CD 15: Embryo Transfer day! 0dp3dt

Our Day 3 embryo transfer went perfectly. I am now - dare I even type it? - PUPO!

Since our appointment was at 11.10am, we didn't rush getting up. I woke at about 7.30am and made us both tea and toast (I am on caffeine free tea, but not being terribly strict about it).

We packed up the motel room and drove down to the lake for a walk. Since it's spring here in NZ, there are just loads of cute baby animals all around. Awww! I saw 3 baby pukekoes and a bunch of ducklings. In case you have never heard of a pukeko, here is a pic:

Source. These rather prehistoric looking creatures have enormous feet and live in fields and wetlands.

And that is not counting all the baby lambs and calves, and kid-goats and piglets I saw out the window on the car on the drive up!

Focus. Ok, so it went really well. When we got to the clinic I was busting, since they needed me to drink lots of water for the external ultrasound. We were shown to a room where I could get changed into the beautiful hospital gown moo-moo. Once again I clipped my insulin pump to the neckline, and we then found I'd cleverly left the Dexcom receiver down in the car! Poor Hubby had to race back down to get it. The embryologist and Dr G both came to see us, and nurse M gave us a gently-toned lecture about keeping my core body temperature after the procedure, and using the progesterone pessaries until told to stop.

We were led through to the OR with the spaceship door, and I had to walk right around the bed and climb on. The lovely nurse D was helping setup the bed with stirrups and towels and stuff, and Hubby took a seat to the left of my head. The ultrasound screen was, as before, to the right of my legs and then - I looked more to the right, past the hatch to the lab - I saw our one little embryo on screen!!!! The photo had been take yesterday when it was just a 6-cell, although the embryologist, M, had said it was now a great looking 8-cell. We only get to transfer 1 embryo since this is a publicly funded cycle, and even then I don't think anyone would be in a hurry to risk multiples in a Type 1 Diabetic woman.

Hubby and I were both shocked at this tiny little thing. Granted, it was magnified to be about 10cm wide on screen (only 125 microns in real life, we later learned) but it was amazing. I am hoping to receive a copy of the pic soon, will share when I get it!

Nurse D squeezed gel on my tummy and used the ultrasound thing to show us my (full) badder and uterus-squashed-flattish-under-said-bladder. She showed us where to look. Then Dr G came in and both of them laughed about how no one had told the lab that we were in here, and how there was some mild role-reversal going on with doc making the call to the lab and nurse working the ultrasound!

The doctor inserted the speculum and did something else, advising me I would feel some "mild tugging" on my cervix. Now, how am I supposed to know what that should feel like, eh? Anyway, to me it felt like a catheter being inserted - I could feel it go the length of the, um, journey into my cervix and there was some mild stingy/cold (very mild), mainly tickley sensations. Not unpleasant at all. Just weird as it was novel. This was not the real deal yet, so I'm now entirely sure what Dr G was doing, a test run maybe?

Next thing they were checking my name and date of birth again, Dr G checked the name matched the petri dish on the shelf at the lab-hatch. The lab tech then loaded up the catheter from the petri dish. I could see her peering under the microscope and taking her time/having a devil of a job scooping up the embryo into the catheter. She passed it carefully through the hatch to the doctor, I made sure to watch the screen and take a deep breath.

Of course, I was looking in the wrong place. I caught the "bright spot" out the corner of my eye right in the centre of the screen, but Hubby saw it no worries. It stayed bright for the time the ultrasound was trained on it, and Dr G told us that it was the bubble of liquid around the embryo that we could see.

And then it was over. I wasn't asked to lie down for an hour. I could get up right away and make my way back to the first room. Cue a stream of nurses all telling me to avoid raising my core body temperature, again. Nurse H, Nurse D, and Dr G all wished us best of luck and that they hoped it would work for us.

So that is that. We drove home this afternoon. I had a horrendous high blood sugar caused by a not so brilliant lunch choice, and that damn progesterone. Seriously, that stuff is an absolute nightmare for a diabetic, let alone one who is now supposed to be watching her blood sugars like a hawk! I am having to set a 20% basal increase for 2hrs every time I have the progesterone, although unlike an injection I never know when it's going to "kick in"! Arrgh!

Apart from that it's all good. Surreal, but good. I don't feel any different and it will be nice just to be calm for a while with no trips back to Hamilton planned for the near future.

p.s. So, you are wondering about the other embryos eh? Well, yesterday the second-best one was a 5-cell and had grown to a 6-cell today. They will culture it on and if it gets to blastocyst stage, then it will go into the freezer. The other one stopped growing at 3-cells. I kinda wished we had at least one more to freeze, knowing that we have had a pretty consistent 40% attrition rate all along this journey. Maybe my stim meds were not strong enough? Oh well. For now, I will wait and see what happens at the end of the 2ww.

p.p.s. Dr G said I have a small polyp on my cervix. Looks benign, but that sux.

CD 13: Fertilization report

Happy news! We have 3 good looking fertilized eggs!

Last night I went to visit my parents and got home a bit too late at 10.30pm. Hubby was already asleep! I slept well but was woken rudely by the Dexcom yelling at me that I was low. The first two times the alarm went off, I didn't look at it, rather I dreamed I looked at it and in my dream it said I was high lol. Getting up, doing a test, handling the pump and wobbling about getting juice was not fun, I had pretty much list my balance from a combination of tiredness, hypo, and effects of the sedation and codeine wearing off.

Woke this morning with a really sore throat. I later looked at my throat in the mirror and there are little nodules over my throat :( boo. By tummy felt a lot better and I was comfortable stretching out today. Still had some mild cramping this morning which has since eased, but mainly it feels like I have done a million low-ab crunches.

I took the first of my progesterone pessaries (yuk) called utrogestan, this morning. Little buggers are hard to get into "location"! I feel like I am filling up with little white marbles lol. So far my blood sugars have been going low, which may be a combination of previous hormones wearing off, and tiredness. Not sure if the lows are directly attributable to the progesterone yet, as I normally got higher in that part of my cycle.

Had a shower and by the time I came out into the lounge, Hubby was sitting on the couch with the number for the lab all dialled up and ready to call. We left the embryologist a message and asked her to call back to Hubby's cellphone. With that, we could leave the house knowing we would get the info.

I really wanted a walk, but I knew I wasn't up to that yet. I had read that gentle walking is good to help stimulate blood flow to the endometrium lining so that's another good reason to get up and about.

We had to get a warrant of fitness check for our car and it turned out that we needed a new tyre. At the tyre shop they were able to do it right away so we went for a gentle stroll into town and back for 20 mins. I have never wanted to sit down so badly! But it was excellent to get a walk to loosen up all my muscles.

We took the car back to the testing station and while standing in the carpark, in the glorious spring sunshine waiting for the re-check, we got the call from the embryologist, T.

I suddenly got a rush of worry and trepidation and nerves. Her first words gave no indication of what sort of news she was about to deliver. I was simultaneously deciding that it was bad news and that I wasn't sure what my reaction would be in the carpark, and I was making deals with myself about how many embryos would be "good" or "ok". I was silently hoping for 3.

