Alex and Kathy Scott

Kathy on her 70th birthday with her husband for 48 years, Alex

Pumping for 25 years – My story – Kathy Scott.

Palmerston North.

It is now 35 years since I was first diagnosed with diabetes. Yes, (January, 1975) I remember the day – even the hour! I knew what was wrong with me before going to the doctor, but in those days one didn’t say what you thought … you started with the symptoms. The main one that was causing the most distress, was vaginal thrush. Then I added on a few other things, the huge weight loss, the thirst, the constant peeing …..’Oh’ he said rubbing his hands gleefully (after all it was first thing on a Monday morning) ‘do you know what that sounds like?’

Unfortunately I did! And as it is for everyone – life changed forever.

I was 35 years old and I was told I was too old for Juvenile diabetes and a bit young for elderly onset, but they would go for that one. It took 9 months to finally be sent to a specialist, who hit the roof and ordered me into hospital. I told him I was too busy.

We didn’t have HbA1cs in those days, but from memory my bloods were all consistently over ‘300’ which would have been around 13 in today’s terms..

In those days we were given one great ‘dollop’ of long acting insulin and the rest of the day was governed by its action. There were no Diabetes Educators and no Diabetes Society to turn to. On discharge from hospital the Doctor gave me a little pep talk. It was assumed that I knew ‘everything-being-a-nurse!’ I felt totally ignorant. It was one thing learning from a text book, it was another living 24/7 with it. The first morning at home I sat on the side of my bed dithering with the syringe hovering over my thigh. I fortunately had huge support from the Dietitians. They explained the action of the insulin in conjunction with the food intake. They were fantastic.

There were no glucose monitoring meters – one just peed into a pot several times a day – it started as soon as one got out of bed. Go to the loo, empty the bladder, have a drink of water, return to the loo  ½ an hour later, empty the bladder, take 5 drops of urine, 10 drops of water, drop in a tablet, let it fizz and watch it change colour, blue, green, yellow ORANGE. No sugar, a touch of sugar or horror of horrors, loads of sugar. One only got a blood test if the doctor thought things were not good. Then we had to get a form for a ‘series’ -. 9 am, 12 midday (before lunch), 3 pm. No one considered that at 12 midday you had to drive across town, and you could be kept waiting. They had no idea at the lab. what a hypo was and if they had been busy at 9 am and your blood wasn’t taken until 9.20 am then they made you wait until 12.20pm and of course you were in no way capable of explaining anything!

In 1980 I went to a private hospital to have a hysterectomy. My diabetes control went out the window – I had no idea that this could happen. Just as I was going down to theatre I was told that I wouldn’t be given any insulin as they did not want me ‘hypo-ing on the table! I finished up heading for keto-acidosis. I cannot describe the nightmare as I was so helpless. However, things finally sorted themselves out. Also around this time some blood-testing strips arrived on the market that could be visually read. I was seeing a private specialist and I showed them to him. He read the insert, wondered where I had heard about them (actually it was from a visiting top UK specialist) and when I told him he said that he probably had shares in the company and dismissed any ideas of using them.

In 1981 blood-monotoring meters arrived on the scene. I also met Alison Helm, Diabetes Educator from Christchurch – she talked to me about getting a meter and one of her comments was that I was intelligent enough to have one! (I bowed and scrapped the ground). My first meter cost $350.00, took about 4 minutes to do a test. It was very complicated. One also had to carry a special bottle of water to ‘squirt’ the blood off the stick before inserting it into the machine to get a reading. One had to work fast to do it all properly. My tests were all over the place, but doing something about it was another matter.

A Diabetes Clinic was set up around 1975/6 but I wasn’t given a referral until around 1982. I then progressed to four injections a day and while things were better I still had a very erratic graph. There was no instruction given about carb/insulin ratio. I only ever needed around 32 units a day, anymore and I had hypos all the time. In 1984 I was asked if I would like to try a pump. I was delighted to have the opportunity. Unfortunately by the time everything was ready for me, my mother had a coronary and I needed to take care of her. She died three months later. After that I rang the specialist and said I was ready so I went up to his office at the hospital and he discussed what we should do. The pump was rather large and I had to wear it on a belt outside my clothes – sometimes I would wear it under but it was very bulky. This particular pump only had 1 basal rate – 20 units over 24 hours. So we decided that was too much for me, so I had to dilute the insulin with sterile saline so that I got 10 units over 24 hours.  Then we had to work out how much insulin to have at meal times. Still nothing much was said about carb/insulin ratio. So we worked out a plan. I soon discovered that if I had a raised blood sugar I could have a unit or two to bring it down and by ‘hit-and-miss’ management I worked out a very good scheme. My night-time ‘highs’ evened out and I woke up with good readings. One drawback with this pump was that it had the most unusual batteries that were rechargeable and only lasted 24 hours and took ages to recharge. So travelling was difficult.  At this stage I was supplied with all my consumables from the hospital. I should say at this point that I was given all the equipment in a large hospital brown paper bag – syringes, tubing, batteries etc. and told to go home and ‘play’ with it – which I did. I got it all going and rang the specialist each day, including the weekends until we got a much more reasonable graph.

