5w3d Panadol vs. Dex

I woke yesterday morning to the mother of all headaches. I knew instantly that it was going to be a long grueling day: my super-human sense of smell sniffed something like paint as I was waking up, and the headache decided to stay with me from 7am to 11pm.

Of course, I can't take neurofen at the moment, bit I didn't want to take panadol either as that messes up the Dexcom readings.

We had the step kids and they wanted to go to a gala day which was a beautiful, noisy, rowdy, fun outing except my head was killing me and I kept going really low. Hubby bought me a lolly kebab on a stick!

I slept fitfully most of Sunday afternoon, waking a couple of times for high alarms. At one point I woke up enough to check the tubing and found a massive bubble going right into the infusion site, so I unplugged things and primed. It dripped a few drops and then seemed to stop. With the bedroom curtains drawn, and bleary eyes, I couldn't see that I was actually shooting a thin spout of insulin across the bead spread! Oops!

By 11pm, and after every natural remedy I could think of, my head was pounding so I gave up and took 4 panadol - why that many? Because paracetamol normally doesn't work for me.

True to form, the Dex duly started to rise higher and higher. That's because it measures glucose molecules, but acetaminophen molecules look very similar to the Dex sensor. This causes false high readings. Very high. My meter said I was about 10mmol, while the Dex thought I was about 19.3! Let's just say I learnt how to disable the high-alarm feature pretty quickly. With the Dex and the Vibe pump both going mad at me every couple of minutes there was no way I would get sleep with them on.

Felt much better this morning, taught Monday class - always a drain that class - and tried to get away early but failed.

I did however get home in time to start calling midwives and OBs. Turns out the OB I want is private only, and costs nearly $4000!!! Although we could just afford that, it would be stupid as there are funded OB options available. I'll just have to make sure I don't get the one we had at the start of this IVF journey as he was strange and gave bad advice.

I did manage to book in my 8w scan with the private OB, as she has ultrasound equipment. I then had to email the fertility clinic so they can send a referral letter through to her offices, and that way it will be covered under maternity funding so free to us - yay! I just hope I don't like her too much :/ I'm checking with my health insurance to see if it covers obstetrics, but don't hold out much hope. I'm just going to have to accept the fact that I won't get the OB of my choice. Which sux big time since I've heard great things about her. Sigh.

The midwife was a more positive call. We left a message and she rang back after dinner. She is the first one I looked at, mainly because she stated in her online profile that she works closely with specialists. She took time with us on the phone and we will meet her early next week.

3rd HCG test is tomorrow. I don't really have any nerves about this one, as I've had so many symptoms. And no bleeding with cramping, or bleeding at all, which I take as a good sign.

Oh, did I mention that the gala day was held at the primary school where me, Hubby, his Dad, my Sister, my 3 step-kids all went? Yeah, it has zoning and we're not in the zone, but Hubby knows the principal and asked him if it's possible to put our name on the list anyway and we can! Talk about forward thinking! So exciting! I really hope this pregnancy sticks and goes smoothly, I am getting a bit fond of our little embryo!

NIAW: Bust an Infertility Myth - Vasectomy is infertility too!

What is NIAW?

I may be in New Zealand, but I am still excited to be involved in America's National Infertility Awareness Week's Bust an Infertility Myth challenge. It's a fantastic campaign to raise awareness for infertility and break apart stereotypes people may have of what infertility is all about. The organisation Resolve.org is the driving force behind the action, and I only wish they had a New Zealand branch!

What is the Infertility Myth that I will bust?

I have chosen to talk about the myths that surround my life, even though they rarely get mentioned out loud.

Myth: Having a sterilisation (i.e. vasectomy) is not true infertility, it's just contraception! What did you expect?

Busted: Actually, that's not true at all. Not. Even. Close.

Let's look at what infertility actually is. The inability to conceive a child after one year of unprotected intercourse (as defined by my doctors and FertilityNZ). And what is a vasectomy? A surgical procedure where the vas (tubes that carry sperm into the seminal fluid) are cut, so that conception will not occur. On the surface, yes it does appear that a vasectomy is indeed a form on contraception. A very effective and (normally) permanent one.

So why am I now classed as an infertile woman?

My husband has a vasectomy. He got it in his previous marriage, and from what he's told me, he did it because with 3 kids already he felt it was the socially responsible thing to do. There may also have been some pressure from the ex-wife too.