When she said "it's good news" I just about sank with relief. T went on to explain how out of the 5 eggs, 3 has fertilized normally and looked great, one more had fertilized abnormally and failed to eject one of the DNA halves it needed to, and the fifth failed to fertilize at all. 3!!! Thats a 60% fertilization rate. Yay!!!! It's so amazing to think that we have just created 3 potential people!

The embryologist will phone us again tomorrow about lunch time to tell us how the three of the have grown/not-grown overnight. She will also be able to advise us whether we will need a day 3 or day 5 transfer. Today is day 1. If we need to do a day 3 transfer then we will be back on the road again tomorrow after lunch.

T had previously explained how there are pros and cons with transfers on both days 3 and 5. If there are only a few embryos then a day 3 ET is more likely, however if there are more then they might choose a 5 day ET to grow some on to blastocyst stage. Of course, it might mean that none grow-on, but as she pointed out that would just save us from a 2ww to find out the same result. However she also pointed out that some people believe a day 3 ET is better to grow the embryo in the natural surroundings, so to speak. I am not fussed. I kind of expect a day 3 ET simply because we only have 3 embryos (as of today) but I'm not fussed either way.

My boss and friend at work both know what's going on and they support me, so I will be able to take sick leave for either time. Actually, there's not really an option is there? I mean it's not like you can move this sort of appointment lol!

Symptoms today: I'm generally feeling much better. My brain has mostly returned. The nips have been incredibly tender and almost clenched? Well, painful anyway. They did start to relax a bit today. I had some minor bleeding from the egg retrieval yesterday which is petering out today. All in all I'm feeling... well. :D

I went very high after a lunch with MIL (damned pizza and cake :( boo) and actually slept for a couple of hours. Hubby cooked another lovely dinner of gurnard fish, roast potatoes and a salad with almond and Parmesan on top.

And now we are watching an old James Bond movie :)

CD 12: Egg retrieval procedure

Please forgive me if this post makes less sense than usual, or rambles, as I am still awash with codeine!

Good news! We got 5 excellent looking eggs! I'm really happy with this and the embryologist said they all look the have good membranes.

By now, we may have a 7-hour-old! How crazy is that?

Started off this morning very early with a light breakfast at 5.40am (4hrs prior to OPU) and then napped until 7am. I got up, had a shower, got dressed and we packed up the car and drove over to the fertility clinic at 9am.

As normal we checked in and were given little slips of paper to take across to the other side of the building. Mine said OPU 9.40am (oocyte pick-up) and Hubby's said sperm sample! I told the receptionist that wouldn't be necessary or possible since Hubby had to have TESA sperm retrieval, but on closer inspection the form said "from andrology" so it must just have been a "defrost this please" note lol.

We were in the waiting room long enough for me to look through a couple pages of the morning paper, and then our old nurse came out to take us through to the Pre-op/post-op room with the armchair.

We got talking about diabetes and she told us how she has struggled with T2 and so has her family. It was nice to share with her, and Hubby showed her the Dexcom while I went to the bathroom.
Then started an onslaught of nurses, doctors, embryologists all checking my name and date of birth. I had yet more forms to fill out, and they must have told me all about everything at least thrice.
I was very impressed with the embryologist, T, who told us how she feels a great responsibility to take get time to search for the best quality sperm from a sample, since she is choosing the DNA of our potential future children. We asked her when exactly would the ICSI fertilization take place, and she said she would start the process at 2pm, carefully washing the eggs, then putting then in an acid solution to remove the outer membrane. She would then take her time looking for good quality sperm to fertilize all the eggs with. She reckoned that 2.30pm should be about fertilization time! :D

---- I had a break from writing, got a bit tired! ----

Anyway, after the doctor tried to come in several times only to find the nurse and I were busy chatting (she took my blood pressure too - slightly raised for me), she was finally able to put in the cannula for the IV. I only told her afterwards what a drama it was last time!

It made a lot of difference having a plan to manage diabetes, and having the medical folks take it seriously. I made sure that I remained calm (and I truly never got stressed even when I got locked OUT of the OR! Lol) as it can affect my blood sugars and make them drop rapidly.

Getting the cannula in meant that I could have IV dextrose should I need it, and having the early breakfast ensured I had a "buffer" in the tank. But the Dexcom was the absolute winner on the day. Hubby could hold on to the receiver and manage it, we even practiced with him testing my blood sugar via fingerprick test the night before. We made sure to tell all nurses and the doctor that the alarms might go off and not to panic. We were able to discuss with Dr G how she would give small boluses of 20% dextrose should I go hypo.

I was now in my stylish white hospital-moo-moo gown and I clipped the insulin pump to the neckline. I was told to go to the bathroom one last time, and then it was show time!

When I came out of the bathroom the pre-op room was empty, but I could hear Hubby's voice behind the big wooden spaceship theatre door. They were saying "push the green button!" and once I figured out they were talking to me, I let myself into the OR!

Setup similarly to when Hubby had his sperm retrieval, the bed was on the left and I had to walk around him at the head of the bed, around the ultra-sound machine at the foot, past the hatch to the embryo-makin' lab, and climb on from the other side.
The stirrups were padded, but they still freaked me out a bit. I knew that there would be lots of scary equipment in there so I guess I was prepared for it. I hopped up (carefully this time!) and the two nurses, H and P, kept wanting me to shuffle down the bed. I got my calves in the stirrups and they laid a large white towel across me and asked me to shuffle the bottom of my gown/moo-moo up.

--- got tired again and had some dinner! ---

While one nurse attached a blood pressure cuff to my right arm, and a blood-oxygen monitor to my left index finger (which kept slipping, causing me to adjust it, causing the nurse to scold me for moving my IV arm hehe!), the other nurse was placing black drapes over my legs to keep them warm. They unhooked the "bum" of the bed and suddenly the towel didn't feel like enough coverage lol!

The doctor appeared at the foot of the bed and asked me my weight, she then used this to calculate the dosage of midazolam and fentanyl. The nurse gave me these (and some augmentin antibiotic since I'm T1) and warned I would start to feel loopy. I got a rush of cold choking feeling all up around my neck and got a bit worried, but everyone quickly reassured me that would just be because the medication was cold.
Hubby was right by my side and kept his hand on my right shoulder. :D

The drugs took effect very quickly and I got loopy really fast! I was intent on watching the ultrasound screen - I really wanted to see my eggs! - but it was all mostly hazy. I don't remember seeing the hatch or hearing the embryologist to my right at all, although she was well within earshot.

I felt the ultrasound probe and then the doctor told me to take a deep breath and she went in for the right ovary. There was pain which made me wince, but it was over relatively fast. Two eggs retrieved on the right. I knew I'd seen 3 there the other day so my brain was still working, sort of. I was awake enough to make jokes and be surprised at how awake I was. The sedation was pretty light, but I was really loopy.

Another breath, now the left side. This one was a lot more painful, and it got worse in the seconds following the needle going in, a kind of wrenching movement. I described the nature of the pain later to Hubby as being similar to when you get an intra-muscular injection in your arm, well think of a wider needle, and then imagine you get a really bad cramp in the muscle the moment of the injection. Yes it hurt, but it was very short lived feeling and I got instant relief once the needle was out. I later learned we got 3 on the left side.

It was over! We had eggs! I was really happy to be through it, and to know that it was a calm, happy, exciting experience. Yes there was some pain but it wasn't too bad and it felt like it was only a total of 30 seconds.

