Insulin Pump Application

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

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

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

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

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

HbA1c results: 42 mmol/mol = 6.0%

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

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

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

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

Here are some pretty graphs to help explain:

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

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

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

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

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

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

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

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

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

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

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

I've decided to get an insulin pump

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

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

- - - - -

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


- - - - -


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

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

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

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

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

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

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

How it went:

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

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

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

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

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

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

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

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

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

Hubby had to change into the glamorous hospital moomoo:

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

So, it has been a very good day!

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!

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: http://kaitake.blogspot.co.nz/p/resources.html

So we've just got home from the emergency room

Warning: this post contains graphic descriptions and you may wish to click away now.

We got back from A&E tonight at 10.45 after taking hubby in to be checked over as we suspected possible post-operative complications.

To re-cap: the surgery for sperm retrieval was on Friday morning. Hubby worked that night, and also Saturday night. So not resting as much as required, but it was a big job and kind of unavoidable.

There was swelling on Friday immediately from the procedure of course, but it gradually got worse until his right teste was 4 - 5 times normal size. It is now Sunday, 3 days after the op, and this morning when he woke there was additional bleeding/bruising under the skin.

Late this afternoon we were having afternoon tea and hubby said he felt ill. He was dizzy, had shooting pains in his thighs and lower torso. He felt woozy and felt uncoordinated.

I took him home and cooked him dinner while he rested and drank ice water (it's blazing hot in the middle of summer here. Seriously you can get a sunburn sitting in the shade almost!)

He was exhausted, and after dinner I read a bit online about what to check for post-op infection / complications / shock. When he mentioned how yuck he felt with what appeared to be a fever and that there was now pain in his calves as well, I decided it was best to get him checked by a doctor.

We bundled ourselves quickly into the car (forgetting even to close the back door) and headed off at 9pm to the emergency clinic. There are two of these clinics in town and both of them close at 8pm :( So off to the ER we went.

The triage nurse saw us at 9.30, and we were relieved when it turned out hubby didn't have a temperature after all. Maybe just the heat of the day or exhaustion or his body fighting to recover from the op, she suggested. She had a look and made sympathetic noises when she saw the swelling.

At 9.38 we were shown into a private room in A&E, with a nurse appearing to do basic observations and vitals at 9.42. Blood pressure was fine (much better than during the actual SSR that's for sure!) She also had a look, and described other cases of testicular swelling she witnessed, using her hands to indicate the size of a grapefruit (!)

About this time hubby did a count up on the number of people he'd had to "show his nuts to" in a single weekend, not including me. Answer: 6.

At 10.30 the nurse came and asked for a urine sample to test for the presence of blood. When it came back negative, and because hubby was feeling so much better and getting inpatient with having to wait around, we decided to leave at 11.45 and come home. We are literally within 5min walking distance of the hospital so it's not too much drama should we need to come back in a hurry.

The nurse registrar advised us to stay, saying that the burst blood vessel inside could potentially cause blocked nerves. But hubby and I were both satisfied that waiting for the doctor would just waste time as he didn't have a fever, had normal vitals, and would most likely be seeing his GP in the next day or so anyway. She signed us out ok.

What a night. I am absolutely exhausted and I feel simply horrible that hubby has had to go through this whole thing. He makes sure to tell me that the decision to go through with this procedure and the next one is his decision too, and that shit happens. He's looking lots brighter now and is happily resting up in the man cave out back. But we're both glad he got checked, just knowing the vitals are fine is a huge relief, and he did appear quite ill earlier in the evening.

Yeah, so cross fingers we see some actual recovery tomorrow!

What a surgical sperm retrieval procedure is really like

It is over and it didn't work this time. No sperm were retrieved. :(

We will be rescheduled for another procedure later in the year.

:::::   I started writing this post from a green sand chair in the park, as my husband preps a sound system for a live band Friday night (post-op). There are cicadas and birds and people putting their picnic blankets down on the grass. I am finishing the writing and posting it Saturday afternoon (recovery). :::::

So, they story from the night before...

We travelled up to Hamilton Thursday afternoon before the procedure was scheduled and stayed in the same motel as last time we were at the fertility clinic.

That evening we went out for a large meal at Lone Star and then a bit of a walk around the lake. I met a new type of duck: the Australian Coot!

