29w4d Scan and stuff

I am on a two week mid-term break from work at the moment, so no teaching. But there are so many appointments and baby-things to do that it's not exactly a restful time either. I will try and put this down in the right order but things are starting to just become a big ol' blur!

Since my last post the weekend before Easter (when I got sent to labour and delivery for a minor bleed on a Sunday night 13 Apr) I took the Monday off work to rest up and recover, then on Tuesday morning I phoned my diabetes nurse educator (DNE) and told her what had happened and do a pump download. She promptly got me an urgent appointment with both her and my OB for Wed 23 April. She saw that my blood sugar levels were too high (averaging about 10 - 13 mmol/L semi-constantly) and was worried that this may have contributed to the bleed. She also saw that the tests the midwife had taken on Sunday night hadn't been entered in the hospital database and asked me to pop into hospital on my lunch break to re-do tests including a complete blood count and urine test for infections.

The Wednesday appointment was good, if for no other reason that getting two of my 3 medical care team in the same room! The OB took my blood pressure (118/73?? slightly elevated for me) and blood/ox (95% slightly low) the measurements were so out of character for me that the OB tested the machine on himself! That was like the highest BP I've ever had. But I know why... it was raining, I was stressing about my blood sugars and getting to the appointment, and having to reschedule the class I was teaching. Oh, yeah, and I was having another bleed just before leaving campus for the hospital! The OB basically said that since the bleeds were so minor, and apart from slightly elevated white blood cells, and slightly weird BP and blood/ox readings, and slightly raised blood glucose, everything was fine and there was no sign of any definitive problems. He wasn't fussed and put my mind at ease :) saying that some women just have bleeds, and that it could be the placenta previa??

My DNE took me up to her office afterwards, which is just two floors above antenatal clinic, and we went through my blood sugar CGM graphs with a fine tooth comb. I made another bunch of changes, and they seem to have worked out ok. Well, better for now, but things are requiring constant adjustments.

That was the last week of term, and the OB had speculated that it may just all have been caused by stress. An excellent time to have two weeks off!

First week of the hols was supposed to see me have a midwife apt, growth scan, and OB apt.

The appointment with my midwife was supposed to be on Easter Monday 21st April. And I promptly forgot all about it and we went out to have morning tea with friends then have lunch at a cafe instead. I felt VERY guilty when I looked at my phone and saw all these missed messages! Whoops! Brain fade. Got it rescheduled for later in the week.

In the meantime, on Wednesday 23rd April, I had my first growth scan ultrasound which was done at the hospital, and that was followed by another appointment with the OB.

At the growth scan we got to see Tiny Fish looking happy and healthy, with a good heartbeat of 142bpm. Growth sitting at 1417g which places in the 61% percentile. That lines up with what the midwife had measured with the tape measure at previous appointment. Baby was facing towards my spine with head down. Thankfully, we were able to see that the placenta had well and truly moved up and back, right out of the way. No more placenta previa hooray! This means I now have the opportunity to give natural delivery and/or induction a go.

The scan itself was quite quick, and Tiny Fish seemed too big to fit in the picture nicely like had done in the past. And was hiding and squirming about making it nearly impossible to get a nice shot of the head. Here are the pics:

This is, believe it or not, a front-on shot of the head. It is upside down, with the nearly horizontal curved line in bottom-centre of image the top of skull. See the two white horizontal lines on the left of image? They are pointing to Tiny Fish's chin. You can kind of see the right eye socket, and some smudges where nose and mouth are. Tiny Fish was head down way down low, and did NOT want to be photographed thank you!

This one is easier to understand. It is a whopping great foot. See the two little cross-hair markers, those are the heel (top) and toes (bottom) and it is nearly 6cm long! Wow that is big!

The OB appointment was good, and after the Dr talked for a little bit and made happy noises about no more bleeds, that I was looking better, and my blood sugars were now averaging much lower, I made sure to ask a bunch of questions:

• Can I keep my pump and CGM on during labour? Yes, that sounds like a good idea for you to do that.
• Is it possible for me to avoid an induction, as I have read that artificially induced contractions can be much more painful. Plus I don't really want the additional risk of more interventions - specifically a c-section. Yes, if you spontaneously go into labour before 40w, and you are both still healthy then that should be possible. Ideally you would start or be induced between 38 - 40w. But you can't go longer than 40w. That's the max.
• I want to restrict who will have management rights of my diabetes, will that request be respected? Yep we are happy to work with you.
• Can the IV line be placed nice and early in case I need dextrose / glucose? Yes.
• What is causing the nerve pain in my thigh? That's your femoral lateral subcutaneous nerve.
• I had more questions to ask, but silly me didn't actually pull out my phone to look at my list. D'oh. Oh well, next time.