It seemed like after all the activity, there was a lull for a minute. The doctor and nurses seemed to vanish out of the room (probably just out of my line of sight) and I recall a kiss with my Hubby and him telling me he loved me and how brave I was. It was pure relief.

Nurse H took my blood pressure one last time and then re-installed the end of the bed and helped me take my legs out of the stirrups. I was unhooked from all the monitors and the nurse put a pad in my knickers and then got me to slide into them while half sitting up.

Then came the slow ascent to sitting up, swinging my legs down to the left. They made me wait until I was steady enough to stand and then Nurse H helped me up and held me steady from behind by each upper arm as she walked me back to the pre-op/post-op room. I sat in the big armchair and she wrapped me up in one of those flannel blanket sheet things. Nurse P brought in a tray of tea, coffee for Hubby, and plain biscuits. The embryologist popped in to say there were a total of 5 high quality eggs retrieved. Dr G came in on a couple of occasions to check on me. Two nurses and the doc all explained on separate occasions how to use the progesterone suppositories which I have take for 5 days at least! Eew!

Oh, the embryologist wrote her direct dial number down as I have to call her at 10am tomorrow (Sat) morning to learn how many have fertilized.

She will also call us on Sunday to advise whether a day 3 or day 5 embryo transfer will be best. Looks like we will be back in Hamilton on Monday or Wednesday!

We waited about an hour then I was awake enough to leave and we went to get lunch at our favorite kitchen. I picked up the prescription for codeine and then we set off home. I took another 2 codeine tablets after the one at the clinic, but the ride home was fairly loopy and dozy, although we were both pretty happy about how well things went.

After the clinic meds and the initial Codeine wore off I got some sharp stabby cramps so took another tab. I have had mild to moderate cramps for the rest of the day, although not too bad. I can walk carefully but no long distances - by which I mean walking from the house to the car is plenty!

It was great to get home and see the pets. My friends and family were all texting me supportive texts, and after a yummy dinner cooked by Hubby, he dropped me around to my parents and my Mum cut my hair for me! Win!

Please cross your fingers, wish me luck, say a little something, or think a happy thought for good news from the embryologist tomorrow! Thank you! :D

My Pump Start Experience - Part 1

I officially became an insulin pumper on 18th September 2013, at 10.19am.

I really wanted to write down what it's like to go on an insulin pump for the first time while it's all still fresh in my mind, so that I have a good record and so I can share my experiences with others online. Although I've seen plenty of blogs written by pumpers, I haven't stumbled across many "pump start" posts that aren't kids on pumps - and I'm a T1D 25+ yrs!

Because there is so much to tell you all, and I am so very tired at present, I've decided to break the writing of this post into a couple of parts. So please follow along!

As yet... still unnamed. Thoughts? "My Pump" is a little boring!

My pump is a sparkly new pink Animas Vibe. Since I am in New Zealand, I was able to apply for - and have received - public funding for this pump valued at NZD $8000. The consumables ~$2000 p/year are also funded, and my first approval is valid for 9 months. I have to reapply after that and so long as I behave myself and show I am making improvements to my health and keeping my HbA1c below 60(?) mmol then I should be fine.

It took several months from the time I made the decision to email my endo and say "Hey, I want to go on a pump! Can you write my application letter?" to actually being approved, to organising meetings with the two pump reps and then coordinating with my Diabetes Nurse Educator to book in the pump start. Which was a bit of a struggle.

But I'm here now, and it's going superbly well. I am completely exhausted, these last 3 days have been incredibly intense, but I think it is going to be a GOOD THING for me :)

My thoughts before...

When I first thought about getting a pump, about 10 years ago, I didn't know much about them. I was scared of the idea of being tethered to something all the time, and I figured that since they weren't funded (then), that I would just have to do my best to emulate a pump with injections. I tried this as best I could, by using Lantus and Humalog, and doing smaller doses throughout the day. I tried to emulate a combo/square bolus by splitting my bolus injection for large meals. I used two apps by FridayForward (I credit them with a 2% drop in my HbA1c) which I heartily recommend as they taught me about I:C ratios, ISF, and blood glucose targets. I last did diabetes education when I was 5. That is 26 years ago!! So I had just been coasting along, doing my thing, but not really keeping up with technology or best practice for diabetes management. So once I got the wake up call from my new Endo that what I thought was good control was in fact, quite erratic and full of fluctuations, I decided to do something about it. I am not sure that any diabetes management would work without that internal motivation, cos every method takes lots of work.

I found Kerri Sparling's blog, sixuntilme, and I pored over the archives there. Suddenly, an insulin pump seemed desirable again, and her writing and videos showed me how a confident successful woman could handle diabetes with conviction. I explored further, finding TuDiabetes and the massive collection of wonderful diabetics online who are all asking questions, sharing, and teaching. My diabetes education was online, it was self-taught, and it was at my own pace. If I saw people talking about "IOB" in a post, I would take initiative and go find out what it was, then see if I could apply that to my own situation with MDI. Gradually, I found the online support network that I had been missing during my teens. I did not knowingly encounter another T1D after I attended my last diabetic camp at about age 12, and I didn't stay in contact with any of the kids as I was too young to realise how important they might be to me later. I felt that diabetes was my thing, it was personal to me, and it made me special. I was the only one who had it. Very surprisingly, I never had any real rebellion against diabetes and my self-management. I just had a whole lot of very out-dated learning that I still trusted in, and being reluctant to change, my new Endo and Diabetes Nurse Educator (DNE) had a bit of a battle convincing me otherwise.

In more recent years, I have been much more vocal about my diabetes. I have become more confident as a person; I graduated, got a job, was made redundant, found a wonderful new job, I broke my back twice, I got married, we decided to start a family, I have teenage step-kids, I started blogging and sharing my story about T1D and infertility. Lot's of stuff, you know: life.

My Endo saw the work I was doing, but would always tell me he had no ideas about what was causing my horrendous fluctuations in blood glucose levels. I was testing 8+ times per day, on a split dose of Lantus (9am, 8pm) with 5+ Humalog injections (I:C 1:8am, 1:10lunch, 1:12dinner, 1:14supper). He wrote me blood tests for everything under the sun, trying to find the magical missing element which was causing all the trouble. But we never found anything.

This. OMG. Go get some and put it in your mouthparts NOW!

In the lead up to the pump start day, I was tense and nervous and pretty useless: I had trouble concentrating, I was getting itchy excema on my back, and my face was trying it's best to break-out. I may have eaten a whole lot of comfort chocolate. Although my logical brain knew that there would be nurses and doctors and husbands to look after me, I was terrified of...something. Most of the time I was ludicrously happy that I was finally going to get to try a pump. And stupendously ridiculously deliriously happy that I was getting a CGM (bought by my wonderful Dad xox). I tried to articulate this strange dichotomy of feelings to my husband, my friend at work, and my Mum, but I could never get them to understand how I felt.

