Tee Clarke

Tee Clarke, 32, shares her experience living with NIPHS (nesidioblastosis), severe hypoglycaemia and undergoing a near-total pancreatectomy in Sydney.

Hello! I just wanted to write an update regarding my near-total pancreatectomy surgery that I had on the 10th of February (nearly 4 weeks ago)! 

For context, I am based in Sydney, Australia. 

My surgery went exceptionally well - I had no complications at all (no infection, bleeding, no pneumonia, etc.). 

I had open surgery - so I had a large transverse incision - called a chevron or rooftop incision that extends from 1 side of my abdomen to the other side of my abdomen (about 35cm long). My surgeon was able to reconstruct my splenic artery and preserve my spleen. 

After surgery I woke-up in the ICU and spent 3 days there, I had a nasogastric tube to help with vomiting, a central line (CVAD), arterial access line, several peripheral IVs, a vacuum dressing, drain and I had really, really good pain relief. I was also administered Octreotide at this time to "rest" the remaining pancreas. 

I spent a bit longer in ICU because I had big fluctuations in my blood glucose levels - 18mmol, dropping to below 3.0mmol within minutes (but I was totally unaware of this due to the pain relief lol). 

I don't remember much as my husband said I slept 23 hours out of a 24 hour day. I had a few bouts of vomiting and know that the first few days of getting out of bed and walking was incredibly difficult, but totally doable. 

My blood sugars came good and I was moved to the ward, again I slept for probably 3 days straight on the ward - though I was much more mobile (when I was awake lol) and started a very light diet. I had my first dressing change on day 6 (which was excruciatingly painful lol but short-lived) and my drain came out on day 7. I was taken off IV pain-relief by day 6 and switched to oral pain relief. By day 8, I was feeling pretty amazing, up and walking good distances, albeit sore. I was allowed to eat whatever I wanted and for the first time in so many years I had meals with fast acting CARBOHYDRATES! I was so excited haha

I was discharged home on day 9 after some enzyme and diabetes education with a diabetes nurse and a prescription for insulin (just incase I develop diabetes). Enzymes haven't started yet as I've had no symptoms of insufficiency just yet. 

Since discharge, I've only needed paracetamol and anti-inflammatories for pain relief, and have had no issues with mobilising about (in-fact, the pain has been so manageable, it's more a case of me not doing too much). Fatigue has also been a non-issue, I have so much more energy than before the surgery! 

The most important part: 

My blood sugars!!! 

Just to preface, I was advised that how my blood sugars behave at current is not indicative of the surgical outcome (due to inflammation, fluctuations in hormones and I guess the fact that my entire physiology has just been altered). 

I have had some big fluctuations and whilst in hospital I was frequently hitting hyperglycaemic ranges (though given it was short-lived, it wasn't harmful). Since discharge, I had a week of dipping just into the hypo ranges (nothing like before) but interestingly, I was completely asymptomatic and my body would correct itself. 

The last week (and I've been feeling fantastic), my blood sugars have been perfect!! Gently rising to 6-8mmol after a meal, before gently dropping to 4.5mmol. 

It's the happiest I've been in years!

Not to mention being able to stop diazoxide (I was on 400mg per day and I weigh 48kg - so I think I was on 8-9mg/per kg of body weight) and hydrochlorothiazide (75mg per day) has been wonderful! On diazoxide I was carrying approximately 3-4kg of fluid daily, and sometimes it would jump to 5kg depending on the heat. I was often breathless and mobilising was difficult. I also had several episodes of moderate hypokalaemia which made me feel awful. 

I know it's early days, but I can't explain how happy I am that I did the surgery. I know that I was also very lucky to have my surgery performed by one of the best pancreatic surgeons in Australia, the most beautiful anaesthetist, and I have the best, best, best endocrinologist - and these things make a huge difference to the outcome. I am really am grateful for the team I have. 

I wanted to share incase others may be considering this option - it's a huge decision to make, it's permanent altering of your physiology and my understanding is that it is a very big, complex, risky surgery (including diabetes and pancreatic insufficiency) that usually takes a long time to recover from (I think my age has been hugely advantageous in helping my recovery along) and my experience has been nothing but positive because of the wonderful doctors and nurses. But I made the decision after having a really awful reaction to Octreotide (vomiting, worsening of blood sugars, crippling fatigue and joint pain), dietary and lifestyle adjustments made no difference, and I was on big doses of diazoxide and diuretics that had significant side-effects that were not sustainable and at times, quite dangerous + I still had hypo's. 

From the onset of my symptoms several years ago, I also lost a lot of weight, despite eating significant amounts (in 6 months I lost 18% of my body mass and went down to 42kg - though I've regained weight since!). The loss of weight only worsened the hypo's and at the height of the disease, I was having lows anywhere from 3.0mmol to 1.9mmol, 18 times per day. I also had fasting hypoglycaemia, with my CGM showing that I spent hours sleeping at 2.2mmol. This disrupted my sleep hugely - with bad night sweats, night terrors and the need to get up and eat due to the extreme hunger. 

For me, the risks of the surgery and being medically refractory made the decision quite clear.

I hope this has been helpful for others :)