Yes, this post is continuing... feel free to reach for some snacks and refreshments. You deserve some form of chocolatey treat for reading thus far!

Thursday 24th April rolled around and I decided to bake a cake to have ready to come out of the over at just the time when my midwife was due to pop round. What a coincidence! I was thinking that would be a nice touch since I had stood her up on Monday :P

Well, cake was delicious*, but midwife didn't get any of it cos SHE forgot! hahaha We figured that she had been called to a birth as she told me when I rebooked the appointment that that could happen. No drama. More cake for meeeeee! *it had ganache om nom nom.

The step kids came for the weekend and we had some family in from out of town. We went to the 10am ANZAC Day service at the Cenotaph, then took poppies up to Hubby's Grandfather's grave. I Facebooked my midwife and she phoned up terribly apologetic to have missed our apt and we got another one scheduled for tomorrow. Third time's the charm!

Oh, and yesterday I lost my sh*t for the first time in this pregnancy journey. It wasn't a bleed, or blood sugars, or even concerns about whether I will make a good Mum. It wasn't worries about breast-feeding, or how my diabetes will be managed in labour, or what it will be like to leave my job and go on maternity leave. No, all of these things are scary to a certain degree, but have not yet freaked me out.

So what did it?

I feel silly admitting this, but I lost the plot over our earlier purchase of stroller and capsule. See, I was thinking how the capsule didn't have much/any real padding in it and from there it was a short trip to looking at online safety ratings websites and finding that our capsule wasn't listed at all. This did not give me a good feeling and my instinct was that I needed to get a better capsule. The stroller is ok, not great, but I could live with it.

Then things got awfully complex quickly, since that particular model of stroller and capsule are designed to go together, and capsules with higher safety ratings wouldn't fit in the stroller at all. Not even with adaptors. The old capsule we thought had the option of getting a base as the lady at the store we got it from advised us, but when I called the shop they said no, no base to go in the car. Boo. And then I started thinking about how hard the stroller was to fold up. And I wanted to get rid of them and start again. It was a difficult thing to admit because a) I felt stupid b) I felt like I was making a fuss c) the items in question were not broken and would probably be perfectly fine d) Hubby didn't understand, initially, what I was trying to communicate, which upset us both e) I was incredibly confused about what I actually wanted to do to remedy the problem - or even how I defined the problem in the first place.

But once I got my ducks in a row and explained my worries more clearly to Hubby, he was lovely and understood my sometimes awkward feelings-logic.

The end result is that we will look at either selling the current stroller and capsule (about $300 worth) or if we can't then may keep them as spares. I have selected a top-ranking capsule which was an absolute bast4rd to get a stroller to fit it, however I had a ray of sunshine from a local store owner who actually knew what she was talking about. I visited her today and she presented a plan of attack to get the capsule I want with a base that fits in my car (we can hire this for 6 months), with a fantastic new stroller that is easy to fold up. Just waiting on her to order the adaptor and check that the two items will indeed marry-up. Other than that, it looks like a go. So you will get pictures of said stroller etc once it's all done and dusted :)

I know I have been stingy with the belly pics, but it is nearly midnight and I was awake until about 6.30 AM!!! last night (3 x lows, 2 x pee trips + lots of general aches and uncomfortableness) I saw dawn. So I am too tired to take photos right now. I promise to take some more but I will probably just post them to my twitter feed - you can get that over here in my sidebar - - - - - - - - >

Got my HbA1c results in, and even with that spell of higher glucose results, I have dropped ANOTHER mmol/mol:

Don't you dare call me normal.

And now my brain is feeling really scattered, but I will just tack this on the end. I promise, it's the last thing:

I had a bit of a scare on Saturday night when my blood sugar came down from a high to normal reasonably fast, over about 2hrs, and I noticed an anomaly in the vision of my right eye. I was trying to read the fine text on a Beatles album cover that my step-daughter was playing, and I noticed this blurry fizzing shape that was tracking with my vision, just to the right of the centre of focus.

