Sunday, September 30, 2012

Beautiful Saturday

There is nothing quite like the first day of a mid-semester break. Ahhhh the days of freedom stretch out before me :)

Today was magical in its simplicity and I was able to forget work completely.

It started with breakfast in bed, then a nice hot shower filled by drying my hair in the sun as I watched the chickens romping around the back garden.

The morning was spent weeding the rose-bed and maybe getting a bit sun burnt. My Hubby and his youngest son started making a rabbit hutch out of a packing crate, so I made everyone tuna noodles for lunch. Again, in the sunshine.

After lunch we did some grocery shopping, I got a repeat of all my diabetic supplies, and we also visited the pet shop as the cat would not be pleased should we run out of cat-noms!

As we drove into the car wash, I realized that I had forgotten to bolus for lunch. Too much sunshine-brain. A small correction bolus later and we were off to collect the cutest rabbit, and perhaps the only one with a "holiday hutch" where he will reside with us whenever the kids do too. Our back garden looks like a petting zoo!

I cooked a delicious strut fry dinner for 6 then my MIL shared not one but 2 desserts with us. Wild berry pie and an apricot/creamed rice/meringue pie. Oh, and I tore the house apart looking for a lost clarinet.

It took me 2.5 hrs of going through boxes to find it, but when I did step-daughter played her sax, hubby played guitar and we all played together (roughly) for the evening. Very much funski :D

Let it be noted that I am exhausted and slightly redder than I should be!

Monday, September 10, 2012

Another date is set

Got a call today from a nurse at the Hamilton clinic - we now have a date for the sperm retrieval booking. It will be January 2013.

Everything has suddenly become a lot more real. It's one thing to give the ok for a procedure on oneself, but quite another entirely when the procedure is for someone you love.

Thursday, September 6, 2012

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.

Saturday, August 18, 2012

Our initial RE appointment - take 2!

So, we have finally started this thing.

For months, years, it has felt like I am running, moving my legs like a cartoon, trying to gain forward momentum but never going anywhere. As if my legs couldn't gain purchase on the ground. As if I was not even touching the ground. Yesterday the ground was raised up and my toes dug into the soil and I have taken off. Forward. At last.

I have written previously about the veil of grey lifting off me. Now it is like the massive, oppressive weight of uncertainty has lifted. I wasn't even conscious of the huge effect this was having on me until it was gone. I am laughing and joking and the tension has melted somewhat.

We travelled to Hamilton for our second "initial consult" at the fertility clinic. Because the first didn't go so well.

This was were we talked with a reproductive endocrinologist about what we will do to try and get pregnant, to try and have a child together.

We need sperm retrieval surgery, IVF and ICSI.

Things will become official shortly when we get the letter saying we formally qualify for public funding. That letter will contain a date which will be our starting "month" for IVF treatment. Prior to that (about 6 months from now) my husband will have sperm retrieval surgery. And then IVF will occur about 18 months from now. It may be sooner if someone else on the program pulls out.

We spoke to both the RE who explained the procedures and the nurse who will be assisting. Neither of them seemed to have much experience with T1 diabetic patients, so I will be hunting down as much research as I can about how IVF drug therapy affects blood sugars. The nurse even told me outright that she had never worked with a T1 diabetic patient before. She told me that I should expect to "have to contact my diabetes management team at least 3 times while undergoing IVF treatment, you know, to monitor my blood sugar levels and adjust insulin, because you have to maintain a good level" Arrrrggg! said my inside voice. My polite, outside voice said something like "actually, I test my blood sugar about 15 times a day and do about 8 injections, all carefully adjusted by myself, too. I also have a pretty good HbA1c of 6.1%" The nurse did look a little flabbergasted at those numbers. I suppose she is used to having patients freak out at the prospect of injecting themselves once per day for a measly 2 weeks, not 8 in a day for 24 years! I wanted her to know what she is dealing with, and now that she has time to learn about T1, I hope she makes the effort. Both RE and nurse said they will work with my GP and my diabetic endocrinologist, which pleases me.

We opted to do an AMH blood test, which measures ovarian reserve. This will allow the RE to select an appropriate drug protocol for me out of the two choices she's whittled it down to. One is a 4 week protocol, and the other is a more popular 8 week protocol. The nurse made noises like she would put me on the shorter one, so my diabetes is less affected. But I said we want the one that will have the best chance at a good outcome. The $100 AMH test will be making the decision for us. Hopefully it is good news. Bad news would mean we have to act quicker, and as you know we can't afford to pay privately for treatment.

So nothing is set in stone, but is just an amazing feeling for me to know that we are on the waiting list now. Nothing tangible has changed, it's all still quite theoretical, but it's a huge change for me and I must say I feel amazingly light and, dare I say it, buoyant.

