Molly's Story - #NoNeedToDI

I have a rare form of hereditary central diabetes insipidus. I was diagnosed with DI at 5 years old after years of my mum pushing for tests to be done. It was not proven to be genetic until I was 16 years old when my family and I took part in a study by Professor Unwin. I have been on DDVAP 3 times a day since then and managed my condition well.

 I have struggled with medical professionals in the past, but my recent experience has left me feeling very anxious and cautious of seeking medical advice in the future.

On Tuesday 11th August I was admitted to hospital due to viral gastroenteritis, I was struggling to hold on to any fluids and was dehydrating rapidly. After three trips to A&E (the previous 2 trips I was given an IV drip and sent home with anti sickness medication) I was admitted to a ward I believed to be the endocrine ward and felt relieved that I was going to receive specialist care.

Unfortunately due to Covid-19 the wards at the hospital had been swapped over and I found myself instead on a dementia ward. The first couple of days I remained positive that the care I was receiving was helping, I was on an IV drip, being given regular anti sickness medication. Despite lack of sleep due to the nature of the ward, I was starting to feel a little better. However some issues had begun to spark doubt in my mind. The nurses were under instruction to check my blood sugars regularly despite me and my family explaining that this was not necessary due to the nature of DI. We were told that this was just routine for all patients in hospital. Also I was concerned that neither my blood or urine had been tested. My bloods had only been tested once during my stay (this was done on the day of admission). I was told that my sodium was a little low at the time but told that this is normal for someone with DI. I was asked if I knew what my normal was, to which I responded I didn’t know.

Thursday night I began to become unwell again, despite anti-sickness medication I began vomiting and was shaking uncontrollably. The nurse tested if I was pregnant despite me already confirming to them that I was not. They continued to check my blood sugars and were surprised that this did not change dramatically despite my vomiting. I explained again that it won’t change as I do not have diabetes mellitus.

Friday morning I began experiencing panic attacks as I felt no one was listening to me when I asked for blood tests and to see an endocrine doctor. I was told that I was being moved to the endocrine ward on Monday (17th) but that they would find me a side room so I could get some sleep and would be given continuing IV drips over the weekend. I was ‘reassured’ that I was just worrying unnecessarily and that I needed to ‘be strong’. 

I was moved to a side room however I began experiencing very strange and worrying symptoms, I couldn’t stop shaking, my eye sight had become blurry, I was confused and disoriented and couldn’t  remember what was happening. I remember asking that night why I had not been given a drip. I was told very firmly I did not need it and to get some rest. I began vomiting again that later that night and passed out in front of the nurses (something that was not noted in my discharge notes).

My symptoms continued into Saturday and I felt incredibly dehydrated.  Finally that afternoon I saw and doctor and was able to ask why my bloods had not been retested. She explained that they would not usually test bloods daily and that I shouldn’t be concerned, she did however concede that they should have been measuring my urine output. I was told that they would test my bloods at 5am the following morning.

I woke at 7am and asked when the phlebotomist would be round, I was told that she had already been. I rang my fiancé in distress as I felt that I was losing my mind, I was still very disoriented and was concerned that I couldn’t remember someone taking my bloods. The nurse then discovered that they had in fact missed me off of their list as I was ‘in the toilet at the time’. My bloods were then taken at 11am.

It was not until 9pm that the on-call endocrinologist came rushing onto the ward.  He told me very frankly that my sodium had dropped significantly to 117 mEq/L and that I was suffering from Hyponatremia. He told me that ‘people can die in this scenario’ and implied himself that I had not received the correct care.

Finally I felt I was getting the care I needed, my bloods were retaken, my blood sugars were not being checked unnecessarily, I was taken off of my Desmopressin and my urine was to be measured throughout the night. The urine measuring lasted all of two hours and I was left to measure it myself for the rest of the night. I was left off of my medication throughout Monday and my sodium had risen to 136 mEq/L. I was told to keep drinking water to stay hydrated and that I would not be given anymore IV drips. I found Monday night very hard as I had still not been moved to the endocrine ward and was without my DDVAP two nights in a row. I was feeling very tired and very thirsty!

This progress in the care I received felt short lived as the following morning (Tuesday 18th) my blood sugars were once again tested despite me pressing that this did not need this to be done. I was also told that the bed I had been told would be available on the endocrine ward had now been taken and that I would not be moved. Following a consultation with the endocrine doctor on that morning and good blood results, I asked to be discharged home and they agreed. I was told that I could restart my DDVAP but that needed to monitor my urine output at home.

I was asked to come back for blood tests the following morning with the ambulatory team which I did. Unfortunately my blood sodium had dropped slightly to 133 mEq/L and so I was told to return again after 3 days of only taking my DDVAP once a day. When I went back for the next blood test, I was told that my bloods are fine and I was discharged from their care. I, however, have been left with very little guidance on when to restart my DDVAP fully and was simply told to follow up with my consultant at Addenbrookes (I am waiting for an appointment).