Since we are about to start our first round of IVF in October (less than a month, now), I had this added pressure to have the pump work well. The whole reason and motivation for actually getting off my arse and doing this work to switch to the pump was to prepare for any potential pregnancy. A diabetic friend of mine had been on MDI and when she finally got pregnant and wanted to go on the pump, she was too sick to do so. I knew I had to get this show on the road. And what's more, it seemed that the pump and CGM was waaaaaaaay more complex than the IVF stuff. There, the fertility doctors are in control (kind of). They decide the dosages and everything has a fixed time span. But with the pump I knew I would be doing 2 days training then be trying to do it on my own. It seemed like a much more mammoth task than contemplating IVF. I guess it's just due to the fact that I can be a control freak, and the thought of being out of control with my diabetes didn't exactly give me warm fuzzies.

So, I spent the time organising things. This was partly purely practical, to be ready. But also to fill my time and stop my stupid brain from going into a nervous meltdown of anxiety. Which I did at least twice.

A diabetic from the South Island (Hi S!) made contact with me via email, and it was wonderful to have someone experiencing the same things. I also watched a lot of videos about inserting sites, changing cartridges, and most important: where to wear the pump!? Two nights before pump start I royally freaked out about that, since I decided I only had one pair of pants that would be strong enough to support the weight of the pump. I wear a lot of dresses, and after watching some videos by Candace from Sweetful Stuff and Diabetic Danica, I took action and planned what I could do with my wardrobe.

I spent a lot of time thinking about how it would feel to wear a pump. Would it hurt? Would I be able to do things? What would it be like to shower with things stuck to me? I had these questions so I read forums and blogs to get answers. I stuck a band-aid to my tummy for a couple of days to gauge what it might feel like, and when I did an injection with my pen, I held the needle under the surface (quite still) for half a minute and decided that I couldn't actually feel it at all. Only the sharp bit hurts as it goes through the nerves at the surface of the skin. Ok, it should be fine, I decided.

An impressive big box of stuff. Note: always take the time to look like a suspicious patient and CHECK the box against the script! Bits were missing causing 2 additional pharmacy trips :/

Animas Vibe with cartridges back left and Inset 30 infusion sites and lines back right.

My pump arrived, and the consumables. The folks at my pharmacy had never processed a pump script before so they were really intrigued by it all. I think that pharmacy became my second home this week! lol :P  Then my Dad bought the CGM and that arrived. Soon I had boxes and boxes of stuff covering the lounge room floor. I had read some of the Animas manual online, so decided not to freak myself out by reading the printed one prior to the training. The Dexcom came with a DVD, so I took it round to my parents place and Dad and I watched it together. It was quite tedious, but later I found it so useful as preparation.

Being in contact with my pump rep and asking questions was really helpful, and she made me feel a lot calmer about things, like I would be supported throughout.

Oh, and I had a birthday in amongst all that too!

From my Sweet Husband! Aww!

Look out for my next post: "The pump start"

Animas rep visit - insulin pump

A couple of bits of news:

• met with the rep from Animas today and looked at the Animas Vibe insulin pump and the Dexcom CGM system.
• an update on where we're at with the IVF: hooray! We have been able to switch to another doctor!

So, the exciting news first: I got to hold my first insulin pump today. Sounds silly I know, but I have seen so many pictures and heard so many people talking about them online that to actually get to hold and play with one was a big thing for me. It made it more real.

The rep was really helpful and met with my and Hubby just over lunchtime. She asked me how much I knew about basal and bolus insulin, just to get to know the level of my knowledge. Then, in the hospital cafeteria (I know! I would have preferred somewhere a little more private too!) she opened her kit of demo pumps and showed me how they work.

Since I am VERY interested in getting the CGM (continuous glucose monitor) too, I asked to see those as well. The Dexcom system looks great and I am very keen to try it out. In fact, I was offered a one-month trial to see if I like it. Just have to buy a box of four sensors ($125 p/sensor) and they lend me the transmitter and receiver. I want to do this and see if I like the Dexcom receiver enough to buy the standalone unit too.

The Animas Vibe insulin pump itself looks like a good option with many features that I like. It's waterproof, has small dosing increments, and a high-contrast colour screen. The screen is clear but it's not always immediately intuitive so I think that would just take some practice to get used to. The Vibe pump acts as the receiver to the Dexcom system, although it has slightly older algorithms compared to the Dexcom receiver.

Unfortunately, nothing about the Dexcom is funded, although the Animas rep suggested that "they" (govt, I presume) are looking at funding them in the future for a select group. When I asked if that select group was likely to be people already using the Dexcom CGM, she replied yes. So that is something positive to look forward to. The receiver and transmitter each cost just shy of NZ $1000 each, plus the monthly running cost for full time wear of about $500. Whew. Not cheap, but don't have to wear it all the time. At one sensor lasting 7 days, that's $17.90 per day. Ridiculously expensive, anyway you look at it. But I figure I want to have access to this level of sophisticated technology to better my health in the lead up to IVF.

My Diabetes Nurse Educator (DNE) stopped by and said she wants me to meet with the Medtronic rep also, which I think is a good idea before committing to something so major. I think that is next Monday???

I asked my DNE how long it would take before a prescription could be written for my pump, and even though I have an appointment to see my Endo towards the end of this month she said I shouldn't have to wait that long since I already have approval for funding. She is just interested to get a couple of people into pump training (2 x half days) at the same time for efficiency's sake. Fair enough. But so much waiting. I wanted to sign up for a dexcom trial right away! lol.

The IVF stuff. Right so we got a letter saying we have a Pre-IVF appointment and we needed to confirm said appointment. It didn't really say anything about what would be covered or even who it was with. So I rang them up and said, can I change it from a Wednesday to a Friday? Yes. What is it about and can we do it via Skype? No, there may be a ultrasound scan involved, and you will be doing the plan for IVF. Can we switch doctors? Umm, can I call you back?

We wanted to switch from Dr R (who has been nothing but bad news, I'm sure she's a nice person but treatment-wise, not my favourite person. I just don't have faith in her) to Dr S (who performed the successful sperm retrieval without Hubby feeling any dramatic emergency-room level pain!!!). The receptionist wanted to know why. I just said that we had had several poor experiences with Dr R, and a very good experience with Dr S. She said that Dr S was on leave at the time we needed out appointment, and the next one for him was about a whole month later.

She called back again, after working her magic where she had managed to scored us a Friday appointment with Dr S the week we needed it! Wahoo! I was just so happy!

So gotta go and have the spiel again from anther doctor, and I hope this transition will be permanent. Dr S gives us both a feeling of confidence and control that we weren't getting from Dr R.

Good things happening :)

Insulin Pump Application

Today I met with my diabetes endocrinologist to talk about getting a pump. Short story is that is is a GO! He has to put in a special authority application form from Pharmac so he'll get that started.

I sent him a bunch of my blood sugar details and graphs to use as supporting documentation, to support my application. In his words "it goes before a panel of wise men" who decide whether to accept or decline the application. Cross fingers it will be accepted. Endo says it should be accepted, as I have so many hypos.

My diabetes nurse educator popped in and said that she agrees: if I am to change to a pump then it's best to do it before I'm pregnant, especially if I get morning sickness. (Note: I popped round to my parent's house to have a cuppa tea with my Mum. She told me that she didn't get any nausea, and she doesn't think her mother did either. So that bodes well! Another diabetic friend has recently had her first baby and she got ridiculously ill with hyperemesis gravidarum!)

As I was leaving, I asked about whether the CGM part of the pump is funded. Turns out no, it's not. I kind of expected that, but if it's not too expensive then I would still be keen to try. It would be a real stretch financially for us to do this, but it could give some real insights into my "pattern-less" diabetes.