Because I have a Dad who had detatched retinas, and because I am a pregnant Type 1 Diabetic, all these warning signs lit up in neon and screamed OH-MY-GOD-YOUR-VISION-IS-CRAPPING-OUT!!! Followed by a whispered ***don't panic, it's Saturday and no eye place is open now. Just be calm, be calm, and call them on Monday morning***

I called my optometrist first, noting that ironically I have just had my diabetic retinopathy screening within the past 3 weeks and got the all clear. They explained that I needed to see an opthalmologist, and to go via my GP to get a referral. I called the GP's nurse/receptionist and we both agreed that I may be able to phone the opthalmologist directly and get a private appointment quickly. Nope. They were booked up and short staffed and the only was in was for me to go to the GP and get an "acute referral". The nurse phoned me back and said, sorry, you'll have to come in for an appointment. So I did that yesterday (Monday), and the GP had me lay on the bed while he shone the light in my right eye, checking the blood vessels and looking for signs of any pressure or damage. He found none, and declared my eye ball perfect, like that of a 10 year old, and said I didn't need to the urgent appointment since there had been no change in 48hrs. Although he did say to monitor it like a hawk and any change at all I could get the referral letter in a flash. It's still there, but no change so far. I am wondering if I should go back to my optometrist anyway?

So yeah, it's been a busy 3 weeks.

21w3d Midwife appointment and HbA1c

This HbA1c result really blew me away!

Two lots of good news: my HbA1c is the lowest it has ever been. In fact, it's so low that I don't believe it, but when I think of all the hard work I have done working with my Diabetes Nurse Educator and learning about using the advanced pump features, I realise that it is justified. I am so very happy with this number because, unlike the last HbA1c test I had, this one is not caused by masses of low blood sugars. Rather this 5.4% has been achieved by massively reducing the range and fluctuations of my blood glucose results. When I used to get high-symptoms at around 15 - 20 mmol, I now get those symptoms at around 9 - 11 mmol. I have acclimatised to this nice, luscious lower blood glucose range and it genuinely makes me feel better (healthier, clear-headed) when I am sitting in the 5 - 7 mmol range. So that is awesome. I never expected I would be able to achieve this. Trimester two must have something to do with it as well I think, plus I have recently taken up swimming. And of course eating a really healthy diet for the Tiny Fish.

And speaking of Tiny Fish, my midwife visited this morning and in her words I'm "doing awesome." It can't get much better than that. My blood pressure is a lovely 100/60, and Tiny Fish's BPM is around the high 140s still. I am getting a load of movement (read: kicks and thumps. None of this "feels like butterflies" stuff haha) and when I told the midwife that I've woken up a couple of times with a rock-hard belly she said those were classic braxton hicks contractions. Already. With the movement starting at 16w she thinks it might be an indicator for an early arrival.... we shall see. I still haven't gotten the info I want about insulin pump protocols during labour for my hospital, but she promised to follow that up for me.

Other medical things on the to-do list in the near future include:

• another midwife appointment
• a second OB appointment
• am waiting on a retinopathy screening appointment (retina photos)
• I will get monthly scans from 28w onwards or so... Should get to see Tiny Fish a lot!

Oh gosh, I haven't done any belly pics for a while (scrabbles about and takes a quick snap of the ever-expanding belly-o-saurus) and..... here you go :)

A bright teal 21w3d Tiny Fish house.

13w3d HbA1c

I called to get my latest HbA1c results from my doctor today. They were drawn before Christmas along with all the ante-natal screening bloods.

I present to you my lowest ever reading:

40mmol / 5.8%!!!!!!




This is due to two things: general constant state of low-ish blood sugars caused by being Type 1 Diabetic in my first trimester. And also watching my blood sugar levels like a hawk on the CGM which I've worn constantly since receiving it. Did I mention I loooooove my Dexcom? I honestly don't know how I could have done this without it.

Still having lows pretty predictably in the middle of the night: 4am and 6am. I've recently been gently lowering my basal rates to try and stop these lows so I can get a good sleep. Waking between one and five times a night to pee and/or treat a low is not making me happy. Plus when I do ignore a low (under 4mmol) for more than 5 minutes then my uterus starts to ache! I know! It's obviously The Tiny One telling me to get up and drink juice pronto!

