Monday, April 29, 2013

I've decided to get an insulin pump

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

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

- - - - -

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

- - - - -

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

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

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

Friday, April 26, 2013

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

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

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

How it went:

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

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

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

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

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

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

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

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

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

Hubby had to change into the glamorous hospital moomoo:

Fortunately, Hubby's gown wasn't open at the back! Image from:
The nurse came back and put a tray full of stuff to put the IV line in on the table, and went out again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So, it has been a very good day!

Monday, April 22, 2013

Preparation for second surgical sperm retrieval

Since the first surgical sperm retrieval procedure (TESA/PESA) failed to produce any sperm, we have been rebooked for another one.

This time, instead of just a needle, it will be a testicular biopsy. A 3cm incision. Last time the needle biopsy wasn't supposed to be super painful, and it was. I can only imagine what this one will be like, but my money would be on "worse". I sincerely hope to be proved wrong: for this procedure to go smoothly and be much, much less painful for dear hubby. Please please please.

There is not a great deal of information about surgical sperm retrieval online, and without trawling numerous forums there is little detail about preparing for the experience either. So I have decided to write down here what we are doing to prepare for this next procedure... which is in 4 days time!

How to prepare for a surgical sperm retrieval procedure (from the woman's perspective):

First, I recommend asking your doctor as many questions as you need. I have a habit of emailing a big huge list of questions to our RE and getting some shitty, unsatisfying responses back. Sometimes it is better to talk to the nurse. Or phone the clinic to get a human to talk to. For this our second SSR procedure, we were basically told everything about it directly after hubby was recovering from the first one. That is no time to discuss future procedures. In fact the RE was even talking about it DURING the first procedure. We have not had any follow up appointments, and I had to badger them a lot for this second appointment. They are really slack in their communication. So don't you put up with it like we have. I only stopped with the avalanche of questions (which, as they were basically going unanswered, was making me frustrated) because hubby suggested that we just chill a bit, let them do their thing and get the next appointment sorted. Points for looking towards the future!

Second, do your research. There are videos of the procedures on YouTube if you're not too squeamish. Familiarise yourself with the various types of procedure, as then you can ask intelligent questions and understand the doctor-lingo so much easier.

Third, don't trust your doctors completely. I don't. I always rely on my instincts and the level of care I prefer for my family and myself is not always the same as what the RE's office is offering. To them this is their work. It is everyday, routine and possibly even slightly boring to them. To you, it is a major event and it can be traumatic. To give you an example: after the last procedure we had to wait around for a while before they would release us, but hubby was still quite stunned from the op. A simple thing like a blanket in the car to wrap him up and keep him warm afterwards would have been intelligent. And it's things like that which you can do, but your doctors can't. So prepare for having a husband who is in a bit of shock and pain, and think about what you can do to make his life easier.

To help with that I have made a list of items we are packing for Friday:

  • Ice packs (these should be small enough to go inside the undies, near the op site)
  • Non-fluffy gauze pads
  • Tight "supportive" undies
  • Tramadol (painkiller - no driving for hubby on this one!)
  • Panadol (3 x before the op, plus maybe some afterwards too)
  • Neurofen (as a backup only or instead of the Tramadol)
  • Blanket / duvet (for in the car to make hubby comfy)
  • Pillows
  • Other meds (it's so easy to forget, and such a hassle when you have to get access to meds outside of your home town)
  • Valium (we would like to have 1 tab available for hubby before the op, to calm nerves, but won't necessarily be using it)
  • Bottled water (hubby won't have been allowed to eat or drink for 6hr before the op, and water is all he wanted directly after the last procedure.)
  • Snacks (choc bars, biscuits, etc)
  • Towels (no specific reason, but they can be handy. Think propping up knees or feet to help get into a more comfortable position in the car on the drive home.)
  • First aid kit (since we have a 3.5hr drive home after the procedure, I want antiseptic liquid and bandages available if things go bad on the way home. Hope like all hell I don't have to use any of it though.)
  • Purchase extra data plan for the phone (so we can access email, web, maps, on the go. This makes me feel quite a lot more "able" when having to navigate a strange city on my own. And I will be pretty much on my own afterwards since the pain meds make hubby loo-oo-oopy!)
  • Printed maps (mark the following places: motel - we go up the night before the procedure, fertility clinic, a park or lake where you can park up to rest or eat lunch or just think and regroup, a cafe (for before the op), a restaurant (for dinner the night prior), a good bakery or place to buy lunch (for after procedure when hubby will be in no fit state to eat in a cafe amongst the general public), a service station, a supermarket, a pharmacy, plus any other sites that you may need to access in a hurry. I am not the best navigator on my own, so having the backup of pre-planned and mapped destinations will make me a much calmer driver)
  • RE appointment letter (because I always like to have a physical record of my appointment in my hand. You would be surprised how easy it is to forget exactly what time you are supposed to be at your procedure! Have the letter to hand lets you check and get it right.)
  • Entertainment (there will be waiting. Like, fertility clinics seem to specialise in making you wait. Plus as well as things to do in the waiting room itself, you want something to keep your brain from going crazy when you're stuck in the motel room, or waiting for hubby to reappear from the operating room. A book, a magazine, or if you're like me, you are totally addicted to solitaire on your iPhone...)
  • Clothes and toiletries as per normal for a night away.
  • Phone charger
  • Money / credit card for unexpected purchases while on the road. One time we had to buy ear plugs because the car windscreen came partially unstuck and made this horrendous trumpeting/howling noise. It was safe and we got it checked by a mechanic as soon as it occurred  but that sort of purchase is strange and unexpected and you need a couple of dollars handy for the unexpected.
* Note about valium, tramadol etc... Hubby is going along to see the GP tomorrow to discuss which of his current meds are ok with the anaesthesia he will be having, and to ask for prescriptions for pain relief and calm-down stuff. Much better to have it before the op and not need it, than to be prancing around a strange out of town pharmacy with a man-in-pain in tow.

Fourth, if you're not sure about anything, call for help. Have those numbers handy! Go back to your RE's office. Here in NZ they can prescribe other things too... we had left hubby's blood pressure meds at home, so the nurse was able to call our GP and get a one tab prescription organised and signed off by the RE. Yes it was a hassle, but at least hubby was cared for properly.

In what might turn out to be good news, our RE (you remember, the one who couldn't manage to find any spermies) is not going to be doing this op. To give you an idea of the level of communication we've had from this clinic, we do not actually know who will be performing the op, but my gut tells my it's simply got to be better than our current RE. Maybe she got spooked after I asked her to send all our case notes to our GP? hehe

So wish us luck and keep everything crossed that they find what they're looking for on Friday.

Now, some diabetes stuff. Pharmac in their wiseness decided to reduce the number of different blood sugar meters available in NZ down to just 3. That's right folks, you can only choose from 3 different meters, but if you consider that they are all made by the same company, and two of them take exactly the same test strip, then it just looks even grimmer.

I was not happy to change meters. My meter is fine, and it would cost me money and time to change. I think it sucks massively that the NZ government is failing to really listen to what Type 1 Diabetics need. Don't treat T1Ds like Type 2s!!!

Anyway, Pharmac let everyone know that you had a set number of months to change over. Fine. I still had a bit if time. Last month I went to get my repeat of old test strips and the pharmacist says, sorry, no, can't give them to you. Even though you have already paid for 3 repeats and only been dispensed 1 repeat. Even though you are a T1D and need this stuff to live. Even though you have a valid prescription. Even though the changeover hasn't happened yet. You will need to get a new meter. Pronto.

Gah! Turned out that the pharmacy had been running it's stocks low to the point of running out early and couldn't even order any more test strips in for me. They just weren't available anymore.

I wish I wish I wish that healthcare professionals would recognise what a living hell this can plunge a T1D into. The stress and panic. Plus I very easily slip into panic mode and I get really mad that there was nothing I could do to prevent this from happening. It is the only time when I resent diabetes - and event then I don't really resent diabetes as it's a part of me and without it I wouldn't be the same. But I seriously resent other faceless organisations and people getting in my business about my diabetes. You don't know what it's like. One flick of the beuracratic wrist on a keyboard and my life is all unsettled for more than a month. I mean, it's not like some other medicines where if you don't have it for a day or two you'll be fine. This is the sort of thing where if you don't have it, it's a complete f*cking disaster.