I felt like I didn't sleep very well. The pillow was too high and the air was hot and humid outside. Putting the aircon on dried the air out and was too noisy to sleep with it turned on.

Turns out I must have fallen asleep in the wee hours because hubby woke up before me at about 6am. He skipped breakfast and I just had quick tea and toast.

We drove over to the clinic for 7.30am (as advised by the nurse who phoned earlier in the week said to do) and when we got there the building was locked! I pushed the call button for Fertility Associates and I could hear it ringing. Right then our nurse turned up behind us and opened the door. Seems that the other nurse who advised us to arrive half an hour early was talking out a hole in her head.

We got in and then waited in the waiting room while the clinic livened up and people arrived. Our nurse took us through to the recovery room (where we were seated both pre and post-op).

First it was consent form time, and then questions about drug allergies. Then our RE came in to check the same things and explain the procedure and draw a diagram. We would do PESA/TESA. The first PESA with a fine needle aspiration, the second TESA if that didn't work with a thicker needle to try and get a bit of tissue, and the final option would be to make a 3cm cut and take a biopsy.

The embryologist also came and introduced himself and explained that he would be next door in the lab checking the samples as they became available. He was also helpful in explaining how any sperm recovered would be frozen into straws, and assuming things went well, he hoped to get 2 or more straws-worth. He told us that with the simpler procedure we would know results right away, but with the more complex biopsy options it could take a couple of days, because of the need for manual dissection. And then any frozen straws would need one straw test-unfrozen to measure how many sperm would survive the thaw. This made some of the timelines we'd been given earlier make more sense.

The nurse asked hubby to change into the white surgical gown, put our gear into the wooden locker, and she then came back to accompany us into the OR next door. It had a large full height wooden door that opened automatically. Very star trek!

Once inside it was very busy and a little chaotic. Hubby was asked to lay down on the bed and both the nurse and the RE fussed over the bed position to check he was comfortable, giving him more pillows and getting him to shimmy up the bed. End result: the tiny operating table was not designed for a full grown man! Feet off the end!

I was seated on a chair at hubby's shoulder. I had asked previously if it was appropriate/ok for me to be present and was told yes that's fine.

Once hubby was draped and the automatic hatch to the embryology lab was opened, things became more focused. The blood pressure cuff was attached and the pulse/ox monitor put on his finger. The lights were turned on. In the room was Hubby, me, the RE, our nurse, the other nurse (wasn't introduced to her), and the embryologist through the hatch in the lab.

The RE asked to be passed the local anaesthetic and prepped hubby for what it might feel like. He winced, and she injected heaps: more than the amount you'd get on a typical HbA1c blood draw. It was angled all around the right side and the wincing stopped pretty quickly.

The RE did a few tests to make sure the area was numb then started with the first small needle aspiration. This was literally just a syringe (larger body than a U-100 insulin syringe, but only just. The needle would be about 10mm long at most) that was injected then used to suction liquid from the epididymis, which the RE was pinching firmly to keep steady.

The first aspiration didn't get much, maybe a couple of bubbles. Our nurse organized a small petri dish of culture from the hatch and held it in the flat palm of her hand while the RE drew up and flushed any material out of the syringe back into the dish. She wasn't hopeful about that first one, but they passed it back to the embryologist to check while she did the second.

The other nurse was quite small and she mainly dealt with stuff that didn't catch my eye! I honestly can't remember her doing anything - but I think it was just because she was so quick and efficient :)

As expected, the first aspiration had nothing in it, but neither did the second or third which was a total bummer. I know hubby had really been hoping for that to be it. I know he didn't particularly relish the thought of moving onto more invasive procedures. I kind of felt a cold sinking in the pit of my stomach. Like all the nerves I'd been building were saying "Yup, no luck here." But I tried to stay strong and focused on hubby as he was clearly upset by this news. It's a tough thing to digest, being told they can't find sperm in a room full of people when your bits are all exposed. He was incredibly composed and so brave.

The RE quickly decided to move on to the larger needle into the teste itself. (this would hope to get small slivers of tissue with tubules. Tubules are where the immature sperm live).

