Saturday, September 28, 2013

My Pump Start Experience - Part 2

Pre-pump start preparation

Try saying that 3 times quickly. ha.

Following on from my part 1 post, here are a few more things I did to prepare myself for the pump training day and pump start. Here are my recommendations:

  • Do the grocery shopping so you will have enough food for healthy easy-to-cook meals in the house for a week.
  • Have a shower the night before pump start. Take your time, wash your hair. Enjoy your last "free shower" for a while. Recognise that the next time you bathe it will be different.
  • Put all the pump supplies and stuff in a box to take to training. Take more, or ask your nurse if you're not sure what to bring.
  • Because I wasn't given a list of what to bring, I needed a few things extra which I only learned about or guessed because of reading blogs. Take the following:
    • Your pump. Duh. But my trainer said it happens. And in one instance a mother of a diabetic child asked if she had to bring her kid!
    • Infusion sets, cartridges, lines.
    • Your CGM.
    • Sensors and inserter.
    • IV Prep wipes (they have adhesive in them, as well as alcohol)
    • Unisolve wipes (for removing sticky things, you won't need it immediately but it's good to have it handy. A must for getting adhesive residue off)
    • Micropore tape (to tape the line to your skin in a safety loop. My first safety loop saved my pump from the toilet on the very first night!)
    • Opsite Felifix tape. (Use this to hold the Dexcom on for longer)
    • Scissors (for various tapes and packaging)
    • A small bottle of hand-sanitiser (alcohol, I got one that has aloe vera in it)
    • A notebook and pen.
    • Your camera/smartphone to take a pic of your first site insertion!
  • Pack your lunch the night before. Everything needs to be carb counted. I have been weighing things all week, and then looking them up on Calorie King. I also started writing the carb counts of food like muesli bars on the individual wrappers, and on the glad wrap of unpackaged foods.
  • Aim to eat similar meals at similar times of the day for a couple of days prior to the pump start, so you know what those foods should do to your blood sugars.
  • Record your blood sugars in as much detail as possible to get a good "before and after" picture.
  • Preferably earlier than the day before pump start: get your HbA1c, get a general medical check done, go to the dentist for your checkup, take your vitamins (if any), stay away from sick folks as you don't want any unplanned sickness while you are learning the pump.

Pump Start Training

My husband works from home mostly, so he was able to drive me to the pump start day at the hospital. There would be two of us being trained by two different pump reps for both Animas and Medtronic. I also knew my DNE would be there.

Well, there were 9 people in that room when I walked in! Me, the other diabetic woman, our DNE (1), two more DNEs (2 + 3) who wanted to learn more about T1 and pumps, two Animas pump trainers and two Medtronic trainers. Plus our endo popped in at one point. Plus me makes 10. There were a total of four diabetics present. The most I have ever experienced as an adult.

I put my huge box of stuff on the floor and started pulling out my Animas box. I felt rather self-conscious as 9 pairs of eyes watched me, and I must say that the other T1D's face was fixated on my pump box. She had the Minimed Paradigm plus their CGM. I opened my box and showed her my pink pump, and I may have detected a little envy? Maybe a little consternation that she had not been offered this pump choice? Or that she had been counselled away from it? Who knows. I could be reading too much into it. Could have just been nerves.

We started off by going over the rough schedule for the day, and introducing everyone. I introduced myself and explained what I did for a career. Our DNE gave us some initial instruction, and we were given out basal rates, I:C ratios, ISF, and BG targets for the first day.

Then we split up into two camps to complete basic training and installation. I can't speak for what happened in the Medtronic training as I didn't see any of it, but everyone was pretty friendly - and nervous! The anticipation! Wow!

I had my Animas trainer, T, and a new Animas trainer, K, who would be doing his very first training session with me. I felt fully fine with this, as T was obviously going to be helping out and watching closely, and I had so many nurses and diabetics to hand that I knew I would be looked after well. One of the other DNE's also joined us, as she (I think) specialised in T2 and wanted to upskill by learning about the pump.