Will try to post again later in the day as I have my 13w NT ultrasound just after lunch today. Cross your fingers and toes that all is ok in there please! Please please please be ok in there Tiny Fish!

15dp3dt Second Beta (aka 4 weeks 5 days)

Second beta test today came back at 453! Woohoo!

This gives us a doubling time of roughly 42hrs, which is right smack bang in the middle of average.

Got a different nurse on the phone this time, but she sounded very positive and said "it's a good number". The relief I felt when I finally got the call was amazing. As you can tell from my previous post, I was getting a wee bit stressy about it. I was just so unbelievably happy that it came back positive that it was like walking on a cloud for about half an hour. After which time the adrenaline rush wore off and the fatigue set in.

They tested my progesterone too and it is 338 so the nurse said I should start weaning myself off the dreaded progresterone pessaries by dropping the dosage from 2 x 3 times daily, down to 1 x 3 times daily until they run out, or roughly 4 more days. Apparently I am making plenty of my own.

I need to go back in a week (next Tuesday) for another HCG test. The only way I found this out was by refusing to let the nurse hang up on me a la "just one more question!" haha I was determined to get the info out of her! Actually, I think the nurses' office must have been fairly busy, as I could hear other nurses talking to patients on their phones in the background.

I enquired about when is appropriate to enlist an ob/gyn and midwife. Nurse said that the fertility clinic has care of us until the 8 week mark which will be 29th November for me. At that time I should travel back up to Hamilton for my first ultrasound scan. Now, don't get me wrong, I cannot wait for this ultrasound. At about weeks today, I'm about halfway there. These milestones are incredibly important and hold great significance to me and my husband, and all those supporting us. But do I really want to travel over mountains for 3 hrs, have an over night stay, pay for a night in a motel, and book a day off work for two people?? Um, no. I asked the nurse if there was anything special about the ultrasound scan, and she thought about it for a moment, they said "well, there is a radiology place that you could ring and enquire if they would do it, but you would have to pay privately for it, just call and see if you can get an appointment for around the 29th Nov and then let us know so we can send a referral note through to you. They will then need to fax the results back to us." If it's less that the cost of all that travel and missed work, then we'll do it.

I keep thinking it would be great for the fertility clinic to provide a flowchart of procedures and appointments, just a general "what could happen" document. Rather than having to wrangle the info out whenever they choose to phone.

Once I got home Hubby suggested we book an appointment to see our GP this week to get his advice, as we may be able to get the scan for free??? I don't really care too much about paying for it, I just want to know that I won't have to travel. We have an appointment with the GP this Friday so I'm hoping I will learn heaps there!

Some more good news: I got my HbA1c result back. 16 Oct = 45 or 6.3% A slight rise, but this was taken after the transition to the pump (still learning) and before the application of copious amounts of crazy IVF hormones.

Not too shabby.

Went to the two elder step-kids senior high school prize-giving ceremony tonight and they both received awards! Very proud. It was cool with Hubby and I, their Mum and her parents, youngest step-son, and MIL. Some big cheers!

The school hall was packed for the ceremony and it got very hot. I was fanning myself with the paper programme, and started to get some really bad cramps, especially on the right side again but moving all over the place. I felt a bit faint, and figured I just needed to cool down and have some water. Which worked very well.

Thank you everyone for your lovely comments and support. It's wonderful to know you are all out there cheering us on! :D

CD 10: Blood test and trigger shot

I was full of beans for most of today even after the huge road trip (9.5hrs) yesterday, trying to get home from the clinic through a storm, floods, slips, bridges out, trees fallen over!

The fertility clinic had called yesterday and advised that I would need a blood test this morning (progesterone and something else...?) so I was up early, had my last Orgalutran injection, then it was off to the med lab to visit the vampires. I passed over my "regular fertility patient" card for the first time, and decided to get an HbA1c while I was there. The technician was really great and told me an awesome story about the last time she got stuck on the road after a crash involving, of all things, a molasses truck. Good times.