I also got my most recent lab results, as I went to visit the vampires on Monday. As per normal, my kidneys are still spilling protein. They have been doing this consistently for over 15 years now. I had a kidney biopsy around the time they first picked this anomaly up, and it was inconclusive. I have been on Lisinopril (an ACE inhibitor) but had naughtily taken myself off it as I have very low blood pressure and it was making me too spinny. Anyway, my endo told me today that he doesn't want me on the ACE inhibitor while trying to get pregnant.

HbA1c results: 42 mmol/mol = 6.0%

My graph from TuAnalyze. This is my lowest HbA1c ever. It's kind of scary.

This converter is available at http://www.diabetes.co.uk/hba1c-units-converter.html

Although a low HbA1c is supposedly good for reducing risk for complications, the advice I was given today was to raise my result from 42 up to 52 by my next appointment in October sometime. I was told to stop being so tough on my high blood sugars, and that I would need to run higher for a time to get rid of some of my hypo-unawareness.

Thing is, I feel fine. Sure, I am having a few hypos a week, but that is normal for me. I've been like this for years. I don't currently live in fear of hypos, and I feel comfortable with my management of BG levels. In fact, I have in the last couple of days been feeling rather proud of the fact that I've been staying in the black! (i.e. not in the red=high or blue=low)

Here are some pretty graphs to help explain:

Diabetes Diary App: average 24hrs for my past 7 days

Diabetes Diary App: Each vertical stripe is a whole day. This is my May 2013 so far. Check out 16, 17, 18! Woo!

Diabetes Diary: some details covering my past week, and all of May. May target rate is 8.0 mmol/L

Diabetes Diary: I record my blood sugars into different time slots, so I can check pre- and post-prandial results. All in the black on right hand column. FIRST time that has ever happened. I must say it feels good and healthy.

Now for the slightly boring and ranty aspect of this post: I have just about had it up to here (hold hand up to her neck) with medical receptionist-types.

In the past month I have had 3 unacceptable encounters. The first was with my GPs nurse-receptionist, who doesn't know her elbow from her Pharmac schedule! When I went to get a prescription for test strips, she wrote it for 4 strips a day. As if I was a regular old Type 2 diabetic. This is the same nurse-receptionist who is supposed to have done a bunch of additional diabetes training. I didn't spot the error and it was seen by my (lovely, kind, understanding, accommodating) pharmacist. I went back to see her, and said I needed more like 14 or more strips a day. She said, "well, I can write it for ten, but you won't get it." What?! I know what I am legally entitled to, and I can have as many strips as I want. It's funny, the test strips are the only part of diabetes kit that is so heavily controlled, and it's so hard to get. It's way easier to get lots of insulin, which always surprises me that the strict controls are on the strips and not the insulin, as I know which one could do a lot more damage! I suppose it's a money issue. Test strips are about $2 a pop. Anyway, where was I. Yes, so she thinks I won't get 10 strips a day. I take it and run back to the pharmacy where the pharmacist and I agree that this still isn't enough. He offers to call her, and he explains that yes I am allowed more strips. I think I ended up getting the prescription changed to 12 a day. I said "14" multiple times but they just don't listen! That nurse has had the grumps with me ever since, and on Monday when I went to pick up my lab-test forms she wouldn't acknowledge me :(

Second bad customer service experience came when I was waiting for my appointment with endo to arrive in the post. I was checking the letterbox diligently twice a day for that little appointment card (yes, the District Health Boards here still insist on using snail mail. I. Can't. Believe. They. Don't. Use. Email!!!!) So I teach at the local tertiary institute, and was right in the middle of class. I don't normally get many calls so my phone was still on, and it rang. I recognised the hospital number and guessed the content of the call pretty accurately before even answering. The diabetes clinic receptionist "Justine" literally berated me for missing my endo appointment. Apparently I was about to be marked as "did not attend" and referred back to my GP! For type 1 diabetes! You've got to be kidding me! She suggested that I was a new patient (umm, no, had this for 25 years now!) and that I had somehow done this deliberately. I had to laugh and chuckle, while holding back my rage. I explained calmly and carefully that I am an existing patient, I have been checking my letterbox and expecting this appointment. Her response? A two parter: "You will have to take that up with the post office," and "I've been away on leave so someone else has been doing my job." Well. Don't jump to blaming the patient if your department failed to send the bloody card out!

Third bad experience happened today. I was nervous about going to this appointment with the endo as for me, I know I don't deal well with change. I also know that saying yes to a pump is making a big commitment to my future care and what will hopefully be happening later this year. Pregnancy. IVF. Change. So yes, I was a bit edgy.

Our hospital where the endo and nurse-educator appointments for diabetes are held has split it's outpatients department into two parts, and the diabetes clinic is in another part above the maternity wing (how ironic!). My endo appointment have been held in medical outpatients and oncology. Let me tell you there is nothing more depressing than sitting in a waiting room with a bunch of oncology patients :( Anyway so I rock up to the counter with my appointment card and the receptionist greets me by name. I give her the card. She starts to wave me to go down to the diabetes clinic above maternity. I say, no, this is for Dr Endo, not nurse educator (they are married, so have the same name. Also, there were two stickers for an appointment for each of them on the card... confusing I know). "No, no," she says. "This card is for the diabetes clinic, and this is the medical clinic. You would never have seen Dr Endo here. See, your card is yellow. Our cards are green." I was gob-smacked. I have been having a clinic in this location for like 10 years now. And she knows me. And she just told me I've never had an appointment here. "You must be a new patient?" NO NO NO 25 years what IS it with you people????? I asked, is he currently above maternity? "lskdjfslkdfjdsklfjds" = not a straight answer, and repetition of previous two points. I said a curt thank you and stomped out, much to the amusement of the waiting oncology patients.

It got even better, cos I had to sprint-walk to meet my appointment time. I climbed up the stairs and met the diabetes clinic receptionist. I was holding my yellow card. I asked if Dr Endo was up here? The receptionist looked confused. She came out from behind the desk to talk to me. Oh god, I thought, does no one know where my appointment is? Turns out she thought I was a doctor or a nurse, the way I asked for him! lol - at least she was good natured.

But, sigh. Can the receptionists please please please not be so goddamn rude and insulting? A simple "I don't know, let me check" would have solved things for the test strips issue. A simple re-send of a new appointment and/or a POLITE phone call would have sufficed for the supposed-missed appointment debacle. And the phrase "Oh, hi Kaitake, I see you have a yellow card this time. That's fine. Dr Endo is currently located down in the clinic above maternity" NOT: you are stupid! You are a new patient? And my favourite "You have never been here!"

I've decided to get an insulin pump

This is the biggest decision I have made since becoming a diabetic 25 years ago.

I have been on multiple daily injections (MDI) since I was 5 and currently I use Humalog and Lantus spread over at least 5 injections a day.

- - - - -

Once, for shits and giggles, I calculated how big of a tattoo I could have gotten if, instead of using all my needle stabs and finger pricks and blood draws for treating diabetes I used them all to put ink in my skin. Turns out that I could have gotten a large full-back tattoo! But I digress...


