Only 2 weeks until sperm retrieval!

Hi everyone. Yes, I am still here. No, nothing much has been happening on the topic of infertility treatment around here for ages.

However, that is all about to change, as we officially start treatment on the 25th of January 2013!!!!

Hubby and I will travel to Hamilton so he can have the sperm retrieval procedure done. This involves a local anaesthetic and possibly (?) some light sedation. The RE will attempt to retrieve sperm directly from one teste via four increasing more invasive procedures: TESA, TESE, MESA, PESA. Needle aspiration into teste is first, then needle aspiration into epididymis, then a kind of biopsy where a piece of tissue is taken, then I think a larger chunk is taken. Sorry, it has been a while since our appointment with the RE.

The procedure will only be done on one side, so that if there is any damage caused (touch wood) it should only affect one side.

So, we have in essence, four shots to retrieve some swimmers. I don't know if a second sperm retrieval procedure is covered under publicly funded treatments or not.

Any sperm that are retrieved will need to be washed and frozen. Washed, because of the high likelihood of anti-sperm antibodies (it's over 12 years since Hubby had his vasectomy now), and frozen because we are not doing the IVF right away. No, of course not. There is more waiting, silly!

Because we won't technically have finished our 3 years of penalty wait-it-out time until August / September 2013. So the sperm needs to be stored until then, and then hopefully it will thaw ok. Freezing and thawing will damage the numbers, but we have no option. But I was worried that we wouldn't get to do the sperm retrieval procedure until August, so at least we get that over with sooner. (The cynical me thinks that this appointment got sent to us around about the same time that the HDC complaint went in... Hmmm.)

IVF will not start until we know whether or not we can get viable sperm, and I am happy about this as it means I won't be put through the drug regimen unless there is a really good shot.

So when August / September comes around, I am to start IVF drugs asap. I assume we will be back up to Hamilton before that to collect drugs and be trained on their use. (Yes, I have a few things in the timeline to iron out).

It's all becoming much more real. For so long (nearly 3 years "officially infertile" as the NZ medical system defines it, plus 6 years before that. That, friends, is nearly 9 years of infertility. And we are only just about to start treatment. This still blows my mind!) we have been waiting, and fighting, and crying, and hoping, and researching, and advocating, and trying to plan, and trying to live life anyway, that to have this ephemeral, ethereal, indistinct future suddenly right on our doorstep is, is... what?

Is it amazing? I'm not sure. I don't know how I feel now. Nothing dramatic, emotionally, is appearing just yet. I have booked the motel for the night before the procedure. That made it real. We have talked about how much it might hurt (physically) and dear Hubby has assured me that since he is not freaking out, I should not freak out. He says that since he already had a vasectomy he knows roughly what to expect. He's calmer than I am, so I guess you could call it nervous energy. The feeling that the waiting is finally coming to a climax. That action will start. That all the past years torment will be swept aside.

I know better than to think that. I will carry the experience of infertility with me forever. I have read enough in these years to understand that people don't just forget what has happened to them.

Which brings me to the HDC. Now, I spent a lot of energy writing to the Health and Disability Commissioner of New Zealand to advise him of what had happened to us, and to try and get some fair treatment. Of course, that process took so long that now we qualify for treatment on our own. So that whole thing seems moot. But I have received letters back from the HDC and I haven't had the heart to read them in depth and analyse them properly. Part of that is because they have so obviously missed the point and swept my complaint aside (the point: that I was not party to the decision to get a vasectomy, and that we had already waited 6 years, and that an additional 3 years of penalty time is cruel and unfair), but also because after a discussion with my husband I decided to look forward. To try not to waste time keening for the past. To make plans and move into the future. To plan for treatment, which is now coming up.

But I will share the results of the HDC complaint I submitted when I feel ready to read them and write my opinions on them. Personally, I won't get much out of this except for a great sense of indignation that they still don't understand, and are still acting unfairly. But another part of me hates the thought of some other couple being forced onto this journey unnecessarily.

So, there you go. I am nervous, worried, optimistic, elated, scared, pessimistic, optimistic, calm, and tense all at the same time. I feel guilty that was is essentially my request (to have a child) will mean that my husband has to have an operation. He seems unfazed by this, and I know he really wants a child too. He says he is excited, and that we would make great parents. I say, we already are great parents!