Work was alright and I taught my class fine. In the after-lunch session the nurse called to advise me of the exact time for the trigger shot (Ovidrel): 9.40pm tonight. Since the egg collection will be precisely 36hrs after trigger, that means our appointment will be 9.40am on Friday morning (CD 12).

Mid-afternoon I felt absolutely exhausted. Yesterday is really catching up with me! I went around to have a chat with my Mum, and the Dr G (who did the scan yesterday) called twice to give me advice about the egg retrieval procedure. I can't eat for 4, preferably 6 hrs before the procedure, and can't drink for 2hrs prior. If I go low I can manage things with small amounts of clear apple juice, but the doc would really prefer if I woke up early and ate a small breakfast (this would be at 5.40am). At one point she wanted me to disconnect the insulin pump altogether as she thought that would prevent hypos, but I quickly informed her that it delivers my basal and I can't take it off. She was cool with it once I explained the difference between basal and bolus doses, but man, I really hate when other medical professionals (especially well meaning ones I have only just met) make sweeping proclamations about Type 1 Diabetes management! She wanted to know what model of pump I had, cos, she said, if I had one of the newer ones with the cgm capability that would be better. Why yes, yes I do have one of those, and Animas Vibe with Dexcom CGM and it is fantastic. I should have done it ages ago. But hey.

Paracetemol (acetiminophen) is contra-indicated with the Dexcom, and the nurse yesterday had asked me to take 3 x panadol tabs before the procedure. Dr G confirmed that I could just skip that altogether as it would be far better to have Hubby able to monitor my blood sugars, and they could manage my pain with fentanyl and codeine... good stuff. Codeine normally doesn't cut pain for me, it only makes me loopy. And I have had fentanyl before with no pain so I figure I should be fine. I confirmed that they will have a dextrose drip handy should I go low during the egg collection, and to get the cannula line in as soon as possible. That's all I really wanted them to do. I did not want suggestions on the pump or anything, I can do that thanks, been doing diabetes management for 25 years, and now Hubby and I have the Dexcom it's taken it, in his words "from a dark art to a manageable science." Indeed.

Oh, and I also had to do an infusion site change, and a dexcom site change! I was working my way through those site changes methodically while Hubby cooked dinner, and it took me over half an hour. By the end of it I thought I was going to slide off my chair with tiredness, but a tasty dinner of fish cakes, bacon, eggs on toast worked well to perk me up.

I took a shower after dinner, and didn't hear any of the reminder alarms going off telling me to take the Ovidrel. Whoops! step out of the shower and the insulin pumps says 9.39pm OMG rush out dripping and rip the Ovidrel out of the fridge. I quickly prepped my skin with an alcohol wipe and stabbed it in no probs. But man, I could have thrown the whole schedule out of whack!

No drugs or anything tomorrow. We have been madly checking the road closure websites, and it looks like we should be able to take our preferred route up tomorrow afternoon. Although Hubby has also been checking the airlines to make sure we can take a flight should it all go pear shaped! I figure we are setting off the afternoon prior to our appointment for a 3 hr journey, that should give us enough time to drive even the longest way should we need it. But I have to teach one more class tomorrow before we leave. Thankfully I will only miss one class this week (I don't teach Friday's on this semester) and then maybe another couple of days next week if we get to embryo transfer. Fingers crossed. I believe I am calm now, but I suspect I might get more tense and nervous once the transfer takes place cos then it's just up to me.

Met with Medtronic Rep: help me decide

Today, in the middle of the BEST sun-shower ever, we went to meet with the Medtronic insulin pump rep. She brought a bunch of demo pumps and a foam cushion covered in infusions sets.

The best parts:

I got to see and feel a lot of different infusion sets. And we talked about their various benefits and had a go at disconnecting/reconnecting them. I am quite interested in the lower-profile sets, and potentially the angled sets. The rep seemed very concerned about the amount of packaging that comes with the Mio sets, but I think that an all-in-one system is actually a very attractive prospect for a never-pumped diabetic!

She had both the Paradigm 522 and 722 demo pumps with her, plus the VEO which is the same size as the 722. Their main difference is resevoir size; I would only need the smaller size as I don't consume much insulin however the rep pointed out the insulin requirements increase dramatically during pregnancy (hello! That's what we want here!!). So I asked if, should I select the 522, could I get a 722 loaner pump during pregnancy and she said she could probably work something out for me.