The Animas-camp moved into a smaller room, and K explained that the first thing we would do was install the infusion set, to "get it out of the way, otherwise you won't be able to concentrate". Very cool! I was given a training manual and then we were into the practical stuff.

Very quickly, I learned that humour and nodding and saying "I understand" would be the quickest way through this. Since I had watched so many videos of people doing site changes, there were few pieces of brand new information to me. I had a good overall idea of what was going to happen, and just made sure to ask questions as they occurred to me. It's just, things seemed to take so long, and even when I nodded that I understood, K would still have to explain things in full to me. I expect that as part of the routine there are various things that have to be explained ad nauseum for legal reasons. But it's a small moan really, as the trainers both said I was doing really well all the time.

Best bits

K had two demo pumps, plus I had my real one. Nurse S was offered one pump to use and K took the other. After putting in the battery I learnt how to set my basal rates into the pump and review them carefully.

We started off with washing hands and talking about keeping surfaces and hands clean. And then it was time to put in my first ever infusion site!!!

Looking ever so slightly green, K announced that he would put in a site on himself which surprised me a bit, I was expecting only to be guided through it. I suggested that instead of him doing the whole thing then asking me to repeat a long bunch of steps that rather we do it together step-by-step. Hey, if it works for my students, it should work for me too! hee! They liked the idea so K took a blue Inset 30 inserter, and I took my pink one.

He showed me how to open the inserter pack, and suggested I hitch my skivvy up under my bra so it wouldn't fall down and contaminate the site. I used the alcohol wipe to clean my skin in a spiral motion. And after watching K carefully as he inserted his blue site, it was my turn. I decided that if I just did it, then it would be done. If I screwed it up, so what? I could just try again elsewhere. So I put the little feet of the inserter on my belly, pushed a little bit so the skin bulged, and then squeezed the release trigger. It shot the needle down into my abdomen at an angle, and I sure did feel it go in. But it wasn't super painful. Nowhere near as bad as getting an intramuscular immunisations shot in the arm, for instance. It was worse than a pen injection due to the speed and force, and I think I was quite tense which made it worse. But it was more the force I felt, not pain. The closest I could explain it is if someone pokes you with a wooden toothpick hard but quickly. Overall I was surprised at how quickly it was over and how very little it hurt. In fact I couldn't feel it at all after about 15 seconds. After about 30 seconds, a wave of a dull ache started at the site, the feeling you get when there is something sharp sticking in you, and if you move too far or too fast, it will really hurt. But I wouldn't classify it as pain. More just a warning of potential pain if I moved. I was also quite tense and since I was unsure about how it should feel, I took great effort not to knock it or move my belly muscles.

But it never did get any worse and before I knew it, it was right on to doing my first cartridge fill with a demo cartridge and... "Pretendy Insulin" so labelled because it is in fact an old Novolog vial filled with tap water! This was T's sense of humour and it takes the prize for the cutest thing of the day! :)

After the demo cartridge, it was time to do my real cartridge, with real insulin. Suddenly I was a lot more concerned about the bubbles! K kept telling me to hold the cartridge upright and flick it around in a swirling motion, but I must have been doing it wrong lol. I just wanted to fix it the way I knew works best, from years and years of MDI with syringes!

I loaded the cartridge and then attached the line. And before I knew it, I was pumping insulin. It was all so delightfully easy and pain-free that I couldn't help smiling a huge smile and taking a photo:
First pic of my first infusion site and pumping insulin for the first time evah! I'm sitting down that's why my tummy looks so odd. lol

Worst bits

[I didn't really want to write this bit, mainly because I know one of the people involved has access to this blog. Isn't that always the way. You find yourself censoring things to protect folks in real life. Well, I figure if this is to be an accurate record then it should be honest. The person involved, I'm sure, would be the first to admit that we both have strong personalities, and that we have all made up and are fine now. It's not identifying. But it did affect me terribly at the time so I have decided to write it down. It it's you, well, um sorry? Hey it happened and it wasn't exactly a private exchange...]

