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Faces of Insulin Pumping # 2


08 February 2006

Faces of Insulin Pumping # 2

(Please see new comments posted below artcle - 09/02/06)

I met Hannah Lawrence at an Insulin Pumpers - UK meeting last month at a London wine bar. Hannah's Mum was there with her, and you could tell straight away that they were a wonderful mother/daughter team -- elbowing each other one minute and watching each other with a respectful eye the next. Hannah was diagnosed just before she turned 2 years of age. (25 years ago!) Hannah's Mum was telling me many anecdotes about how hard it was to take care of her (then) baby as the nurses made her wring out Hannah's diapers to check her level of sugar. Obviously this was before home blood testing. Recently, I asked Hannah if she would agree to write about her new pump experience as she has been on it now for 3-4 weeks. Like so many people with diabetes she has that exquisite air of self-knowledge and courage. Here is her story:

I had mixed reactions when I told people I was getting an insulin pump - some looked at me in horror as if being connected 24/7 to a machine was a life-sentence. Others were very interested and thought it was a good idea. But it is a personal choice, and only I knew what it would mean to me. If I had to use a few words to describe how it makes me feel, I would say - freedom, control,

I have been diabetic since I was 18 months old, and I am now 27. My control started to deteriorate once I controlled my own eating from my teens. Up to the point of starting my pump this year, I was on approximately 8 injections a day, with an Hba1c of 9.5, and common blood sugars of 17+.

I cannot put into words how it feels not to have to inject, and to have an “external pancreas” as a colleague called it yesterday. I no longer have to stay up to a particular time at night in order to have my background insulin, I no longer have to set myself reminders to take my morning background insulin, I no longer have to get an injection out in public, or hide in the toilets to inject, I no longer have to eat extra calories if I am hypo apart from the initial hypo treatment. I haven’t tried exercise yet (naughty me!) but I look forward to being able to change my basal to deal with exercise rather than having to eat.

I have ignored my diabetes for far too long, but have finally come to the realisation that I need to look after myself and get better control, and I have been given a fantastic tool to achieve this goal. I still have to work out the correct basals but my control is already vastly improved, and I now feel very ill with blood sugars up at 17, whereas before this was normal.

Some diabetics are happy to have two injections a day and to eat specific amounts at specific times. If this is you and you are happy, then stick with it. If you are like me and you like to vary your food enormously, eat when it suits, not eat when it doesn’t suit, and eat more than 3 meals a day, I would highly recommend trying to get a pump. Quality of life is vastly increased after only a few weeks, and no-one is taking this gadget away from me now!!!

Thank you Hannah!


Anonymous wilson said...

I always find it surprising to hear of Type 1's with A1C's and b/g levels as high as Hannahs. I don't mean to sound harsh or smug or anything - but I have to ask how does it get like that?
How can a pump improve her levels when she was unable to get adequate control on 9x injections a day?
Unless the novelty of a pump is providing the motivation to get a grip of her condition I feel like I'm missing something here.

11:53 AM  
Blogger Elizabeth Snouffer said...

Hi Wilson:

Hmmm...can I ask - are you a diabetic or someone in the industry or just curious? I think you should identify yourself. I notice (you have left comments before) you have some interesting opinions and it would better help me answer your questions

If only diabetes was that simple! MDI therapy or multiple daily injection therapy can be very difficult indeed - and usually after 10-20+ years of being insulin dependent (IDDM) we are not talking abut compliance issues.

The greatest difference between a T1 and T2 is that T1's produce zero/zip/nada insulin. Exercise, eating right, losing weight et al. will not make a bit of difference to a T1, because we are missing a very important hormone and will die without it. OK, now what we have to do is figure out which insulins, how much of those insulins and when to take them will actually replace what our pancreas would normally do IF it produced insulin. For someone to even consider taking 9+ injections in order to attain control is absolutely ludicrous. It signifies FAILURE. There is just no reason to take so many injections with so many available therapeutic options.

To maintain control for a T1 or end stage T2 (which means the T2's pancreas is NOW also not producing insulin) is:
-Find astute clinicians who choose appropriate therapeutic options
-Demand vigilant review and coaching by clinicians/nurse educators
-Commit to constant adapting/review (both patient and clinicians) to changes in physio make-up

Diabetes is a serious disease and most people have very little education about it. Insulin is the most dangerous drug on the market...can you imagine injecting a substance in your body which could put you into a coma. It is all a bit of russian roulette. Modern insulins are better (analogues) but we are not there yet. Pumps are made for very ambitious people with diabetes who have tried everything and have failed. Pumps give you a 24 hour drip, + the ability to give additional amounts for food coverage. (Even if a T1 didn't eat, he/she still requires insulin.) "Google" liver, glucose and diabetes to find out why.