We got given a pack of phamphlets and books and a DVD. We have consent forms to sign.

I've been put back on 5mg folic acid, and will stay on it every day for up to 18 months+ We have to try and avoid caffeine, tea, coffee, and green tea even. (Being a T1 diabetic means that the only liquids I currently drink are water, milk, juice for treating lows, diet coke but not so much now that I get migraines from the aspartame, and black tea. God, I am going to miss my tea) Maintain ideal BMI. Be good. Take vitamins. Exercise.

There are a thousand details and questions, but the main things I took away from the appointment are that:

  1. Yes, I can work with this woman (RE), the one who destroyed my life 2 years ago. We will not be friends, but we will be able to have a professional relationship.
  2. We are finally getting some progress. We are finally starting. It is amazing to be here after fighting so hard for this.
  3. Surprisingly, we will get Hubby's part of the procedures done much sooner, so it will break the time up and make the new wait easier. The logical corner of my brain knew this, but 
  4. We can start to plan ahead tentatively. Things like accruing up some extra annual leave.
  5. Have found a great motel, and little things like knowing where we will be staying are important to me, the control freak lols :P

Yeah so that was positive, I am happy, it's good news.

We are starting. We have come full circle back to the start.

Wednesday, May 2, 2012

There have been some positive happenings around here. Nothing super-dramatic, rather, it's like a veil of grey has lifted off me and I can now look forward.

What's caused this? Well two things:

1. We have an appointment to see the RE in August. We got this appointment because I asked for it. I asked for it after my diabetes endo put the idea in my head that the clinic probably wouldn't chase after us, since we're not tasty private patients. I sent a bunch of questions and am now slightly clearer on the process. Now awaiting the official appointment letter and blood test forms. We will get onto the public waiting list in September, and from there the wait will be between 13 - 18 months.

2. The Health and Disability Commissioner's office contacted me this week. Although they can't perform miracles, they seem very interested in the way we've been treated, especially the poor breakdown in communication. Awaiting further contact from the HDC.

So yes, I finally feel like I've stopped looking back and can now look forward. I still get really angry when I think of what's happened, and I still feel pretty terrified about what we are fighting for the right to go through (IVF, TESA/PESA, ICSI, pregnancy, birth, pregnant-with-T1, baby, toddler, kindy...), but it's a good terrified. Lol :P

Saturday, April 14, 2012

I watched

I watched my father-in-law die today.

He was 84 and had been in a rest-home for a while. Had a GI tract upset over the past couple of weeks, not helped by large doses of iron tablets. Complained of gut pain but otherwise his normal cheery self. But very weak.

This morning the home rang my husband. It was urgent. An ambulance was called. I received the message and bolted to A&E with tissues and juice and hair still dripping from the shower. That was about 10am.

Met husband, mother-in-law and eldest stepson in the resus-room. My husband's ex-wife's-Mum brought the other 2 kids in.

The doctor explained that they suspected he had ruptured his lower aorta, but after ultrasound checks decided it was more likely to be either a ruptured bowel or clot preventing blood reaching the bowel.

FIL couldn't talk and he was having lots of trouble breathing. The hospice nurse was called and she spoke of "changing focus".

FIL was given more fentanyl and later morphine for the pain.

He passed away at noon, surrounded by love.

We are ok. Very sad, but grieving positively. There have been floods of love and support from everyone touched by this.

Monday, April 2, 2012

Complaints-ahoy!

Hi folks, so sorry it's been so quiet here recently. I've moved all the diabetic stuff to another blog so I can talk to a wider audience, while the IF stuff will stay here. It's just that there has been NOTHING happening!

Until today: I visited the HDC advocate again and got my letters of complaint finalized. Wow. What a lot of paperwork! My HDC advocate has been amazing and so helpful. I wrote a massive letter to the Health and Disability Commissioner himself, and my advocate basically guided me through the process. Which is thorough!

So it's in the post today, and it could be weeks or months before we hear anything back.

There are a couple of different potential outcomes. The Commissioner could:

- choose to take no action.

- direct the complaint to some form of medical board (didn't hear this option clearly)

- send me back to low-level advocacy i.e. If I want to keep fighting then all that would be left is writing individual complaint letters to the different providers (up to 5 letters)

- or my preferred option, where he decides that the whole system needs to be reviewed at a systemic level; the law is changed.

OK now I'm not expecting miracles. I don't think this will actually make our wait shorter or the process fairer, but as the advocate said: all these complaints add up and become part of their statistics; if others have also complained about the unfairness of the infertility treatment funding system in New Zealand then it could add weight to the stats.

So, now we wait. At least I know I'm good at that!