This blog should get a bit more active over the coming weeks, and I hope I can bring you all some good news about a successful sperm retrieval procedure.

Visit to see an HDC advocate

During the term break, I called the customer service line for the local District Health Board to see if they could help. The nice guy there directed me back to the Health and Disability Advocacy service, which made sense. Although I'd already been there several months ago - and was advised that the HDC couldn't actually help in my case.

Well, I took the customer service rep's advice anyway, and emailed the HDC again for advice. The local advocate suggested I come in for a meeting with her. I wrote a "summary" (read: 9 pages) of our story, and off I went.

Well she was lovely. We spoke for over an hour and a half!

Turns out that I have 3 basic options:

1. Write letters to each of the health care providers who have given me/us bad service throughout this process.
2. Send my story to the Health and Disability Commissioner himself.
3. Do nothing.

By default, "doing nothing" is what we're already doing - just waiting out our time.

Because it won't take me much more work to write a cover letter and send my story off to the Commissioner, I think I will do that. I honestly don't expect it to have any impact on our case. It will probably take up to 8 weeks for a response to come back, and then he will have to make a decision on what direction our case should take. The Commissioner probably can't reduce our "penalty time" and even if he could, by the time the paper work is waded through, we will most likely be only our 18 month time of the waiting list anyway.

I'm fine with waiting lists, but not with illogical pseudo waiting lists. They suck.

The other option is to write letters to each of the providers concerned, telling them that their service is the pits and to pull up their socks. Again, I couldn't expect more than an apology letter from each of them, and at this stage I don't care for a bunch of useless apology letters.

I want to look forwards, not backwards. And that is a massively different way of looking at our situation, for me anyway.

Right now you're thinking "so what's the point of writing off to the Commissioner then?" Well, he has the power to review systemic problems and suggest changes. And that's what I really want. Well, that's what I want next to having our waiting time wiped. If the discrimination could be removed from the system then that would be incredibly positive. At this stage, that's all I can hope for, as there is nowhere else to turn to. I have literally tried all my options after this letter.

The good news is, once we finish waiting out 4.5 years (penalty time + waiting list) we will then be able to access fertility treatment.

It's just such a long way off.

Some positive movement

I have just had a week off work, for mid-term break, and I did not really enjoy it very much.

It started out because I was lonely, and then, because all I could think about was IF. It was driving my brain around in circles so that I was having palpitations, stress, anxiety, and panic.

Since I had a lot of projects to work on, I felt guilty for allowing my brain to wallow like this. But trying to do other things just made it worse. I find it very hard to be creative, and impossible when my mind is clouded with the thick fog of IF doubt swirling.

So I got on the Interwebs. BIG MISTAKE!

I found what seemed to be a lovely online community right here in NZ devoted to IF. Wow! Where have you been hiding I thought?

You may or may not remember that my last IF-based decision was that the fighting was making me ill and Hubby and I agreed to give it a rest. Just wait.

Well that's all fine, except when I did a quick count and realised that it would be a few years yet before we can get treatment.

So I posted on the forum. HUGE MISTAKE!!!! For these were not supportive IF folks, of the type I've experienced on US and UK forums, no, these were Kiwi chicks who wielded their claws, spat, then closed ranks on me. Me! Another infertile! Honestly, I've never been burned like that, or misunderstood so well. And it was a whole flock of them. I'm not going to write specifics or link to the forum, as that would just give them more power, but lets just say that they completely demeaned and belittled both me, my husband, and our struggles.

Sigh.

So, feeling like complete and utter crap, I did what you do in that situation. I went to walk the dogs with my sister.

She pointed out that although they were nasty on the forum, they were right in the fact that all we do have to do is wait. It's only another year. And she's right. One more year and then we will be off stand-down time (or penalty time as I like to call it) and onto the waiting list.

Let me be clear here: I have NO issue with waiting lists. Sure, they suck, but they are logical.

Stand-down years, however, are not logical. They are a pseudo-waiting list. And that is very suspicious to me.