After all of the adrenaline of the morning, and after afternoon tea and a second session of training which covered setting all manner of things on the pump, we gathered together in the big room before lunch. We had covered a lot of stuff including putting on the Dexcom, but not boluses. It was the one thing I was suddenly getting some urgency about because lunch was coming up. Earlier in the morning, DNE 1 had asked when we should break for lunch. She suggested 12.30 or 1pm. I raised my hand and suggested that maybe the diabetics should decide, as I ate at 12noon. Well, lunch was late. I was edgy, and in the pre-lunch gathering DNE growled my trainers for not teaching me boluses yet! However, I knew more about the CGM than the other "team" as it turned out. It started to get quite competitive and I did not find that helpful one little bit.

Lunch was short, because.... um the morning session ran late, but for some unknown reason they couldn't give more than 20 mins for lunch??? Anyway, I texted my Hubby to come and pick me up so I could have lunch at home. He was a the front doors in a flash and once we got home (like a 60 second journey! They wouldn't let me walk home!) I heated my lunch, did tests, and discovered that the Dexcom 2hr warm-up time had just finished. So I got distracted, but in a good way! I tested and was low. 4.3mmol/L. Sh*t. Normally I would eat my lunch and have juice and test again some 15 mins later. But I had to get back to training. And I had to use the pump to deliver my insulin according to it's software and algorithms. So I hoovered up my noodles and kiwifruit, and tested again as late as possible. But not long enough, only 10 mins. I was still low. I decided to work out a dose on my iPhone app and just give that manually.

Well, when I got back to training I was going a bit high. Only 12 or something. Not much. But enough for DNE 1 to scold me out in front of everyone and ask my why I had done things the way I did them. And basically tell me I made the wrong decision not to just trust the pump. I was recovering from a low (which she had been made aware of) and was super stressed and nervous about the whole process of changing to the pump. I started to get emotional and I could feel the frustration and anger and tears welling up. When I go low, I lose my words, and I often have an inability to form my thoughts into coherent sentences which actually mean what I am thinking for up to 15 mins post a low. I get severe lethargy and a semi-wet-concrete brain for up to a couple of hours post a low. I was not in a good place to be called out on something as basic as an insulin dose at that moment. I just told her "I can't take this right now!" Thankfully, one of the Medtronic trainers who also happened to be diabetic piped up and said some soothing comforting things, and smoothed things over. I made sure, once I understood where my feeling came from to tell DNE that I understood what she was trying to say to me. I know she was just trying to look after me, but her manner was rough in that minute.

And what were my feelings, you ask? Well, I had spent so long preparing and thinking about the physical aspect of being attached to the pump, that I hadn't considered quite how dramatically it would affect me emotionally.

Having to give over control, completely, to a machine.

In my 25 years with T1D, most of the time either it's been my parents or myself in the driver's seat. I have been working out the carbs, dosing the insulin, and organising all the appointment and treatment since my teens. Giving even part of that up was hard. Once I had had that shown to me, I could actively manage my emotions and make strategies to deal with the changeover. Such as just treating the new pump as an experiment, one that although not without risks, was done in a semi-controlled environment with lots of people around me to help. I would be ok. Suddenly, it seemed do-able.

Things I didn't expect

  • How NOT painful site and sensor insertions would be. Just do them calmly and quickly so you don't tense up. No big deal.
  • How much I was unprepared for the giving-over of control to the pump.
  • How useful all the video-watching and prep I'd done would be. The training is a blur to me now, but it was helpful to see things in real life and to pull and the bits together.
  • How emotional it could get.
  • That my DNE would expect me to run at 4.5 all day. Both the other trainee and I went "you've got to be kidding!" but she assured me it would be fine. And she was right.
  • To have all those people in the room.
  • How unsupported I could feel at times.
  • How very strange it would be to spend a whole 2 days dedicated to diabetes AND NOTHING ELSE.
  • How weird it would be talking to nearly complete strangers about my most personal and intimate moments and choices with diabetes.