We now want kids. I have wanted children for a while. This year we will click over 8 years of infertility. During that time, I have been in as much anguish as any other infertile woman. We may have different underlying causes to our infertility from the majority of other couples, but there is still sweet f*ck all that we can do about it. Without major, expensive medical intervention, of course.

I still desperately want to be pregnant, to give birth, to buy baby clothes for my child and not someone else's, to raise a family with my husband (not just step-kids who very clearly belong to their Mum), and to grow old knowing I will become a grand-mother and have my family line continue.

I remember the shock and hurt I felt when my ob/gyn told me nonchalantly that I was infertile. No I wasn't! I was at his office to discuss getting a vasectomy-reversal for my husband (and more specifically, what I would need to do to get my body ready, as a T1 Diabetic woman) - not to be diagnosed with a new condition!! The shock and disbelief were real. The pain, tears, and anguish are real.

In many blogs I read about IF, women talk about how they hope that their next cycle will be the one, or that next year will be the one, or that this new treatment will work. I feel completely left out, because we are not able to pursue treatment actively at the moment. A vasectomy is 100% effective so it's no use waiting for the next cycle. No amount of (very fun) trying will make a bit of difference.

I see it in people's faces when I reveal that we now want a family. In my parent's surprise, in my friend's careful questions. They are wondering what the hell is wrong with me, wanting to have kids with a (wonderful, loving, handsome, caring, generous, sensitive) man who has a vasectomy! I knew what I was getting into.....didn't I?

Answer: no. I knew that my husband-to-be had a vasectomy, and I vaguely knew that you could get them reversed. But at the beginning of our romance that's about all I knew. I also didn't know that we would fall madly in love and pledge to spend the rest of our lives together in front of our families on Valentine's Day in a heavenly Chinese garden. I didn't know I wanted kids back then when we started dating. And it's not generally something you discuss until the relationship is well and truly "serious".

But once we began investigating the idea of a vasectomy reversal, it soon became clear that it would a) cost a lot, and b) have a very low chance of success. The doctors recommended the big guns for us. What else but infertility would require IVF, ICSI, and sperm retrieval to make a baby?

I was devastated when I found out that I would need to have all the IVF drugs. I did know that IVF was incredibly expensive, and so it was only because we were told that we would "surely" qualify for public funding for fertility treatment that together we went through the infertility workup. Nearly a year passed, with blood tests, ultrasounds, an operation, and consultations, all for naught when we were cruelly denied access to public funding at the last minute. In fact, during the consultation where we were expecting to be given a schedule appointments to kick-start IVF.

I have spent every spare minute over the past year and a half thinking, blogging, emailing, writing, meeting people, and just generally trying to get that heart-crushing decision changed. So far no luck.

But along the way I really hope that I've changed some people's minds about what constitutes infertility. And a sterilisation from a previous relationship certainly counts as infertility. It takes away the couple's right to choose and determine their own life. It brings worry and anguish into the thoughts of the couple, and in our case, it puts the ability to access treatment in the hands of doctors and government officials. How could anyone not be severely affected by this? How could anyone think this is fair? (As the folks who determined the rules do). It has completely changed my life-view. It has made me an advocate for my health and my future.

Believe me, no matter what the cause of your infertility, it will still hurt.

An unwanted sterilisation causes the inability to conceive. This is infertility. It is not able to be changed by the current couple as there is no way to go back in time and alter the decisions made in a previous relationship.

It is my goal to help raise awareness in the New Zealand community about this issue, and I would ultimately love to get the laws around access to public funding for fertility treatment altered so they are no longer discriminatory against couples who have experienced the trauma and suffering of infertility caused by sterilisation from a previous relationship.

Where can you go for more information?

Gain a basic understanding of infertility here http://www.resolve.org/infertility101

Learn more about National Infertility Awareness Week® (NIAW) http://www.resolve.org/takecharge

Where can I get more information in New Zealand?

www.fertilitynz.org.nz - Fertility New Zealand is committed to supporting, advocating for and educating all people who face infertility challenges at all stages of their journey and beyond.

Here's the beastie!

All my case notes from the Hamilton clinic of Fertility Associates arrived yesterday.

I saw the envelope in the letterbox and I had to just grab it and basically run to the front door! I was so nervous. I put it on the chair without opening it, and looked at it. This was the moment I would finally see the dreaded CPAC form that the clinic had used to deny us funding for fertility treatment. Then I decided I was being silly and tore into it. Here's what I got:

CPAC form - the real one that FA used to score us   :(

You may not have immediately noticed, but see if you can spot the difference between the form above (written not by the Ministry of Health or any other official government body, but by the very clinic manager who has been such a pain.in.the.arse to me) and the form below...