So instead of working at my job, I spent the afternoon driving between doctors office to get prescriptions, a new meter (piece of crap that I don't trust, it's not accurate enough!), back to the pharmacy. And to make it even worse, the nurse at the docs office screwed up the script and gave me less than a third of what I need. She didn't even read my prescription history, just wrote me a "Type 2" script. She caused me to waste money on an incorrect script (I didn't spot it, the pharmacist who knows me did thankfully). Then because meds are dispensed in thirds (repeats) I had to go back each week for three weeks to get... another 2 measly boxes of strips. Sigh.

Today I went to the docs to get a new script written. I checked it while standing at the counter, and it was wrong again. Still not enough strips listed. "This now says ten times a day - but I test 14 - 16 times a day. Can I get more?" I ask. Nurse responds: "No. You'll see I wrote ten a day, but they will only ever give you 2 boxes at a time." "Really??" Her: "Yup."

Well, I thought that can't make sense. If the script says I need 10 a day (it's wrong, but it's more right than it was at 4 a day) then why does mitte: 2 packs override it? How the hell is the doc supposed to set dosage of anything? I asked my pharmacist whose a good guy to help me out. He called the nurse and turns out she was working under the assumption that there was a limit of 2 packs per repeat for diabetics. There's not. Insulin dependent diabetics in NZ get access to as many strips as they need according to the pharmac website (one small blessing). So he got the script changed and faxed over, and gave me a bunch more strips.

(Note: I hadn't run out of strips completely. No, you can tell that I am not like that. I have a certain "level" of supplies I like to keep at home. So I normally have close to 10 boxes in my cupboard. That should keep me going for several weeks. And when this changeover happened I very quickly ran my stash of strips down. I only have 3 boxes left now. And this means I am cutting things close, considering it is HARD to get a reasonable amount of strips out of my nurse at the GPs. I will keep working on her. In the meantime I am trying to build up a decent stash of new strips before making the actual switch to my new meter.)

I know it's ridiculous to complain about strips when so many people around the world can't get what they need due to insurance restrictions etc, but here there are no restrictions. And that's my point. It was just sheer incompetence that was the problem, mixed with a lack of trust on the nurse's part. And she's the one whose been to all these extra diabetes training workshops.... doesn't know jack about T1D that's for sure. This meter changeover has cost me upwards of 16 boxes of strips that I will never see since the scripts for old strips can't be filled, and the first new script has been superceded. Gah, what a waste.

Solution: if T1Ds are allowed to have as many test strips as they want (and lets face it, you can't really "overdose" on them, it's a medical consumable tool, not medicine per se) why not put your money where your mouth is, eh Pharmac? Why not let any T1D just rock up to their pharmacy and say, "I test 16 times a day" and have the pharmacist calculate the number of boxes to dispense, then give it all at once. None of this splitting it up into thirds shit. I know you do that because a lot of patients never collect their repeats so it saves wastage. But, hey, diabetes is not really like that. This stuff is going to be used. So why do I need a prescription each and every time? Why not just get one prescription to kick things off, then let the pharmacist and diabetic work it out between themselves... that would be, oh, wait! Convenient to the patient! Nooooo we can't have that now. Better make it so complex and time consuming that it will drive folks mad with rage.

In other news, the cat went to the vet today. He's done something random to his eye, such as running into a rosebush or similar. Has small white spots on his eye just exactly like small puncture wounds The vets words were "thanks for coming in with something interesting to show me!" lol poor kitty. He will be fine, I must go put ointment in his eye now...

In other other news, we got 3 new chicks in spring and now that it's autumn, one of them is the most glorious and beautiful rooster... sigh. At least I have two places lined up to take him should the neighbours start complaining. I think he's lovely. Illegal, but lovely.

That is all. I'm sure you'll hear more from me at the end of this week. Wish us luck!

Thursday, April 18, 2013

CPAC form download

You can now access copies of the PDFs of the CPAC form that the Health and Disability Commissioner's office sent to me here: