CD 6: First Orgalutran injection

Did you know that they still used glass syringes? No? Neither did I, but that is how the Orgalutran is packaged:

Orgalutran is such a mouthful of a word. I prefer to call them my Orangutan injections, and Hubby and I startled the step-kids by hooting like monkeys last night when we were talking about doing the first shot. haha

Source Where you get all good orangutans.

This first orgalutran/orangutan certainly seemed to affect my blood sugar. It is a ganirelix injection, and here is what happened after breakfast (1 slice of peanut butter toast + tea = 16g carbs total)

Blood sugar reaction after breakfast and some tasty ganirelix / orgalutran

My headache is still here. Yes. I am now grumpy and tired of having this headache. It makes me useless. I went to buy a birthday present in town today, by myself, and it was a bad idea. The Saturday crowds, the noise, and soon I was scurrying back to my car to drink water and test my blood sugar and think calm, calm, calm non-headachy thoughts. And I have at least this many more of these orangutans to go!

I found this to be the most unusual injection I have ever given myself. And I like to think I am a bit of a connoisseur. I have been doing multiple daily injections since I was 5, so I've seen the sharp end of a few needles. This syringe, apart from being glass (first glass syringe I've ever used!) had a strange cap with rubber inside which I've never seen before. The needle itself was the gauge I like to class as "drainpipe". No mucking around here with dainty little teflon coated needles. No. This one was so thick, although it honestly truly didn't hurt, I had to push it into the skin! It went pop and then it was in. No pain, but then I had to draw back on the plunger to check I wasn't injecting into a blood vessel, then inject.

The other strange thing was how both the nurse and the instructions didn't want me to remove the air-bubble from the syringe. I really struggled with this one, and was about to hold the syringe upright and push the bubble out, but then remembered the nurse telling me "no don't worry, just inject the whole thing!" I came to a compromise with myself and injected so that the needle pointed slightly downwards and the bubble rose to the plunger-end. I injected so that about half of the bubble went in. There was a little hiss noise as some of the air escaped back out from my skin.

The headache continued through lunch with the step-kinds and MIL, and just got worse. I ended up giving in and having a nap before dinner, while the kind and wonderful Hubby cooked us all a tasty dinner of lamb chops and veges with cheese sauce. He has been absolutely marvellous, and keeps checking how I'm feeling. The other day he told me he'd like "to wrap me up in a blanket and keep me safe through it" Awww :D

When I was woken for dinner, the headache was so bad I thought I would have to take some ibuprofen. I can't take paracetamol (well, I can, but I don't want to) because it will interfere with the Dexcom and it just plain doesn't work. at. all. And there is such conflicting advice on the interwebs about whether it's safe or not. Seems it's a bit of a no-no when using gonal-f, and the previous RE said no ibuprofen. But this new doc and nurse didn't mention it as a problem. I've already had 4 x 200mg capsules since CD2 because the headache turned into a migraine and there ain't no way I can deal with that pain on my own.

7pm, dinnertime, and I had a new strategy. I would do the bolus dose of insulin earlier, and give a generous dose to stop any marked spike rise in blood sugar. Also, I had some 1/2 juice and water and just drank sips of it over the hour post meal to keep the blood sugar level. This has worked very well so far, and being stable, my headache has finally alleviated:

Above, you can see a little rise from the meal after 7pm / 1900 and then the insulin on board IOB starts to kick in and bring it down gently again. I have been monitoring it now for 2 hours and it's extremely flat! Win!

Got another letter from the fertility clinic, this one from our nurse. It confirms out treatment plan with the dates for specific injections and scans, but it also suggests that "expected week of egg retrieval: week of Sat 19 Oct 2013". I am wondering what will happen after our appointment on Tuesday.

We have a birthday party to attend tomorrow night, and on Monday I am supposed to be teaching a class. If I have this headache I will stay home and nap; it's just not worth tiring myself out, and I get so very tired at the moment.

Good news! We have a "month"!!!

Today I pulled a sickie and spent the morning curled up in bed watching movies. My Mum popped round at afternoon tea to see how I was, and brought the post in from the front gate.

Two envelopes.

From the fertility clinic in Hamilton. Or "Hamildog" as it has become known in our house.

Envelope One:

The results of my AMH test = 9.35 pmol/L. The letter goes on to say that this is "as expected for your age". I am looking at the graph and it would seem that I'm sitting just about on the cusp between the yellow and the green:

So that's OK I guess. At least it's not bad news. I'm sitting on the 25th centile (I'm nearly 30. Gawd! Gasp!)

Envelope Two:

It's THE LETTER. The one that officially states we now qualify for public funding. Our month allocated for starting treatment (IVF) is October 2013. That's little over a year away, and a good bit shorter than the 18 month wait I was expecting. Woohoo!!!   :)

To be honest, one of the first things I thought of was "oh, it's right smack in the middle of a semester. How will I wrangle the time off?" But then I quickly changed to "Good heavens! Why should something trivial like time off work jeopardize this?" So now we have settled on a bit of shock, slight happiness, and wonder at what the hell exactly we have gotten ourselves into. Lolz.

Visits with my new GP and diabetes nurse educator

I am so glad I changed GPs. My new GP was quite happy to spend an hour chatting about diabetes and IVF, and he was very interested in my experiences as an adult diabetic with Type 1.

It's fantastic to have stable, positive GP care again. I've missed that. My last GP went nutso. And then his receptionist went nutso too. Yeah so after more than 6 months of inadequate care from my old doc, I finally have a primary care doctor who I feel I can trust. (Oh, and the nurse-receptionist gave me a flu shot, which has hurt like billy-oh for 3 days now :( wah)

Yep, so that's a load off! :)

I also went along for a very quick appointment to my diabetes nurse educator. Even with a bunch of builders and electricians in the office (some hospital renovation disaster) she was still able to spot the cause of a trend that I haven't been able to figure out. I keep waking up either on target or a bit low, then going high coming into lunch, often having a low at around the 4pm mark, and then just getting really crazy wild variable results at dinner.

She explained that if I increase my insulin to carb ratio for breakfast, from 1:14 to 1:12, this would give me a slightly larger breakfast dose of Humalog, which would help prevent the highs at lunchtime. Having a more normal lunchtime test would mean I don't over-treat the lunchtime dose, which will in-turn help prevent dose stacking and 4pm lows. No 4pm lows will mean a more stable dinner test result. Well, that's the plan. I will give it a crack :)

Oh yeah, I've also finally gotten around to it, and booked an appointment with my dentist. It's only been like, what, 3 years!! :P

As you have probably guessed, I have a sore tooth. Not too bad, but enough to make me pick up the phone and call. It will probably hurt my bank balance more than it hurts my jaw.

My GP, just to hop back a few topics, was interested in our struggles to get funding for IVF, and interestingly enough he got to talking about doctors he had trained with. Turns out the chief of Fertility Associates was in his class at medical school. So he's suggested I write a letter to him directly.

Yes, you have heard me say that "I will write letters" before. And you know that it takes me bloody ages to get around to actually doing it. That's because life makes me tired, teaching makes me tired, diabetes makes me tired, thinking about IF makes me tired, and getting the strength to sit and write a coherent and convincing letter, which I know will in all probability only result in a polite form letter or brush-off, is hard. It's hard enough just to think about it, let alone turn the events of the last year and a half over in my head without breaking down into a sobbing mess.

But I have to make time to write the following letters:

• Complaint letter to CEO of Fertility Associates
• Letter requesting review of our case, with special consideration of our unusual case, to head of the local district health board
• Perhaps a letter directly to the Minister of Health, as he didn't truly "get it" when my local MP contacted him. In fact, he completely missed the point.

Yep, I will get there eventually. Surely, sooner or later, someone in a position powerful enough to fix this mess will see that logic has just escaped the building when they decided to discount the medical facts.

Work has been a bit manic, with all my students preparing to submit their first design projects this week. Oh the craziness and tears and wailing and "I can't do this" (them, not me) and "I've lost my design mojo"! Ha! It's great! :P It's the time when my students finally figure out that what I've been teaching them is actually useful, and if they are one of the students who pay attention and put in the hard slog, then presentation day is a blissful relief. Of course, it's always the 20% of students who cry and wail and stamp their little feet which make it all so exciting. Getting them across the line is all part of the challenge. I get to be a design tutor, a counsellor, a life coach, and a technical help line all in one. And I love it. I love figuring out what makes them act the way they do, and how I can best use that knowledge to help them learn. But by jove is it tiring. I tell all my students I am on call 24/7 (whether I answer then is another matter :P  ) but most of them are taking me up on the offer, and actually coming out of their teenage shells and COMMUNICATING with me, which is fantastic! :)

Easter is coming up, and I got in early and bought a bunch of yummy chocolate eggs for the step-kids. Goddamn! 3 teenage kids can eat a lot! But they haven't found where I've stashed them yet. I don't think...better go check!

p.s. sorry I've not posted as often as I normally do - we've had some severe interweb connectivity issues :(

Letters received, a decision made

This week a letter arrived back from the Member of Parliament (MP):

Monday, 21 March 2011


Dear [Kaitake] and [Hubby]


Thank you for the copy of correspondence between yourself and [One of the authors of the report: Access to Infertility Services: development of priority criteria: a consultation document. Simply referred to as "Author" from now on]. It was interesting to read and after the meeting in my office, it became clear that the single issue stopping funding at this point is when the three year time-frame officially commences for a couple who have one partner sterilised.


[The Author's] comments around the duration of infertility and balance of fairness they seek to manage are important considerations.


Following up from your recent visit and the information you have previously provided, I have written to the Minister of Health and received a reply last week from the Hon Tony Ryall, which I enclose to you.


The Minister's third paragraph mentions that a request for a second opinion on the review of your CPAC score can be made to the [local health board]. [The Author's] opinion is that the CPAC score was correct according to the criteria; however seeking a further review and if possible, a fresh assessment which takes into consideration [Kaitake's] diabetic condition, may be worthy of further consideration.


I know that IVF treatment is expensive. Failing public funding, consideration around personal funding is something you could consider if the waiting period is too harrowing for you. These are deeply personal and highly important issues and I wish you all the very best in approaching the [local health board] for a review.


If we can be of any further assistance please don't hesitate to contact my office.


Kind regards,
[MP]

and here is the letter from the Minister of Health that the was mentioned:

14 Mar 2011


Dear [MP],


Thank you for your email of 25 February 2011 on behalf of your constituent what has asked if her application for publicly funded IVF treatment can be reviewed.


Your constituent will have been assessed by a clinician using the clinical priority access criteria (CPAC) tool. CPAC is a decision-making tool to assess a candidate's suitability for publicly funded fertility treatment and takes into account a variety of factors such as the candidate's age and Follicule Stimulating Hormone level. Decision on who qualifies for publicly funded IVF treatment are made by clinicians.


Ministry of Health officials advise me that a second opinion to review your constituents's CPAC score can be requested from [the local health board]. Your constituent can contact the Chief Executive of [the local health board] by writing to:


[contact details enclosed]


Your sincerely


Hon Tony Ryall
Minister of Health

There are just so many things wrong with these letters it's unbelievable. The MP suggest we pay for fertility treatment ourselves (well, duh! of course we would if we could! we're not all BMW owners). I don't particularly feel like divulging all our financial concerns to him, I mean, I think I've been pretty honest so far. Told him about our fertility problems for godsake.

Then there is the Minister of Health politely passing-the-buck back to the local health board. Who don't offer fertility services. Oh, yeah, and I consider it pretty insulting the way he has just parroted off some crap about FSH... there is nothing wrong with my FSH. Get with the picture and stop telling me useless pieces of information. It's so reassuring to know that when the clinic gets it wrong, you can't actually get results from the government, because "clinicians make the decisions". And who monitors them, eh??

And I especially like the way that no one has taken notice of the fact that there is actually more than one issue for us here:

1. in our case, a 3 year wait is a penalty. We are being penalised for my husband having done the socially upstanding thing of having a vasectomy in his previous relationship. There is no medical reason for a 3 year wait (with unexplained infertility, waiting 3 years = 80% chance that the couple will have conceived naturally). In fact, for us it increases the chance of my having a child with Down's syndrome, or having complications, or dying in childbirth. (we will be eligible for public funding in September 2012, I will have clicked over 30yrs. We will still have an 18 month waiting list after that. The earliest I could become a Mum is 2014 or 2015, it may even be 2016. I better bloody have my flying car by then, cos that's the future.)
2. the incredibly bad and uncaring way in which the Hamilton FA clinic has treated us, like we are second rate citizens
3. the way the CPAC form is engineered against us, specifically designed to deny us the right to have a family. It is discriminatory. The points are not deducted for having a sterilisation, or something logical like that, which I could understand. No, the 30 (!) points we lost were because of a catch-22 situation where the have to engineer a "when did your infertility begin?" date, so they base it on the first time you saw a doctor for infertility. This totally discounts 7 years of my life where I've wished for a child.
4. the CPAC form does not take the male-partner's age into account, only the female's. This is unfair and discriminatory. In our case it especially important as my husband and I have a significant age difference.
5. How the Government did not accept the recommendations of the advisory panel, to set the CPAC threshold at 55 (which would mean we qualify) and instead set it at 65. Money. Always money. And since infertility in basically an invisible disease, there is no massive groundswell of support, say like for breast cancer, or diabetes.
6. the way that the GP and then the OB/GYN both took our money and did loads of invasive tests, only to refer us to the fertility clinic at the very last minute, wasting valuable time. NZ patients are actually allowed to self-refer to fertility clinics. No one told us.
7. The fertility clinic for insisting that I have an unnecessary operation, and the stupid OB/GYN for taking plenty of public health money to perform the operation.
8. that there is no regulating body where I can take a complaint regarding the paperwork side of the fertility industry.
9. the sheer injustice of the situation, how bloody unfair and illogical it is, how it's put my life on hold, how it invades my every waking moment :(

So Hubby and I have made a decision. We will make one last attempt with the letter-writing and shit. And then leave it. Because, honestly, no-one cares. I've been crying every night this week and it doesn't make anything better. I can write emails and letters to everyone until I'm blue in the face. But nothing is working. No one will help. Or no one can help. It's useless. But I will try one last time.

Please excuse my foul language. I am in a bad way.