- - - - -


My HbA1c is good, although I have some almighty horrid fluctuations in my blood sugars and I do get quite a few lows. Yesterday I had 4 lows (under 4.3 mmol/L). And that is of course coupled with some nasty highs too, although I have been working very hard to narrow the range of blood sugar fluctuations I just can't seem to tame them properly.

So why am I making the change? Well there are several important reasons. Yes, even more compelling than the reasons above. I do love a good bullet point so here are some I fashioned jsut for you"

• See this previous post. Yes, we have sperm-on-ice, so that means that IVF is a GO! All going according to plan this will happen in October sometime. Finally.
• Being Type 1 Diabetic means I can do more than just snack on prenatal vitamins, folic acid, vitamin D, and healthy fruits'n'veg. I can also work really hard to get my blood sugar control as, um... controlled as possible. This means maintaining a low HbA1c while stabilising the fluctuations and lowering my range of blood sugar results overall. So no pressure.
• An insulin pump is what I see as the best option for achieving these lofty goals prior to pregnancy. It has also been recommended to me by my endocrinologist, although definitely not as the only option.
• I want to do it before getting into the mix of IVF treatment + potential pregnancy. I don't know how I will respond to an insulin pump and I want as much time as possible to get to know this new treatment method.
• I should now qualify* for a fully funded Animas Vibe courtesy of Pharmac. Last August they changed their funding of insulin pumps so that if you meet certain criteria then you can apply to have one. (* My endo has yet to complete the special authority form, so it's not a done deal yet. In fact, I still have to meet with my endo and my diabetes nurse educator soon to discuss this plan o' mine.)
• I emailed my endo and DNE on the weekend to wave this idea at them, and they seemed to think it was a good plan and that I should qualify. I'm hoping to get appointment times to see both of them about it soon.
• We have spent so much time and effort pursuing the idea of IVF and having a child that it only makes sense to do everything I can to support this process. If that means chomping on vitamins, wearing an insulin pump and completely changing the way I manage my diabetes, I think it's worth giving it a go.
• Continuous glucose monitoring! OMG I have wanted one of these for like, ever, but they haven't been available in NZ I don't think. But now with the Animas Vibe being funded it's quite fortuitous as it happens to be Dexcom CGM enabled. Now I've had a pretty good sniff around online and found that the Dexcom G4 CGM is now available in NZ. Of course there is no pricing but the Animas Vibe acts as the receiver and screen to display the CGM data. So perhaps, without needing to purchase a reciever that will make the combined cost of transmitter and sensors affordable? Maybe? I will have to wait and talk to my DNE as she will know :)

So it's been a weekend full of progress and decisions :)

Why I'm so happy to have mens underwear in my handbag

Today we have had our first successful experience with fertility treatments: the second surgical sperm retrieval procedure was a success!!! :) Hooray!

It was such a dramatically different experience from last time; just about everything was different and the positive outcome feels like the icing on the cake.

How it went:

We drove up to Hamilton (3.5hrs) yesterday afternoon and checked into our motel. Went and got some dinner, bought some books, and then watched some crappy movies on telly back at the motel.

Since we had got some Valium for Hubby, he took that and was snoring pretty soon. I had a lot of trouble getting to sleep, and would wake up heaps during the night. Woke up feeling like I'd been jogging all night, whilst eating soap (you know that taste? Yeah, that's sleepless night mouth taste for me!)

I was afraid that Hubby might not get up to the alarm in the morning with the extra medicine, so I set me alarm for 6.45 and since I was already awake, I got the first shower! Ha!

Watched breakfast news on telly, I ate some toast and Hubby made baleful-eyes at me since he was nil-by-mouth until after the procedure.

We packed up the room and loaded the car. I signed out of the motel and we headed over to the clinic.

This time when we arrived the clinic was alive with people (last time we got there before the staff!) and we signed in and went to the waiting room. Very quickly we were called back through to the yellow pre-op room with the lounge chair in it. We met the nurse who would be looking after us, Nurse H.

Then began the parade of introductions. First off Nurse H wanted the pre-op health questionnaire completed (last time we had all this done perfectly before we got there, this time? Meh! If they want it they will ask!). Then she did Hubby's blood pressure (188/something) so definitely high.

The embryologist, T, came and introduced herself and started explaining how she would be behind the little pop-hole in the room with the micro-scope. We told her we knew that and this was our second time... she hadn't read our chart! Not promising...

Next came the person who made the whole event possible: the anaesthetist, K. She was super cute and amazing, and instantly put both of us at ease. She had a great sense of humour (talked about propofol being "the Michael Jackson drug") and a relaxed attitude - and hey, you want the one with the drugs to be cruisy, right? :) Once Hubby relaxed I did too, and after she left we even laughed a bit!

Hubby had to change into the glamorous hospital moomoo:

Fortunately, Hubby's gown wasn't open at the back! Image from: https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDJ1L1McEz83m-HvhjyrtQ9VtROnwZ7VKSmQLWGCvUCE61EDSVZW95m8iDf2M2YNADIXMRXImutO1Tz2Lk-GvxZKmhkxphoiIilm4ZK0QR_cTkdIpAq8w3OFV_Spo4YQXfT_wm-DIMNE-J/s1600/HospitalGown.jpg

The nurse came back and put a tray full of stuff to put the IV line in on the table, and went out again.

Then the RE arrived. Now, up until this point, we didn't actually know who would be performing this operation. We knew with about 90% certainty that it wouldn't be our original RE, Dr R, since when Hubby took the call for the appointment booking, the nurse had told him that Dr R wouldn't be doing it. So we thought, well then, it must be someone who won't make such a hash of it, surely!

And we were right. We got Dr S, the senior doctor at the Hamildog clinic! He was confident and his manner and calmness relaxed us greatly. Instead of going straight to TESE (biopsy, more invasive, incision, stitches etc), he said he would try both PESA (small needle aspiration from the epididymis) and TESA (large needle aspiration directly from the teste) first. He reasoned that since Hubby would be sedated, there would be no problem moving from one technique to another until we got some sperm, and this way he may even be able to get a sample without doing the biosy altogether.

The anaesthesiologist came back and said that she wouldn't insert the IV line until Hubby had walked into the OR and gotten on the table, in case he fainted. I asked if I could come too, and did Hubby want me to? Yes? Ok. So through we all went.

It felt a bit surreal, here were were again, people in the same places as last time. Except this time we had K the anaesthetist sitting on Hubby's left, and different people in the role of Doctor, nurse, and embryologist. Others in the room were: Hubby, myself, and other nurse (same as last time for surgery assistance).

K got the IV line in very quickly, and Dr S prepped "the area" with drapes and sterile swab. Hubby and I joked about no matter how much they warm that liquid up, you can never get used to that feeling!

I helped put on the blood pressure cuff on his right arm, and the surgery assistance nurse worked to get all the proper needles ready for the PESA, TESA, TESE procedures. Nurse H coordinated with the embryologist through the pop hatch to get dishes (petri dishes!) ready for the samples.

K started the sedation and Hubby's eyelids started to flutter. He was trying very hard to tell me something about getting the camera, I think, to take a photo of the procedure. But he was out like a light and snoring gently in no time. I rubbed his shoulder and told him I loved him as he went to sleep, then warned the doctors that they were about to be treated to some snoring! They assured me they were used to it.