She said that she would administer more anaesthetic (and do a little haircut!) and although hubby looked like he felt this one, it was nothing compared to the massive flinch/grimace he gave when the big needle went in. He would later describe the pain as similar to kidney stones pain. The RE got 3 attempts at this process before hubby was quite obviously in too much pain. He was incredibly brave about it and I admire him greatly for his strength. Each time they would flush the butterfly needle arrangement out into a petri dish, but if they were expecting a 1cm long piece of tissue then this was a failure, as they only got tiny pieces about the size of an ant. It looked like they hit a blood vessel as there was quite a lot of red (probably only a few drops in reality) and I did start feeling a bit faint.

Hubby was by this stage in a lot of pain and kept asking for the RE to stop squeezing. She did a couple of tests to see what hurt and when he couldn't tell that he wasn't being touched, but was still in pain, the procedure was called off.

He would later describe the pain as quite excruciating. This makes my heart hurt; that he has to go through this once and have it not work. But then the thought of him having to endure it again is just so awful. But he is wonderful and tells me to put it out of my mind; that he would do anything for me.

- - - [    break in typing so I can get a tissue, crying :-(      ] - - - -

It appeared that the anaesthetic was wearing off, perhaps due to the effects of the scar tissue from the vasectomy; as the anaesthetic was injected above the RE suspected that the scar tissue from the vasectomy may be blocking it from reaching the teste lower down. Or perhaps it was just not enough, or injected in the wrong nerve?? We'll never know.

The nurses began turning things off, lights, pulse-ox machine, putting things away, and re-draping hubby more modestly. He was given 30mg codeine, which made him loopy. The RE talked about the possible future biopsy, and how she wasn't going to do it today; an anaesthetist would be required as he would need some sedation. The efficient nurse asked whether we would like tea or coffee or milo?

All through this hubby's blood pressure was high. It got higher after the op. We were led (carefully! yes he was walking) out of the OR and back to the recovery room. They brought in tea and creme-biscuits, later an ice pack arrived.

We were told it would be a 15 min wait, but because my phone went flat I had no idea what time it was. I got hubby's phone out of the locker. It was cold in the room so I turned the aircon off. His feet were cold and I couldn't find any blankets in the room. Hubby was very sore and doo-lally from the codeine and shock. I got him to drink a sugary cup of black tea and eat a couple of biscuits.

I was considering when to call / hunt down our nurse when she arrived to check hubby's blood pressure. It had gone up again. They were worried about this. The RE and the embryologist also came in separately to debrief us. Because hubby had missed his dose of blood pressure medicine this morning, they wanted him to have a tablet as soon as we were back in the car.

At one point he was feeling a bit sick and claustrophobic, so the nurse agreed that we could go drive down to the lake, take the bp tablet, relax, but come back in half an hour once his blood pressure normalized and have another BP check. Good news.

We got a gauze-dressing for the blood, the obligatory tight undies, clothes, and we were off. Hubby seemed better once he stood up, taking the pressure of certain parts. We go down to the car and hunted for the bp tablet.

Where is that goddamn tablet?

Answer, at home. 3 hrs away.

So I went back up to the clinic to get a one-tablet script for the medicine. This involved going to the waiting room, discovering the "procedure" side had a locked door and no reception. Going back to the other side of the clinic and explaining myself to the receptionist. Going back to the waiting room. Feeling awkward as I interrupted another couples waiting time. Finding my nurse and explaining what we needed.

I knew the name of the medication. But what dosage? 120mg? I think? I could call his GP? The look of relief on her face when I said this was immense. Oh, and flowers arrived for her from her husband- on her birthday!

And then Internet Explorer crashed the party. I work online a lot, and I teach, so I had to gently point her in the right direction as she spelled things wrong, couldn't connect, couldn't login, used the wrong bookmark for google etc... We found the GP clinic phone number eventually and she got in touch with hubby's nurse. I took about 6 times longer than it should have if she had just let me do it (!) and all through it the RE's advice "not to leave him alone AT ALL for the rest of the day" was running through my head. And here I was, leaving him alone and in pain less than 2 mins after leaving the clinic!

It was a good thing we called the GP back home because the correct dosage was only 12.5mg. Our nurse got a prescription for one tablet printed then we went back to the other side of the clinic to find another doctor to sign it. That done, I got (terrible) directions to a pharmacy, and high-tailed it back down to the car.