What I wish I knew before hand

  • It's quite possible to wear the pump so no-one knows.
  • It also possible to be so comfortable with the pump and dex that you forget you're wearing them.
  • It's super fantastic to have another method to measure my blood glucose, and the Dex certainly gives the crappy Caresens N-Pop a run for it's money! On the very first day the Dex caught multiple lows that the meter didn't show up and I didn't feel. Being able to take preventative action to both lows and highs is amazing.
    Don't expect to come down from highs really fast. Generally I am finding that if I go high (above about 11) then it takes about an hour before I come down, but the drop is more gradual. IOB is excellent and prevent the never-ending roller-coaster of glucose fluctuations.
  • Taking a shower is different, but not bad. It just takes more planning (taping etc).
  • You will still need to be your own advocate for your health, and to take charge of your diabetes.
  • But... it's important to listen and allow the trainers and DNEs to take care of you.
  • Involve your partner, spouse, family, etc as much as possible, and don't be shy to share what you have learnt with them. They are probably quite affected by the whole process and they may be more scared and nervous than you are. Clear communication is very important!
  • Drink lots of water. You can actually see the action of water as it dilutes your blood sugar on the Dexcom graph!
  • That I would get a 2-day migraine from the sudden drop and stabilisation of my blood sugars. Since panadol (acetaminophen) is out of the question with the Dex (and is useless to boot) I had neurofen (ibuprofen).
  • Just how much it would take over my brain. I can talk of little else, to the point where I can be concentrating on a conversation and then I'll just say something totally out of context like "it's really cool being bionic, here let me know you..."
  • How many different names for pumping there are: robot-parts, android, cyborg, bionic. And people's funny responses to seeing the pump first time: "so, you don't have to inject or test your blood anymore?", "oh that will make things so much simpler for you!", "can you be hacked?", "I'm a tax-payer, and you are now my tax-payer funded android. You are a terrible android since you won't grade all these students' assignments for me!", "I think you will be the first to reach the singularity (where the human mind can be uploaded to the computer. It was followed by raised eye-brows when I informed them how I had been already uploading my data", "ooh! Biometric data!".
  • You can do this!

My thoughts now

At the time of finishing writing this post, I have been wearing the pump and dex for 10 days. I have done 4 site changes and one dex change.

I am now very comfortable wearing both, and I have developed a habit of flashing people my belly to show them my cool new robot parts. I even showed an entire class. It prompted a really good discussion and they were all so curious.

As each day went on, things got easier and more familiar. I was at first very tense, both physically and emotionally about having the devices attached, but as I learned to relax into it, things got easier. I treated each new activity as a challenge: first night with the pump, first day back at work, first bike ride, first unbroken sleep, first pump low alarm, first class taught, first shopping trip for clothing, wearing the pump in as many places as possible, stretching (that took me a while! I thought it would hurt lol).

The Dexcom is AMAZING and if I had to pick just one device, it would be the Dex all the way. The pump is allowing me to achieve flat lines in my blood glucose graphs like I've never seen before in my life. With these two devices I am finally able to spot some trends and patterns. When I start to go low, I know roughly how fast I am dropping and how low I am currently so I can take an appropriate amount of juice - not too much.

I am really loving the stability and control I have gained.

My husband keeps telling me he can't believe how much energy I have now. And my semi-continuous headache has finally lifted (you know, the one you get from bouncing between 2 and 20 in a day?)

My family, friends, colleagues and students have all been loving, supportive, or curious. I have not had anyone be negative about it, and I have been able to talk about T1D a lot in this past week. That has to be positive.