So my brain which had been moping and wallowing and freaking out turned into a "let's get this show back on the road" type of brain!

Ok, so maybe I ate some chocolate during this process. How can you tell?

I got thinking about where I left off with this paper work battle: the Minister of Health had advised us to contact the CEO of our District Health Board.

Hmmm. That's a CEO, all big 'n important. Maybe I'll just call their customer service line first...

And what a great thing that was! The guy was super-receptive and very helpful. We spoke for over half an hour, and he gave my synopsis a thorough examination. He even suggested where I could go next for help: the Health and Disability Commissioner.

Oh. Yeah, I kinda been there already.

Him: Maybe you should contact your MP, after all, it's an election year!

Well....I've done that too! And the Minister of Health!

Him: you sound like a very good self-advocate! :)

It turned out that when I last talked to an HDC advocate, she gave me bad advice (remember? She basically told me that the HDC couldn't help because my complaint was "paper work and bureaucracy, not medical or clinical"). The customer service dude gave me the details of another advocate right in our own region to talk to. Said she was a personal friend of his and that she would help however she could.

So I've just emailed her. We wait and see.

p.s. It was very good to talk to someone. It was like my whole body relaxed and I had a sudden creative burst of energy. As a result, I weeded the garden and found the biggest cauliflower you've ever seen. Seriously, this thing is in perfect health, and is bigger than my head. It was also home to about 40 snails haha!

You know that I wasn't feeling too flash on Monday, but yesterday was far, far worse.

I knew that the clinic manager from the Hamilton branch of Fertility Associates (FA) was going to email me after she had reviewed our case, so I decided not to check my email until lunchtime. This meant that I could go home and have lunch and read the email in peace and privacy.

Trouble was, it hadn't arrived by lunchtime. The suspense was killing me - oh the nerves!

But what had arrived in my inbox instead was a hope-inducing email from my diabetes endocrinologist.

To give you a synopsis, he offered to: edit the letter I sent to the MP and make it more powerful, write a second letter of support for our case, perhaps phone FA directly, and you gotta love this:

"If the are misusing the CPAC for then I have an ethical obligation to challenge them, and they have to explain. Doctor's rules."

He also suggested putting a complaint to the DHB (District Health Board), the Minister of Health, the Human Rights Commission, the Women's Rights Commission, and the Health and Disability Commissioner (The HDC, which I've already contacted).

"...raise as big a stink as you possibly can. The only thing that influences politicians and government bureaucrats is fear of public exposure."

And lastly he mentioned going to the women's magazines and current affairs mags, which I have thought of, in fact, if I did go public with my story to somewhere like women's day, perhaps the money I get could pay for fertility treatment. ha! (not sure if I'm ready to go uber-public like that yet - it doesn't just affect me and hubby then, it's all our family, the kids, coworkers, employers etc).

"It seems to me that FA (with a near total monopoly for the entire country) are not using the CPAC form honestly - probably to make more private profit. THis is what private medicine does - all the time, [it] doesn't even need to be investigated. It does need to be pointed out to the responsible officials however...it disgusts me to see [people using illness to make money], instead of using money to treat illness."

So that was pretty darn awesome to find this email yesterday. It changed my whole mood and stopped the insatiable anxiety from totally consuming me.

Unfortunately, the afternoon got pretty crappy.

At work (at the local college where I lecture) we are busy preparing for the start of the teaching year. We had a big meeting with our newly formed faculty and new Head of Faculty. Very formal. At about an hour into the meeting, my lips started feeling weird. It took a few minutes to click that I was going low :( but I was too low to get myself up, out from between the hundred-odd tightly packed chairs, and out the door with any grace, let alone up the four flights of outdoor stairs and along the 3 corridors to my office, through the security door, and to the juice in my purse. No. I know it's stupid, but when I go low, I never want to cause a scene, especially not in front of my new coworkers, boss, HoF, and Faculty members!

I waited until the end of the meeting, and then just got up and surged out the door and up the stairs in the flow of people. I don't remember most of the meeting - people were talking about it today and it was like remembering a dream - and as I walked zombie-like back to my office another tutor was talking to me but I couldn't hear him. Loss of hearing is an advanced symptom of mine, even worse than tingly numb lips. So I knew this was a bad one.