Hubby seemed fine, better even. I drove to the pharmacy and he decided to come in, as standing felt better. The pharmacist had to check that we did indeed want just one tablet. Then we went in search of a cool bottle of water as we both felt dehydrated. And chocolate. As hubby deserved the biggest chocolate bar ever for facing that situation with such courage. And, it's chocolate. You don't need an excuse.

We found a supermarket. I was getting worried about being slightly lost (codeine-hubby was navigating, you see) but hubby wanted to find a service station instead. We drove on. I found a dairy and got water and 2 chocolate bars. I found the lake and we sat there for another 10 mins before returning to the clinic.

Once upstairs again we went to the other side and asked the receptionist to alert our presence to our nurse, then went across to meet her. She took us into the same office where I'd watched her battle with IE and we waited again.  You have to sit in a chair and wait for everything.

There was a door to a store cupboard open off to the side. Hubby looked in it from his chair and whispered that it contained an open, unlocked fridge full of drugs. With a handy sign above it stating how you had to phone a security company before opening the fridge. Thousands of dollars of Gonal-F etc just open and unsecured. Lol

Our nurse came back in and quickly shut that door. She re-checked hubby's bp and is was coming down thank goodness so we were given the all clear to go home. I drove most of the way, but dear hubby drove the final third, and now is out working tonight.

No heavy lifting, no bending, just sit and work the EQ and faders! I'm on gofor duty :) p.s he's walking a bit like a penguin!

UPDATE: Friday night while hubby was working, I was sitting beside him at the mixing desk in the middle of a very busy park. I was getting him water and neurofen and keeping an eye on him. But when the band was playing and it got dark, with pretty lights all around us, and hundreds of people enjoying themselves, I just felt so strange. Like I knew I was tired, and stressed, and that there was this emotional pressure building in me. I kind of wished I could cry as it felt like I might snap or burst or something. I was thinking about what the negative result meant, how we thought it was just the vasectomy being the problem but now it might be honest MFI. How we would need to do a more invasive procedure to continue. How I hated the thought of hubby being in pain. How much I love him. And just, how the stupid RE co.cked it up. How I want a second opinion. How I don't fully trust her. How I had started sneaking, letting my guard down, and looking at baby names the other night. How maybe that was a stupid waste of time and I should have done something productive. How much of my energy in these recent years has been focused on infertility and how I thought I had managed to control my thought processes so it didn't consume me. But it does. It's all flooded back. A million times bigger. Not as hard because it's not a completely new feeling, different. Because now there is another problem. A problem that no one can deny. I have always felt like a faker in the IF community (and have been trolled online for it) because a vasectomy is somehow not "real" IF. Well, it stops conception pretty darn well. But now there is this new thing which was one of my worst nightmares, and it has just woken up and lifted it's shaggy head in front of me, saying hey, you didn't expect it to go right, seriously did you? And no, a big part of me was terrified that it wouldn't work and we'd find nothing. That part has just been proven right. Although I can't keep from hoping. I can't call off the optimism just yet:

• that was just one side, the other side may be fine
• it seemed to be that the operation was a mechanical failure. They just couldn't get enough of ANYTHING out. This is what made me suspicious of the REs skills in this area. I never asked her how many times she'd done the procedure.
• the biopsy (open surgery) option is still available to us, and hubby has said numerous times yesterday and today that he is willing to proceed.

If anything surprised me about the procedure itself, it was how in my mind it was super-high-tech. And I guess it was, but basically it was just needles and injections, suction and microscopes. Hell, nothing I personally couldn't manage myself if given training. Not that I would do it, just that it was such a simple and kind of unguided, low-tech procedure. The physical nature of flushing the syringes. The manipulation of real tissue. It was just kind of crude, poking a few needles in there expecting to find tiny tiny cells. Why should I be surprised that blood and other fluid is all that came out? I dunno, it just struck me in the OR how nothing about the process (expect the presence of the embryologist and the cryo gadgets) had to be done in a fancy fertility clinic. It was outpatients stuff, and did not appear complex. It did not appear worth the money that was spent on it. And that sux, that it was funded but still didn't work.

Our first actual real piece of fertility treatment failed. 2013 makes 9 years. But also only just 2 days. :(