Wednesday, May 22, 2013

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
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!"