Link to the PDF of the CPAC form I had found on the Bay of Plenty DHB website.

Picture of "official" (as far as I know) form:

The CPAC form that I found online. Spot the difference?

I dunno, the form from FA just looks bogus. There are many differences between the two, but perhaps the most surprising thing is that instead of scoring us the way I had expected, the numbers are a little different too.

For instance, obviously the consultant from FA had only given us a tiny score for "Duration of Infertility", but she had also, unexpectedly, given us the highest possible marks for "Number of Children". I thought that we would only get an (8) for that question, but since the FA form is worded "Children at Home" rather than "Number of Children" we scored a (30). Which was a little say of sunshine in this paperwork quagmire! lol :P

Yeah, so instead of getting a (50) for "Duration of Infertility", we only got a (20). Stinky poos. The form obviously doesn't say ANYTHING about penalising us because hubby has a vasectomy. In fact, the only other place we lost marks was the question "Sterilisation", where we got a (10) half marks.

FA gave us a 60. Minimum pass score is 65. I thought we were due a 68. Turns out we are due a 90!!!

Well! That's more like it!

Now, I only have a couple of things to do:

Contact the Doctor who was on the advisory board that figured out how the CPAC form should be made. Hopefully he will be able to answer my questions about the form. I'm pretty sure that the one FA is using is NOT identical to the "official" one authorised by the National Health Committee.

Contact my diabetes endocrinologist, and share this news with him. He's been really helpful and supportive of this crusade so far. I'm sure he will be most interested.

Contact the advocate from the Health and Disability Commissioner's office, who, unfortunately, gave me a defunct email address so has received nothing I've sent her for the last month. Dumb. Phone it is, then.

Update the Member of Parliament. He's promised to contact the Ministry of Health on our behalf.

Get-writin' my letter of complaint to Fertility Associates Hamilton. Because, no matter how this turns our, so far I am not impressed.

I am incredibly relieved that the CPAC form FA sent me proves my theory, so far. My theory that they have illegally and unlawfully discriminated against us and artificially lowered our score by 30 points, OR perhaps, they just don't know how to use the form properly. Which, for a medical establishment, is a worry in itself.

I think that the first option is more likely. That way, FA are hoping we will give in and pay for private treatment. But we just can't afford it. And this is putting my life on hold. I have to do this right. It's a delicate situation, like trying to hold a jelly in your hands without letting any slip. I feel like if I give too much away, show my cards to early, FA will just steal all my hard work away and not change our score. And not let us have access to funding, or treatment, or pregnancy, or birth, or motherhood.

Oh my Grrrr!

So, in response to my last post which talked about how I was having trouble writing the letter to the MP, I have since sat down and written a pretty good draft. No it's not done yet, but it is a LOT closer.

I've been at work, and not really working, rather, I've been investigating mountains of reports and documents relating to infertility funding in New Zealand.

So far I have found the following interesting documents:

1. National Specialist Guidelines for Investigation of Infertility, Priority Criteria for Access to Public Funding of Infertility Treatment (This is a copy of the dreaded CPAC form)
2. Assisted Reproductive Technology: The Aotearoa/New Zealand Policy Approach (A thesis by Lynne Patricia Batty)
3. Access to Infertility Services: development of priority criteria (A report to the National Health Committee by Wayne Gillett and John Peek)
4. Costs and Effectiveness of Infertility Services in New Zealand: A Decision Analysis (Wayne Gillett, John Peek, Richard Lilford)

I found the CPAC form (1) online last night, as part of research I was doing while writing my letter to the local MP. I couldn't believe it. All this time, and I tripped over it by accident!? Sigh. At least I have a copy now... although this one is dated 2001... remember that when we got scored to see if we were eligible for access, the fertility specialist would not give us a copy of the CPAC form? Yeah, well turns out there might be a sinister reason for that.

Document (2) is a thesis written in 2002, and I've only got a couple of pages into it so far. But it looks interesting so far, perhaps useful...

Documents (3) and (4) were perhaps the most brilliant "finds" after the CPAC form itself.  I knew they were in the local library at the tertiary institute where I work. I just couldn't figure out a way to get them without a) the librarian looking at me over her spectacles with a questioning face, and b) having those two reports forever listed on my library record at my place of employment. I don't feel ready to scare my *new* employer like that just yet!! :P

But I had a plan. A cunning plan, so cunning if you put a tail on it you could call it a weasel!