After 18 months I had to give the pump back as it was needed for a pregnant girl (I had 1 hour’s notice!)  I was told I could buy my own. However, I had just booked a holiday in Japan – I would be away a month. I wrote to a company that produced a very small pump and asked them if I could hire one for the time I was away. They obligingly lent me one. This little pump had 3 choices of a basal rate, none of which suited me particularly well. But it worked well for my holiday. Just as I was going to leave home to catch the first plane on my journey, the blood-monitoring meter decided to pack a sad. There were some strips available that didn’t need a meter, so my husband got some of those, but they were not as reliable. (It is very handy having a Pharmacist for a husband) When I got to Japan one of my friends there worked at a University Hospital and he took the meter to someone there who restored it to proper working order.

On my return to New Zealand it had been arranged that I call in at Middlemore hospital and they gave me a ‘computerised’ pump on loan. The idea being that if I liked this one, then I would purchase one for the huge sum of $3,000. We had great fun with this ‘computer’ bit. As very few people had computers and we certainly didn’t it was very difficult to actually programme it. We didn’t understand the ENTER button. We didn’t realize that we had to press that button each time we made a new entry. After several attempts which resulted in a massive headache, we realized and then we were away laughing. It was amazingly easy to use. I could have a range of 4 different basal rates over 24 hours, and I began to really understand how a pump worked properly. We still didn’t have the HbA1c measurement, but on the whole my tests were good.  This pump lasted me about 10 years. I had a couple of occasions when it didn’t function well and it was sent back to the States for ‘refurbishing’ – when it came back and I reconnected it, it went into overdrive and dumped a whole lot of insulin into me. I was none too pleased as I was asleep at the time. Fortunately I seem to always wake up if I am low in the night.  I still had the loan pump, so switched back to that and sent the other one away again. I was given a replacement. When that one eventually gave up (on Christmas Eve – of course) I went back onto 4 injections. I saw the specialist not long afterwards and I asked him, with tongue firmly in cheek, if the Hospital Board would consider buying some insulin pumps. Imagine my shock/delight about a month later when he rang and said he had a pump for me. The Board had bought 4. I was given a Mini-med. It was smaller and lighter and we got on famously together.

We were given our consumables for a while, and after a couple of years, when I rang up for some more I was abruptly told that there ‘was no funding for the likes of you!’.

Eventually of course the Mini-med was superseded and the time came for a replacement. Again I was out on my own, so in 2005 I bought a Deltec Cozmo pump.

Somewhere along the line I bought John Walsh and Ruth Roberts’ book ‘Pumping Insulin’ which is a great book and has helped enormously to understand the finer points of pumping. One of course, can have all the books, and read all the articles, and listen to all the experts, but when it comes down to it we ourselves have to put it all into practice.

I have heard Health Professionals say the most astonishing things – one considered pumping ‘excessive’ another that it was ‘a life-style choice that should be paid for by the patient who wished to follow that route’. Attitudes have changed over the years fortunately and we are not ‘blamed’ for our erratic blood sugars like we used to. The ‘you must be doing something wrong’ seems to be fading out and this has been replaced by

Diabetes is a chronic progressive condition – which makes much more sense whether we have T1 or T2.

So here I am 35 years down the track, ½ my life diabetes. I have no retinopathy, no problems with nephropathy, neuropathy, or heart problems, but still classified as ‘high risk’ because of age (yes, you’ve worked it out, I’m nearly 71) diabetes and hypertension.

I have had 1 cataract operation which was successful and a very slow-growing cataract on the other eye which is no cause for concern at present.

In the main I have had excellent input from the Health Professionals, even though at times I like to have a good gripe. There is still a lot of ignorance ‘out there’ about diabetes, particularly T1.

Over the years I have had a lot to do the local diabetes society and also attended Regional Meetings as part of Diabetes New Zealand and been to many national conferences. I’ve met the most fabulous people either struggling for themselves or a family member. The one’s that are gut wrenching are the young ones. In the late 1970’s we used to hold ‘parties’ for the families who had a child with diabetes. They were great times of fun and sharing. We had some incredible committee members who ‘cooked up a feast’. The dedication of those parents, who had little in the way of the ‘tools’ we have now to help them maintain reasonable blood sugar levels was amazing. I take my hat off to them, and also to our modern parents who are much more informed and have much more to help them – but it is still a hard slog and requires intense compliance.

It has been a great journey.


By Nic on 16 February 2010 at 9.24 am
Posted in Community, Insulin Pumps, Slice of Life, Technology & Equipment
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