First try was the PESA, with the smallest needle into the left side. This produced a small drop of fluid and T the embryologist found I non-motile sperm in it. Dr S proclaimed that this meant there were in the right spot, but would have to look further with TESA as the epididymis would probably not provide very much.

Next up was TESA, with the wider-gauge needle into the left teste. Very soon (and without half as much effort as last time! No squeezing, no worried looks! So little blood!) Dr S had the first piece of tissue. I could see if from where I was sitting as it was transferred into the petri dish. Nurse H passed it through the hatch, and T found 3 sperm in it, although she must have later complained that the tubules (where the developing sperm live) were very thin, since Dr S told her that there were more samples coming.

A butterfly needle and syringe, used for TESA. Image from: http://www.ferretlove.co.uk/sub-q5-.jpg

Dr S went in with the TESA needle again and got some more tissue. When the needle came out it obviously had a sample on the end of it, and when they flushed air through the line, another sample came out! That's right! Another 2! He said that this amount of tissue was equivalent to what we could expect from an open biopsy anyway, and since there had been a total of 4 sperm found already he was happy to leave things at that. Hubby would not need the biopsy! I had to ask and check again!


Twice Hubby began to rouse but K just gave him some more sedative each time. The first time he tried to lift his head up a little bit and the second time was when is right arm fell off the side of the bed (!) - yes I know. The same bed, much, much too small for an adult man! Aside: last time the RE partially blamed the difficulty of the procedure on Hubby being overweight. Well, firstly, way to lay the guilt on Dr R! Good God woman, don't you have any compassion? And secondly, Hubby has worked really hard and has lost 10kgs in 3 months. So there!

The snoring. Well, yes, there was some snoring happening, and at one point I recognised the breath-motions that indicate sleep apnea to me. Normally I would roll him over or give him an elbow in the ribs to get him to take a proper breath. But of course, I couldn't really wiggle him during surgery! So I just asked them all if his breathing was ok, and Dr S assured by that his blood-oxygen was great, and K said that the "abdominal breathing" looked strange but that is was just deep sleeping breathing. I wasn't sure, mainly because he had an oxygen mask on his face and whereas before it had been fogging up with each exhale, now there was no fog at all. K lifted his chin with her finger and his airway opened and his took a great noisy snore, with fog, much to my relief. I must admit I didn't believe them when they said his breathing was fine, but it was resolved quickly and they listened to me and checked his vital signs so it was all good. I just know his snores so much better! lol!

To recap so far: 1 sperm non-motile found during PESA, 3 sperm found during TESA 1, 2 more samples received but not counted yet from TESA 2.

Once Dr S indicated that the procedure was over, things went very quickly. I was stunned (hard to explain the feeling. It wasn't relief, it wasn't happy, it was still so surreal that it was over and some had been found, but mixed with a very strong concern about how Hubby would feel upon recovery.

What I didn't expect was for him to come around quite so quickly. He started to wake, and I made sure to tell him that is was over, that he was very brave, and that is was a success. He asked "It's over already?" "Yes," I said. "Haha!" he laughed, which caused everyone in the OR to smile. He made other noises about not remembering anything once K put the IV line in, but he was very focused when Dr S leaned in and told him that the procedure was a success and we had found sperm. Hubby was still lying down, but moved to shake his hand and say thank you. Goodness, so polite and collected and still pretty much out of it! :)

Nurse H encouraged Hubby to sit up carefully and swing his legs over the bed. I pointed out the hatch to the lab, where we could see the embryologist working over several pinkly-tinted tiny petri dishes with her microscope. He commented that his "boys" were all in there now, and that they better do well. Nurse H, K, and the other nurse all made noise about them being both boys and girls, since he gets to decide! Cute! It was a very friendly and happy atmosphere. Nurse H got him standing up carefully, and then we all walked the short passage back to the pre-op / recovery room.

Hubby must have asked me how it went upwards of 7 times, and I remembered that one of the effects of the sedation was that he would have some confusion and loss of memory for a while. I joked with him that it was like talking to a goldfish. He told me it was great to get good news over and over because each time was genuinely the first time he'd heard it!

At various times an ice-pack, tea, and biscuits arrived. Hubby was instructed to get into his tight "supportive" underwear soon, and put the ice-pack on the op-site. Of course, he was grinning and forgetting and I was kissing and hugging him too much and it was hard to get him to actually put pants on. That is where the title of this post comes in. He'd brought the wrong undies, so I dashed down to the car and grabbed the tighties plus the tramadol = first lot of undies in the handbag! He got changed, drank tea, we took photos (sorry, not going to post those here, they're just for us), and I told The Story Of How The Sperm Were Found several more times.

Nurse H came back and took a blood pressure reading, removed the cannula, and read out the post-op instructions. All in all the procedure itself took about 15 - 20mins, and we were able to walk out and go find a cafe to fill up a ravenous Husband at about 10am.

He has minimal bruising, a small amount of swelling, and with tramadol, neurofen and panadol has been pain-free the rest of the day.

UPDATE: the embryologist called at 3.30pm and told Hubby that they managed to get 10 straws frozen! One was thawed and it looked amazing, apparently "couldn't be better"! She said it was enough for 5 x cycles! Wow! We did a verse of this song to celebrate:

So, it has been a very good day!

I sent the Hamilton FA Clinic an email...

...take this, you b*tch!

Hi [Clinic Manager Lady],

Thank you for reviewing our case. As you can guess, this is not the result we were hoping for.

When we met with Dr R and were scored for access to funding for fertility treatment, I asked for a copy of the form she used to work out our score. She refused to give me a copy. I believe that this is not in accordance with my rights as a patient.

I am now requesting that you send me a copy of the CPAC form used at our consultation, and all other case notes you have for us. ALL case notes please. I am interested to know how we came to score a 60 on the CPAC form, and how Dr R came to that particular number, as she could not explain it very well at our consult.

Please post me a copy, or scan and email me a copy of all case notes.

My address is...

My email address is...

Furthermore, I would like to let you know that I do not feel you have taken my concerns into account or even given me a chance to explain them properly. I would like to submit a formal complaint. I shall send this to you via email over the coming week, as time permits.

I look forward to hearing from you,

Regards,

[Kaitake]

Oh, yeah, and I cc'd it to my husband, the MP, my diabetes endocrinologist (who used to be a fertility endo back in the USA), and the lovely lady at the Health and Diasability Commission who has offered to help.

So yeah, take that, you sucky Hamilton Clinic Fertility Associates Manager!!

p.s. I'm removing comment moderation, as a trial, because I figure you're all lovely people and I would like to make things easier for you :) Let me know if you like!

p.p.s. spent a lovely day today with hubby (it's a Saturday) shopping this morning, having lunch with my in-laws, walking in the bush, and then hubby cooked a fantastic vege mousaka! Nom!

Tough week

I didn't realize how tiring his week had been until hubby pointed it out to me.

Apart from the obvious stress of having a sick husband (kidney stones) who is in intense pain, this week also saw our office in the mad rush that happens the week before semester starts. Oh my. Tonnes of paperwork and course documentation to get ready for the new and returning students. An orientation week to plan. Lesson plans to write. Oh yeah, this was also the first week I was studying on my tertiary teaching diploma - I have homework! Heavens! I haven't had homework to do for nearly a decade! :P

Our institute also hosted many guest speakers on Wednesday for a academic staff training day, which was interesting and intense, but cut into valuable class prep time.