Both the 522 and 722 work with the Medtronic CGM system. I do not really like the look of the Medtronic sensor or transmitter. It looks big and clunky compared to the Dexcom CGM. And it has masses of extra tape that goes with it. however, it IS rechargeable. The Dexcom rep confirmed that the Dex transmitters routinely last longer than 6 months, and even over 12 months before their battery goes flat. Humph: money.

The VEO is another kettle of fish all together. It looks just like the 722, but it offers a really advanced feature: low glucose suspend. This is where it shuts off all insulin delivery if you go too low and don't respond to the warning alarms. It's a very attractive proposition, as it would help to fix one of my primary problems: hypos. But it comes at a very high cost. The VEO is not govt funded in New Zealand. The rep said although it's not funded, if I paid $2000 then the balance would be funded. So, it's partially funded? It got confusing. Total price for this puppy? Hold your breath: $12,000.

And that doesn't include the cost of the CGM transmitter or sensors.

Ok, pick yourself up off the floor.

Back to the core decision. Should I get the Animas Vibe pump, or one of the Medtronic pumps?

Here are the main points as I see them:

Animas Vibe / Dexcom

• This is the pump I have been looking at getting for the longest time.
• It has combined pump and CGM.
• It uses Dexcom CGM which is the most accurate available in NZ at present. Animas and Dexcom are currently involved in The Artificial Pancreas Project.
• Waterproof.
• Larger, colour screen.
• Offers smallest increments for insulin delivery. I need this.
• Insulin pump (including CGM receiver) fully funded.
• Dexcom transmitter (approx $1000) and sensors (approx $125 each) are not funded.
• Dexcom sensors last up to 7 days.
• Fancy bolus, fancy basals yada yada yada...

Medtronic 522

• Combined pump and CGM.
• Uses the Medtronic (Enlite?) CGM, which is not as accurate as the Dexcom based on the research I have done. The brochure the rep gave me doesn't even state accuracy!
• Pump is funded.
• As with Dexcom, the Enlite CGM transmitter and sensors are not funded. The rep did not have a price-list with her and is yet to send these to me.
• Sensors last up to 6 days.
• Fancy bolus, fancy basals etc.
• Quite easy to navigate menus.
• Small grey screen.
• Has a back button.

Medtronic 722

• As per the 522, but has a larger reservoir which could come in mighty handy during a pregnancy.
• I am not considering this pump, rather if I went with the 522, I would ask for a 722 loaner during pregnancy.

Medtronic VEO

• As with the 722, but offers additional software that works with the CGM system. This Low Glucose Suspend stops insulin delivery when blood sugar drops and the diabetic doesn't respond to alarms. It has other specialised alerts as well, but the rep didn't explain those very well. She also didn't have a VEO brochure even though she knew I was interested in it. Overall it's a very attractive idea... having hypos prevented for me. Hell, I've had two hypos since going to this damn appointment.
• But it is very expensive and is not fully funded. I'm not even sure it's funded at all, since it doesn't appear on the Pharmac schedule. From the way the rep was talking it would seem that Pharmac is paying funding for a 722 and then the patient is actually getting the VEO. How that works through the machinery of Pharmac funding is beyond me.
• Still have to stump up the pennies for the CGM bits'n'bobs. Wow. This is sounding like it's getting to pricey.

That's all I can think if now. I am quite tired (big field trip with the students today, plus visit to the rep, plus went low twice, plus all the grocery and petrol shopping, plus cooked dinner!) and need a nap.

If you have advice or feedback on making this choice, chuck me a note in the comments :)

p.s. I got the results of my HbA1c back = 41 mmol/L = 5.9% = !!!!! This is the first time it's every been under 6% and I wasn't even trying to accomplish that! I was trying to make it go UP!

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!"

A little bit of awesome HbA1c-ness

I know I know, no posts for ages and then 2 in one day :P

But look at this!

Screenshot of TuAnalyze data graph measuring my HbA1c results over time.

I am holding steady on HbA1c result of 6.5% Yay! :)

(that's a 48 mmol/mol in the new numbers)

And now I will document how I got there. No it wasn't anything strenuous or taxing, but it was consistent.

I kept looking for the best way to use the data from my blood tests. Knowledge is power, after all.

That's it.

