A dose of empathy with a large dose of gratitude

It was the last week of August, just after a Bank Holiday in the UK. Oliver was still off school for summer, the sun was out and I started to realise there are few of these days left before the nights draw in dark and the weather turns Autumnal. So, off we went camping in our trusted and slightly rusty old VW campervan.

York is one of our favourite places to camp, our favourite site is right next to the river. We come here often and watch the ducks, swans, geese, wildlife, stare at the stars and walk into the nearby village. The ancient city of York itself is only 10 minutes away in car. On this occasion, Oliver brought a friend with him and they ended up having water fights and “fishing” (trying to catch fish in a plastic tub) by the river on the campsite.

How is this relevant to The Pendsey Trust? During the water-fight Oliver’s Omnipod (the disposable part of his insulin pump that he wears on his arm) fell off. No big deal, this happens quite often, maybe twice a month. We simply put another one on. We also carry a Novo-rapid insulin pen as a back up too.

Our camper has a small fridge that we no longer use to keep the beers or wine cool; since 6th  December 2013 we use it to keep insulin cool and store diabetic supplies in for our camping trips. I went to the fridge to get another Omnipod.

There was none! Nevermind, at least we have the sense to carry a Novo-rapid pen. We had plenty of these with us so I thought everything would be OK for him to inject for 24 hours until we got home the following evening. Next, I remembered that we had no Lantus, a basal insulin used alongside the novo rapid pen. Injecting novo-rapid is fine for bolusing, but without a pump novo-rapid can not be used for basal insulin. For those that don’t know, bolus insulin is quick acting and used at mealtimes to provide the insulin required for the meal. Basal insulin on the other hand, is a “background” one which makes sure there is always some insulin in the persons body. Without basal insulin, a serious condition called Diabetic Keto-Acidosis (DKA) starts to occur within hours, especially if the person is fasting. DKA is a coma-like state that can be fatal. Oliver would be fasting as it was already the evening and clearly he wouldn’t be eating overnight whilst asleep.

So, at this point we had no working insulin pump; this does not matter too much as it is a luxury anyway. We can inject instead, but were missing one of the types of insulin needed to do so. We had also drunk some of the afore mentionned wine and beer, so driving home in el Rusty was also not an option. It was 8pm on a bank holiday Monday, no GP was open to get a prescription. At this point I should have been panicking, but I remembered I had another couple of options:

  1. I am in a Facebook group called “Help! We forgot our Type 1 Kit” and in such emergency situations members request emergency diabetic supplies in the hope that another diabetic is nearby and can help. A bit of a long shot, but I posted a request for either an omnipod or a lantus cartridge & pen.
  2. My other option was to just bolus with the novorapid, but also test every 2 hours (including through the night) to give a correction dose and also ketone test every 2 hours and take the required action if ketones became present. Ketones are extremely serious and can be fatal.

At this point I was resigning myself to the 2 hourly testing, but was slightly worried he would be unwell and have disrupted sleep. I thought of the parents of diabetic children in India and how difficult it must be for them to try and manage this condition with very limited supplies. We are lucky that although there was no pump or lantus/basal insulin, at least we did have plenty of novorapid. We also had an abundance of testing strips, including blood glucose and blood ketone strips. It really isn’t too bad and I was trying my best to be grateful for what we DID have, I am aware that many of our children simply do not have any testing strips, whilst others have an allowance of one per day. Here was I with around 50 of them, plus about 30 ketone strips. Although it would be difficult and tiring that night, it was possible to keep my son alive and it would only be for one night, we were planning to go to our warm, secure, affordable house with a comfy bed, heating, double glazed windows and a refridgerator full of both food and insulin the day after anyway. I can not begin to imagine how difficult it is for our families in India who are trying to keep their child alive with no supplies. The families who have to chose between paying rent or paying for insulin. The families who have more than one child and have to decide whether to put food on the table for the family or pay for insulin for their diabetic child. How must it feel to know your child has a medical condition that is always fatal if not treated with insulin, but insulin costs 70% of your family income. Imagine managing to buy some insulin, but is is rendered useless by the 45 degree heat as there is no refridgeration in the mud hut you live in? How must it feel to know that your child is ill and will die but you can not even afford the bus fare to the Doctor, nevermind paying medical fees or ongoing expensive medical costs? How must it feel for a grieving parent to be relieved by the death of their child because the financial burden is also relieved with it?

This is why I chose to get involved with The Pendsey Trust. It is not about politics or religion, simply an act of solidarity as I envision a world where every young person with diabetes has the same life chances as Oliver.

Jo

(For the record, a lovely lady called Jane saw my post on the Facebook group, she lives 5 minutes away and kindly drove to us and gave us 2 omnipod’s and a vial of insulin. We are keeping the extra’s in the van for future use.)

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