Hannah's only choice for adequate control was to take on the pump. I imagine by about 3 years of age Hannah already had a pretty good "grip" on why her mother and father had to inject her with needles everyday.

And sad but true, T1's have to beg for therapy that offers basic coverage in order to live a life without sugars that non-diabetic's would be hospitalized for. Gosh, there is no novelty here...just life and death.

9:41 PM  
Anonymous Hannah Lawrence said...

Hi Wilson

I appreciate why you think like that and would probably think the same were I not diabetic. Yes, I take part responsibility. I am not someone who eats regular (or healthy!) meals, and therefore found it very difficult to work out how to control my sugars.

There are several reasons for my poor control:

Background insulins do NOT work 24/7, and the way they work varies very much from individual to individual, so there is no way of making this an exact science.

On top of this you have someone (me) who grazes throughout the day, and either can't bare to inject for every little thing she eats, and therefore rebels and doesn't always inject as and when required, or can't easily inject in every situation (e.g. in a meeting) and therefore has to wait till she is able to get some privacy.

Having to inject an average of 8 times a day is a horrible thing for anyone to have to do, and the motivation to really try and control blood sugars is low. On a pump, I will take a bolus if my blood sugar is say 9, to bring it down to my target of 7.7. On injections, there is no way I would make myself have another injection for this small correction.

The final issue is overnight. I could not find a way to ensure my blood sugars were on target in the mornings, and this was very frustrating. I would wake up feeling unwell and lethargic, and the overnight highs were increasing my Hba1c's. On the pump, the continuous flow of insulin is like a miracle. I thought I had dawn phenomenon, where your sugars increase in the mornings, and when using injections can only be controlled by waking early to have some short-acting. But this wasn't my problem, the pump gives me the same bolus all through the night, and I have normal blood sugars on waking.

Some people find controlling diabetes easy, and for them I am happy. But for a large number of us it is very hard to do, and no one should be "smug" because others cannot manage.

10:16 PM  
Anonymous wilson said...

Hi Elizabeth
I'm a recently diagnosed (Aug 05) Type 1, based in London, aged 41. I work in advertising and I've just become a daddy for the 1st time. I didnt mean to remain anonyous, I thought my name would link to my email.
So maybe I'm just a newbie to diabetes, but I am having difficulty in understanding how people (like Hannah) are failing to control their condition. It does sound like her MDI regime was not the basal/bolus route that I think all new Type 1s are taught - which with a lot of input (and research by me) and self experimentation - works excellently for me. I'm not in a honeymoon period and my b/g levels are close to those of a non-diabetic. My last A1C was 5.7 (that was just after Xmas/New year when I was generally running at a higher level than normal.
I just think that it's not that hard to manage diabetes for anyone with a bit of motivation (and god knows I got my motivation from the threat of diabetic complications!)
I don't really understand how a pump will help her, though I admit I fairly ignorant about pumps. But I understood that a significant amount of self knowledge as well as the ability to count carbs and dose insulin accordingly was required. In other words, you have to understand the mechanisms for control in order to gain advantage from a pump.
I know everyone is different and each of us has their own problems and difficulties, but I am finding this diabetes thing relatively easy to manage and I am genuinely puzzled that so many others have so many problems.

11:35 AM  
Blogger Penny said...

Elizabeth, I can give another view on the pump. My son is 3. We are in the process of getting him on the pump. (We're waiting for the insurance approval) The reason we want the pump for him has a lot to do with some of the reasons you listed above, flexibility, etc. Also, he need such small doses of insulin. He only gets 1/2 unit of NovoLog per 25 g of carbs. If he doesn't eat 25g, then he doesn't get any insulin, which is pretty much unexceptable. If he doesn't get any insulin when he eats, he will go up too high. So, meal times are constant battles to get him to eat. Which is really unfair when he's not even hungry. I have to bribe him to eat. Also, if he is hungry and decides to eat 45g carbs, he still only gets 1/2 unit ( because he's 1u per 50g). At that amount of carbs, 1/2 is not enough and 1 is too much. So, you see my problem? I guess what I'm trying to say is that with the pump your insulin to carb ratio is more precise. And, don't get me started on the basal rates. Riley drops low at night, so I can't wait to decrease his basals at night. OK, that's it. I hope this helps, Wilson. ( BTW, my son's A1Cs have been normal, but it is because of A LOT of blood, sweat, and many, many, tears. But, even with constant monitoring your A1C can go up.)

2:05 PM  

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