People’s Stories

Parris‘s mum says “I enclose a photograph of my daughter Parris aged 14 years 11 months with her Animas IR 1200 pump.  Parris has now been pumping since January 2007.  It is the best thing “since sliced bread”.  I cannot imagine her having to inject – her readings are SO MUCH better.  She has been off on holiday on her own and still managed good control!!  We are still under the care of Leeds Hospital who have been brilliant!  Lets hope that more young people get the chance to go on a pump in the future.”

 

J is 13 and has been pumping since age 7…he was diagnosed at age 4. All I can say is that I wish he had been pumping much earlier. I see no advantage of MDI over a pump…of course you have to wear a pump 24/7 but it really isn’t a problem, it becomes part of you. J has always been very active, does a lot of sport and is a typical boy.

Jen from Somerset says “I’ve had diabetes for nearly 30 years but it’s been so long now it’s hard to remember exactly how long.  I’ve had an insulin pump for 2 years now and love the flexibility that it gives me.  I’ve always had quite good control but thanks to the pump it’s now even better. I took up golf a couple of years ago but kept going hypo while playing 18 holes so had to restrict myself to only playing 9.  Now thanks to the pump I can do 18 no problem… only wish I could play the game!”

Melissa Ford Holloway wrote:

“I lived in the US from May 2005 until October 2007. I got the DexCom STS in October 2006, before DexCom products were available in the UK.  My A1C went from 6.5% to 5.5% in 3 months after I got my first DexCom system and it hasn’t been above 5.6% since. I upgraded to the DexCom Seven in June 2007 and returned to the UK in October 2007. With my diabetologist’s support, I got PCT funding for my DexCom sensors in February 2010, having self-funded previously.

I test an average of 5 times a day, down from 8-10 before I got the DexCom. I get fewer lows from ‘stacking’ boluses because I can see how my glucose level is responding. I am also less inclined to overtreat a hypo because I can see that the hypo is resolving.

It is also great to know in the morning whether I am having trouble with my overnight basal rate just by looking. I used to expend a lot of effort, including frequent 1, 3 and 5 am fingersticks, to figure out what my blood glucose level was doing overnight. Now if there’s a
strange pattern I just have to figure out *why* and address it!

When I exercise, I usually wear a heart rate monitor in addition to my pump and my continuous glucose monitor. I use a training program based on my VO2-max test results to stay in a fat-burning zone for most of my workout. Using fat as my main fuel prevents exercise-induced hypos and is very effective for weight control. My glucose level either
stays steady or goes down just slightly during my workout. I go to the gym before breakfast 3 days a week, which I used to think would be impossible for me.”

Scott’s mum wrote: “Scott got his pump about a year ago now. It has changed his life! His hba1c is fantastic – it was never under 10 before. He is growing fast now (upwards), he is in control, doesn’t eat if he doesn’t want to, and the best part…I have my son back! No more mood swings, no fighting, he is just a happy go lucky child again (hmm as far as a teenager can be). His legs had lumps and bumps and bruises on where he was doing so many injections a day, now they are clear again. He is proud of his pump. I wish every child with diabetes could have one and if I had the money I would personally buy them all one. Scott goes off with his  friends and I don’t worry as I know it is there with him, it means I have given him his freedom back! I cannot emphasise enough what a massive difference it has made to his life and I thank you for your support.”

Lesley (INPUT’s Chief Executive) wrote: “I was diagnosed at 18 months old. By 2002 I had injected more than 40,000 times. My control was terrible – I would swing from high to low and back again. My mood swung between trying harder to be “good” and burnout as it didn’t seem to matter how “good” I was or how hard I tried, nothing helped.

My DSN told me it was likely that my injection sites were to blame, despite rotating them since I was very young, and even injecting in my calf to add in an extra site. She said I should either inject in my inner thigh or get a pump. It was an easy decision to make! I noticed a difference in my control from the very first day of using a pump. My burnout was extinguished by the amazing, predictable results. I was “good” after all!

This was before the first NICE technology appraisal on insulin pumps, and I had to buy the pump and infusion sets myself and after 6 months, apply to the PCT for funding by showing them what a difference the pump had made. I started on my first pump in September 2002, and before 6 months was up NICE TA 57 was published. My funding was granted without problem.

When I heard that after the NICE TA people were still struggling to get funding for pumps I wondered what I could do to help. I contacted John Davis of INPUT and he suggested we worked together to arrange a road show in my town. That was in autumn 2005, and that was the beginning of my time as an INPUT volunteer.

Now that John has retired, I am the Chairman of INPUT. I love doing what I do, and true success for INPUT would be that it no longer needed to exist. However, I think that’s a long way off and we will continue to be busy until and after the first generation of closed-loop becomes available. In the meantime we have a lot of potential pump users to reach!”

Anna wrote:

It was twenty-five years ago at four years old that I was diagnosed with Type 1 diabetes whilst living in Germany. As a child my control was very good, mainly due to the complete diligence of my parents and the very strict rules that were followed in Germany. There was no such thing as allowing yourself a treat when I was young. As I grew to a teenager and moved back to the UK, my control began to wain. My HbA1cs began to creep up and my blood tests grew further and further apart. It wasn’t until my early twenties that I began to realise the absolute importance of keeping good control. But as I started to increase my blood tests and my monitoring techniques improved, I began to realise things were a lot worse than I thought and for some reason no matter how hard I tried, I couldn’t seem to achieve an HbA1c better than 9.5%. In fact in my whole adult life, I had never achieved an HbA1c of less than 9%. After completing a JIGSAW (Juggling Insulin for Goal Success and Wellbeing), I had still only been able to improve my control by 0.1%! It was then I started to consider a pump. I spoke with my team who signed me up to the next pump start course, a couple of months away. After a few delays and false starts, I finally started life on a pump, along with 3 other people in my area.

Within 6 months on the pump and without having adapted anything else, my HbA1c had come down to 8.2% and within a year I had reached 7%. Eventually I also learnt to adapt my eating and the best way to test in order to get the most out of my blood testing.

It transpires that the reason I never managed to achieve good control on multiple daily injections was that my insulin requirements in general are 1.5 units per hour during the night and early morning and 0.5 during the afternoons. Anything more or less than that causes huge swings in my blood glucose levels. So it is no surprise that taking one large dose of insulin a day was never going to be able to meet that need. The pump however, can be tailored to hour by hour needs, hence it was the answer for me.”

Bev told us on our Facebook page: “I’ve had my pump for three weeks now and I feel absolutely awesome 🙂 the control I have has given me my life back 🙂 I’m able to do exercise again and enjoy it. Already lost a dress size x what a great invention, a life saver :)”

Sarah, mum of 6-year old twins, says:

I would have said Jack never “missed out” on MDI – I would do all the calculations to ensure he could have countless jags if needed, so he could eat as well as he does. However, nothing will take the memory I have of my twins tonight at supper. Their wee eyes lit up when I said they could have anything what-so-ever for supper tonight. The relief I feel knowing that wee wizard has taken over in doing those calculations is immense. I am totally made up.