So I may have told a little white lie. Only a tiny weeny one.
You see, I’m not actually type 1 diabetic……
Technically I have surgically induced diabetes. So I can put any number to it that I like! Type 4, type 5…. Or you could call it Insulin-dependant Congenital Hyperinsulinism if you fancied a tongue twister.
In summary, I had a pancreatectomy to remove 95-98% of my pancreas because it was producing way too much insulin, so I became diabetic as a result of that. However, the full story is below for if you are interested!
I was born at around half past midnight and for pretty much the next 20 hours I had seizures, fitting on and off. The midwife at that time claimed that “new born babies don’t have seizures” and decided I was cold, piling blankets onto me.
Thankfully my mum knew something was wrong, so at shift change when my mum’s friend who was a midwife came in to see how we were, she asked again. This time I actually had a seizure in the midwife’s arms so she grabbed a test kit.
I was 0.3 mmol/l (5 mg/dl).
The midwife presumed the BG kit was broken, so I was tested on a total of 3 machines, all reading 0.3. The midwife simply picked me up and ran. I was attached to a dextrose I.V for 3 days, unable to be without it, until the hospital where I was born finally called Great Ormond Street Hospital who had an idea.
I was shipped up to GOSH by ambulance and then lived there until I was 3 months old.
Throughout those months I had a variety of procedures and diagnosises, starting with Congenital Hyperinsulinsism. This meant that my pancreas was giving out a permanent stream insulin causing my blood sugars to plummet to dangerous levels if I was not on glucose.
They tried all the available medications – Diazoxide, Octreotide and a mixture of these alongside glucagon. Unfortunately they didn’t work, instead just giving me an awesome Mohican for a few weeks!
So, they decided to test how much of my pancreas was ‘malfunctioning’. There are two main varieties of HI: focal and diffuse. Focal means that only a small portion or multiple small portions of my pancreas are rotten so I could have those areas removed and I could potentially ‘grow out’ of HI. Diffuse means that the whole pancreas is bad so all of it needs to be removed so it is highly likely that the person would become diabetic 8-14 years later.
I had Portal Venous Sampling done (under general anaesthetic) and the result came back multi focal. Brilliant! A 60% pancreatectomy was scheduled.
That, of course, didn’t go to plan. 2 days before the operation a blood clot was found on the end of my Hickman line (used for giving glucose and testing blood), going in and out of one of my heart chambers. If it fell off the Hickman line I would have died. My mum was given the option of just pulling the line out or open heart surgery. She chose to pull it. So what would usually be a 20 minute procedure turned into a 4 hour one. Interestingly, it worked because I’m still here obviously, but the clot didn’t appear to come out with the line!
A while after that I had my pancreatectomy. It went smoothly and I was fine. Only problem was, it didn’t work. I continued having lows without the glucose drip and the doctors then told my mum that the portion of pancreas they had taken out was in fact diffuse (completely rotten) so I then had a 95-98% pancreatectomy. You can’t remove 100% of the pancreas because some of it is wrapped around the bile duct so it would be similar to scraping ink off of paper.
In fact, something happened to my bile duct in the second (major) surgery which was picked up on a scan when they noticed the top of it had swollen to 3x its original size. A bile duct bypass was performed, moving it to another part of my abdomen (not sure where!) and that was the last big surgery I had.
Anyway, back to the pancreas. Or lack thereof. Immediately after my second pancreatectomy my blood sugars started rising and after a week they couldn’t put it off any longer. So I was given my first insulin injection – 0.000025 units!
Sadly in those 3 months I had a number of blood transfusions which means I can’t donate blood which is highly frustrating.
My lack of pancreas also means that my diabetes is not identical to type 1, because I cannot produce glucagon either so my hypos can drop extremely fast and go very very low quickly. Sometimes when I have a low, my small bit of pancreas left will wake up and realise I’ve been given sugar and will decide to stick it’s nose in. This results in hypos that only go lower and lower, lasting for hours and occasionally requiring the glucagon, which I’ve had twice.
However, I can’t get ketones! Well, the highest I’ve ever had was 0.7 with bloods of 28. The doctors have speculated that it may be due to the fact I still produce my own insulin. But I’m not complaining, there is always a silver lining somewhere!
If you have a questions about my story or diagnosis stories you want to share (with HI or diabetes!) please feel free to comment, I’d love to hear others’ stories.