Luckily, by divine intervention, I got back to my office ok, and unnoticed I hope. Into 2x packs of juice with a meusil bar chaser, and a test reveals that I've come back UP to 2.2mmol/L

I was stunned and useless for the next 30 mins. Luckily everyone was packing up to go home, so I pretended to work/surf the web, and it just looked like I was being virtuous and working late. Not waiting for "normal" vision to return so I could drive home.

I check the email before leaving work. The email from Fertility Associates was there. I didn't read it...

...until I got home.

Dear [Kaitake]

Thank you for your phone call yesterday, and for conveying your concerns regarding CPAC scoring for publicly funded treatment.

 From reviewing your records I understand that [hubby] had a vasectomy 7 years ago.   As you know, the duration of infertility is one of the eligibility criteria for publicly funded scoring.  After sterilisation (vasectomy), duration is measured from the time that the couple approached a health professional asking for help to become pregnant.  You reported to Dr R that you first approached your GP in 2009 to enquire about conception options.  Accordingly, Dr R advised that in September 2012 you will count 3 years of duration (from 2009), which will give you the minimum required score on this criteria to be eligible to enrol for publicly funded treatment.

If our records do not accurately reflect the date you first consulted a Doctor on fertility options, please send us the record / evidence of consultation and we will amend your scoring accordingly.

I hope this information is helpful.  Please do not hesitate to contact me for further information or assistance.

Kind regards,

Clinic Manager

Bah. This sucks big time :(

And so the fight continues... wish me luck! Any ideas you have too :)

Panic attack

I sit here typing this with manic fingers, on my unmade bed, as I have a panic attack. My heart is bursting and thumping and I have the shakes and I'm crying a bit too.

I've just called Fertility Associates. I asked to be put through to the right person and told the receptionist that we had been dealing with the Hamilton clinic and had some concerns over how we'd been treated. (no sense freaking the receptionist out, I figure).

So she doesn't put me through to Auckland clinic like I ask, like the HDC Advocate suggested, no.

She transfers me to the clinic manager at Hamilton. And this is where I started to freak out. Majorly. It's taken me a week and a half to gather the necessary courage to make this phone call.

The receptionist hears the anxiety in my voice and asks "I'll just transfer you now, is that ok?"

"Yes," I say - meaning NO NO NO NO NOOOOOO I want to talk to ANOTHER CLINIC and find out if Hamilton has done things by the book or not!!!

So anyway, clinic manager in Hamilton picks up. I ask her to repeat her name, and I'm writing everything down. Damn, should have put the phone to speaker-phone and recorded it all with the iPhone. Sigh.

So anyway, this is what happened:

I told her, very quickly, what was wrong. VERY quickly, like, so fast I didn't even get time to mention the cause of our infertility. Just that we did not meet the minimum CPAC form score to get funding, and that our appointment with the doctor had ended in tears. I also happened to mention that we were in the process of contacting my MP and an advocate from the HDC... and as the HDC advocate suggested, this did indeed seem to speed things along a bit. Good. I like being taken seriously.

I said how all along we had been led to believe (by GP and OB/GYN) that we would qualify for publicly funded treatment, so it was a complete shock to be told that we don't qualify. She responded that it all depends on the duration of the infertility.

The clinic manager asked if I would like her to review our case: Yes!

She said that the CPAC form is nationwide, so there should be no difference between Auckland and Hamilton - this seemed to unnerve her quite a bit that I kept bringing it up. Don't particularly think she likes the fact that her clinic may have a bad rep!

I mentioned that I thought our CPAC form had been done incorrectly, and there was nothing on it to indicate that we should have to wait for 3 years. I didn't get a chance to say why I thought this as she talked over me a one point, and I gather she was not happy to get this call, but overall it took a turn for the better, I hope.

