Hi all! New to the forum and newly diagnosed T1. Was admitted to hospital with DKA five weeks ago, and diagnosed at 37. I was in hospital for 10 days, three in ICU and then on the ward.
I cannot fault the nurses on my ward, they were wonderful and I will never, ever forget their kindness and compassion. But I feel I am having a shocker with the diabetic nurse and outpatient care. It’s making me feel very anxious, and Im usually a very laid back person. I’ll try to keep it brief, but I’m interested in other people’s experiences.
The DN came to see me a few days after I was admitted. I was on a feeding tube and drips. She showed me how to use the glucose kit, gave me a leaflet about hypos, about driving, and a magazine from a charity. She was with me about 10 mins. Told me to eat a “balanced diet” and then left. I was still pretty out of it.
I was on a fixed dose of fast acting and long acting insulin, and the nurses were injecting for me. Two of them showed me how to do it, so for my final two days in hospital I was doing that myself.
i was then given conflicting information about whether I should adjust my dose of insulin depending on how much I eat. A consultant said yes, and gave me a link to a website, a doctor said no, I was on fixed doses. My sugars were running high while I was in hospital, and my ketones were being checked regularly. I only had two ketone testing strips in my own kit to take home. When it came to discharge, I wasn’t ready because I didn’t have any clarity on my insulin dosing, nor did I have enough ketone strips to test with the frequency they had been doing. In the end, the sister told me to stay another night and that she would arrange for the DN to come and see me again to clear up my questions the next day.
DN said I was on fixed doses of insulin, and that she would call me in a week to get my testing numbers. I spoke to her the following week, and she increased my Novorapid by a unit at breakfast and lunch. The following week, my sugars were running high, and I became afraid of eating. I was tracking everything I ate, and reduced my carbs even further than I had since pre-diagnosis. I couldn’t get hold of the DN. I finally managed to speak to someone last week, who said I was due an appointment with the DN but it had been cancelled. I didn’t even know I had an appointment, let alone that it had been cancelled! I got quite upset, and she went through my numbers with me and increased my Lantus by two units, and my pre dinner novo by one. She said my nurse would call me this week.
My numbers are still high in the mornings - double figures, between 10 and 12, then sometimes higher before breakfast. I’ve further reduced my carbs in the mornings, so I’m now only having about 12g compared with about 30. Numbers are coming down after that for the rest of the day. But this restriction isn’t doing me any good. I’ve a history of eating disorders, and I lost a LOT of weight in the weeks leading to my diagnosis.
I’ve just had a separate call from outpatients cancelling an appointment that was scheduled with the endocrinology department, which was supposed to be tomorrow, but will now be on 17 August. I asked her to check when my next DN appointment is, and that isn’t until 17 July! So in the four weeks since I was discharged, I’ve spoken to my DN once, and have been left of a fixed dose of insulin. By 17 July it will be seven weeks since I was discharged, and six since I last spoke to her.
Is this normal?
So sorry to leave such an epic first post, I am so frustrated and stressed out about it and I didn’t know where else to turn.
I cannot fault the nurses on my ward, they were wonderful and I will never, ever forget their kindness and compassion. But I feel I am having a shocker with the diabetic nurse and outpatient care. It’s making me feel very anxious, and Im usually a very laid back person. I’ll try to keep it brief, but I’m interested in other people’s experiences.
The DN came to see me a few days after I was admitted. I was on a feeding tube and drips. She showed me how to use the glucose kit, gave me a leaflet about hypos, about driving, and a magazine from a charity. She was with me about 10 mins. Told me to eat a “balanced diet” and then left. I was still pretty out of it.
I was on a fixed dose of fast acting and long acting insulin, and the nurses were injecting for me. Two of them showed me how to do it, so for my final two days in hospital I was doing that myself.
i was then given conflicting information about whether I should adjust my dose of insulin depending on how much I eat. A consultant said yes, and gave me a link to a website, a doctor said no, I was on fixed doses. My sugars were running high while I was in hospital, and my ketones were being checked regularly. I only had two ketone testing strips in my own kit to take home. When it came to discharge, I wasn’t ready because I didn’t have any clarity on my insulin dosing, nor did I have enough ketone strips to test with the frequency they had been doing. In the end, the sister told me to stay another night and that she would arrange for the DN to come and see me again to clear up my questions the next day.
DN said I was on fixed doses of insulin, and that she would call me in a week to get my testing numbers. I spoke to her the following week, and she increased my Novorapid by a unit at breakfast and lunch. The following week, my sugars were running high, and I became afraid of eating. I was tracking everything I ate, and reduced my carbs even further than I had since pre-diagnosis. I couldn’t get hold of the DN. I finally managed to speak to someone last week, who said I was due an appointment with the DN but it had been cancelled. I didn’t even know I had an appointment, let alone that it had been cancelled! I got quite upset, and she went through my numbers with me and increased my Lantus by two units, and my pre dinner novo by one. She said my nurse would call me this week.
My numbers are still high in the mornings - double figures, between 10 and 12, then sometimes higher before breakfast. I’ve further reduced my carbs in the mornings, so I’m now only having about 12g compared with about 30. Numbers are coming down after that for the rest of the day. But this restriction isn’t doing me any good. I’ve a history of eating disorders, and I lost a LOT of weight in the weeks leading to my diagnosis.
I’ve just had a separate call from outpatients cancelling an appointment that was scheduled with the endocrinology department, which was supposed to be tomorrow, but will now be on 17 August. I asked her to check when my next DN appointment is, and that isn’t until 17 July! So in the four weeks since I was discharged, I’ve spoken to my DN once, and have been left of a fixed dose of insulin. By 17 July it will be seven weeks since I was discharged, and six since I last spoke to her.
Is this normal?
So sorry to leave such an epic first post, I am so frustrated and stressed out about it and I didn’t know where else to turn.
