooner.’
Inside I panic.
Outside, I rely all this information to my partner, who has listened to one side of the conversation while he drives.
We’re worried now, they were only meant to be checking for Coeliacs, nothing else. Nothing that would warrant an appointment with the higher ups.
***
I sit on this information for over a week without thinking about it, pushed down to the bottom of my mind, until it bursts free this morning, leaving me stressed and strung out.
My mind spins in circles.
They were only meant to be testing for coeliacs. Nothing else. EDS wouldn’t show on a genetic screen, not enough information has been compiled for doctors to know which gene is broken in EDS.
***
I turn the music up loud and sing, badly.
Anything to make my mind switch off.
Because I’m worried. Really worried.
And to be honest, we’re already dealing with enough fucked up genes, I’m not sure I can take much more.
Oh, God, V! I’m so sorry to hear that! I’d be in knots, too.
You’ll be in my thoughts, and I hope it all turns out alright.
Jesus. Can’t they at least tell you what labs they run???
At the pediatric hospital I work at, the angrier and louder the parent, the quicker they are seen. Dunno if that’s how it is at your peds hospital… but…
Oh geez! I’d be strung-out too, V. Here’s hoping that the fucked up genes stay the hell away from your kiddies. Hugs.
I hope they don’t keep you waiting too long. It’s terrible to be left in suspense.
hey!
just want to reassure you a bit (if possible)!
my mum had some genetic tests done almost a year ago now. it was for a different gene, anyway it ended up being negative.
but like you the department rang, told her they had the results and that she would have to see the specialist and that the results could NOT be given over the phone, they even arranged an earlier appt for her. we thought for sure she had it.
instead she went to the appt with the specialist, they said it was negative but insisted she stay and talk to the counsellor to discuss her feelings about this!
genetic counseling and testing is such a new field and the drs and counselors don’t really know what the best way to handle this kind of information is, hence all the ‘counseling’.
try not to worry too much over it….cos we did and look what happened in the end!
did you get an earlier appt?
Yikes, I hate scary medical stuff. Hope all goes well and that you get in soon so you can get some answers. And I hope Ana is right!
Umm, maybe they’ve discovered something fantastically breakthrough in nature and wish to share the good news…..? Hope everything is okay.
*hugs* sweety, I’d be freaking out too. I also know the feeling with the hair loss. It’s yet another thing to freak out about on your already overflowing plate.
Wish I could just come give you a big cuddle! xx
when I start to have my hair fall out I go back about 3 months to see what was going on. it always turns out that there was a stressful something or other going on at that time. it took me a long time to figure that one out. the first few times it happened i thought for sure i was going bald.
it isn’t fair that they are allowed to make you wait. i understand that they are busy but that anticipation, the dread, the worry, the what ifs… just don’t go away until there are answers. my thoughts are with you.
fingers crossed for you and yours, love.
Mine too.
Oh love, I hate Drs, Hospitals and most especially their receptionists who can only give the recorded message.
I’m pretty sure Ana’s right. Yeah, of course she is.
(((hugs)))
Ugh. I loathe the system. Hugs.
Oh lordy lord my dear. I’d be going NUTS. Have you gotten an appointment yet? Thinking of you…
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