I tried to organize to get a GP appointment with hubby, but it didn't work out.

So yesterday I got busy on the phone and called hubby's GP (who I am strongly considering switching to, since my GP of 28 years has recently decided to turn into an inconsiderate a-hole) and I made an appointment for next week so I can meet the hubby's GP.

My diabetes endocrinologist emailed back saying he had phoned the same FA Hamilton clinic manager who I spoke to. He didn't get an overly positive response, but it's still fantastic to have a doc willing to help out like this. He asked if I'd been to see the local MP yet, so I stopped procrastinating and booked a time to meet with him too.

Next week will be busy too.

Perhaps this explains why I have bought 3 pairs of shoes in 2 weeks! Ha! All completely necessary of course! Lol.


- Posted using BlogPress from my iPhone

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 :)

An early Christmas present

...or My Cat is a Reindeer!

Chomsky the Cat, fond of cornflakes and sparrows.

Well work has finished for me this year, and I've been stuck into late spring-cleaning the house and Christmas shopping. Oh my! Town is hectic! But I have finally finished, just the groceries to go.

And now for something wonderful. Yes, even more wonderful than my cat doing his reindeer impression. My endo did as promised, and wrote a letter:

A letter from my Endo, cc'd to the fertility clinic!

Typed version:

Dear Colleagues [Fertility Clinic, GP, Diabetes Nurse Educator, Patient],


I saw [Kaitake] for her brittle Type I diabetes. Since the last time I saw her she has changed jobs and initially work has been a little more unpredictable. She is trying to get very good control because she is wanting a pregnancy. Today her A1c is 6.6% which is the lowest she has ever had and is actually lower than it needs to be. She is having still unexplainable variation but no blood sugars below 3 which is a vast improvement for her. She is still going quite high after lunch but seems to be doing much better with carbohydrate counting partly because she has got a calculator to calculate the exact dose of insulin.


There is just an incredible story that she has been turned down for IVF - for which the IVF provider acknowledges they would otherwise be the ideal candidates. However, they haven't "waited long enough" - they have had unprotected intercourse for six years but the mandatory waiting rules only start when you have your first medical appointment with IVF provider. We are going to search her diabetes records to see if it was ever written down. There is also a delay because her husband had a vasectomy in his previous relationship. A vasectomy has got to be considered a good thing for society and yet now the couple is being punished for having done that. All of this is just frighteningly unacceptable and ignores the biology, sociology, psychology of IVF. I suggested that she go see her Member of Parliament. The other thing that is illogical and dangerous about this apparently official rule of having to wait longer for IVF treatment is that there will be an increased risk of morbidity and mortality for [Kaitake] and it will increase [the risk of] Down's syndrome in her child. Both of which are just idiotic for society and the patient.


The patient is going to call me if she needs some help reviewing the arguments when she goes to see her member of Parliament and I will call [the Fertility Clinic] myself to see who has written these stupid rules.


Yours sincerely,
[Consultant Endocrinologist]

So that is pretty amazing to have some help, and to know that we're not alone in thinking this whole situation is rather insane.

I am in the process of composing a letter to my Member of Parliament. This is rather a hard thing to do, I'm finding, as I have to explain our situation carefully and fully - yet it is very uncomfortable to have to tell a non-medical person all this stuff. It's rather a curious and embarrassing thing to have to plead with your MP so you can reproduce! But hey, if it works out, it might get us treatment, and save some other couple from going through the wringer. I just hope he can help, I'm just not sure how??

In other good news, I no longer have 2 and a half months unemployment facing me. Yay! I was only on a fixed term teaching contract, and my permanent contract doesn't start until next year (Feb!). My boss wheedled another week out of the HR department, and then the good folks in the staff advisory department have taken me on for 3 weeks as an e-learning consultant and video editor. Cool! I will be the only one in the art department taking only 3 weeks holiday (most of them are taking more like 10 - 12 weeks!!) but I'm fine with that.

What I'm not fine with is the weather. It's only 3 days until Christmas, and the drought we were having has turned into a torrential downpour of the highest order! Seriously, the humidity is sticky and horrid, and everything seems wet. The biscuits (cookies to you folks in the US) are soft, the Christmas gift wrap is damp, my hair has gone mental, and the garden needs weeding - desperately!

Here is a tour of my back garden, taken between rain showers:

I'm so happy I just did the washing!

Not happy about the washing, silly! Happy enough to DO the washing :)

I've just come back from my appointment with my endocrinologist, and the news is all good. My HbA1c is 6.6%, he couldn't believe it. Wanted to know what I was doing different? (Not much, just using the iPhone insulin calculator app, oh, and got a new, less stressful job). Anyway, because I still do get quite a few lows at night, and especially when I wake up, he recommended "backing off a bit". Which I think is a good idea. I will try dropping my evening dose of Lantus by 1 unit for a week, to see if that helps. I tried it for 2 days last week, but stopped because I got a couple of morning highs that I wasn't impressed with. If at first you don't succeed...

I have added this new result to TuAnalyze, even though they don't yet have a map for NZ:

How my HbA1c is tracking. Not too shabby! :)

Now for the bestest bit. Turns out that my endo has worked in the field of fertility before, so when he started asking how the IVF was going, and I told him how we had been denied funding based on a couple of irrational factors, he responded that it was an "irrational for of punishment" being dished out to us. Finally. Someone seems to get it. I can honestly say that I was not expecting him to say that, or to go further and offer to help us with the paper work and the fight for public funding, but he has. And I'm overjoyed. :D  I just couldn't believe it!!

At last some truly positive news. It feels like there is once again light at the end of the tunnel, where I had been coping in a grey-darkness for so many months.

We had a good discussion about how in New Zealand, where everyone is "equal" the cost of a particular health treatment should not matter. And if it does, then the patient should be means-tested for government funding. He noted that we are being unfairly denied public funding due to factors that we have no control over, such as a vasectomy in a previous marriage, kids from a previous marriage - neither of which we as a couple could affect. We also talked about how waiting will actually increase our chances of having a baby with Down's syndrome, or have me as a diabetic mother die during the process. Duh. "From a medical standpoint, waiting makes no sense whatsoever, it only serves as a cruel punishment to you." I agree. And it is good to know there may be some medical justification in not-waiting which could help advance our case.

Oh, he also recommended Hubby and I go make an appointment to see our local Member of Parliament, to let him know how the health system is failing us. Might just do that....

In other news, the semester has finished, and I gave my whole office Whittaker's Sante chocolate bars, and little cards. They have been in a chocolate stupor ever since!

Om nom nom nom!

I now have about 2.5 months of unemployment before my permanent contract with the local college/training institute kicks in. I shall spend the time:

• gardening (ate my first homegrown boysenberry yesterday - summer is here with a vengance (drought)
• building a website for our art department at work (my dept!)
• hunting down freelance jobs (more websites)
• hosting the whole fam-damily for Christmas lunch
• buying pressies
• watching my Hubby fish of the rocks, which I lie by the seaside up the coast with a book - our secret hideaway!
• eating fresh Kahawhai, or Snapper, or whatever is caught.

What are your Christmas Summer/Winter plans?