She promised to review our case and get back to me tomorrow. I asked her to email me, because I can't have that sort of emotionally-charged phone call happening at work in a shared office. That's fine, she says. "I will review your CPAC form to see if there's been an error or something, or if we can be lenient"

Holy [curse]!! "Lenient" This does not compute! Not with the way their doctor treated us at our one and only never to be forgotten consultation! :P

I can't remember how I said goodbye, only that after putting the phone down everything went swimmy and I fell sideways on the bed. I had made sure to have a couple of biscuits (cookies) before making the call, as stress can make me go very low very quickly. As I type now, at the end of my post, I feel much better, hopeful even. Can't wait to hear back from her tomorrow that's for sure...

p.s. sorry this post is a little garbled - can you imagine what it's like in my head right now? :P

Books I'm reading

So I toddled over to www.stirrup-queens.com and found this book written by Melissa Ford:

http://thelandofif.blogspot.com/

I read the first chapter on amazon.com, so I've decided to order it. It will take over a month to get here to New Zealand! What!? It's almost like we live on the moon! :P

That got me thinking, maybe the local library has some books on dealing with infertility. It's been a hard thing to come to terms with this second diagnosis, but in reading Melissa's book (bits of it) I've already discovered things that are helpful to me. So I gathered my parking meter money and headed off to the library in search of more information.

I took all the interesting looking books, as follows:

The IVF Revolution, by Prof. Robert Winston

Why me? The Real Life Guide to Infertility by Loraine Brown

What to Expect When You're Experiencing Infertility by Debby Peoples and Harriette Rovner Ferguson 

Unsung Lullabies, Understanding and Coping with Infertility by Jaffe, Diamond, and Diamond

IVF & Ever After by Nicola Bedos

Infertility, A Guide for New Zealanders by Sue Saunders. No link, as I couldn't find anywhere selling it!

Looks like I have a lot of reading to get through! I've started with the last one on the list, as it's written by  Sue Saunders who is currently working as a counsellor at the fertility clinic that's we've had dealings with - how's that for irony! Anyway, even though it was written before the turn of the millennium, the information about emotional stuff seems sound.

Here's a bit of depressing news: GST has gone up. GST is Goods and Services Tax, and it applies to most everything you buy in NZ. It went from 12.5% up to 15%. "Why is that interesting to me?" you say, well, it affects the cost of IVF treatment. What was once around about $11K has just jumped to over $12.5K!!! :(  I sat down with a calculator last night and worked out the cost. I suppose it doesn't really matter if I reveal the name of the clinic, it's not like there are many to choose from in New Zealand: Fertility Associates. (P.S I really really think they should consider changing the photo on their homepage - a big pic of a baby is just insulting!) Yeah, so at least the cost of everything is on their website.

I'm trying to decide what to do, how to progress things a bit. On one hand, I've already written to www.fertilitynz.org asking for their help, and they have said they will be advocates for us and forward our letter of complaint on to the fertility clinic. However that was over a month ago. Now I'm wondering if I shouldn't just complain directly to the clinic. What do you think?

The other thing I'm trying to decide is whether or not I should approach the Health and Disability Commissioner. Here in NZ there is quite a good system where patient/consumers can easily make complaints about health providers. I've made use of them once before when my endocrinologist did a shoddy job of switching me over to Lantus (he got the dosing all messed up, which meant I had a bad hypo and broke my back, then he blamed me. Yes, he's my current endo - I live in a small town!) and the folks there were quite helpful and very clear about my rights. I know they probably can't do much in the way of getting us the access to public funding we require, but it would be good to stop a similar thing happening to other couples. It's totally changed my life. The more I think about what happened, I become convinced that we are being discriminated against. Just because Hubby has a vasectomy from a previous marriage, that should have nothing whatsoever to do with our marriage. Our marriage is infertile, with 0% chance of conception and over 7 years of trying. In any way you look at it, telling us to wait 3 years feels like a penalty that neither of us could have ever done anything to avoid. I read a couple of government reports by a chap called Wayne Gillett, in which he noted the feelings of grief and devastation are just as great in a couple who are "situationally infertile". I must get a copy of those reports (also quite old) and post interesting parts up here. Getting them may be hard though, as they are at the library at work, and I DO NOT want my co-workers to see me getting them out of the library. Maybe I will just photocopy them...

Anyway, I'm feeling tired and high and hungry. Want to eat, need to drink (water), and do a test. Until another day, have a great Thursday/Friday in your part of the world. :)