Hi there, been a long time since I was on the forum, due mostly to OH retiring and me not having the alone time I needed to keep up!
Believe it or not I am a secretive person, yeah, ok, knew you wouldn't but worth a try anyway!
Up to finishing work the lower carb regime worked v. well, but, post retirement, not so much, due to OH wandering into the kitchen and perusing the contents of fridge and cupboards whenever the inclination took him. Now PERUSING is harmless, indiscriminate scoffing is another thing entirely! lol
So, a few months down the line he is put on INVOKANA,(canaglifozin) more on that l8r!
Another 12months or so and he is put on a very new insulin, brand name XULTOPHY.
ON 29th DEC 2016 he was feeling most unwell he was weak and fainting, first thought, HYPO! No!!! his BG was 14.8, more than twice his normal BG, so, as I had been told, I rang the diabetes specialist centre (not the hospital team) for advice. No-one available but I asked for a call back. NONE CAME!
2 hours l8r, with more fainting and BG 15.9 I rang again. At that stage it was apparent that my request was forgotten and no-one had even triaged the call. I was told 'a colleague is looking at it now' the advice was to keep him in bed and give him plenty of fluids. Mmm
Next morning (30th Dec) OH collapsed in the bathroom, unable to move, first thought STROKE! First action BG, 25.9!!!!
Went to flush the loo and saw blood in his faeces.
Rang 111, thank goodness it was 6am so I was soon speaking to an operator and at the mention of the high BG and the blood she dispatched an ambulance immediately. The crew took his BP and it was incredibly low, his BG was higher still and they tested for ketones, I believe that was 4.5. A paramedic was called, arrived in minutes, his assessment was internal bleeding with DKA as a complication. OH had to be given oxygen as he was transported to the resus unit at the local hospital and he was literally dying when admitted. He had blood and platelets before an endoscopy was done which confirmed the upper GI bleed but was unable to pinpoint the exact location.
I left him on the acute medical ward waiting to go for a scan to find the leak.
At 1am on 31st Dec OH was transferred as an emergency to Sheffield, Northern General Hospital, as the bleed was still not located and he had by this time had 8 units of blood and 3 of platelets + other intravenous goodies.
Northern General foung the bleed and tried to stop it through angio but it was too extensive. Surgery was the only chance and I was warned that it was possible he could not be helped, even if they could stop him bleeding the risks of abdominal surgery were not to be underestimated.
The surgeons found that there was some kind of diverticular disease which was in the jujenum, the first bit of the small intestine. As far as they could be sure that was the root of the problem, we were told it was definitely abnormal and it looked like the only likely culprit and that he would be monitored closely for any drop in BP alerting them to further bleeding.
Now, the point of all this.....
Patients taking CANAGLIFOZIN, according to the FDA, are liable to have DKA when their BG is not at a level when it would normally be suspected. This I think is something any Diabetes specialist should know, they must know that T2s aren't told about ketones. IMHO this is a lapse of judgement. Had I known, had I had a way of testing for ketones, I would have had him in hospital straight away. It is my belief that had the triage been done properly and the canagliflozin taken into account then the nurse would have visited and seen how ill he was, or would have asked me to take him to hospital where the underlying problem would have been found 18 hours earlier.
My husband was practically dead in my arms, because T2s are only warned about hypos.
Now we wait to see the surgeon on 23rd February to find out if there is liable to be any recurrence of the. diverticulosis.
We have been so lucky, from dialing 111 that morning everything lined up right. If one single thing had been different it would have been too late.
If anyone has the patience to read to the end of this it's a warning, get some ketone test strips, (yes Patti, doc prescribed them as soon as OH was discharged) OH has ketones when his BG is 13.5, we test with the new meter that the hospital diabetes team gave us now tho as urine readings are about 2 hrs behind blood readings. Also OH said he had a metallic taste in his mouth a few days before he was taken ill. Hospital spec. nurse says that was also an indication of DKA.
Knowing any of this could have been the difference between life and death, also, being diabetic actually is what probably saved my husbands life.
footnote. 2 days after he came home we saw what we thought was blood, again. Rang 111, woman was dismissive so I said if I was worried I would ring 999 she said they would only pass it back to them as they were really busy. My response was that in light of what had happened I didn't think so! So she said that I could speak to a clinician He insisted that if he was bleeding from as high up as the jujenum then he would be vomiting blood, not have blood in his faeces. Told him I knew the difference between blood and faeces and that the surgeon who did the op knew he had not vomited blood prior to the op. Told him we might need to get his BP checked if we thought there was a problem. Told we could go to the ER drop in clinic BUT ONLY BY RINGING FOR AN APPOINTMENT first!
Thank goodness we didn't encounter this team of clowns at New Year