Patience, thy name is not Molly

It’s been half a week since we got the high risk result from the first trimester scan. We got the result on Thursday and our doctor said to email her if we hadn’t heard from the hospital by midday Monday. I stayed glued to my mobile (even during the very wonderful and excellently distracting RailsGirlsĀ event on Saturday) but sure enough, no call. I emailed my doctor as promised, but then got annoyed with the whole thing and phoned KEMH myself.

To my shock/disgust/horror I was informed that I had been booked in to an appointment and that they had SENT ME A LETTER to notify me. Seriously, WTF! They know women going through this are majorly anxious. How hard is it to make a phonecall, or even send an email?! One lady I spoke to was kind enough to point out that everyone going through it felt anxiety. Awesome empathy there . The other thing that threw me very badly was that the amnio wasn’t booked for this week, or the next even. It was booked for the 5th of December. The day of the Library Quiz. The one I’m organising and MCing. Yeah.

No, they couldn’t change the date. They only had so many people who can do the procedure and they had to triage in terms of urgency. Plus, they can’t do it until 16 weeks because it’s too risky before then (despite their own website saying that it’s done from 15 weeks). They could make it earlier in the day though, would that help? Well, not much really. Considering you’re meant to go home and rest after an amniocentesis, not run a quiz night.

Once again, I spent most of the rest of the day in deep shock, retreating into my headphones and doing some necessary but boring and mindless tasks. I was struck with the fact that I’m due to fly to Sydney 10 days after the amnio appointment. The full results take longer than that, not to mention that if a termination is decided on it needs to happen preferably by 18 weeks. Oh god.

Back at home in the evening, Craig and I started researching. I mostly hit the forums, I had heard a few mentions of a new blood test and I wanted to read more. The US forums were helpful for this one. There were a few new competing blood tests (with the makers predictably suing each other) that could be done using massively parallel PCR techniques (which sound pretty cool actually). They had just started being offered last year and were pricey but not overly so in the US. They generally tested for the main 3 trisomies (21, 18 and 13). So were they available in Australia? The answer appeared to be yes, but at a much greater price and the uptake was a lot lower.

I also got a few calls from my Midwife once I told her about the high risk result. She spoke to a colleague who advised that the Women’s Imaging service was a very good private practice for such thing. She suggested that I talk to them about alternative options or even a different date for an amnio. I phoned them this morning and it’s a good thing that I did. They gave me a whole bunch of information including options and costs. I was particularly interested in the blood testing options. They informed me that they use either Verifi or iGene which are pretty much the same in terms of cost, timing, technique etc except one is sent to the US and the other is sent to China. Craig and I decided that in spite of the high cost, this was a good option if it would give us an answer sooner and hopefully avoid the necessity for an amnio.

I decided to look into the Verifi option a bit more and found a brochure about testing in Australia. The cost was $900 and would give results in ~10 working days. However, in Perth, they only collect blood on Monday and Tuesday between 9am and 1pm. It was at this point a little after 10am on a Tuesday. I phoned them up to ask if I needed a referral from an obstetrician (as specified on their brochure) and found out that a GP referral was sufficient as long as they used the special form.

This put me in motion like a spring. I grabbed up my bag and headed out the door, phoning my GP’s office to ask if they could get me in to see her pretty much immediately. Fortunately they are champions and the receptionist said they would sort it out. At the doctors office I only had to wait briefly before Tracey saw me. She hadn’t had time to look up the Verifi test, but took my word that it was what I wanted and filled in the paperwork. She also bulk billed me for the appointment. She is a total sweetie.

On my way out the door of the doctors, I phoned the path lab to ask about bookings. The receptionist said that they had one available next Monday. “How about today?” I replied. She was a bit floored but seemed to cope with the idea that I was on my way (emphasising of course that I would have to pay at the time). I hopped on a red cat bus and made my way to West Perth. 10 minutes later I was in the path lab. The receptionist got me to pay (ouch) and then I had about a 15 minute wait before getting my blood drawn. Less than an hour and a half after deciding to go ahead with it, my blood was in a (special proprietary) tube destined for the US.

Now I feel a lot better having done something about it. It’s still a waiting game though and I’m anxious about the results coming back before the amnio appointment. The vampire at the path lab said they take 10-14 working days. My amnio appointment is on day 13 of that so I’ll be crossing everything. If we get a negative (i.e. normal) result, we will probably cancel the amnio.

It’s been a very exciting day and I’m once again grateful to have such a supportive manager. The whole thing including phone calls and racing around cost me under 2 hours of flex in the end. Totally worth it to get the blood taken and sent off. Now I hope I can let my mind rest a bit and focus on all the other things I need to think about. Oh, and wait for that letter from KEMH.