The work library is currently being renovated, and the students are still on holiday. The door is pretty much blocked off as the builders are busy sawing and nailing etc, but I chatted to one who let me into the dark library. There was only one staff member in there working in a back office, so I went quickly to the shelves to get the books. Then I photocopied them in their entireties. No permanent record. I have complete copies that I can scrawl all over at my leisure. Excamallent. :) Quite pleased with myself.

I wish I could put digital copies up here for you to read (should you need to), but they are super-long and it would take forever to scan them. If you are interested in reading them (i.e., you're in NZ and fighting an infertility treatment funding battle) contact me and we can discuss postage.

Basically, I am hoping that all of the documents and reports I've found will support our case that we believe we have been discriminated against and unfairly denied funding. So far so good, all the documents are working in our favour.

Now, I've been checking the Fertility Associates website about every month, just because they do put new information up there. Would you believe it - they have changed the rules for eligibility for access to public funding! They now state, in black and white on their website, that:

Factors which reduce CPAC score – but funding may be possible:

• Having one child12 or younger living at home
• Having had a vasectomy or tubal ligation.  Where one of the couple has had a vasectomy or tubal ligation, duration of infertility for CPAC scoring starts from when the couple first see a doctor about having a child.

OMG. That was NEVER up there before.  :(  And it is not a part of any of the other documents I've found, which deal with how to decide the rules! (My heart sinks. Hope once again tries to fly away.)

I think that Fertility Associates is being discriminatory; I think they are adding their own rules ON TOP OF THE CPAC FORM.

So, without an actual current CPAC form, with associated documentation to go with it, I can't be sure. I have a gut feeling, but I can't be sure.

And just out of interest, I scored us myself. Remember how the fertility specialist gave us a score of 60? Well, when I did it, I got 68. Which is a pass. Suck on that Fertility Associates!

/sorry, grumpy :(




::UPDATE::


I have just gotten off the phone with two lovely ladies from the hospital who's website published the CPAC form. I asked them: "You know that CPAC form for infertility you have on your website, it's dated 2001, is that the most current version of that form do you know?"

And lo and behold, the nice lady in Elective Services did know. Yes! It's current, Yes! They update them regularly. So that makes me hopeful again. Because it means that the fertility clinic, Fertility Associates, has less of a leg to stand on when they say the duration of infertility is calculated from the date of the first doctor's visit. Because NOWHERE on the CPAC form does it mention that. And NOWHERE in the documents (3) and (4) above does it say anything about it either. Because it's a stupid made-up rule of Fertility Associates, that they are using to weed out couples/people who don't fit the traditional notion of a pretty little infertile family. That's what I reckon anyway.

But yay! Now I know that the CPAC form I have is the current one! Everything just feels a little more stable and hopeful than it did when I read that bit on their website (see above).

Some media about the ASB bank TV adverts...

Every couple of months I trawl Dr Google looking to see if any new diabetes/ivf/NZ blogs have turned up.

Today, to my surprise, I found a whole bunch of articles relating to the TV ad for a New Zealand bank, ASB, that is offering loans for IVF. I wrote an article about it here.

These are some of the more interesting ones I found:

• http://bioethicscentre.posterous.com/are-banks-wrongfully-exploiting-the-childless
• http://www.rsiinfertilityblog.com/2010/12/02/poor-taste-in-ivf-ad-from-new-zealand/
• http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=5032&blogid=140

Just interesting to see that I wasn't the only one who reacted strongly to these ads.

Amongst all the bad stuff:

• IVF is expensive
• And emotionally taxing
• And there is not enough public funding in NZ for it
• And access to that funding is very strict and unfair
• Maybe the ad is exploiting infertile people?
• And it's definitely not realistic - very much rosy-tinted glasses material
• Such as being able to afford a loan - that means that one of the parents is wealthy enough on a single income to look after the whole family while the Mum is on maternity leave etc... Not very realistic, for us at least.
• And they get triplets! NZ has a single embryo transfer policy for public funded treatments
• Then they have enough money for a new car!

Was some good news:

• ASB (the bank who made the advert) has raised the awareness of infertility in New Zealand
• This could in turn make people aware that IVF/infertility treatments are very expensive, and more public funding is desperately needed here.