I figured, that since I test so many times each day, and record each and every one, plus what I eat, that there must be a way to use the data more effectively. Like, perhaps in a way that I could see long term trends happening, or find patterns.

My Endo and Diabetes Health Nurse are always looking for patterns, and I can never see them.

I used to use a paper logbook:

My old paper log book. Each horizontal row = 1 day. Note the classy blood smear top right.

Then moved on to using that together with the iPhone App Insulin Calculator to work out my insulin dosages more accurately. This really made a great change, and if you look at the TuAnalyze graph above, it is what I credit with the drop from 8.1 to 6.7.

More recently - like in the last 3 months or so - I have added another App built by the same folks, called  simply Diabetes Diary. The great thing is that these two Apps link together, so I don't have to enter data twice.

It gives me weekly averages graphs. This is what my "day" way like when I started using the Diabetes Diary App.

I just go into Insulin Calculator, type in my blood sugar and enter what carbs I eat, it works out the number of unit insulin to give - and oh yeah! you can easily adjust your insulin to carb ratio throughout the day! Super precise - then just tap the "take it to Diabetes Diary" button and it's there. Too cool for school I reckon.

And this is what my "day" is averaging out to now. Quite an improvement I think.

It feels like the most advanced technological solution I'm going to achieve without an insulin pump. I'm using 2 injections of Lantus every 24hrs, plus between 3 and 6 shots of Humalog a day.

My week, in real time. I just ate a doughnut, hence the uppity spike-ity bit.

I really like these two Apps. They are very handy and I credit them with increased stability in my blood sugar control. No debilitating nighttime lows since I've been using them, touch wood.

It's good to be able to crunch the data too, like seeing time of day averages for before breakfast, post-prandial breakfast, before lunch, post-prandial lunch etc. This enables me to spot any crazy business, and I can check it with the average day graph.

But you know the main reason I got it?

The graph above. Last Seven Days. When I started logging my blood sugar (well, actually it was my parents) we wrote the details in the log book and then drew the graph by hand. We even used the spent test strips (you know, the ones you wiped the blood off and they changed colour? Really long plastic ones that took about 5ml of blood) as little rulers to keep the graph lines nice and straight and accurate.

Did that for about 15 years. Then was told they had stopped making that graph-style of log book, so I would have to switch over to the horrid chart style. Yucky. Didn't ever really like it.

So when I noticed all these DOC folks showing pics on their Dexcom's and CGMs of graphs, I thought, hey! We were doing that after a fashion ages ago!

And that is the story of why I went hunting for a diabetes iPhone app with a decent graphing feature.

- - - - - - -

Currently use Lilly Huma Pen which is metal and has half-units for the Humalog, and the disposable prefilled pens for Lantus. Blood meters is Optium Exceed. Gotta love their crazy take on the English language.

I want OFF this damn rollercoaster! Can you help?

Next week the students come back and I will be in teaching mode again. That will be exhausting but challenging work which I'm looking forward to.

The week just gone has been absolutely frenetic, with last minute course prep (still not done, and it's Sunday!), moving the entire Art department into a newly refurbished facility, oh yeah, and 3 days of compulsory academic staff training!! It's been super nuts.

I know my diabetes control has been degrading. It's like, seriously crappy at the moment. Here's the last 7 days for you:



(Apologies for having to twist your neck to see that!)

As you can see, I'm all over the map. There are some trends, which I guess are a blessing as it may just mean the Lantus (basal) dose is screwed up:




Massive peaks and troughs = massive headaches, tiredness, grumpiness, and brain-fogginess :(

So what I'm doing about it is some intensive tracking and analysis to see if I can figure out where the hell I'm going so wrong. I've just purchased Diabetes Diary for iPhone and that's where I got the pretty graphs. Have to say that so far, I'm liking this app the best of all. And I've tried most of them!

I'd been using the Insulin Calcilator app, made by the same folks (http://www.fridayforward.com/) for nearly a year now and I credit it with a 1.5% drop in my HbA1c, so I figured their diary app was worth a shot too. I like how the two apps work together. I can take a bloodsugar test, enter the results into the Insulin Calculator, then just press a button and it transfers all the data across to the Diabetes Diary, where I can add more info and make adjustments. Cool eh? :)

I think it's really good that I'm back in intensive analysis mode, because if 10+ bloodsugar tests a day aren't giving nice smooth control there must be something else going on. And I can't find it without graphs, averages, and data to help me.