I am downloading all my data nightly and uploading it to Diasend. So far I am averaging about 92% in target range. My target is 8 and that is my average reading both from my CGM and blood glucose meter.

For the future

I really hope that this will mean excellent control as we head into IVF soon. It will only be a couple of weeks away now, and we got some more good news: the AMH test came back at 15.35 mmol which is firmly in the green! I was worried about this, but things are all lining up as best they can.

I am really excited about this huge step in my life. Overall things are going incredibly positively, and the pump and CGM together are like having my eyes opened after being blind for 25 years. It's going well. If you are considering doing this, I would love to hear from you. If you have tips and tricks for me - yes, you should so email me! I need to know all your goodness and pick your brain please?! :D thekaitakeblog @ gmail com

Saturday, September 21, 2013

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"

Thursday, September 12, 2013

The great un-boxing!

So, true to form I couldn't help but take a whole bunch of photos as I un-boxed my new toy:

[spoiler alert: contains gratuitous shots of shiny medical equipment. In pink.]

Click through to Flickr to read the descriptions.

This was by far the biggest and most impressive box of goodies I've ever collected from my pharmacy. All the pharmacists were hovering around like chooks and they seemed very interested in the pump - this being the first one my pharmacy has ever ordered.

I ended up getting the colour I wanted, and it's kind of a reddy-pink which I am already fond of. I am thinking of naming it. Too naff? Do you name yours?

Although I have a huge box of stuff now, I suspect that some bits of my prescription may be missing? I haven't seen the script, but last week my pharmacist was asking me what length needles I wanted - and yet there is definitely no box of old-skool needles amongst my haul. There is also no box of skin-prep wipes, and although I know they have received the script for my 10ml vials of Humalog, I will have to go back and get it cos that is also missing. Grrr.

I did remember to collect a new pottle of 5mg folic acid tablets. I am taking them nightly, along with Elevit and 1000 IU Vit D3 as suggested by my endocrinologist/s both to support pre-natal requirements, and to try and prevent any future offspring getting T1D (that's what the Vit D is all about - although I should really be upping the dose to about 2000 IU by now). Last night I ordered more vitamins online and boy is that stuff expensive! In fact, the vitamins are worse than the insulin pump lol! Yay for government funding. There is NO WAY I would be able to afford this otherwise. Vitamins = $85 vs. Pump and 3 months supplies = $33.

Speaking of expensive things, my parents have kindly offered to purchase the Dexcom system for me. I am very, very grateful for this opportunity, and have called to put in my order today. My pump rep said I could do a one month trial of the Dexcom if I bought one box (4) of sensors, but I am going to buy the transmitter too, and ask if I can trial the Dexcom receiver unit. Since the Vibe pump is a receiver itself I don't technically need the Dex Rx, but it would be good to try it out if I can. Let's just say that this request took three phone calls and being transferred around the call centre in Auckland between about a gazillion people. All very polite, and we got there in the end.

I took my big box of loot around to my parents' place this evening (in the rain) to show them, since they had never seen a pump in person before. Dad and I watched the DVD and OMG is it boring! Such minutiae. Kills you with details and repetition, like being hypnotized. Except I must pay attention or else risk terrible consequences with not being able to work the pump lol. Long story short: do not watch the DVD out of curiosity. It is serious and it is educational. Not something to watch for fun. Certainly, nothing in comparison to Diabetic Danica, Kerri Sparling, Candace, or Kim Vlasnik!

It is now exactly 1 week until I become bionic, and T-minus ~27 days until I start injecting IVF hormon-a-ma-phones. Also, I shall turn 31 (cough) shortly. There will be eating of vast quantities of tasty treats. :D

Saturday, September 7, 2013

Our Pre-IVF Appointment

Yesterday we had our pre-IVF appointment in Hamilton. It went very well and Hubby and I are both much more relaxed about the process. :)

We travelled up (3hrs) on Thursday, had an interesting meal at a restaurant named after a lizard, and stayed in a nearly-brand new motel which was superb. Our appointment was for 11.40am on Friday 6th September so after a breakfast at a kitchen over in East-Hamilton, we had some time to kill.

A walk around the lake sounded like a fine idea, but the wind got up and then it got nasty-bitter, so much so that my ears were aching bad :( So we experimented with the navigation app on Hubby's new phone and drove to the botanic gardens which wasn't so windy-pants.

The appointment itself was very good. We learnt a lot and left feeling like the process is truly underway now.

In the waiting room, our old doctor walked in and although she smiled and said hi, she couldn't really look Hubby in the eye. Awkward! :/ For a moment there I thought there had been some mistake and we would still have to see her.

But our new doc, the head of the clinic Dr S came out and greeted us shortly afterwards. He was very friendly and seemed genuinely happy to meet with us. First up, he mentioned how he was familiar with our file and he confirmed that we had now transferred to his care. The relief I felt at hearing this was quite surprisingly strong and I immediately felt confident about our treatment - for I think the first time ever.

Dr S explained that we would be good candidates for a newer IVF regimen. As he put it, at least there was some silver-lining to having to wait so long! So we will be using a drug called Elonva which is a one-shot injection that replaces 7 daily FSH injections. Personally, I don't mind having to do injections (hey, I do about 8 a day already!) but I like the other benefit of Elonva: the action profile seems to make sense to me. He explained how it has been created by taking the FSH molecule, which has a half life of about a day, and combining it with a segment of the hCG molecule which imparts it's 7 day half. He said the results are equivalent or better to what they are seeing as with patients using the traditional daily injections. Oh yeah, and no down-regulation will be necessary with this protocol which means no menopause which is the most terrific news you can give to a woman, let alone a T1D woman! Yay! :D

We discussed my AMH test (which was 9.35 about a year ago) and Dr S advised that I should do another one that day since it would be funded as part of the cycle. We talked about how it is kind of useful to have such long term (3 years worth) data on my FSH (latest: 5.5), oestradiol and AMH levels.

Since we have good quality sperm frozen already, it all came down to what my body is doing. I must say I was immediately nervous when Dr S said he wanted to re-check the AMH since it was just at the cusp of the "green" level last time, but he didn't expect it to have altered too much, and he explained how it is variable. He wouldn't be worried unless it was 3 or below, and treatment wouldn't change unless it was below 5 or above 20.

We talked about my diabetes and how that is controlled, and this time it it felt like I was really being listened to when I spoke about my diabetes treatment. Because it DOES matter. I told him how I will be going on a pump on September 18th (in fact, my prescription was written last week and I should pick it up from the pharmacy this coming week! Exciting!), and Hubby talked about how I need any IV lines placed as early as possible to avoid my veins collapsing with a hypo in pre-op.

I had prepared a short list of questions with Hubby the night before, and they had pretty much all been answered before I even got to ask them :) The only thing he raised that I wasn't expecting was that both of us would need to do a short course of antibiotics, and that because of my diabetes I would need some antibiotics prior to egg retrieval / transfer (I can't remember which oops).

One thing that we spent a lot of time on was getting an idea of possible scenarios and outcomes. Although we have been given a 40 - 50% chance of IVF working, there are many ways this could play out:

  • IVF stimulation works perfectly first time (best guess for drugs, dosages, and timing)
  • Could result in a positive pregnancy test, which could result in a baby... or not.
  • I could get OHSS (Ovarian Hyper Stimulation Syndrome) which would probably mean the cancellation of the cycle while I recover.
  • Dr S expects us to retrieve about 10 eggs, although this is of course just a guess. Out of that he estimates we may get 1 - 3 usable blastocysts, so maybe one or two to freeze. But maybe none. I really hope we get some to freeze!
  • If I make it through the stims alright, but get OHSS which makes embryo transfer not a good plan, then we could do a "freeze all" cycle, which apparently has very good outcomes and Dr S said that there is some research to suggest that all IVD cycles should be freeze all so that the woman can rest and recover her body for best possible chances.
  • So depending on what the embryologist thinks, we may end up transferring day 3 or day 5. Only day 5 embryos are frozen, and of course there is the chance that they may all need to be frozen if I am in no fit state for a transfer.
  • If this first transfer is unsuccessful, then we can continue and do FETs with the remaining frosties. These are all considered part of our first cycle. If none of these work, then we can apply for a second funded cycle, but there would be a waiting time of between 6 and 12 months for this. Any pregnancy from the first cycle negates the second funded round of treatment. I am not sure if by "pregnancy" they mean "live birth" or just a positive pregnancy test??? Will have to find out, not that it will change much...
We discussed the fact that I would need a high-risk obstetrician, and although I knew this, I asked if we should secure one now or wait until I'm actually pregnant? His opinion was that we didn't need any more pre-conception counselling (although he offered us IVF counselling - which would have been useful, like, 3 years ago maybe!!) and he recommended one out of the two high-risk OBs in our home town. Now I need to find out a) how expensive they are to attend privately, and b) since I am diabetic I will be needed one anyway, so could I choose which one? I wonder...

Dr S wanted to do an internal ultrasound to check my follicles (antral follicle count), so we got to meet our new nurse and even before I'd seen her, I was behind a curtain stripping of my pants lol. I was pleased with myself for wearing cute socks and entirely by accident! We got on well immediately and it was all so much easier and relaxed than with the previous doc and her nurse. So, anyway. No pants, ultrasound, Hubby, nurse and doc in the room with me. Should have been unnerving but I always find any chance to look at my insides just fascinating. I was asking lots of questions and the doc explained it very well, showing that my uterus is looking good with lining and no polyps (which I had been worried about), and then looking at the right ovary which proved hard to find as normal, then the left. All up I had 11 follicles with one showing the corpus luteum - a burst follicle indicating I had probably ovulated the day before on the 5th Sept. Interesting, as this means I will finally be able to work out precisely how long my lutenising phase is. :P

Although I was worried about what the AMH re-test might show (we won't get the answers for another two weeks) Dr S said that the antral follicle count number usually is very closely related to the AMH number, and he expected my AMH re-test to come in anywhere between 8 - 11. So, good, predictable news. In fact, the whole appointment was just all about good news!

After the scan, we went through to the nurse's office to discuss our plan and have our drug training, which although was not scheduled for the day, they decided would be fine to do so we wouldn't have to make another trip up just to be taught how to do a handful of injections. I mean, really. I have done tens of thousands of injections. I am NOT freaked out by needles, only by the actual drugs themselves. Who knows what holy-hell they are going to play on my diabetes?

She gave us our plan, and discussed how it would all occur. We got our drugs in a little green cooler bag, just about the right size for a six-pack, along with a sharps container and enough alcohol wipes to do 36 injections - just a bit overkill. I only have 1 Elonva injection to stimulate egg growth, then about 5 Orgalutran injections to prevent premature ovulation, and other meds will be added later as they work out how my cycle is progressing. The FSH may need to be topped up, and of course there will be a trigger shot at some stage.

I got three scripts for antibiotics, plus blood-draw forms and a serial blood draw card to make things easier but it turns out that I won't have to do any in hometown, and it looks like there will be approx 3 more trips up to Hamilton (1 for scan and blood draw, 1 for egg retrieval, 1 for transfer) I think. Just as well we've found a really good motel. It will be hard getting time off work, because Hubby is just starting in his new position and I have a rigid weekly schedule, but I have given my employer over 1 years heads-up so there can't be any complaints there, I will just have to do a lot of prep work so my job can be covered appropriately. 

Oh yeah, and did I mention that I am turning bionic on September the 18th? More to come on that adventure... :)