Let's be clear: I test constantly. I inject semi-religiously, and I track it all in my paper log book:



But that doesn't give the instant clarity of a graph, or the insight of weekly averages. I hope this system helps. I suspect it will. I've done this intensive analysis thingy before and it has always had positive results, even if only minor.

BTW, if you can spot any major issues for me by looking at the graphs, please let me know in the comments. All help on nutting this one out is appreciated. :)

I take Lantus twice a day (11u breakfast, 9u dinner), and bolus with Humalog. I'm incredibly sensitive to changes in insulin, and am on child-size doses of Humalog. My I:C ratio is 1:14. I eat between 90 - 180g carbs per day including emergency food like juice and stuff. I walk, weather permitting :P And I work hard and get pretty stressed out at times, which never helps. Anything else you would like to know so you can help, let me know in the comments. Cheers everyone.

- Posted using BlogPress from my iPhone

Diabetes Annual Review

I've just returned from my first ever Diabetes Annual Review (DAR), for free at my new GP's office. Good golly they checked everything. It even included a smear test!

I had a bunch of blood tests a couple of weeks ago, and we discussed the findings in detail. I also got the "tickle test" (where they check you still have sensation in your feet - I was pleased I didn't giggle too much this time), the "read the letters from the chart test" (to check vision), pulses wrist and feet, heartbeat in chest and back, and liver check.

I was passing with flying colours, I even scored a brilliant HbA1c of 6.5% (down again! Yay!)

By the way, if you are a diabetic in New Zealand, or if you know a diabetic in New Zealand, get them to login to TuAnalyze and add their HbA1c data to the map! Look, we only need 12 more NZers to get NZ to light up!

But then came the bad news :(

I have proteinuria, which mean that I spill protein from my kidneys into my urine. Usually, with a diabetic, that is a sure fire sign that your kidneys are on the way out. With me they are not so sure. I had a kidney biopsy way back in '95 (I think??) and the results were inconclusive. Basically they told me that I "might just be one of those people who spill a bit of protein".

Well, with this latest round of blood tests it showed that my kidneys are getting worse. I got a microalbumin of 577, which is waaaaaay to high. All other kidney function tests were failing too. Wah. The GP has duly sent me off to get those big lovely bottles so I can do a 24hr urine collection test. (Translation: you will spend an entire weekend at home collecting pee). He said that if the protein comes in over a certain ratio, then I will have to have another kidney biospy. The biopsy itself was not too bad, but diabetes and me and anaesthetic DO NOT GOT WELL together. :( So everyone please cross your fingers that it's not a high result.

The only thing I can do to protect my kidneys is to take an ace inhibitor, like enalapril or lisonopril. I did try that a couple of years ago, but I stopped taking them after only a couple of weeks due to problems with low blood pressure. The GP couldn't believe it today when he checked my blood pressure and it was lower than before! Now down to 110/60 (and he said that the bottom number needs to be above 60 for efficient blood flow throughout the body or something, i.e. not being dead). So two things will now happen: 1) I get put back on the lowest dose ace inhibitor available, about 1/2 a 2.5mg tablet per day, and I go for another blood test, this one to check my cortisol as it may be affecting my blood pressure and making it go too low.

And the last thing? Yup, even with my good cholesterol (HDL) coming in with excellent numbers, and my ratio of HDL to LDL being great, my LDL is still ever so slightly too high at 2.2 - so he's putting me on a daily statin as well! I am awful at taking pills :( Can never remember them and have lots of trouble swallowing them :( But if it helps prevent me having a heart attack or kidney failure, then it's a good idea to TAKE THE DAMN PILLS ALREADY! (p.s. I'm yelling at myself, not at you, dear reader. Feel free to join in and yell at me to take my pills!)

Today is the last day of my mid-semester holidays and we had torrential rain yesterday and now we have gale force winds. I bought my lunch and drove down to the cliffs overlooking the beach and islands, and got actually very scared when it felt like the wind was going to tip my car into the sea. I reversed back into the hill a bit, and the car stopped rocking about like a aeroplane in turbulence. I ate my custard square looking out over the sea. It was pretty and violent and windy.

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?